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Heart and Soul Your Guide to Living with Congenital Heart Disease

www.heartandstroke.ca

C O M PA S S R O S E

L E AV E S

DIFFERENT DIRECTIONS

GROWTH

THE JOURNEY

L O O K I N G F O RWA R D

P O I N T I N G T H E WAY

CHANGING ASPECTS

WIND BLOWING

SUNSHINE

C O N S TA N T C H A N G E

POSITIVE

THE UNKNOWN

I M P ROV E M E N T

FAC I N G T H E S TO R M

OPTIMISM

The Heart and Stroke Foundation thanks Imperial Oil Foundation for providing funds to make the development of H E A RT A N D S O U L : YO U R G U I D E TO L I V I N G W I T H C O N G E N I TA L H E A RT D I S E A S E possible.This support does not imply an endorsement by the Foundation of the products and services of Imperial Oil Foundation.

*Registered trade mark of Imperial Oil Limited. Used under license.

The content of this education resource has been independently researched and reviewed by the Heart and Stroke Foundation, and is based on scientific evidence.

Cat: HP6101E V1.0

INTRODUCTION

FROM A PARENT WELCOME TO HOLLAND

By Emily Perl Kingsley

I

am often asked to describe the experience of

But, after you’ve been there for a while and you

raising a child with a disability - to try to help

catch your breath, you look around you and begin

people who have not shared that unique experience

to notice that Holland has windmills. Holland even

to understand it; to imagine how it would feel.

has Rembrandts.

It’s like this . . .

But everyone you know is busy coming and going When you’re going to have a baby, it’s like planning

from Italy, and they’re all bragging about what a

a fabulous vacation trip to Italy.You buy a bunch

wonderful time they had there. And, for the rest

of guidebooks and make your wonderful plans. The

of your life, you will say,“Yes, that’s where I was

Coliseum, Michelangelo’s David, the gondolas of

supposed to go. That’s what I had planned.”

Venice.You may learn some handy phrases in Italian.

It’s all very exciting.

And the pain of that will never, ever, ever, go away, because the loss of that dream is a very

After months of eager anticipation, the day finally

significant loss.

arrives.You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says,“Welcome to Holland.”

But, if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special and very lovely things

“Holland?” you say. “What do you mean ‘Holland’?

about Holland.

I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy; less flashy than Italy.

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HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

INTRODUCTION

ACKNOWLEDGEMENTS

Our gratitude to the health care professionals who contributed their time and expertise to make this project possible: Primary Authors Laurie Cender, RN, MSN, Clinical Nurse Specialist Mary Spencer, RN, MSN, Clinical Nurse Specialist Norma Becker, RN, BN, Nurse Clinician Mandy Johnson, RN, Nurse Clinician Bindy Sweett, CCLS, Child Life Specialist Editors Lark Susak, RN, BScN, Susak Management Associates Heather MacDonald, Wordplay Documents Inc. Contributing Authors Dr. Michael Patterson, MD, Pediatric Cardiologist Dr. Jacques LeBlanc, MD, Pediatric Cardiothoracic Surgeon Vikki Lalari, MSc, RDN, Dietitian Christine Imms, Occupational Therapist Frances Jones, Lactation Consultant Stella Cockett, RN, BSN, Nurse Clinician Chris Cameron, BSc Pharm., RCSHP, Clinical Pharmacist The staff of BC’s Children’s Hospital, a part of Children’s and Women’s Hospital of BC Dr. Shubhayan Sanatani, MD, Pediatric Electrophysiologist Rosella Jefferson, RN, MSN

Colleen Corder, Children’s Heart Network

Elizabeth Dozois, MA & Ralamy Kneeshaw, MA, Word on the Street Consulting, Calgary, Alberta

Project Managers Ronnalea Hamman, Manager Marketing, Heart and Stroke Foundation of B.C. and Yukon

Montreal Children’s Hospital, Montreal, Quebec Michele Zegray, RN, MSc(A) Devon Leguillette, BScN

Special thanks to: Heart Beats - Children’s Society of Calgary for allowing us to use material from Heart Beats: A handbook for families and children with special hearts.

Children’s Hospital of Eastern Ontario, Ottawa, Ontario Lynn Lynch, RN Susan Paquin, BScN Claudette Boilard, MSW

Department of Cardiac Sciences, B.C.’s Children’s Hospital, for allowing us to use material from Knowing but not knowing.

Hospital for Sick Children , Toronto, Ontario Erica Mozolanczki, RN, MN Jennifer Kilburn, BSN Dr. Lee Benson Sharon Murphy, RN

Department of Oncology, B.C.’s Children’s Hospital, for allowing us to use material from Children with cancer: A handbook for families.

The authors would like to thank the following Paediatric Cardiac Centres for their help in reviewing this book: Janeway Hospital, St John’s, Newfoundland Charlene Daley, BN Dr. S.Shah, MD Dr. C Templeton, MD IWK-Grace Health Centre in Halifax Sharon McIntyre, RN Donna King, BN Christine Farah, BN Todd Currie, MSW Tina Strickland, PDT-CCT Kate Morrison, CLS Darlene Boliver, Quality Coordinator Dr. John Finley, MD

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

Variety Children’s Heart Centre, Winnipeg, Manitoba Lea Legge, RN Sheila Hutton, BN Gary Robinson, MSW Dr. R Soni, MD Dr. Divekar, MD Stollery Children’s Hospital, Edmonton,Alberta Lois Hawkins, MSN and the Cardiac Team Alberta Children’s Hospital, Calgary ,Alberta Patty Knox, RN Dr J. Harder, MD Dr. D Patton, MD Dr. M Giuffre, MD Thank you to the many parents and other family members who provided the quotes about their experience that are displayed in the sidebars throughout the book.

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INTRODUCTION

TABLE OF CONTENTS 1. ABOUT THIS GUIDE

___________________________________ 1-1

2. CONGENITAL HEART DEFECTS

What is a congenital heart defect? __________________________ 2-2 How the heart and blood vessels work ___________________ 2-2 Before birth—mother provides what baby needs _______ 2-5 After birth ________________________________________________________ 2-6 How do you find out if your baby has a CHD? __________ 2-7 Congestive heart failure _______________________________________ 2-8 Cyanosis—blueness of skin _________________________________ 2-11 Infection called bacterial endocarditis ____________________ 2-14 3. COPING WITH YOUR CHILD’S DIAGNOSIS

Accepting your feelings ________________________________________ 3-1 Talking about your feelings ____________________________________ 3-2 Changing your expectations __________________________________ 3-2 Telling your family and friends _______________________________ 3-2 Building your support team __________________________________ 3-3

7. GROWING UP WITH A CHD

Babies and toddlers ____________________________________________ 7-1 Preschoolers _____________________________________________________ 7-5 Local resources for children with developmental delays _________________________________ 7-7 School-aged children ___________________________________________ 7-9 Teens and transition __________________________________________ 7-14 8. JUST FOR TEENS—TAKING CHARGE

What do I need to know about my heart condition? ____ 8-2 Treatments, tests and medications __________________________ 8-4 Advocacy _________________________________________________________ 8-5 Choosing your own family doctor __________________________ 8-6 Your emergency plan __________________________________________ 8-8 Feeling good about your body _____________________________ 8-10 Expressing yourself ___________________________________________ 8-12 Planning your future __________________________________________ 8-14 Medications do not mix _____________________________________ 8-20 Graduation checklist _________________________________________ 8-21

4. VISITING THE HOSPITAL

Locating places and people ___________________________________ 4-1 Staying overnight at the hospital _____________________________ 4-3 Visiting the cardiology clinic __________________________________ 4-4 5. NAVIGATING THE HEALTH CARE SYSTEM

Working with the health care team ________________________ 5-1 Planning care for a child with multiple needs _____________ 5-3 Financial concerns ______________________________________________ 5-4 6. COPING WITH STRESSFUL TIMES

Partners ___________________________________________________________ 6-1 Family and friends _______________________________________________ 6-4 Sharing emotions _______________________________________________ 6-4 Survival strategies for single or divorced parents __________________________________________ 6-5 Money matters __________________________________________________ 6-7 Siblings ____________________________________________________________ 6-7 Grief and bereavement ______________________________________ 6-11

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9. CARING FOR A CHILD WITH A CHD

Giving your child medications ________________________________ 9-1 Medication list ___________________________________________________ 9-4 Medications commonly given to a child with a CHD ___ 9-5 Immunizations _________________________________________________ 9-12 Nutrition and feeding ________________________________________ 9-12 Dental care _____________________________________________________ 9-17 Complimentary and alternative therapies _______________ 9-18 Including cultural and spiritual beliefs in your child’s care ________________________________ 9-21 10. IF YOUR CHILD NEEDS SURGERY

Preparing for surgery ________________________________________ 10-1 Pre-surgical assessment and preparation _________________10-4 The day of surgery ____________________________________________ 10-5 In the operating room _______________________________________ 10-6 After the surgery _____________________________________________ 10-8 After intensive care ________________________________________ 10-14

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

INTRODUCTION

TABLE OF CONTENTS 11. PREPARING FOR AN EMERGENCY ___________ 11-1 12. ADDITIONAL SUPPORTS AND RESOURCES

Internet resources ____________________________________________ 12-1 References ______________________________________________________12-3 13. RECORD KEEPING

Directory _______________________________________________________ 13-5 14. GLOSSARY

Who’s who on your health care team? __________________ 14-1 What’s what at your child’s bedside? ______________________14-3 Heart words ____________________________________________________ 14-5 15. APPENDIX A: DIAGNOSTIC TESTS

Blood analysis (bloodwork) ___________________________________ 15-1 Chest x-ray _____________________________________________________15-2 CT scan __________________________________________________________15-3 Echocardiogram (echo, cardiac ultrasound, or transthoracic echo) ________________________________________ 15-4 Electrocardiogram (ECG or EKG) __________________________ 15-5 Exercise echocardiogram ___________________________________ 15-6 Exercise test (stress test) ______________________________________15-7 Heart catheterization ________________________________________ 15-8 Holter monitoring __________________________________________ 15-11 Lung scan ______________________________________________________15-12 Magnetic resonance imaging (MRI) ______________________ 15-13 Oxygen saturation test (“SATS” or oximetry) ___________ 15-14 Sestamibi scan (MIBI) _______________________________________15-14 Tilt table test _________________________________________________ 15-15 Trans-esophageal echocardiogram ______________________ 15-16 16. INDEX

________________________________________________________ 16-1

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

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1

ABOUT THIS GUIDE Finding your way

This guide, Heart and Soul, has in-depth information for you about congenital heart defects in children. Some of the information will be helpful now and some will be helpful later.You can use it in your own way.

Suggestions for using this guide “We know in our

Check the table of contents to see the topics.You can read the sections in any order and skip any sections that you don’t need right now.

Here are some other tips for using this guide: You might want to share this guide with family or friends who want to help or understand your child’s heart defect.

Consider using this binder as a place to

keep all the information about your child’s health. For example, you may want to include your child’s medical records or handouts from pharmacists or the Cardiology Clinic. Jot your own notes on the pages.

As you talk to health specialists, they will be using some medical words that you may not know.The glossary at the end of this guide explains those medical terms.Words in bold face can be found in the glossary.

Be patient with yourself.You don’t need to know everything all at once. It is very difficult to understand information when you are stressed or emotionally exhausted. If you are overwhelmed by the information you have been given, take your time.

hearts that, whatever road Bridget goes down, she will remain strong and always have us right behind her.”

PA R E N T

Some people want to read about heart defects because it gives them more control over the situation and it gives them more information for decisions.

Not all problems in this book will happen

to you or your child. Every family is different, and heart defects are not all the same.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

1-1

2

C O N G E N I TA L H E A RT D E F E C T S What’s here

This section provides some information about the cardiovascular system—the heart, valves, and blood vessels, before and after birth. It also provides general information about congenital heart defects (CHDs) and related health concerns.

The topics include: What is a Congenital Heart Defect? How the Heart

WRITE & ASK A TIP FROM THE

and Blood Vessels Work Before Birth—Mother Provides What Baby Needs

H E A LT H C A R E T E A M

After Birth How To Find Out If Your Baby Has a CHD Congestive Heart Failure Cyanosis Infection Called Bacterial Endocarditis

W R I T E D OW N YO U R Q U E S T I O N S A S YO U THINK OF THEM AND

Diagram of a Normal Heart

D O N ’ T B E A F R A I D TO ASK QUESTIONS

blood from upper body

aorta to body

superior vena cava

to lungs

main pulmonary artery

pulmonary veins from lungs septum pulmonary valve

pulmonary veins from lungs

LEFT AT R I U M

mitral valve

RIGHT AT R I U M LEFT VENTRICLE

tricuspid valve

aortic valve

RIGHT VENTRICLE

inferior vena cava septum

blood from lower body

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

aorta to lower body

2-1

C O N G E N I TA L H E A RT D E F E C T S

W H AT I S A C O N G E N I TA L H E A RT D E F E C T ?

COMMON D E N O M I N AT O R C H D S H A P P E N TO A B O U T O N E I N E V E RY ONE HUNDRED BABIES

“Congenital defect” comes from the words congenital, meaning “existing at birth” and “defect”, meaning a problem. The heart is completely formed by the 8th week of pregnancy. If a problem occurs in the way the heart or the blood vessels close to the heart are formed the baby is born with what is called a congenital heart defect, CHD for short. Congenital heart defects are sometimes called congenital heart disease.

THEY ARE MORE COMMON THAN ANY OT H E R T Y P E O F C O N G E N I TA L D E F E C T

About one of every one hundred babies born has some form of heart defect (i.e., 1%).This ranges from a tiny hole that will never require treatment to a life threatening heart defect.

Sometimes a CHD is associated with other health problems. For example, babies with Down Syndrome often have a particular heart defect.

H OW T H E H E A RT A N D B L O O D V E S S E L S WO R K Every cell in the body needs oxygen and nutrients to work properly.The cardiovascular system (from “cardio”, meaning heart, and “vascular”, meaning blood vessels) refers to the heart and blood vessels by which blood carrying oxygen and nutrients is pumped throughout the body.

THEY ARE MORE COMMON IN CHILDREN W I T H OT H E R

Diagram of Heart, Lungs, Alveoli and Capillaries

CONDITIONS SUCH AS D OW N S Y N D RO M E

superior vena cava

left lung

right lung

RIGHT AT R I U M

inferior vena cava pulmonary vein to left heart pulmonary artery from right heart alveoli (air sac)

2-2

capillary plexus

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

C O N G E N I TA L H E A RT D E F E C T S

The heart is a two-sided pump Your child’s heart is a hollow, muscular organ about the size of a child’s fist. It is located between the lungs, slightly to the left of the middle of the chest.

Here are the main parts or the heart: a wall made up of membranous and muscular areas called the septum, divides the right and left sides of the heart, two chambers on each side of the

heart—the upper ones called atria, collect blood, and the lower ones called ventricles, pump blood out, small doors called valves open and close

when the heart beats, the great vessels—the aorta, which takes

blood rich in oxygen returns to the heart

through the pulmonary veins to the left atrium, the left atrium squeezes, which forces

the blood through the mitral valve into the left ventricle, the left ventricle squeezes, which pushes

the aortic valve open, with each beat of the heart, blood rushes

through the aortic valve into the aorta, which branches into smaller arteries that supply the body with oxygen-rich blood, blood rushing through the arteries creates

a pulse you can feel with your fingertips (pulse rate depends on how fast the heart must beat to send blood to all parts of the body).

blood to the body, and the pulmonary artery, which takes blood to the lungs.

How does the heart work?

Clench your fist, relax it, and clench it again.

This squeezing and relaxing is similar to how the heart beats or contracts.

The heart collects oxygen-poor blood, pumps it to the lungs to get oxygen and then pumps it out to the body through arteries.

Here is the series of actions: the right atrium, a collecting chamber, receives oxygen-poor blood (blood that looks bluish), the right atrium contracts (squeezes), which

pushes open the tricuspid valve (the door to the right ventricle) and the blood moves through the valve to the right ventricle, the right ventricle, a pumping chamber, con-

tracts, which pushes open the pulmonary valve (the door to the pulmonary artery),

The electrical system (Please refer to the diagram on page 2-4)

ELECTROCARDIOGRAM

The heart’s own electrical system makes it beat through a series of actions: the sinoatrial node (SA node), the

heart’s natural pacemaker located in the right atrium, causes the atria to contract and pump out blood, the signals travel to the atrioventricular

node (AV node), the AV node delays the signal slightly, which

allows the blood to pass from the atria to the ventricles, the AV node sends the signal to the

ventricles, causing them to contract.When the nodes are working well together, the heart pumps blood into the lungs and to the rest of the body. If the electrical system is interrupted, this may cause an irregular heart rhythm.

the pulmonary artery carries blood low in

oxygen to the lungs, where carbon dioxide is removed and oxygen is added, HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

2-3

C O N G E N I TA L H E A RT D E F E C T S

SA node

electrical impulses AV node bundle of HIS

DY S R H Y T H M I A S

CHDs, the blood leaving the heart does not become filled with oxygen and the child appears blue (see Cyanosis—Blueness of the Skin, page 2-11).

Blood delivery through the blood vessels

Electrical problems affecting the heart rate or rhythm are called dysrhythmias, and include:

Blood is delivered by a network of blood vessels, including arteries, veins, and capillaries: the arteries carry blood away from the heart,

B R A DY C A R D I A ( A S L OW E R T H A N

the veins carry blood back to the heart,

N O R M A L H E A R T R AT E )

purkinje fibers

TA C H Y C A R D I A ( A FA S T E R T H A N N O R M A L H E A R T R AT E )

F I B R I L L AT I O N (A DISORGANIZED OR IRREGULAR H E A R T B E AT )

Healthy blood The blood has many different parts.

The main parts are: red blood cells, which carry oxygen to the body, white blood cells, which help fight infection, platelets, which help the blood to clot, plasma, which contains protein such

the capillaries (tiny blood vessels connecting

the arteries and veins) allow oxygen and nutrients to be delivered to the cells and waste products to be picked up.

Blood pressure Blood pressure is a measure of the pressure against the walls of the arteries.The first number is called the systolic pressure, and the second number is called the diastolic pressure.

For example, a blood pressure of 120/80 means 120 systolic, 80 diastolic.

as albumin.

Oxygen is needed by every part of the body.

The red blood cells carry oxygen around the body.

The oxygen attaches itself to haemoglobin, a part of a red blood cell.When the haemoglobin is full of oxygen, the blood looks bright red.When the oxygen level is low, the blood looks purple or blue.

Here’s an explanation.The heart muscle contracts and relaxes in a rhythm: contraction (or squeezing), when blood is squeezed out of the heart, is called systole (pronounced “SISS-tow-lee”), relaxation, when the heart refills with

blood, is called diastole (pronounced “die-AS-tow-lee”), when the heart contracts, a wave of blood

The cells use the oxygen, and the waste product is carbon dioxide.

When blood rich in oxygen leaves the lungs to be pumped around the body, it normally looks red. Blood returning to the heart is low in oxygen and high in carbon dioxide and normally looks blue.With some types of

2-4

is pushed out of the heart, putting pressure on the walls of the artery, when the heart relaxes, pressure in the

arteries lessens.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

C O N G E N I TA L H E A RT D E F E C T S

Blood pressure can be too high (hypertension) or too low (hypotension). Possible causes of hypertension include: a) a structural defect of the aorta, b) a change in blood flow to the kidneys or kidney disease or c) a change in the flow of blood through the small blood vessels. Possible causes of hypotension include: a) the heart not pumping blood effectively, b) a side effect of certain medications, or c) if there is not enough blood going through the body.

BEFORE BIRTH—MOTHER PROVIDES WHAT BABY NEEDS Before a baby is born, the placenta in the mother’s womb does the work of the lungs adding oxygen and removing carbon dioxide.

Oxygen in the mother’s blood moves across the placenta into the baby’s blood.This oxygen rich blood is then carried via the ductus venosus and inferior vena cava (IVC) into the baby’s right atrium.

As the baby doesn’t use its lungs to breathe until after birth, most of the blood bypasses the lungs through two connectors: the foramen ovale allows most of the blood to pass from the right atrium to the left atrium, a blood vessel called the ductus

arteriosus carries the blood from the pulmonary artery into the aorta.

BLOOD PRESSURE BLOOD PRESSURE C A N B E TO O H I G H IF SOMETHING IS BLOCKING THE

Before birth, most babies with CHD do not have any problems because the placenta provides oxygen-rich blood to the baby and because oxygen needs in the womb are lower than after birth. Once the baby is born and the umbilical cord is cut, the mother’s and baby’s bodies become separate. Newborns have to rely on their own lungs and heart for the blood and oxygen they need.

B L O O D F L OW

BLOOD PRESSURE C A N B E TO O L OW I F T H E H E A RT I S N OT B E AT I N G W E L L

When the baby takes its first breath, the increase of oxygen in the blood and changes in pressure in the heart and lungs encourages the foramen ovale and the ductus arteriosus to close over the first few days of life. In some babies, these openings do not close when they should.

Prenatal Blood Flow blood from upper body superior vena cava pulmonary veins from lungs

foramen ovale

inferior vena cava blood from the placenta via the ductus venosus

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

aorta to body ductus arteriosus main pulmonary artery pulmonary veins from lungs

aortic valve

septum

descending aorta

2-5

C O N G E N I TA L H E A RT D E F E C T S

AFTER BIRTH

How do CHDs affect the heart after birth?

THE RISKS

Two things that increase the risk of a congenital heart defect are: M OT H E R S C O N D I T I O N W H E N A WO M A N I S P R E G N A N T, W H A T

CHDs can affect the heart in many ways: many CHDs slow down or block the blood flow in the heart or in the blood vessels near the heart, other CHDs cause blood to flow through

the heart in an abnormal way and make the heart work harder.

H A P P E N S TO H E R B O DY CAN AFFECT THE

What causes CHDs?

DEVELOPMENT OF H E R B A B Y ’ S H E A RT

F A M I LY H I S T O R Y IF SOMEONE IN Y O U R F A M I LY H A S A C O N G E N I TA L H E A R T

No one knows what causes most heart defects.You may hear the term “multifactorial causation”.This means that no one thing causes the defect:When certain genetic and environmental factors occur at the same time, a heart defect may result.

D E F E C T, T H E C H A N C E T H AT Y O U R B A B Y W I L L A L S O H AV E A D E F E C T INCREASES FROM

Two things that increase the risk of getting a congenital heart defect are the mother’s condition and family history.

A B O U T 1 % TO 3 %

MOTHER’S CONDITION: When a

heart. For example, illnesses such as diabetes (a disease in which the body doesn’t properly produce or use insulin), rubella (German measles), or viral infections can increase the risk of a heart defect.The risk also increases if the mother takes certain prescription or over-the-counter medications (for example, phenytoin, which prevents seizures, Accutane, which is used to treat acne, and lithium salts, which are used to treat certain mental illnesses) or consumes alcohol or “street” drugs.

FAMILY HISTORY: If you are the parent

of a child with a CHD, the chance of having another baby with some form of CHD increases from about 1% (one in every 100 births) to at least 3% (3 in 100 births).

More than one child in a family may have a congenital defect, but this is rare.

Medical experts can identify those parents who have a higher risk of having a child born with a CHD, based on the mother’s condition or the parents’ family histories. However, scientists cannot predict which parents will have a child with a CHD because there may be many other reasons besides the mother’s condition and family history.

woman is pregnant, what happens to her body can affect the development of her baby’s

Postnatal Blood Flow

blood from upper body

aorta to body

superior vena cava

main pulmonary artery

pulmonary veins from lungs

pulmonary veins from lungs

aortic valve inferior vena cava blood from lower body

2-6

septum descending aorta

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

C O N G E N I TA L H E A RT D E F E C T S

Did I do something wrong?

Many parents worry that it is something they did or did not do that caused the heart defect.

In most cases, there is nothing the parents could have done to prevent the defect. If you have questions about the cause of your child’s heart defect, talk it over with your cardiologist or health care professional.

H OW TO F I N D O U T I F YO U R CHILD HAS A CHD Advancements in technology and medical science have resulted in the ability for many CHDs to be diagnosed antenatally, or prior to birth. Some families are told of their child’s diagnosis of CHD shortly after birth because of signs and symptoms noticed on newborn physical assessments in hospital.

Other children are diagnosed with CHD in infancy or childhood through referral to a pediatric cardiologist.

interview in an exam room or office. A clinic nurse or medical student may also be there.

Your child’s “history” A history is a review of your child’s health concerns up to now, including pregnancy and birth history.Your doctor will ask how severe the problem is, when the symptoms happen and under what conditions, how long the symptoms last, what helps, and what makes them worse (for example, exercise or medications).

A physical exam The physical exam includes a detailed checkup of your child and your child’s heart.

During the exam, the doctor may check: Chest sounds, including the sounds the heart makes as it beats, and the sound of air moving into and out of the lungs.To do this, the doctor will listen with a stethoscope at various places on the front and back of the chest.

The chest wall, for abnormal motion and

To find out if a child has a CHD, pediatric cardiologists review your child’s history and do a physical exam.To get more information, the doctor may order one or more of the tests in Appendix A. Not all of the tests may be needed, depending on your child’s condition. Some of the tests may be repeated or ordered later to check on your child’s progress.

In Appendix A, you will find information about the purpose of each test, what will happen during the test, how you can prepare your child, and when you will get the results.

vibrations of the heart.To do this, the doctor will place or cup a hand on your child’s chest (back and front).

The abdomen (stomach), for organs which

are larger than usual or for fluid build-up.

To do this, the doctor will gently press on the abdomen.

Oxygen saturation level (see Appendix A).

Height and weight.

The pulses in your child’s arms and legs.

History and Physical Exam How are the history and physical exam done?

The history and physical exam will be done during a visit to the cardiology clinic.You will meet with your cardiologist for a private

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

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C O N G E N I TA L H E A RT D E F E C T S

How can we prepare for this visit?

You can prepare by having the following information ready for the doctor: any symptoms your child may have related to his or her heart problem, P R E P A R AT I O N

Let your child know he or she may have to: G E T U N D R E S S E D,

ASSESSMENT

E X P L A I N T H AT Y O U WILL BE THERE

The visit with the doctor (pediatric cardiologist) may take from 30 minutes to a few hours, depending on the number of tests needed.

activity level (is your child more or less

active than usual?), feeding schedule (how often and how

much does your child eat/drink/breastfeed, and does your child become tired during feeding time?),

A N D W E A R A G OW N FOR THE PHYSICAL

How long will it take?

medications (names and doses of any

medications your child is on, including medications for other health problems), any other concerns you have about your

child’s health.

DURING THE EXAM

This is your chance to ask questions and have an open and honest talk. Some parents find it helpful to write down their questions in the week before their visit, so they don’t forget anything.

How can we prepare our child for this visit?

Let your child know he or she may have to get undressed, and that the doctor will need to touch some areas on your child’s body, (such as the chest or groin) and that you will be there during the physical assessment.

Gowns are available for older children. Parents may be present for infants and young children.

Youth may prefer to go in by themselves and spend some time alone with a doctor. A chaperone will be available if they want.

CONGESTIVE HEART FAILURE (CHF)

What is CHF? Congestive heart failure (CHF) results when the heart is unable to pump an adequate amount of blood to meet the needs of the body. CHF refers to a group of signs and symptoms that include poor feeding, rapid breathing, sweatiness, rapid heart rate, and failure to gain weight.

CHF may be due to: abnormal communications or holes within the heart, other abnormal structures of the heart or

blood vessels that increase the work load on the heart such as > obstructed or leaky (regurgitant) valves, > narrowed blood vessels, > shunts, or > abnormal heart rate or rhythm.

Other causes of CHF are less common in children and relate to poor heart muscle function.

These include: cardiomyopathy, a disease of the heart muscle, often caused by an infection endocarditis, an inflammation of the inside

of the heart (see Bacterial endocarditis, page 2-14), myocarditis, an inflammation of the

heart muscle.

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C O N G E N I TA L H E A RT D E F E C T S

CHF does not mean that the heart will stop or that a heart attack will happen.

In babies, slow or inadequate weight gain or weight loss is often seen with CHF.

CHF can take several days or weeks to develop. It may be mild when it first develops and slowly become worse.

This is due to: increased workload of the heart and lungs,

CHF can be controlled. It is usually managed with medications. If needed, surgery may correct or reduce the problem.

need for more calories than the child

How can we tell if our child

Many signs, such as crankiness and irritability, are also seen in healthy children. However, when seen in combination with other signs and symptoms of CHF, it may mean that your child requires further assessment and treatment.

has CHF? The health care team will be watching your child for CHF. However, as a parent, you spend more time with your child than the team does, so it is helpful to be aware of the signs or symptoms, which are described on page 2-10.

can take in, and lack of appetite due to fatigue.

The signs of CHF are more noticeable in babies when they are feeding, and in children when they are exercising and playing actively.

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SIGNS OF CHF

Sign Faster or more difficult breathing

Babies fast breathing even when resting, often

with flaring nostrils skin over rib cage drawing in

between ribs (indrawing)

Children shortness of breath and tiredness

on exercising can’t keep up to other children’s

activity levels

grunting with breathing

Cough

also caused by many other conditions

also caused by many other conditions

Not enough weight gain or too rapid weight gain

slow or no weight gain or weight loss

decreased appetite

lack of appetite

rapid weight gain associated with

tires with feeds - often falls asleep

swelling of face, abdomen and ankles

part way through feeds

Sweating

seen first when feeding or with crying

seen during play/exercise

most visible across forehead and scalp

sweaty, pale, clammy skin is a greater

concern than sweaty warm skim Skin colour becomes increasingly pale or blue

because the normal skin colour of many

Irritability and restlessness

crankiness that seems to happen more

babies with CHDs is pale, look for changes in skin colour at rest

often or last longer than usual

because the normal skin colour of many

babies with CHDs is pale, look for changes in skin colour at rest

increased crankiness mood swings especially when tired increased anxiety and restlessness difficulty sleeping

Listlessness (tiredness)

lack of energy to feed, sleeping

longer, and not waking as usual for feeding/playing.

tiredness after school days or being

unwilling to do normal activities that they used to enjoy expresses feeling tired or weak with

normal physical activity

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What should we do if we think our child has CHF? CHF develops slowly, over days and even weeks.Watch your child and contact your pediatrician or family doctor if: there is more than one sign, the signs don’t go away with rest, the signs reappear every time your baby

feeds or your child is active.

If necessary, your cardiologist will need to see your child again to assess and treat the problem.

Note: Even if your child shows more than one sign, it may not be CHF.

To measure cyanosis, an oxygen saturation monitor is used (see Oxygen Saturation Test, page 15-14).

What causes cyanosis?

Oxygen is carried in the blood by haemoglobin, which is bright red when filled with oxygen, but becomes purple or “blue” when oxygen level is low. Cyanosis occurs when blood going through the body has a lot of “blue” blood in it.

Cyanosis can happen in children with CHDs for several reasons: there is not enough blood getting to the lungs, blue blood coming back from the body

C YA N O S I S —

mixes within the heart with bright red blood.

BLUENESS OF THE SKIN

What is cyanosis?

Surgery can sometimes reduce or correct the cyanosis, but some children will remain cyanotic for life.

“Cyan” means blue. Cyanosis is blueness of the skin, lips, gums, nail beds, and the areas around the eyes and mouth. Many children with CHDs have cyanosis.They are sometimes called “blue babies”.

How can we tell if our child has cyanosis?

Healthy children, particularly newborns, may have cyanotic hands and feet when they are cold because their bodies do not deliver enough blood to the tiniest blood vessels, the capillaries.This is called peripheral cyanosis, and is normal.

Central cyanosis means that blood throughout the body is not carrying enough oxygen.

Children with CHD who have this type of cyanosis may have a blue tinge to the lips, tongue, and nail beds.

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HOW MIGHT CYANOSIS AFFECT OUR CHILD?

Cyanosis by itself is not a problem. However, the way in which your child’s body deals with the low oxygen level is important.The more severe the cyanosis and the longer it continues, the more it will affect your child’s health. Here are the most common effects of cyanosis.

Effects Growth and Development

Description Before birth, babies in their mother’s womb have low oxygen levels and grow and develop normally. Babies and children with mild to moderate cyanosis usually have very few effects from cyanosis.

Long-term cyanosis interferes with several of the body’s functions. Because the body’s tissues need oxygen to grow and develop normally, very low levels of oxygen can be life threatening. For these reasons, surgery is often done early in the child’s life to reduce or correct the cyanosis.

Size

Children with severe cyanosis are often slightly smaller than other children their age.

They may not be able to do as much exercise as other children.

Activity Level

Muscles, including the heart itself, need a certain level of oxygen to work well. Exercise increases the body’s oxygen requirements. Children will generally limit their own activity level, but you may notice more blueness with exercise, and young babies may get tired out with feeding.

Learning

The brain needs enough oxygen to develop and work properly. Some children with cyanosis may take longer to reach their milestones. For example, they may walk and run later than other children the same age. Most children with a CHD do not have significant learning disabilities.

Puberty

Studies show that teens with cyanosis reach puberty later than their peers.Your child’s doctor will be watching for this as your child grows, and you can discuss any concerns as they come up.

Clubbing

Children with severe cyanosis that lasts for many months or years often develop a condition known as “clubbing”. In clubbing, the ends of the fingers become wide and flat.

This different appearance can be very upsetting to some children. Clubbing usually improves after surgery to repair the CHD.

Polycythemia

When there is not enough oxygen, the body increases the number of red blood cells for carrying oxygen.This is called polycythemia and may be associated with bleeding and bruising problems.

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WHAT SHOULD WE WATCH FOR IF OUR CHILD HAS CYANOSIS? Children with cyanosis need to have their haemoglobin level in their blood measured regularly to make sure it is not too high or too low.

A low haemoglobin level (anemia) may mean your child is anemic and may need an iron supplement (see Iron Supplement, page 9-10). A high haemoglobin level can cause the blood to be thicker than normal (polycythemia).

In both cases, there may be a slightly greater risk of a stroke or brain abscess.To prevent a problem, make sure your child gets plenty of fluids or breastfeeds well. See your family doctor if your child has prolonged diarrhea and vomiting, which may cause dehydration.

Things to watch for

What you can do

Bleeding

Thick blood (polycythemia) can occasionally cause bleeding problems when too many red blood cells get in the way of proper blood clotting. In such cases, children may bruise more easily than other children, or have nosebleeds or bleeding gums. Check with your child’s doctor before giving your child medication such as Aspirin® that may affect clotting.

Dehydration

Ensure adequate intake of breastmilk or other fluids especially in hot weather.

Contact your family doctor if your child has prolonged diarrhea and vomiting which may cause dehydration.

Travel

Discuss your travel plans with your child’s cardiologist if you plan to fly or travel to high altitude places. Some children may need extra oxygen for short periods when they travel.

Headaches, fever, sudden weakness, confusion, or seizures (signs of stoke or brain abscess)

Call your doctor if you see these signs of stroke or brain abscess.

Severe blueness—short spell (Tet Spells)

A tet spell, or hypercyanotic spell, is a short spell of severe cyanosis. It usually happens in children with a CHD called Tetralogy of Fallot, but may happen to other children as well. A tet spell may happen when a baby cries strongly, especially soon after waking, or feeding or having a bowel movement. A baby or child will breathe deeper and faster than normal, become very blue and sweaty, and may become cranky or “vague”. The spell usually lasts a few minutes, but can last longer.

To recover, older children learn to squat.You can hold babies in the knee-chest position to help them recover.This helps blood return to the heart and forces more blood to the lungs. If you think your child may have had a “tet spell” you should contact your cardiologist as soon as possible to discuss appropriate therapy.

Baby in knee-chest position

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I N F E C T I O N CA L L E D

W H AT C A U S E S

B AC T E R I A L E N D O CA R D I T I S

What causes bacterial endocarditis?

Is our child at risk for bacterial

The bacteria that cause endocarditis can usually be found in the mouth, digestive tract, and urinary tract. If there is an area that is inflamed, open, bleeding, or there is a dental abscess, the bacteria can move into the blood and travel through the body.

endocarditis?

B AC T E R I A L ENDOCARDITIS? THE BACTERIA C A N U S U A L LY B E FOUND IN THE MOUTH, D I G E S T I V E T R A C T, A N D U R I N A R Y T R A C T.

Children with certain CHDs have a higher risk for endocarditis than others. Ask the cardiologist whether your child is at low, moderate or high risk. Children who are at high risk are sometimes given prophylactic antibiotics (medications to prevent the infection).

What is it?

IF THERE IS AN AREA T H AT I S I N F L A M E D , OPEN, BLEEDING, OR THERE IS A D E N TA L A B S C E S S , T H E B AC T E R I A C A N M OV E I N TO T H E B L O O D A N D T R AV E L T H R O U G H

Bacterial endocarditis is an inflammation caused by an infection of the lining of the heart. It starts when bacteria get in the blood and travel through the body. Some of the bacteria attack the lining of the heart in areas where blood flow is not smooth.

T H E B O D Y.

Bacterial endocarditis is not common, but it is life threatening. Some types of CHDs increase your child’s risk of getting this infection because they cause turbulent blood flow in the heart.

Sometimes the bacteria travel to the heart from an infection that’s already in the body such as pneumonia (a lung infection), cellulitis (a skin infection), or a urinary tract infection.

Some medical and dental procedures and surgery increase the chance of endocarditis in children at risk.This is because the procedure may cause bleeding, which lets bacteria get into the blood.

Why is it serious?

Endocarditis can lead to permanent damage of the heart valves or other delicate parts within the heart.

A blood clot can lead to heart attack or stroke. Here’s how it works.The area of infection can be covered by a blood clot. Parts of the blood clot can break off and travel anywhere in the body through the blood.The part can then block the blood vessel, cutting off the oxygen and nutrients.When this happens, the tissue around the blockage dies.

If the blocked blood vessel is in the heart, it causes a heart attack; if it is in the brain, it causes a stroke.

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Preventing it To help prevent endocarditis, there are two things to remember: clean teeth,

How will we know if our child had endocarditis?

antibiotic guidelines for doctors

and dentists.

Clean teeth Make sure that your child has good dental hygiene.This includes regular check-ups with a dentist and regular brushing and flossing of teeth.This helps prevent gum disease, which is a common way for bacteria to get into the blood.

Antibiotic guidelines There are guidelines for doctors and dentists to follow to help prevent this infection.These guidelines include whether or not to give antibiotics before treatment or surgery that put your child at risk.The American Heart Association’s recommendations have become the standard practice across North America.

Please see the guidelines on page 2-17.

WA R N I N G S I G N S P L E A S E C O N S U LT YO U R D O C TO R I F

Endocarditis can be difficult to diagnose. If not found early, the infection grows damaging the heart and allowing blood clots to form. Once diagnosed, your child will need a long-term hospital treatment along with a close watch on how well your child’s heart is working.

YO U R C H I L D EXPERIENCES ANY O F T H E F O L L OW I N G S Y M P TO M S :

UNEXPLAINED

For early detection, many parents worry about what to watch for. Bacterial endocarditis is not easy to identify because so many illnesses have the same symptoms.

If your child experiences any of the following symptoms that cannot be explained or that follow dental or other surgical procedures, consult your family doctor:

HIGH FEVER, NIGHT CHILLS, WEAKNESS, M U S C L E PA I N , J O I N T PA I N , N O E N E R G Y D I S C O M F O R T, UNEASINESS

OR

MALAISE.

unexplained high fever, night chills,

When you know your child needs antibiotics before medical or dental treatment, discuss this with your family doctor or dentist, who can then order the right medication.

It is difficult to prevent endocarditis altogether, and there are times when the infection has nothing to do with dental or medical treatment. Cases that are related to a treatment happen within two weeks.

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weakness, muscle pain or tenderness—myalgia, joint pain—arthralgia, no energy, lethargy (sluggishness), discomfort, uneasiness, malaise.

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WHEN TO USE ANTIBIOTICS TO PREVENT ENDOCARDITIS

The list below describes when antibiotics should or should not be given. If your family doctor, pediatrician, dentist, or other health care professional orders a procedure for your child, show this list to make sure that antibiotics are given correctly.

For Dental/Oral/Upper Respiratory Tract/Esophageal Procedures Antibiotics recommended for these conditions

Antibiotics NOT recommended for these conditions

All valve replacements, both synthetic and tissue

Isolated secundum atrial septal defect

Previous bacterial endocarditis, even without heart disease

Surgical repair without residua beyond 6 months of

Surgically constructed systemic-pulmonary shunts or conduits Most congenital heart malformations All valve problems, even after repair Hypertrophic cardiomyopathy Mitral valve prolapse with valvular regurgitation

secundum atrial defect, ventricular septal defect, or patent ductus arteriosus Previous coronary artery bypass graft surgery Mitral valve prolapse without valvular regurgitation* Physiologic, functional, or innocent heart murmur Previous Kawasaki disease without valvular dysfunction* Previous rheumatic fever without valvular dysfunction Cardiac pacemakers and implanted defibrillators

Antibiotics recommended for these procedures

Antibiotics NOT recommended for these procedures

Dental procedures known to cause gum or mouth bleeding

Dental procedures that are not likely to cause bleeding,

Tonsillectomy and/or adenoidectomy (T&A) Operations involving the intestines or airway Bronchoscopy with a rigid bronchoscope Sclerotherapy for esophageal varices Esophageal dilatation Gallbladder surgery Cystocopy Urethral dilatation

such as simple adjustment of orthodontic appliances or fillings above the gum line Injection of local intraoral anesthetic

(except intraligamentary injections) Loss of baby teeth Tympanostomy tube insertion Endotracheal intubation Bronchoscopy with a flexible bronchoscope, with or

without biopsy

Urethral catheterization if urinary tract is present*

Cardiac catheterization

Urinary tract surgery if urinary tract infection is present*

Endoscopy with or without gastrointestinal biopsy

Incision and drainage of infected tissue*

* For patients who have prosthetic heart valves, a previous history of endocarditis, or surgical constructed systemic-pulmonary shunts or conduits, doctors may choose to use prophylactic antibiotics even for low-risk procedures that involve the lower respiratory, genitourinary, or gastrointestinal tracts.

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DOSAGE (HOW MUCH) Special requirements

Standard general prophylaxis for patients at risk

Recommended dosage

Amoxicillin: 50 mg/kg (maximum 2g) orally one hour

before procedure.

Amoxicillin/ampicillin/penicillin-allergic patients

Clarithromycin: 15 mg/kg (maximum 500 mg orally one hour

before a procedure OR Clindamycin: 20 mg/kg (maximum 600 mg) orally one hour

before procedure.* OR Erythromycin ethylsuccinate or erythromycin: 20 mg/kg orally

2 hours before a procedure then one-half the dose 6 hours after the initial administration.* For patients unable to take oral medications

Ampicillin: 50 mg/kg IV (or IM) (maximum 2g) 30 minutes

before a procedure For ampicillin/amoxicillin/penicillin-allergic patients unable to take oral medications

Clindamycin: 20 mg/kg (maximum 600 mg) IV 30 minutes

before a procedure.

The following weight ranges may also be used for the pediatric dose of amoxicillin: less than 15 kg (33 lb.)

15-30 kg (33-66 lb.) more than 30 kg (66 lb.)

750 mg 1500 mg 2000 mg (full adult dose)

For genitourinary/gastrointestinal procedures

High-risk patients

Ampicillin: 50 mg/kg IV (or IM) (maximum 2g) plus

gentamicin: 1.5 mg/kg IV (or IM) (maximum 120 mg) 30 minutes before starting procedure, followed by amoxicillin: 25 mg/kg orally or ampicillin: 25 mg/kg IV (or IM) (maximum 1g) 6 hours after the initial dose High-risk amoxicillin/ampicillin/penicillin-allergic patients

Vancomycin: 20 mg/kg (maximum 1g) IV administered over

Moderate risk patients

Amoxicillin: 50 mg/kg (maximum 2g) orally one hour before

1-2 hours plus gentamicin: 1.5 mg/kg IV (or IM) (maximum 120 mg). Complete infusion within 30 minutes of starting the procedure.**

procedure, or ampicillin: 50 mg/kg IV (or IM) (maximum 2g) within 30 minutes of starting the procedure.

For amoxicillin/ampicillin/penicillin-allergic patients

Vancomycin: 20 mg/kg IV (maximum 1g) administered over1-2 hours;

complete infusion within 30 minutes of starting procedure.** * In certain situations, it may be more convenient to give the antibiotic intravenously at the time of the procedure. ** Must be slowly administered intravenously over at least one hour; more rapid infusion can cause hypotension, urticaria or difuse erythema presumably as a result of histamine release. Such reactions can be prevented or modified by pre-treatment with antihistamines. No second dosage of vancomycin or gentamicin is recommended.

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REFERENCES Allen H. D., Gutgesell H.P., Clark E.B.,

Driscoll D. J. Heart Disease in Infants, Children and Adolescents, Including the Fetus and Young Adult, edited by Moss and Adams, 6th ed.Vol. 1.Williams & Wilkins, Philadelphia, 1998.

Bricker J.T. Clinical Physiology of Right

to Left Shunts. In The Science and Practice of Pediatric Cardiology, edited

by J.T. Bricker, D. J. Fisher and S. R. Neish. 2d ed.Vol. 2, Garson, Lea & Febiger, Philadelphia, 1998.

Brook M. Pediatric Bacterial

Fowler V., Durack D.T. Infective

Endocarditis: Treatment and Prophylaxis. Pediatric Clinics of North America 46: 2: 275-287, 1999.

Cook E.H., Higgins S. S. Congenital

Heart Disease. Primary Care of the Child with a Chronic Condition, edited by P.L. In Jackson, J.A.Vessey. Mosby, St. Louis, 2000.

Dajani A. S.,Taubert K.A.,Wilson W., et al. Prevention of bacterial endocarditis: Recommendations by the American Heart Association. JAMA 277: 1794-1801, 1997.

Endocarditis. In Current Opinions in Cardiology 9:389-400, 1994.

O’Brien P., Smith P.A. Chronic

Hypoxemia in Children with Cyanotic Heart Disease. Critical Care Nursing Clinics of North America, 6(1) March 1994.

Whaley L.F.,Wong D.L.,Wilson D.

Whaley and Wong’s Nursing Care of Infants and Children, 6th ed. Mosby, St. Louis, 1999.

Davies L., Mann M. Heart Children: A

practical handbook for parents of babies and children with heart conditions. 4th ed., Parent and Family Resource Centre Inc. Auckland, 2000.

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COPING WITH YOUR CHILD’S DIAGNOSIS Facing the “brick wall”

At first, your shock and intense feelings may be very hard to handle, perhaps overwhelming at times. However, as you face your feelings and talk about them, you will begin to find ways of coping with this unexpected event.You will be amazed at your strength and the resources that are available to help you through this“brick wall”.

AC C E P T I N G YO U R F E E L I N G S

T

he birth of a baby is usually a time of celebration, excitement, joy, uncertainty and wonder.When you are told that there is a problem with your child’s heart, you may struggle to balance your feelings of celebration with your worry and disappointment.

All parents struggle because the baby they have dreamed about is different from the healthy baby they expected.You are not alone in what you are feeling. Many parents have shared their stories with us; some of their feelings are shared below.

Fear When parents find out their baby has a CHD, many are afraid that their baby will die.They describe feeling “terrified”, “frightened”, and “scared”. Some parents say they feel physically sick, while others say they feel like running away or escaping.

Shock Most parents are shocked when they learn of their child’s diagnosis. Many give reasons why this cannot be happening to them. Parents talk about how healthy or “how good” they were during the pregnancy.They “ate right” and “lived carefully”, not drinking, smoking, or taking drugs.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

Some parents are shocked because they have already had healthy children and expected another healthy baby. Some parents are surprised that their baby has a CHD because “there is no family history of heart problems”.

Searching and guilt

“It felt like we hit a brick wall.”

PA R E N T

“I lived in fear fear of what would happen, fear of the pain my child may

At first, parents have difficulty believing that their baby has a CHD.As the news starts to sink in, they often ask,“What caused it?” or “Why is this happening to my baby?”

Parents sometimes wonder if they are at fault. One mother believed that her smoking and drinking over Christmas was the cause of her baby’s CHD.These suspicions are often untrue, and the feelings of blame, self-doubt, and guilt are not easy to discuss.

experience.”

PA R E N T

“When our child was diagnosed I asked, ‘why me?’ I took it personally.””

F AT H E R

Anger Some parents feel angry.They may be angry with God, or angry with health care professionals who they feel have influence over their child’s health. Some are angry that an ultrasound done during pregnancy did not find the heart defect.

Confusion Parents often say that they feel confused, lost, helpless,“unraveled”, or “upside down”. These feelings of confusion and worry can make it

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hard to get on with daily life.You may wonder what to do with your feelings, or even ask yourself if your feelings are normal.

time to cherish how wonderful and special your child is.

T E L L I N G YO U R FA M I LY TA L K I N G A B O U T

AND FRIENDS

YO U R F E E L I N G S “Sometimes it feels too scary to talk about it.”

PA R E N T

“I was hoping that things would be perfect.”

PA R E N T

As you talk about your feelings, you will probably reach a better understanding of how you are behaving. Getting your feelings out in the open may reduce the tension and add to your sense of hope and anticipation.

You and your partner will likely have different feelings at different times and cope with these feelings differently. Sharing your thoughts and feelings helps both of you understand and respect what the other is feeling. Many parents are surprised what they learn about each other during this unexpected event.

Some parents find it hard to talk about their fears, although they are thinking about them all the time.

It may take a lot of effort to express your feelings. Here are some ways that help.

Creative activities such as journal writing, art, music, gardening, or other hobbies can be helpful.A healthy lifestyle with physical activity, a nutritious diet, and relaxation activities also help with stress and tension.

C H A N G I N G YO U R E X P E C TAT I O N S Like most parents, you were probably hoping for a “perfect” baby. Now that you know about your baby’s CHD, the way you think about your baby may change. Instead of planning the perfect future, you may spend a lot of time thinking about your child’s medical and care needs.

You may not want to share your feelings at first, but may also want the closeness that this sharing brings. Some people know just how to listen and comfort, but not all friends and family are supportive in times of need.

A number of changes happen as you begin to share your news with others.

You may feel: supported by your family and friends as they listen and offer comfort, frustrated because your well-meaning

friends and family members tell you not to worry and don’t seem to understand what you are going through, anxious about the questions people ask

that you do not have answers for or have not even thought to ask, alone as some of your family or friends

seem to withdraw from you and your family, sadness and grief, as sharing with others

may make your baby’s CHD feel more real to you, a sense of relief that others now know

your news.

It may be helpful to think about how each family member or friend is likely to respond to what you tell them.You can always tell people later, but you can never “untell” your story.

Take your time.This is your choice.

Parents often feel grief as their thoughts of their child change.You can still celebrate your baby’s arrival. Grief is normal, but take the

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B U I L D I N G YO U R S U P P O RT T E A M Remember that you are not alone.Your friends, family, and work colleagues want to help. Some may not know how to help.Tell your support team exactly what is helpful and what is not. For example, try saying: “Just listening to me is helpful. It’s hard

when people tell me not to worry.”

Look for support from those who have shared similar life experiences.Talk about your concerns. Parent and family support networks may offer this kind of support (for more information, see Additional Supports and Resources, page 12-1).

Questions to ask yourself You are in charge of building your support team.

Ask yourself: What do we need to help us cope right now?

“It’s okay to ask me how I’m doing.”

“How about taking the kids this

weekend so John and I can have some quiet time alone?”

“I am thrilled to finally be able to e-mail you, to say how excited we are to see Beth looking so

Who will best be able to support us?

Is this person stressing us or supporting us?

much better over the past 24 hours.”

PA R E N T

“I can’t seem to pull the meals and

housework together these days—any help would be wonderful.”

“Come with me to my child’s next

appointment.”

“I need some time off to deal with all

of this.”

There may be others you haven’t thought of yet who could offer good support for you and your family.There may be advantages in letting others know about your needs.

Community and Support Groups Local community organizations such as service clubs, churches, and community centres can offer financial and other forms of help.

Health care professionals in your community such as public health nurses, your family doctor, community social workers, and family counsellors can help you during this difficult time.

* This chapter was adapted from Knowing But Not Knowing, 1998.

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REFERENCES Rempel, G. (1993), Knowing But Not

Knowing: Parent’s Experience of Antenatal Diagnosis of CHD. Unpublished Master’s thesis, University of British Columbia, Vancouver, BC.

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Rempel, G., and Cender, L. (1998),

Knowing But Not Knowing.

Vancouver, BC.

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V I S I T I N G

T H E

H O S P I T A L

Gathering Information Please ask your health care providers to help you gather the following information.Taking care of these details and having this information recorded beforehand will make future visits less stressful.

Please feel free to insert your own pamphlets and/or maps.

LOCATING PLACES AND PEOPLE

Questions

Answers

Where is the hospital located?

Where can we park?

Are parking discounts available?

Is there a map of the hospital layout?

What accommodations are available to families from out of town?

Who do we contact to find out more about other parental/family resources and supports?

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V I S I T I N G T H E H O S P I TA L LOCATING PLACES AND PEOPLE - CONTINUED

Questions

Answers

What food services are available to us while our child is in hospital?

Where are the closest banking services?

What health information and records do we need to bring to the hospital?

Whom do we contact if our child has a cold, flu, or has been in contact with someone with an infectious disease?

How do we arrange for interpreter services/assistance if we do not speak English (French) fluently?

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V I S I T I N G T H E H O S P I TA L

STAYING OVERNIGHT AT THE HOSPITAL

Questions

Answers

Can we stay overnight at the hospital? In the same room with our child?

What other accommodations are available for parents?

(See Accommodations information.)

Can other family members visit?

What about brothers and sisters?

What should we bring to make our stay or our child’s stay more comfortable?

Is there anything we should not bring, such as electrical equipment?

Will we be charged for any part of our child’s hospital stay?

Who do we ask to talk to if we have financial concerns about expenses incurred during our child’s hospital stay?

How does the hospital protect the privacy of older children and teens?

How does the hospital provide for children/families with special needs such as hearing aids and wheel chairs?

Can we use cell phones/pagers in the hospital?

Does the hospital have pagers we can use?

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VISITING THE CARDIOLOGY CLINIC

Questions

Answers

Where is the cardiology clinic?

Do we need to register first before our appointment? Where? How?

How do we make an appointment?

How often will we need to visit the clinic?

How long will the appointment be?

What can we do while we are waiting?

What should we expect at the clinic appointment? Who will we meet?

Who decides and how do they decide which tests/procedures our child will need?

In the future, how can we contact the professionals we meet at the clinic?

Is there anything we can do to make our clinic visit go more smoothly? (for example, bring toys or food, plan nap times, write down questions) At what age will our child be moved from the children’s clinic to an adult clinic?

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NOTES

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5

NAVIGATING THE HEALTH C ARE SYSTEM Teamwork

When parents learn of their child’s diagnosis, they often feel completely overwhelmed and intimidated. At first, they may be willing to accept whatever the health care team says without question. As they learn more about their child’s condition and the health care system, some parents feel frustrated, fearful for their child’s health and future, and dissatisfied with the quality of care. As you learn more about your child’s condition, and the “patchwork quilt” of the health care services, you may want to become an “advocate” for your child—asking questions, raising concerns, and making suggestions.

“I kept my promise to smile at people yesterday and I was thrilled with the smiles I got back!”

To become a successful advocate for your child, you will need knowledge

PA R E N T

and diplomacy.

This section provides tips on how to work with the health care team to make sure that your child receives the best care possible.

WO R K I N G W I T H T H E H E A LT H CA R E T E A M

T

he health care system is made up of health, education, and social services.

However, these services are like a patchwork quilt made up of federal, provincial, and community pieces.Your challenge is to choose and link the pieces so that your child gets the services that are needed.

How can we build a team of health care professionals?

Building a strong and supportive health care team for your child is well worth the effort even though it takes a lot of time, effort, and often patience, especially if your child has multiple needs.

Your child’s health care team and the clinic’s social worker can offer help about resources.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

You may also have to do a bit of detective work on your own. Other parents who have been through a similar experience can be great sources of information and support.

Many publications, support groups and community resources are listed in the Additional Supports and Resources section at the end of this guide.

Your child’s CHD diagnosis will lead to new relationships with health care and community professionals and other relationships may change.These relationships will develop as your child grows and his or her care needs change. Some professionals may be involved for a short time, while others may be involved for many years.

Having the support of the team can be very helpful for the many challenges parents face in caring for their child. It can also help parents feel less isolated in dealing with the special needs and demands of their child’s condition.

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How can we get information and make decisions?

What should we expect from relationships with the team?

“Although Jessie is smiling and playing I have to say she is still

Your relationship with the health care team will be best if you can work together and rely on each other for information and support.

the staff I’m worried

The relationship works when it is: on equal grounds—you and the team have important contributions to make,

about her. I think the

an honest relationship on both sides—you

not right, and I’ve told

doctors are paying attention, because they are planning to make some changes.

Aha! I may not be scientifically brilliant, but Mom’s instinct is unbelievable and I am discovering it more and more.”

PA R E N T

need to be able to trust the information from the health care team, and the team must be able to rely on the information you give about your child, showing respect for each other; your

respect for the team’s expertise and the team’s respect for you as expert caregivers with valuable concerns and suggestions about your child’s care and treatment.

The team should also show that they value your child and are concerned for his or her well-being.

Good communication is a must.You can do your part by preparing for each visit: What do you need to ask the team?

What information will you need

to provide?

What do you believe is in the best

interests of your child and your family?

Are there any things happening in your

family that might affect your child (for example, financial problems or divorce)?

Some parents feel uncomfortable when they are not in control. It can be difficult to let others manage your child’s care, especially if you don’t understand what is being done.

Sometimes being part of a team means letting others take charge. As you build your team and gain trust, you may grow more comfortable with allowing the team the control they need to care for your child.

When you first learn of your child’s condition, you may know very little about CHDs and the health care system.The more you learn, the more effective you will be as an advocate for your child.You can gain this knowledge by reading, talking to others, and asking questions.

How can we settle our differences?

You won’t always agree with the health care team.Your concern for your child may make you very emotional. It is natural to react strongly to anything that may seem like a threat to your child’s well-being.

Pay attention to what your body is telling you.

Once you know that you are feeling anxious or angry, you can look for useful ways to express these emotions.Trying to hide your feelings can result in strained relationships with staff, family, and co-workers.These feelings can also build up into an emotional outburst that damages the trust and respect that you have worked so hard to get.

It takes time and practice to learn new ways of working with the team. It will also take time for both you and the team to develop respect and trust. For your child’s sake, the effort is worth it.

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PLANNING CARE FOR A

Is it all right to ask for a second opinion?

It is all right to ask for more information and for a second opinion.The doctor may not always be able to answer a question right away, but has quick access to information.

Neither you nor the doctor should feel challenged if you ask for more information.

Second opinions may already be a part of the treatment that your child receives. Ask your cardiologist if a team of professionals will be discussing your child’s medical condition and treatment options. If this is the case, you are already getting a second opinion.

Even when parents have full confidence in their child’s doctor, they may need to know that a team of professionals has made the decisions.To keep your relationship with the team, think about how you can ask for a referral to another doctor without the current doctor thinking that you don’t trust him or her.

It is not uncommon for parents to want to change doctors because of how their child’s doctor communicates or provides care. It is almost always a good idea to discuss your concerns with the doctor before making a change.

In an emergency, you may not be able to get a second opinion.Transferring your child to another centre may be medically unsafe or too costly.When a second opinion is not available, you can gain confidence in your child’s care by learning as much as possible about your child’s condition, asking questions, expressing your concerns, and making suggestions.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

CHILD WITH MULTIPLE NEEDS

How can we plan the care for our child with multiple needs?

“When my daughter

A child with multiple needs usually needs many services.You will need to learn about the programs, policies, and referral steps of the various service providers.You will need to coordinate appointments and sort out information and instructions from many professionals, some of whom have not had a chance to talk to each another.

You may find yourself frustrated by the sheer number of professionals, agencies, services, and departments involved.You may even begin to feel that you have lost control of your own life and, worse, that of your child’s.These are common frustrations, and there are no easy solutions.

has a problem I’m never sure who to call because I’m not sure if it’s her heart, lungs, kidneys, or what.

Sometimes I think, maybe I should just phone the doctor I haven’t bothered in a while.”

PA R E N T

Strategies Here are a few strategies that may help: Appointments Tell booking clerks when you have appointments in other departments and, if possible, you would like to book all your appointments for the same day.This is helpful if you live out of town. Keep in mind, however, that too many appointments in one day can be overwhelming for both you and your child.

Coordinator Choose a pediatrician or family doctor or other health care provider to act as a case coordinator—someone to help you get resources, coordinate meetings with specialists, understand the information you have been given, arrange appointments, and possibly even help you decide which specialist to call when there are problems. Choose someone with whom you are comfortable.

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“If it feels like a problem, then it is a problem. Come to us and we can help.

There are ways around the stress.”

Case Conference Consider asking for a case conference, especially if you are having trouble sorting out instructions from the different specialists in your child’s care. A case conference is a meeting (of one or more service providers) with you to discuss your child’s health, treatment, and care. A case conference may be helpful if you are not getting the information you need, if you are not sure what is going on, or if you are getting differing opinions.

FINANCIAL CONCERNS

H O S P I TA L S O C I A L WO R K E R

not offered in your province or in Canada) are covered by your provincial medical plan.

However, don’t confirm travel plans until the provincial medical plan has approved the request.

Although the cost of a specific medical treatment such as specialized cardiac surgery is generally covered by the plan, additional expenses for these services may not be covered. Ask to speak to a social worker or other health care professional who can tell you what expenses will be covered and help you get financial support if needed.

Does the provincial medical plan cover the costs of our child’s care?

The cost of hospitalizations and operations is generally covered by your province’s medical plan. Hospitals differ in what they may provide for patient comforts or supplies such as specialized formulas, diapers, and clothing.

Many families find it financially stressful to have their child in hospital, especially if the child requires a long stay. Parents often have to pay for their own travel, accommodations, meals, and parking. If you have concerns about finances, or any supports you may need, other programs may be available. Different provinces have different financial programs.Ask a health care team member who to contact about your concerns (see Additional Supports and Resources, page 12-1).The staff can help you if you tell them that you need support.

What happens if our child needs treatment in another province or country?

Very specialized treatments may not be available in every province or even in Canada.

In such cases, your cardiologist may make a request to provide your child with “Out of Province” or “Out of Country” services and will discuss this with you. In general, the direct costs for these medical treatments (if they are

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N AV I G AT I N G T H E H E A LT H C A R E S Y S T E M

REFERENCES Ahmann, E., Abraham, M.R., and

Johnson, B.H. (2003). Changing the Concept of Families as Visitors: Supporting Family Presence and Participation. Institute for Family Centered Care, Bethesda, MD.

British Columbia’s Children’s Hospital

(1998). Partners: Becoming a Partner on Your Child’s Health Care Team.

Children’s Hospital,Vancouver, BC. Cender, L.M. (1995). The Experience

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

of Caring for a Child with a MedicallyFragile Condition at Home: Perceptions of Parents. Unpublished Master’s thesis, University of British Columbia, Vancouver, BC.

Jeppson, E.S. and Thomas, J. (1997).

Families as Advisors: A Training Guide for Collaboration. Institute for Family Centered Care, Bethesda, MD. Leff, P.T. and Walizer, E.H. (1992).

Building the Healing Partnership.

Brookline Books, Bethesda, MD.

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6

COPING WITH STRESSFUL TIMES Wear and tear

No matter what kind of family you have—large, or small, two-parent, single parent, foster parent, or step-parent, your family will be affected by your child’s CHD.There will be many emotional ups and downs. Events such as

“Joe is incredibly technical and

your child’s diagnosis, major tests, surgery, a stay in the Intensive Care Unit,

knowledgeable and I,

coming home from the hospital, starting school, and moving from pediatric

on the other hand, miss

to adult care can all be stressful for the family.

the technical stuff and look at how Annie

S

ometimes it will seem like everything happens at once—there may be a new baby in the family, a job change, a move to a new place, at the same time your child is in a health crisis.These stresses add up and can make coping with day to day living a challenge.

Much of your family’s energy will be used in supporting your child, dealing with doctors, going to the hospital, and keeping the household going.When your focus is on a sick child, your other relationships can suffer over time.

Conflicts may arise.

The information in this section may help you keep your relationships safe from wear and tear. In this section, you will find strategies for dealing with your partner, your other children, your parents, and your friends.

Different people have different ways of coping and this can be a huge stress on the relationship.You might expect that your partner will feel and act the same way you do, but people deal with problems in very individual ways.There is no “right way” to feel during difficult times. Partners need to cope in their own ways.

Men and women usually express themselves in very different ways, which can strain the relationship. How each person copes with stress can also play a part. For example, some partners may try to cope with their pain by throwing themselves into their work; while others find it impossible to do even the smallest task.

seems. I think Joe and I both feel that we make a really good team even though we come from totally different angles.”

PA R E N T

PA RT N E R S

How can partners help each other?

In times of stress, family members expect support from each other and some may believe a crisis may draw them closer together. However, it is possible that relationships may become strained.

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RELATIONSHIP TIPS DURING A CRISIS

Even though you may feel drained of energy, it is a good idea to spend time with your partner.

Here are some tips for maintaining your relationship during a crisis.

Tips Communicate

Details Communicate as openly and honestly as you can.You will have difficult decisions to make and may have conflicts to deal with.These are done best if you can be open and honest with each other. Make a point of setting time aside for talking and seeing how your partner is really doing. Do not expect your partner to be able to read your mind or your heart.

Do loving things for each other. It will make you feel better.

Make sure that both of you have read this part.

Privacy

Give your partner some privacy and distance when needed, but also come together and find ways that you can share your pain. Silence may cut you off from your partner’s support.

However, you or your partner may sometimes feel like silence is the only way to cope.

Spend some time talking about your feelings and your child, but make sure you also spend time together doing and talking about other things. Find private time to spend with your partner. Some people make the mistake of giving all their time to their sick child.You and your partner need each other, and your child needs you both. Make time for yourselves without feeling guilty about it.

Give it time

Avoid making decisions about relationships during times of stress. It is often tempting to use a crisis as a test for the relationship,“If it doesn’t work now, what good is it anyway?” but this is not a good time to think this way. Give your relationship some time.

Respect

Respect each other’s ways of coping. Some people become completely consumed by a situation, while others do not allow themselves to feel the pain. A person who hides emotions may feel overwhelmed by his or her partner’s emotional storm or see the partner as weak and unsupportive. A person who needs to deal openly with emotions may see a partner who is “getting on with life” as cold and unfeeling. Remember that there is no right or wrong way of coping with stress.Try to recognize and be accepting of your partner’s way of coping even though it is different from your own. A crisis is not a good time to try to change your partner’s personality or your relationship.

Don’t take it personally

Try not to take your partner’s anger or criticism personally. It is natural to take out your frustrations on a person you think will forgive you. Remember that the anger and negative feelings created by the situation may be directed at you but not meant for you.When you are upset by the anger and need to respond, it is usually less hurtful to express how you feel rather than accusing. For example, “I feel really hurt when. . .”

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COPING WITH STRESSFUL TIMES RELATIONSHIP TIPS DURING CRISIS - CONTINUED

Tips

Details

Sex

Is the crisis causing conflict in your sexual relationship? Some partners may lose interest in sex because they feel tired and depressed all the time. Others may need more intimacy than usual as well as the release sex can offer. If you can talk about your sexual needs, there is less chance that one of you will feel rejected or resentful.

Read

Find out more about how a crisis can affect a relationship.There are excellent books and videos in hospital and public libraries, such as The Impact of Chronic Illness on The Family: Marital Issues.

Support group

Consider joining a support group where you can talk with other couples about their experiences.

Counselling

If you cannot reduce the stress in your relationship, consider getting counselling from a professional.Your social worker may be able to give you a list of counsellors.

Share responsibility

Share responsibility for talking to health professionals and supporting your child. Often one parent becomes the “caregiver” of the sick child while the other works.This can create difficulties for both.The person who is working gets information second-hand and may feel left out or uninformed.The caregiver feels that the partner doesn’t understand what it is like at the hospital.

If possible, try to schedule meetings with the health care team when you can both be there.

If this is not possible, think about ways in which both of you can be part of discussions, for example, by arranging discussions on telephone extensions or by conference call.

Strengthen your relationship

Remember that during a health crisis, you, your partner, and your child are not likely to have the emotional energy to deal with the break-up of the family. Instead, try to use this time to support each other and strengthen your relationship.

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Find other ways than saying it yourself FA M I LY A N D F R I E N D S “At the moment I am home instead of at the hospital because Keith (sibling)

Sometimes the most difficult thing to do is admit that you need help and ask others to carry some of the load. Here are some tips for how to ask your family members and friends for help.

decided this morning

Tell family and friends what that he had had enough

you need

and needed me. Plan B required me to stay put and terrific Grandma is with Donna instead, and I will go in tonight.”

PA R E N T

Most people want to help, but not everyone knows how.They may not know what to say or what to offer.Their fear of saying or doing the wrong thing may cause them to avoid you.You may need to take the lead and show others how you want to be treated. For example, do you want to talk about your child openly and honestly, or would you prefer to use time with your friends to take your mind off your troubles?

It is hard for people to guess what you need, so you are more likely to get what you need if you give people some direct hints. For example, you might say, “I really don’t want to talk about this right now - I’d rather you help me take my mind off...” or “I can’t think about anything else. If we’re going to talk, I have to talk about...”

Practice how to say it yourself At first it may not be easy for you to find the right words. It may be helpful to write yourself a “script”, either in your head or on paper.You can then practise it until you feel comfortable saying it aloud, and then use it whenever you need it to “break the ice”.

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Sometimes you may find it too hard to talk to people, even those closest to you. An answering machine lets you screen calls and handle them when you want to. Record a simple message such as, “Thank you for your concern.We’re often not able to come to the phone because we are caring for __________ .

Your call means a lot, so please leave a message, and we will call you as soon as we can.”

You can also call one or two people, and then ask them to call other family members and friends to keep them updated.This helps you avoid explaining a painful situation over and over again.

Most libraries have pamphlets, which help explain how friends can make life easier for you.

S H A R I N G E M OT I O N S Sharing emotions, both the “highs” and the “lows”, helps most people cope with their child’s health problems. If your partner is not able to share and you do not have a close family member or friend, look for someone else with whom you can work through your emotions. Some possible support people are a social worker, chaplain, counsellor, hospital volunteer, or parent support group.

Parents, adult brothers or sisters, or a close relative such as an aunt, uncle, or cousin are the obvious people to call on for support.

Before asking them for support, consider whether they will be able to give you the support you need without adding stress. For example, some people have different beliefs and values, and others like to be in charge of situations.This may lead to many disagreements. During a health crisis, you and your children’s needs are the priority.

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Grandparents Grandparents can be wonderful support people but they may also find the situation especially hard. Not only are they concerned for their grandchild, they may also feel helpless about their own child’s problem.You may find yourself comforting rather than being comforted. Limit how much you share until you are sure how much support they will be able to provide.

Your older children Avoid asking older children for emotional support. It may be very tempting to look to your older children for emotional support, particularly if they are healthy teens. In most cases, this should be avoided for several reasons.Your emotional stress can be a great burden for a teen to carry, particularly as the teenage years are already very stressful for most children. In addition, if your teen does not want to share, it may cause a rift in your relationship. However, it is important to keep communicating with your teenager so that your teen feels you are being open and honest and at the same time feels that he or she can talk to you about feelings and concerns.

Roles for people Some people want to provide comfort, but they end up irritating you or draining your energy.You don’t need to completely leave them out if you want to avoid hurting their feelings.You might give them a role to play outside of the hospital. For example, ask them for help with shopping, laundry, driving, or making phone calls.

S U RV I VA L S T R AT E G I E S FOR SINGLE OR D I VO R C E D PA R E N T S CHDs affect all kinds of families, including single parent and divorced or separated families. Parents in these situations have added stress and responsibility. Here are some tips for single, separated, or divorced parents that can help in stressful situations.

“I know we will make it through all the hurdles that come our

Making decisions with a buddy Many single parents make all of their day-today decisions on their own. However, most people need someone to help them sort through the information to make important decisions. At times, you may have to call on all your inner strength to manage a health crisis.

It is helpful if you have a supportive circle of family and friends. From your circle of family and friends choose a “buddy” that you trust.

Find out whether your buddy is willing to help you make decisions about your child’s care. Make sure he or she has the background information you already have before you discuss plans and decisions. Offer your buddy useful books or articles.Take notes (or ask a staff person to do this for you) when you have meetings or conversations that will affect decisions.

way, thanks to all of your prayers, good thoughts, and good wishes. I look forward to one day sharing with Susie all the inspirational e-mails that we have received on both of her hospital stays.”

PA R E N T

A buddy who knows you and shares your beliefs and values can become a true support when you have difficult choices to make. Keep your buddy up-to-date on the care plan, even when things are going smoothly.

Making decisions with a former partner Unless one parent has sole custody of a child, both parents will likely be involved in making decisions. In the interests of the child, parents who are separated or divorced need to work out a way to share information.

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“I felt very alone

Communication with the health care team can take up a lot of time. It is not possible for the health care team to meet separately with each parent.

when my daughter was born. My family members weren’t very supportive at first, but I worked on them and

You can share information by making sure that you both go to scheduled meetings. If this is not possible, agree as to who will attend meetings and take telephone calls from the doctor.This parent will then make sure the other one gets the information.

they came around.A few of the veteran moms took me under their wing and I talked to them for hours that helped.”

PA R E N T

“When some of the

Sharing information and making decisions with a former partner may be especially hard if your relationship with your former partner is strained.A health care professional such as a nurse, social worker, or other professional support person may be able to help you set up a communication plan that works for both of you.A social worker often has many practical ideas, based on what has worked for other couples in similar situations.

Dealing with your emotions alone

members of my support circle asked how they could help, one friend suggested that they ‘buy

Parents who do not have a partner to share with may find it particularly difficult to cope.

For more information about finding a support person see Sharing emotions, page 6-4.

time.Work out a plan that will fit into the person’s schedule. For example, one person may be willing to spend the night, while another may be willing to give you a break during the dinner hour.Your child will quickly come to see this person as part of the care team, allowing you time to catch up on sleep and necessary chores.

You may find it hard to ask for this help from your family and friends. However, most people welcome the chance to show their care and support.

Take breaks when staff members are with your child, for example, during hospital routines, play room activities, and school times.

Talk to the social worker about other available resources. For example, a volunteer may be able to come at certain times to play with your child.There may also be services outside the hospital, such as respite services, which offer in-home childcare for varying lengths of time.

While it may seem like a lot of work to take the initiative and contact agencies and other parents, it is well worth the effort.

lunches for a week’ or

Dealing with fatigue ‘fill her cupboard along with yours next time you grocery shop’.

It certainly helped make ends meet.”

PA R E N T

As a single parent of a child with a CHD, it is hard to avoid becoming over-tired.Your responsibilities may seem endless and the burden overwhelming.Your child’s health care needs will likely be long-term, and right from the beginning you need to conserve your energy. How you start sets a pattern that your child will come to expect. If you never leave your child’s side, he or she will expect you to always be there, even when the current situation has passed.

If there are people in your support circle with whom your child is comfortable, ask them if they are willing to visit your child from time to

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try to avoid bringing any personal conflicts

M O N E Y M AT T E R S Very few people manage to get through a child’s health crisis without changing their work time.This often means a loss of income, so careful planning is important. If you need financial assistance, talk to the social worker about available programs and resources. If your child’s other parent is able to provide some help, involve him or her in the plans.

You may want to consider whether: there are benefits in your work contract that will allow you to care for your sick child, a leave of any kind is possible, there are resources for you, such as social

or religious societies.

Before you go to an organization for financial help, take the time to figure out where you need help.

Being the parent who is not the regular caregiver

between you and your former partner into the health care situation. Remember that no one needs extra stress during a crisis.

The social worker may be able to offer help or names of resource people if conflicts arise.

SIBLINGS

“When I was little, I worried that maybe I would catch it (be sick like her brother) or something, or that, because my brother

How can we make sure our other children get the care and support they need?

came from my mom that she would get. it.

I worried that someday

You have barely enough time and emotional energy to care for your child with a CHD—you may wonder how will you give your other children the support they need?

Many parents later feel guilt and regret, believing that their relationships with their other children suffered during times of increased stress and anxiety. It might help to know that most siblings recover, and some may even benefit. For example, some children become more independent and mature, and some learn to empathize (understand what others are feeling) more.

I would have to go to the hospital because I had caught it.”

SIBLING

“I focused on the other kids - on what they were doing.

We found a new normal together.”

If you are a parent who does not have day-today responsibility of caring for your child, you have your own challenges to face.

The following tips may help everyone involved, including you, your child, and your former partner: agree as to how you will be involved, plan how you will stay informed about

treatment plans and your child’s progress (see Making decisions with a former partner, page 6-6), if you had little involvement in your child’s

life before the crisis, your child may not want to see more of you now, if your former partner welcomes support,

There are steps you can take to ease the way for your other children. Here are a few suggestions from health professionals, parents, and siblings.

PA R E N T

Tell siblings what is happening in a way they can understand You may be worried that you will frighten your other children by sharing too much information. However, even very young children are likely to sense family anxiety, and it can be disturbing when they don’t understand the problem.They may imagine things that are more frightening than the reality, or they may blame themselves for upsetting the family. A simple version of the truth that is suitable to their age is best.

consider what kind of support is needed and how you can provide it, HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

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COPING WITH STRESSFUL TIMES

Try to: Ask them questions. Find out what they’d like to know and what worries them.

Create an open atmosphere so that

your children know they can ask you about anything and express all their feelings, including anger and jealousy.

“I know I can’t fix my brother’s heart or stop my mom from worrying. I’m just thirteen years old.

But I can make my mom a cup of tea and tell her I love her.”

B R OT H E R

“Keith decided last week, after not seeing me for 7 days, that he was not a happy little fellow, and so I had to swallow my fears and rely on the nurse, my mother and siblings to

Use words and examples that they

can understand.

Remember that you may have to repeat

information several times.

As your children get older, give them more

detailed information.

Here are some examples of what to say to your healthy children: A congenital heart defect is a serious problem. It will not just go away like a cold.

It needs a lot of treatment. It may take a long time before _____ (your brother or sister) gets better.

Most children with heart defects can be

helped.The doctors, nurses, and we, as a family, will work hard to make _____ well again.

Nothing any of us did, thought, or said,

caused _____ ‘s CHD. No one knows why or how people get CHDs, but we do know CHDs are not contagious - you can’t “catch” one from being with _____ .

be with Donna when we weren’t there” PA R E N T

6-8

When someone we love is very sick, it

makes us all feel bad. People feel bad in lots of ways. Some people feel sad, some feel angry, and some feel afraid.You can’t help how you feel, but sometimes it helps to talk about the feelings.

________ needs us more than usual while

he is sick.That is why things at home are different than usual.We need to be kind to each other and remember that we all love each other just the same, even though sometimes it seems things aren’t fair.

It is all right for you to enjoy things and

have fun even though _____ is sick. If you’d like to help, you could... (make a card for _____ wall, make a tape of favourite songs) or help the family at home by... (folding the laundry, setting the table).

Be aware of your other children’s feelings Your other children are likely feeling anxious and fearful because their lives have suddenly been thrown off balance. Parents who are usually available to make them feel secure are now away a lot, and when the parents are home, they are often distracted and upset.

It is less difficult for your other children if you let them know how you are feeling without asking them to help you make decisions. It is also helpful to let them know that you are able to cope with the situation most of the time even though you seem upset. For example, if your teenager finds you crying or you blow up at him, it can be harmful to say something like: “I feel so scared and lonely, I don’t know what to do. I don’t know what I would do without you.” Instead, you might say something like: “This is really scary for all of us. I’m feeling pretty down today. I have some bad days, but I know we can all get through this together. How are you feeling?”

Remember that children need to get support rather than give it.Your children cannot provide the kind of support you will need to get through a stressful situation. However, children often need to be helpful, so give them

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

COPING WITH STRESSFUL TIMES

opportunities to be part of the family team, for example, by saying, “I’m feeling sad today. It would help me if you played a game with your little brother while I make dinner.” Be careful about asking your children to put the sick child’s needs ahead of their own on a day-today basis, or they may become frustrated and angry about the burden it puts on them.

Give your children the

family or her sibling) and then ask her to tell you about the picture.Watch for ‘clues’ to her emotions and ask questions.

One way to help your other children is to offer them books or videos for children that are available in the parent library.

“Maggie is smelly she smells like a hospital and I hate that smell.”

Tell your children that this is

SIBLING

not their fault

opportunity to express their emotions, even negative ones Like you, your other children have been thrown into emotional turmoil and will probably have many conflicting emotions: concern for you and for their sibling; jealousy over the attention their sibling is getting; fear and uncertainty, abandonment, sadness, anger, and guilt. It is normal for the healthy children to have negative feelings and to change the way they behave.

Jealousy, anger and resentment are normal feelings in siblings (even in siblings of healthy children).Your child is not ‘pathological’ or abnormal because he screamed at the baby or hit his brother. Expect some negative behaviour, and do your best to give them the chance to voice ‘bad’ feelings (anger, jealousy) without scolding them. Let them know that it’s all right to feel that way sometimes but that hitting others is not okay.Your child may need help expressing sad feelings as well; many siblings feel they need to be ‘strong’ for their family. Be honest about your own emotions and let them know you can be sad together.

Young children will have a hard time expressing their feelings in words.You may need to help them find other ways. For example, you might ask your child to draw a picture (of her

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

Young children sometimes have unreal ideas about why things happen or what caused a problem.This magical thinking can happen with children and adults. Some children may blame themselves for what is happening. For example, your son may feel that, because he didn’t want a sister, he caused her heart defect. From time to time, tell your children that what happened was not their fault.

Have special “alone time” with your other children

“Our oldest, who was 4, had some behaviour problems . . . he was fine with his baby sister, but was physically aggressive with his 2-year-old sister.

Our cardiologist referred us to the staff child psychologist . . .

Many siblings say they resent all of the attention that goes to the one who is sick.They feel better when their parents set aside time that is just for them. Some parents report that setting aside this time can be difficult, particularly if one child is hospitalized.

For those times, they suggest finding another adult who can make the child at home feel special and offer support by listening and talking.This can be a good way to involve grandparents or close friends who want to help.

it was comforting to find out that our son’s behaviour was normal given the circumstances.”

PA R E N T

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COPING WITH STRESSFUL TIMES

Include siblings in the experience if they wish “Whenever the boys come to see Debbie it’s wonderful how she perks up and watches them with such great interest. The bond among siblings is amazing.”

PA R E N T

A serious illness affects everyone in the family, and everyone needs the chance to be involved and feel useful. Siblings will find long hospital visits tiring, but might like shorter visits. Plan visits carefully, and talk to them about what they will see.

If your other children don’t want to visit the hospital, consider taking photos of their sibling so they can feel like they are “in touch” with their sibling, and so they can get an idea of where you go and what the hospital ward looks like.They can also be made to feel like they are the ‘expert’ in certain areas, such as choosing toys to bring to the hospital, drawing pictures for their sibling or the nurses, or making tapes to be played in the hospital.

Try to be fair

Provide opportunities for siblings to meet other children in the same situation Many parents seek out other parents to talk to and share with, but don’t think to provide the same thing for their children.Talking to other siblings who understand and share their experience may be very helpful. Just knowing that there are others out there, and that they are not alone, can be reassuring.

Let teachers know that siblings might be experiencing stress Your children’s concerns may affect their work at school. Ask their teachers to watch for problems and provide extra support if needed.

Children with CHDs often get gifts and treats from friends and relatives. Having a few things on hand for siblings at those times will help to reduce jealousy and resentment. If someone asks what they can give your child, suggest something that siblings can also enjoy, such as a video, game, or book.

Siblings often report that they have to do more than their share of the chores at home.

To keep things fair, try to find simple chores that the child with a CHD can do.

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COPING WITH STRESSFUL TIMES

Grief and bereavement Although most children survive their heart defects, some do not. Some parents want to “prepare for the worst”. You can never really prepare for this but you can make the most of your time with your child.

W

hen you hear that your child has a heart defect, it may cause an overwhelming feeling of grief.Thinking of your child’s death can cast a long shadow over your lives. No matter how hopeful you are about your child’s future, it is natural from time to time to feel the chill of that shadow.

It helps to have control over some parts of your child’s last days.The health care team can help you find ways to take some control, such as choosing who will be with your child, and whether your child will die in hospital or at home.

How can we prepare for the death of our child?

PA RT O F YO U “LIVING AFTER THE D E AT H O F A C H I L D I S N OT D O N E AC C O R D I N G T O A F I X E D PAT T E R N

Am I going to die?

Sharing your feelings with someone close to you may help you make the situation easier to talk about.

YO U M A K E I T

There may come a time when your child asks this question. Some ask when they are feeling very ill; some never ask. Let your child decide whether to talk about dying or not, but make sure your child knows that you are willing to talk about difficult things.

Nothing is as painful as losing a child.The pain is often made worse because our society is not very good at dealing with death, especially the death of a child.That’s why so many of us need help to deal with this situation. Help may come from a family member or friend, or another parent. Accept it wherever you find it.

How you answer this question will depend on your child’s situation. Unless your doctor has told you that there is little more that can be done, we suggest you reply,“You are being treated so you can get better.We all die eventually, but you are not going to die now.”

Some parents are still hopeful even at the hour of their child’s death. Others say that they can remember a time when their hope shifted from recovery to a hope for a peaceful death.

For an older child with a serious heart problem, you may want to offer the chance to write a “living will”. A living will gives this older children a chance to make decisions about their final days.

O F E M OT I O N S .

T H E VA R I O U S FEELINGS AND EXPERIENCES ARE MORE LIKE CHANGES I N T H E W E AT H E R .

ABOUT THE TIME YO U B E L I E V E T H E S T O R M H A S PA S S E D , YO U F I N D I T R E T U R N I N G TO S T I R YO U AG A I N .

S O M E PA R E N T S H AV E DESCRIBED THEIR GRIEF AS COMING I N WAV E S .”

J OY J O H N S O N A N D DR. S.M. JOHNSON,

Children deal with death differently too.

If reading helps you, there are some books in the Additional Supports and Resources section, page 12-1.

If you know your child is dying Sometimes there are warning signs, which give you some time to prepare.You can use this time to lay some of the groundwork that will help you and your family through the difficult days, weeks, and months to follow.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

Preparing the other children

C H I L D R E N D I E , TO O ( 1 9 9 2 )

If you have other children, you will probably want to tell them that their sibling is dying.

Explain what is happening using simple, clear words. It is best to be direct, even if it is painful and difficult. It would be confusing to say, “Your brother is going to pass on”.

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COPING WITH STRESSFUL TIMES

DEALING W I T H D E AT H

You should also make sure your children know that the death of their sister or brother was in no way caused by them or by their thoughts or feelings. Some children think that because they had mean thoughts about their sibling they somehow caused the death.This “magical thinking” is very common in children.

Give them chances to talk about their feelings, and don’t judge them, even if their thoughts and feelings seem very negative.

“ TA L K I N G A B O U T D E AT H - E V E N THINKING ABOUT D E AT H - H A D A LW AY S

What can we expect from the health care team?

B E E N D I F F I C U LT FOR ME.

ERIN’S ILLNESS

When treatment is no longer working, you can expect the health care team to provide: honesty,

B R O U G H T M E FAC E - TO FAC E W I T H T H E M O S T D I F F I C U LT D E A T H P O S S I B L E . . .T H AT O F

a plan for helping your child to live

life to the fullest with as little suffering as possible,

M Y OW N C H I L D.

support for decisions, THE MORE I BROUGHT MY THOUGHTS AND F E E L I N G S TO T H E CONSCIOUS LEVEL,

respect for your choices, and help to

make them possible, help for your family as they come to

accept that the child is dying,

THE EASIER THE S U B J E C T O F D E AT H

help with pain and other symptoms,

WA S TO T H I N K A N D T A L K A B O U T. ” T H E L A S T D AY O F A P R I L , B Y N A N C Y ROAC H

support for your choice of where to

care for your child, treatment and care information for community health care providers (if needed) as they help you care for you child, contact after your child’s death.

Making memories Any time together is meaningful, and you need to spend this time in the way that is right for you, whether you are at home or at the hospital.

videos of your child with the family.You may want to make a plaster hand or foot mold, or keep a lock of your child’s hair. Do whatever feels right for you, and don’t worry about what other people might think.

Saying goodbye Take the time you need to say goodbye.

(North Americans are often not very comfortable with death, and sometimes try to remove all signs of it as soon as possible.) If you need some time to hold, dress, or bathe your child, take it. Don’t let hospital staff, family, or friends make you feel rushed.

The grieving process There is no pattern to grief, but there are some common feelings, such as anger, sorrow, and deep loneliness.You may also have emotions that you do not expect: relief because the worst is over, ambivalence towards your other children (often because you are exhausted), and guilt that whatever you did for your child was not enough. At first, you may feel nothing at all. Many parents feel numbness due to shock, which is the mind’s way of protecting you from too much pain.

Some feel the most intense pain just when they expect to start feeling better.

You may have some of the common physical symptoms of grief.They include forgetfulness, lack of concentration, trouble hearing (a need to have things repeated), exhaustion, insomnia, nervousness, headaches, stomach problems, loss or gain in appetite, restlessness, dizziness, and disorientation.These physical things are normal to a point, but if they go on too long, talk to your doctor.

Some families choose to create tokens of their child and their time together.You might want to take pictures or make audiotapes or

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Let yourself express grief in your way—don’t worry about what other people think.You may want to write. Some parents deal with the anger they feel by writing letters that they will never send. Some keep a journal.Talking to a trusted friend or counsellor can also be very helpful: telling and retelling your own story is a common way of understanding what has happened and coping with what has happened in your life.You might consider joining a support group where you can work through some of your thoughts and feelings with others who have been in a similar situation.

You can’t heal well unless you grieve well and deal with the storm of emotions that you feel.

You may find that your religious faith plays a key role in guiding you through your grief. On the other hand, you may question your faith and feel a lot of anger. It is very common to feel confused about your faith and beliefs with the loss of a child. Either way, talking with your religious leaders or spiritual guides may help.

Grief is exhausting, and may consume your life for quite a while, sometimes long past the time when other people think you should be “getting on with your life”. Take the time you need.

At the same time, you need to be aware of possible problems. Pay attention to any warning signs that your grief is affecting your mental or physical health.

You may need some help if you: think about killing yourself or do things that are dangerous to yourself, cannot do daily activities several weeks

after your child has died; be concerned if you cannot do anything at all, become accident-prone, act strangely (for example, if you become

destructive, or do something you wouldn’t ordinarily such as shoplifting),

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

have constant feelings of rage and hostility, consistently use alcohol or drugs (even

over-the-counter medications) to ease the pain of grief,

“I decided that when her quality of life was

have difficulty eating or sleeping several

weeks after your child has died, refuse to be comforted by anyone, remove yourself from family and friends.

gone then it was time to stop doing all of this . . .

She had no fight left, so we stopped all the

These are only warning signs and do not mean there is a major problem. If you think about how strong the feelings are and how long they last, you may be able to decide if you need professional help.You may also want to talk to the clinic’s social worker or your family doctor, who can refer you to a psychologist, family counsellor, or other grief counsellor.

Couples

treatment. That night she laughed, she even crawled and was happier than she had been in the last seven months: no IVs, no medications, no doctors, no ventilator. She

The loss of a child is very hard on a couple.

You may not be able to be the “strong one” for your partner because you are just as upset.While you need to find ways of grieving together, you shouldn’t expect your partner to be your only support.

For suggestions on how to deal with grief, see How can partners help each other?, page 6-1.

Siblings The death of a family member is hard to accept and understand at any age, but for young children it is very confusing.Try to explain death in words that they can understand—avoid saying “passed away” or “lost”. Don’t feel that you must have all the answers—saying “I don’t know” is okay.

Children under five don’t understand time and death, and may keep asking when their sibling is coming back.This can upset you, but try to be patient and continue to talk about their sibling; this helps them develop their ideas and feelings about death and their sibling.

was so happy!”

PA R E N T

“I would get so angry at him because he didn’t seem to be feeling my pain. He seemed to be able to go to work and carry on and I couldn’t even get out of bed.”

PA R E N T

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COPING WITH STRESSFUL TIMES

Understanding the reaction

“I thought about dying, about killing myself, nothing seemed worth staying for. But after a while, life seemed worth it again I had some happiness with the sad.”

Your children will have their own ways of coping and understanding what has happened.

Try to allow them to deal with their own feelings of loss, not yours. Children’s grief often runs in cycles—they may be terribly sad at one moment, and then seem very carefree the next.This cycle is normal and healthy, and most children find a balance between grief and normal daily routine and happiness. Let them feel happy or sad, mad or glad without guilt.

Each of you in the family has the right to feel the way you feel and be accepted and supported by others in the family.

PA R E N T

“I got really mad when a friend phoned and left a message suggesting that I seek help or find someone to talk to. She was trying to help, but I couldn’t accept it.

I wanted to feel this

Children will sometimes fear that they or their parents might be the next to die.You may find that your children cling to you more and act younger than normal. Offer lots of hugs and reassurance. Children may also play at being sick or dying.While this may be disturbing, remember that children use play to understand and master their world.

If you feel that your child is having problems coping, there is support available.Talk to the clinic’s social worker, nurse, or your family doctor who can put you in touch with professionals or peer support groups.

way, I had to feel this way, and to seek help for it seemed to me like asking me not to feel this pain for my son.”

PA R E N T

Helping your children through their grief can seem overwhelming when you can hardly keep yourself together. If you are distraught and can’t care for your children, ask someone they like to spend time with them. If you get angry with your kids or cry, try to reassure them.

Explain that you are angry or sad because of your grief and not because of anything they did or said.Apologise when your behaviour is upsetting, and give them a chance to forgive you.This can be an appropriate time to share your grief and talk about what has happened.

of others Most people will never suffer the death of a child, but are afraid that they may some day face what you are experiencing. Many family members and friends will not fully understand what you are going through and may have a hard time supporting you.They may say the wrong things or offer the wrong kind of help.

Tell them, when possible, what you need and how you are doing. It may be very helpful to get support from other parents who have had similar experiences, or from people with training in grief support.

Relationships with family members can become strained with the loss of a child.

Remember that grandparents, aunts, and uncles will themselves be grieving and may not be able to offer much support.Try as much as possible to tell them what you need, but be patient if they are unable to give it.

Learning to live beyond the shadow Eventually the good days start to outnumber the bad, and you begin to find yourself again.

No one can tell you when this will (or should) happen.You may find that you are still deeply grieving while your partner has begun to heal.

Be gentle with each other and try to accept the fact that you will probably follow different paths.

There will always be “what ifs” and “what might have been”, but the sadness shouldn’t overshadow the happiness you had with your child. Happier memories will eventually outweigh the pain.You may want to create a reminder of those memories, plant a tree, write a tribute, have a portrait drawn, or make a quilt. Be creative, and include your family as much as possible.

Celebrate your success as you begin to heal and plan again for your future.

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COPING WITH STRESSFUL TIMES

REFERENCES Partners: Becoming a partner on your

Dozois E., Kneeshaw R. Heart Beats:

Durbach E., Stutzer C. Children with

A handbook for families and children with special hearts. Edited by Work on the Street Consulting. Heart Beats the Children’s Society of Calgary, 1999 (draft).

cancer: A handbook for families. British Columbia’s Children’s Hospital, Vancouver, 2002.

“I felt so sad that

“I realized later that my

“After Mac died, a

my chest hurt - I

family just didn’t know

friend gave me a

thought maybe I was

what to do for me

beautiful wrought iron

getting a heart problem

(although I thought they

garden bench that will

because my heart

should be able to read

last forever. I love to sit

hurt so bad.”

my mind and my heart).

out in the garden and

PA R E N T

I was often mad at them

remember. In the winter,

through that first six

I leave it out so I

months, but as time

can think of the

passed we talked and

coming spring . . .”

shared in small ways,

PA R E N T

child’s health care team. British Columbia’s Children’s Hospital, Vancouver, 2000.

and those small moments healed some of those big hurts.”

PA R E N T

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

6-15

COPING WITH STRESSFUL TIMES

NOTES

6-16

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

7

GROWING

UP WITH A

CHD

Babies and toddlers The following sections apply to children who have just been diagnosed with a CHD and to children who are growing up with a CHD.

THE FIRST YEAR YO U R B A B Y W I L L

ADJUSTING

When your baby has a CHD

F

inding out that your baby has a CHD can be very upsetting to the whole family. It can affect how you and your baby interact and how your baby develops.

Your baby may have seemed healthy, and now everyone has to adjust to the idea that the baby has a CHD.Your baby may look and act no differently than before, so it may be difficult to accept the diagnosis.This is a normal response felt by many parents, families, caregivers, and friends. Everyone involved may need some time to work through feelings (see Coping with Your Child’s Diagnosis, page 3-1).

What do babies need to learn?

At first, your baby has simple needs such as feeding and comfort.

The first few months of a baby’s life are important for you to get to know your baby and for your baby to get to know you and your family. Bonding happens during all of the daily things you do with your baby, such as feeding and diapering. It is a time for your baby to watch you and get to know your face better than others. At the same time, your baby learns to trust you and rely on you to provide for simple needs such as feeding and comfort.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

Infancy is the time when babies begin to learn to communicate. At first, getting your attention is most important. Later, your baby will want other things.

Concern about strangers is an important step in every child’s development. If your baby is in hospital when children normally learn the difference between family and strangers, there may be some problems. On one hand, you will want your baby to learn the difference between family and strangers, but on the other hand, babies of 8-15 months will normally become upset by so many strangers.

Don’t expect your baby to accept many different caregivers. It is important that children learn the difference between family members, who they can trust, and people outside the family with whom they should be more cautious.Your baby will need extra comforting and support in the hospital and especially during tests or caregiving routines with strangers.

During the first year of life, your baby will also begin practising the actions that lead to walking and talking. Mouthing toys, babbling, and listening to others talk all lead to speech.

Swatting at toys, rolling over, pushing into a sitting position, crawling, and pulling up to a standing position all lead to walking. It is common for babies to begin to practise these skills at different times and walk or talk when they are ready.

BEGIN PRACTISING T H E A C T I O N S T H AT L E A D TO WA L K I N G A N D TA L K I N G .

M O U T H I N G TOY S , BABBLING, AND L I S T E N I N G TO OT H E R S TA L K A L L L E A D TO S P E E C H

S W AT T I N G AT T O Y S , R O L L I N G OV E R , P U S H I N G I N TO A SITTING POSITION, C R AW L I N G , A N D PULLING UP T O A S TA N D I N G POSITION ALL LEAD TO WA L K I N G .

IT IS COMMON FOR B A B I E S TO B E G I N TO PRACTISE THESE S K I L L S AT D I F F E R E N T T I M E S A N D WA L K O R TA L K W H E N T H E Y A R E R E A D Y.

Play is the most important thing in your baby’s first years. Babies should have lots of chances to play, including watching others, physical play, pretend play, and even word play through

7-1

GROWING UP WITH A CHD

songs and repetitive games.When babies have a chance to pretend, lead others, and direct the play, they gain a sense of control over the world around them.

“She loves to chatter

Will our baby develop normally?

and throw her toys over the side of her chair with the knowledge that one, or all of us will quickly come to her rescue. She just got her third tooth and delights all of us when she starts to laugh.”

PA R E N T

A baby with a CHD will look at life in much the same way all children do.Your baby will be interested in playing and exploring, trying new things, showing off, and being loved and cared for by the family.

Most parents are concerned that their child will not develop at the same rate as other children. In general, children with CHDs are as intelligent as other children. Children with CHDs may be slow in starting to speak and in developing their language abilities. Children with certain syndromes may also experience delays associated with that syndrome (for example, Down Syndrome). In general, the more complex the heart defect, the more “at risk”, the longer it will take the child to develop.

Children learn and do things at different rates.

Chances are your baby will do most things around the same age that other babies do.The most important thing to remember is children need the chance to practise and feel a sense of pride in what they can do, no matter when it happens.

How might illness affect our baby’s development?

When babies are ill, they may not have some of the usual childhood experiences. For example, if you don’t get to feed your baby, your baby may not have as many hours of cuddling, or the satisfaction of being face-toface, enjoying the feeding experience. It may take a little longer for your baby to get to know you.

7-2

Also, because you have a sick baby, you may become more anxious. Babies are sensitive to parents’ anxiety and may respond to it.The more you can remain calm, the more likely your baby is to stay relaxed as well.

In older babies, who feel sick or anxious, they may not be interested in new relationships.

Babies may also ask for more physical attention than you might expect. It can be helpful to think of a baby’s “clinginess” as a way to find comfort.

Babies often cry when they feel unhappy or unwell. Understanding why your baby is crying a lot may make it easier to cope.

How might the hospital affect our baby’s development?

Being in the hospital can make it even more difficult than usual for babies and parents to deal with being separated from each other.

Some of the things that could affect how you and your baby bond include: not being able to hold your baby often enough, not enough time for you and your

baby to have private time together, a lot of caregivers other than just you.

Despite these problems, there are many ways that you and your baby can learn to know and love each other.Talk to your baby’s caregivers if you have any concerns about this.

If you have had any time at home with your baby, you will likely have set up some daily routines, such as mealtimes, playtime, and bedtime. Being in the hospital upsets these routines and can upset your baby.

While in the hospital, your baby’s motor skills (small movements, such as holding objects, and large movements such as crawling and walking) can slow or stop during a long hospital

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GROWING UP WITH A CHD

stay. Some babies even forget some of the skills they have already learned.

Most babies improve over time, especially with the help of a physiotherapist or occupational therapist (see Record Keeping, page 13-4).At home, babies can get back to normal development as their lives become more normal and their own motivation pushes them towards their goals.

How can we stop worrying about how fast our baby is progressing?

Babies feel proud of themselves when they do something new. Once they have done it, they do it again and again.They like to do it even months after they have learned to do it perfectly.

When they are getting good at crawling, babies want to show off, so they keep practising.

It is their natural way of strengthening their muscles and gaining the balance they need to pull themselves up to stand.Trying to push a baby to walk before he or she can do it can send a message to the baby that you are worried.The baby may wonder, “Isn’t my crawling great enough? Is there something I’m not doing well enough?”

It doesn’t matter how long it takes a baby to stand or walk alone. Being able to walk or stand and feeling proud of it is the most important part of building your relationship with your baby and building self-esteem.

How can we avoid being too watchful?

When a baby is sick, it is natural for families to be especially protective and careful with them. Even as the child grows up, whether or not there are health crises, parents are usually concerned and sometimes even fearful about their child’s health.

ROOM TO GROW

Children need protection and care, but they also need: R O O M TO G R OW T H E Y N E E D TO

Children do need protection and care, but they also need room to grow.They need to have the same chances for ups and downs that all children have.They need to try things on their own, to try to solve life’s problems and to make mistakes.

H AV E T H E S A M E CHANCES FOR UPS A N D D O W N S T H AT A L L C H I L D R E N H AV E .

T H E Y N E E D TO T RY THINGS ON THEIR

Parents can help their babies in the long term, by letting them experience little struggles such as struggling to get a ball that is stuck under a chair, or dropping most of their favourite food while learning to feed themselves.Through struggle and mastery, babies enjoy triumph.

O W N , T O T R Y T O S O LV E LIFE’S PROBLEMS AND T O M A K E M I S TA K E S .

If you are too watchful or protective of your child, this may actually interfere with your child’s chances to grow and develop self-esteem. Being alone at times gives babies the chance to learn skills like how to calm themselves down and to develop an awareness of their own body senses.

Without meaning to, parents sometimes stop a child from trying new things, or jump in to help rather than trusting that the child is able to solve problems.The child may get the message that “I’m not capable of trying new things”, or “I’m not smart or strong enough to do things on my own”.

All children need time alone as well as time with caring adults. Small babies are very aware of body language and the non-verbal (unspoken) signals we give to each other.They pick up body language messages even more quickly

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GROWING UP WITH A CHD

than spoken messages.To avoid sending your baby negative messages, it is important to learn to relax around your baby and believe in your baby’s abilities.

P R E PA R I N G FOR TESTS

How can we prepare our baby or toddler for tests?

T E L L YO U R TO D D L E R W H AT W I L L H A P P E N I N V E RY S I M P L E W O R D S

BE THERE DURING

It is usually difficult to prepare babies and toddlers for tests or procedures.When you are well-informed and prepared, it is easier to support your child.

T H E T E S T A N D R E P E AT W H AT Y O U S A I D BEFORE

KEEP A POSITIVE AT T I T U D E

HELP THE CHILD FORM TRUSTING R E L AT I O N S H I P S W I T H T H E H E A LT H C A R E P R OV I D E R S

Telling your toddler what will happen, in very simple words, and then being there during the test and repeating what you had said before, may help your child get ready and accept events.

Small children pick up feelings very quickly, and will be more nervous themselves if parents feel upset and worried.The best way a parent can help a small child cope is by keeping a positive attitude, and by helping the child to form trusting relationships with health care providers. For example, when your child sees that you are comfortable and cooperative with the clinic nurse, he or she is more likely to copy your behaviour.

Some procedures can be done on you first while the child watches. An example would be a blood pressure test or an oximeter reading.

If you look relaxed during the test, your child may be more cooperative.

No matter how calm and supportive you are, your child will often be upset and cry during procedures.This is a normal response to an unfamiliar situation.

Why are restraints needed?

To do some tests, your child may need to be restrained.Toddlers may be frightened, restless, or unwilling to cooperate.

To be successful, most tests and procedures need extreme accuracy. Restraints may be used during a procedure to keep your child safe or to make the test results useful. For example, to get clear results, your baby will need to be very still during an x-ray.

While the films are taken, the x-ray technician may need to leave the room for a few seconds. In these situations, restraints are used for your child’s safety.

For a blood test or IV, restraints prevent injury. If your child moves while the needle is being inserted, there could be injury to the vein, bone, tissue, or nerves.

Some ways to restrain a baby or small child include holding him or her closely or using a blanket wrapped snugly around wriggling arms and legs. Sometimes medication may be used.

The health care team will make sure your child is safe and comfortable.

Preparing for procedures by playing Here are some things you can do to help your toddler: “play” the procedure before and after, talk about hospital visits so your

toddler feels more familiar with tests and procedures, visit the playroom after a test is finished, get a medical play kit (helps children

become comfortable with hospital equipment without frightening them).

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Preschoolers When your preschool child is newly diagnosed

H

aving a preschool child diagnosed with a CHD presents its own special challenges to the family.Your child may have seemed healthy, and now you have to adjust to the idea that he or she has a CHD.Your child may look and act no differently than before, so it may be difficult to accept the diagnosis.This is a normal response felt by many parents, families, caregivers, teachers, and friends. Everyone involved may need some time to work through his or her feelings. Parents in particular may feel grief at the changes in their child’s future (see Coping with Your Child’s Diagnosis, page 3-1).

There may be many other changes to cope with, such as a major operation, or medical needs for years to come.

Living with a preschooler with CHD The preschool years can be difficult enough without the added stresses of a CHD— temper tantrums and tears are normal for preschoolers. Just giving medications can be a challenge. It may be helpful to remember that a temper tantrum is a child’s way of making sure that someone is listening and paying attention to something that is bothering him or her a lot, either physically or emotionally.

Preschoolers have no real understanding of “health” or the need for treatment. Most children under six years of age do not understand what a heart is.They generally view painful or uncomfortable procedures as punishment, and may do whatever they can to avoid what you

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

and the healthcare team are trying to do for them. At the same time, young children sense the stress their parents are feeling and may respond with emotional outbursts.

The other children in the family may also be affected by the diagnosis and need extra attention and reassurance that the CHD is not their fault.There may also be changes in family activities, such as some outings may not be possible, and rough activities such as play wrestling may no longer be possible.

What do preschoolers need to learn?

“My little buddy is unfortunately very fickle. She is fine with the nurses until I arrive, and then they become chopped liver!

Thank goodness they

During the preschool years, children generally have their own way of seeing things and it is not always clear to adults. If they don’t know something, they simply “fill in the blanks” with their imagination.

are all so forgiving.”

PA R E N T

From a young age, children look at the world as though they are the centre of it.This is part of normal, healthy development.

Preschool children learn how to behave and about how things work by watching and listening.They like to copy parents and others in pretend play.

Young children are also very sensitive about their bodies, and are concerned that their bodies are not hurt or injured.They worry, for example, that when they have a blood test, all the blood will run out, or that if they have surgery, their insides might fall out.These are normal thoughts for young children, but may take on new meaning if surgery is needed.

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How might illness affect our child’s development?

P L AY I S A G R E AT W AY TO R E D U C E S T R E S S

Children with a CHD often have less energy than other children their age.They may need to spend more time in quiet activities and less time outdoors in physical activities. As a result, they may learn to read and use a computer before they learn to swim or ride a bike.

Children who spend more time at home and less time with their peer group still need time to play and be with others to develop their social skills.

Sick children sometimes spend more time with adults than with other children. Families sometimes need to make a special effort to make sure that their children have normal childhood experiences.

Play is a great way to reduce stress. Children who play don’t get bored and play can help them make sense of things that happen.

Encourage play that is about “the hospital” even if your child’s ideas make you uncomfortable.

How might hospitalization affect our child’s development?

The hospital can be a confusing place for a young child. Children may be more afraid of their own fantasies than of what really happens.Taking time to explain what is happening can help ease their fears. However, most preschoolers will not understand a verbal explanation about a medical problem or treatment.

Preschool children who spend a lot of time sick or in hospital may miss some of the normal childhood play and exploring.

However, with planning, it is usually possible to play, to spend time with the family, and follow normal routines.

Children who spend time in hospital, even when physical activity is restricted, usually make up for lost time quickly when they return home. Family life helps motivate children to get back to normal fun and routines.

Parents may worry about how much activity is safe. By spending time with your preschooler, you will quickly learn to recognize how much activity your child can handle.

Will our child be treated differently from others?

Children with a CHD usually look the same as other children unless they have another medical condition that affects their appearance.They have interests, ideas, and can make friends like other children their age.

Some children with a CHD may not be able to keep up with other children during highenergy activities.You can arrange indoor play dates and activities for children who can’t keep up so they are not disappointed.They might play active games for shorter times or take more breaks.

Children are usually aware of how much they can do, and they do as much as they can.They soon learn to persuade friends into play activities they can manage.

There is also a chance that children might view their hospitalization as a punishment for some unconnected event. Preschoolers need lots of reassurance that they have done nothing wrong.

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Will our child be able to attend daycare?

Most families need some form of childcare, especially if both parents are working.

When considering returning to work, some of the things you may want to consider include: the financial and emotional need to return to work, your anxiety about leaving your child, the increased risk for infection, and

the impact of the infection on your child’s CHD, your confidence in the caregiver’s ability to

recognize symptoms, give medications, and respond to emergencies appropriately

For help finding a qualified caregiver, talk to the social worker or provincial ministry responsible for daycare.

Most children with a CHD can attend daycare.

The daycare will need to be aware of your child’s health issues, needs, and activity level. If your child has a very complex CHD or any other disabilities, you may need to consider a specialized daycare.The clinic nurse or social worker can help you find information about resources in your area.

Respite care may also be available. It is a service that gives parents a break from a child who requires a lot of medical care and attention.There may also be programs that help with the high medical costs of caring for a medically fragile child at home. Ask the clinic nurse or social worker about programs available in your area.

What resources are available to help with our child’s development?

L O C A L R E S O U R C E S F O R C H I L D R E N W I T H D E V E L O P M E N TA L D E L AYS

Infant development program (birth to 3 years)

Child development program (older than 3 years)

Speech and language therapists Physiotherapy Occupational therapy Social workers First Nations advocate (in some hospitals) School nurses and school psychologists Public health nurses Dietitians Provincial health program for at-home care Respite program Condition specific resources(eg. DownSyndrome) HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

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Many children with a CHD do not need any help to develop normally.To find out whether your child needs help, ask your pediatrician, clinic nurse, family doctor, cardiologist, or public health nurse about having your child’s development assessed.

When your child reaches school age, the school nurse is another important person for checking your child’s development.

If your child has a special need, there is usually a variety of programs available.The pediatrician is a helpful person for selecting the best programs for your child.

How can we prepare our preschooler for tests?

Remember that children have short attention spans, so keep explanations to one or two minutes. Explain what will happen using simple words and words that your child uses (different children will say ‘owie’ or ‘stinging’ or ‘hurting’ to describe the same experience).

Try to use “soft language” or the least frightening language possible. For example “make a small opening” is easier to hear than “cut an incision”, even for an adult.

Talk about the test on the day of the test

so your child doesn’t have a lot of time to get worried about it.

Be honest with your child about any

discomfort that may be felt, but don’t dwell on it. Let your child know that it is okay to cry (for example, “Even grown-ups get scared and cry sometimes”). It will be more reassuring for your child if you talk about how proud the child will feel about his or her behaviour, and how proud everyone else will feel.

Explain that the procedure is not

punishment.

After your explanation, watch your child to see if he or she seems worried. Some children become quieter when they are

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worried. If you think your child is worried, ask him or her to talk about it or show you what he or she thinks will happen, using a favourite stuffed animal, doll, or action figure.

If you understand how the test is done,

try play-acting the procedure (see Appendix A: Diagnostic Tests). Be creative in thinking of ways to show how the test will happen or feel. For example, you could show how your child will be asked to lie on the x-ray table, where bandages will be placed, or how an injection is given or an IV is inserted. Imitate the behaviour your child will need to do, such as opening the mouth, holding very still, or breathing deeply.

If your hospital has a child life specialist, he or she will have lots of suggestions on how to explain and demonstrate tests.There may also be toy medical kits that you and your child can play with together.

During the test: Your child may cry, even if the test is not painful.This is a normal response to an unfamiliar situation.

Your child may or may not need restraints.

If your child has been able to complete the test without restraints in the past, let the team member know. For more information about restraints, see Why are restraints needed?, page 7-4.

If possible, stay with your child during

the test. If you can’t be there, arrange for a familiar person to be there, a family member, friend, or staff person.

Bring along a favourite toy or teddy.

Ask the person caring for your child to

limit the number of strangers entering and leaving the room during the procedure, since this can upset your child.

If possible, ask that painful procedures not be

done in the hospital bed, so that your child does not think of pain when he or she sees the hospital room.This may not be possible if your child is in a special unit or isolation.

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School-aged children When your school-aged child is diagnosed with a CHD

H

aving a school-age child diagnosed with a CHD can be a difficult time for a family.Your child may have seemed healthy, and now everyone has to adjust to the idea that the child has a CHD. Your child may look and act no differently than before, so it may be difficult to accept the diagnosis.This is a normal response felt by many parents, families, caregivers, teachers, and friends. Everyone involved may need some time to work through his or her feelings.

Parents in particular may feel grief at the changes in their child’s future (see Coping with Your Child’s Diagnosis, page 3-1).

The diagnosis may also affect other children in the family.Younger children may need to be reassured that their sibling’s heart problem is not their fault. Older siblings may feel overprotective and frightened that something will happen to the child. If possible, older siblings should be included in family discussions and decision-making.

What do school-aged children need to learn?

During middle childhood, family is still important to the child, but it is also the beginning of developing independence. It is a time when children begin to develop interests and strong friendships outside the family in activities such as sports and clubs. Friends are becoming more important, and often these friendships are based on similar interests.

School-aged children can begin to think logically and understand a series of actions.

This means that they can understand what is happening to their bodies and why treatment is needed.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

During the school years, children become more aware of themselves and how others see them.This is the beginning of self-esteem.

Because school age children are developing more advanced communication skills, they need time to use these skills with others.

Discussion is important, between children and their friends and between children and adults.

School-age children spend a lot of time figuring out the world and events in their lives by playing games and talking about ideas.

“I love playing ice hockey. I almost quit because I get so tired, but now I play goal and I’m really

How might illness affect our child’s development?

good at it!”

CHILD

Children with CHD may lose some friends because the friendships have been linked to an activity that your child may not be able to do any longer. Children who have been in sports may find it hard to understand why they can not continue.

Here are some ways in which illness may affect development.

Independence At this age, children find themselves drawn to activities where they can participate and do well. Children with a CHD may get disappointed when they realize they cannot take part in the same way anymore. However, many are able to take part in active sports and other activities.Try to support your child’s interests as you would for any child.

You should also support your child’s need for independence.This may happen at a time when you feel the need to draw your child closer to protect him or her from doing too much and getting an infection.With planning, it is possible to give your child some independence without an increased health risk.

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GROWING UP WITH A CHD

“I explained to him and the other kids

Understanding Children who are old enough to attend school can understand simple explanations of what is happening to their body. Because they can understand what the heart does, they may feel quite frightened.They need reassurance and support from their family and friends.

that his heart was like a jigsaw puzzle that was missing pieces and the surgeon could put the puzzle back together and make it right.”

PA R E N T

Self-esteem As children get older, they become more and more aware of what their body looks like and start to compare themselves to others.

Children with a CHD become more aware of their physical differences and limitations.There is peer pressure to look and be the same as everyone else. School-aged children, especially those who will be having surgery, need a lot of support and understanding to help them cope with changes in their bodies. Questions about “Why me?” and “Why am I the one who is different?” are common for this age group.

Informing others It is important that the family not try to hide the child’s heart problem so that the child can feel normal. Let the school know about exercise restrictions (if any) and signs that the child needs medical attention.You may want to work with the school to plan how to handle a medical emergency.

School work Children who miss a lot of school may have trouble keeping up with their schoolwork.

Most hospitals have a teacher available who can help the child keep up-to-date while in the hospital. Schools can arrange for schoolwork to be done at home if the child is too ill to attend school, or for extra work before surgery.

more about living with their condition, and how to track their symptoms and treatment.

You can help by encouraging questions and helping your child learn about his or her medical history.

How might hospitalization affect our child’s development?

School-aged children have a basic understanding of their bodies, so they can understand what happens during treatment. Most of them believe that different organisms cause different illnesses.This means that children of this age are able to understand their condition, treatment, and why procedures are needed.

For younger children, things that happen in the hospital, such as having a needle to stop pain, do not make sense. For example, a 6-year-old boy admitted with stomach pain and vomiting was very upset that medicine was being given through an IV in his arm. He became very frustrated trying to explain that he should be getting medicine in his stomach to make it better, as his arm was not the problem.

Older school-aged patients are likely to cope much better than younger children, perhaps because they understand more, and perhaps because they can talk about their concerns.

Therefore, the stress of the hospital may have less effect on their emotional development.

For a short time after surgery, children will have less desire to take part in play with other children due to physical restrictions and less energy.

Older children As children approach puberty, and move toward independence in their teen years, they are capable of learning more about their medical conditions.They can also understand

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Children’s normal routines such as going to school, being with friends, going to clubs and hobby groups will be affected. Some children will worry about this. In extreme cases, school-aged children can experience regression (going back to behaviour they had grown out of), depression, or loneliness.

Parents and the health care team can help to prevent problems by giving children time for normal play and being with friends.This can be done even if the child is in hospital for a long time or has to return to the hospital often.

Most large children’s hospitals in Canada are set up to use the Internet, videotaping, and other communications systems to help children keep contact with home and school.

When children know what is happening, are involved in making decisions, and are given the chance for play and hobbies, they cope better with the stress of being in a hospital. Most hospitals offer group play activities that provide children with “social” time.

Most school-aged children with a CHD are able to go to school with their peers.

Children with cyanotic heart disease may have difficulties in school because of low energy levels and learning disabilities.

Children occasionally miss school because of doctor’s visits, tests, hospitalizations, and recovery from surgery. If your child misses a lot of school, you may need to get home and in-school support to help your child complete each grade level.

Parents are often concerned that their child may be doing too much. In fact, sometimes parents don’t realize how much their child can do. On the other hand, teens often think they can do less than the cardiologist recommends.

To make sure that your child is as active as possible in activities he or she can safely enjoy, discuss activities with your child, the cardiologist, clinic nurse, and teachers.

“Parents know their children better than we do. They know how they’ll react, so they know best how to prepare them - what to tell them and when. It really helps when they prepare their kids beforehand.”

L A B O R AT O RY

Will our child qualify for help

TECHNICIAN

at school?

What should we watch for in our child’s development?

Once a CHD is repaired, you can expect normal growth. Most children with a CHD develop thinking skills at a normal rate.

Children with complex heart defects or who have been cyanotic for a long time may be smaller and lighter than their peers, and may have learning disabilities. (See Cyanosis-Blueness of the Skin, page 2-11.)

If you think your child may need help at school, ask for an assessment before school starts. See Local Resources for Children with Developmental Delays, page 7-7 for contact information.The assessment can also be done with the help of the family doctor or the school itself.

To learn more about screening for delays in development and how to get resources and support if needed, see the Local Resources for Children with Developmental Delays, page 7-7.

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How can we prepare our child for procedures?

Will our child be able to attend after-school and other P R E PA R I N G F O R

community programs?

PROCEDURES USE CORRECT T E R M S F O R B O DY PA R T S A N D M E D I C A L PROCEDURES

It is good for your child to maintain as normal a life as possible. Some community programs may ask for a medical clearance if physical activity is involved.

What do we need to know about USE VISUAL AIDS, SUCH AS PICTURES,

physical education in the school?

H OW YO U T H I N K T H E TEST WILL FEEL

LIMIT THE L E N G T H O F YO U R

Most children can take part in physical education (PE) at school without restrictions.

Ask your doctor if your child should have any restrictions. Schools often request a letter to explain exercise restrictions and any emergency plan that needs to be put in place.

See page 7-13 for a sample letter regarding physical limitations.

E X P L A N AT I O N

Can our child travel by airplane?

EXPLAIN THE PROCEDURE LONG BEFORE THE APPOINTMENT

Here are some guidelines for explaining procedures to your school-aged child: use correct terms for body parts and medical procedures, use visual aids, such as pictures, books,

or videos, be honest about how you think the test

BOOKS OR VIDEOS

BE HONEST ABOUT

School-aged children have a reasonable understanding about their bodies and want to know what is happening to them.

Some children with a CHD require special help to get enough oxygen when flying at high altitudes.

Flying at altitudes of 5000 feet or more is generally not recommended for children with: moderate to severe pulmonary hypertension,

will feel, limit the length of your explanation to

your child’s attention span (break up the explanation into a couple of shorter sessions if necessary), explain the procedure long before the

appointment, unless your child has shown in the past that he or she is likely to become worried.

Provide opportunities for your child to express any concerns.Time with a trusted friend or family member, opportunities to draw, and opportunities for play-acting can be helpful.

Help your child learn and practise ways to control frightening or uncomfortable situations.

severe congestive heart failure,

This might include: counting slowly,

significantly low oxygen saturation.

breathing deeply in through the nose and

Ask your doctor if these apply to your child.

out through the mouth, relaxing by imagining pleasant situations,

If oxygen is needed during a flight, contact the airline well in advance to make arrangements.

telling jokes or funny stories that will help

distract him or her from the situation, if your child is responsive to humour.

Because school-aged children are reaching towards independence, they often do not want their parents present during procedures.

Respect their wishes.

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RECOMMENDATIONS FOR PHYSICAL ACTIVITY IN SCHOOL FOR CHILDREN WITH HEART DISEASE

Please photocopy this letter to clarify your physicians guidelines for your child’s activities in school.

DAT E

TO W H O M I T M AY C O N C E R N ,

, a patient of mine, has a congenital heart condition.The child’s cardiac diagnosis is

.

The following recommendations are guidelines for physical activity in school.

May participate in the entire physical education program, including varsity competitive

1.

sports, without any restriction.

May participate in the entire physical education program EXCEPT for varsity competitive

2.

sports where there is strenuous training and prolonged physical exertion, such as football, hockey, wrestling, soccer, and basketball. Less strenuous sports such as baseball and golf are acceptable at varsity level. All activities during the regular physical education program are acceptable.

May participate in the physical education program except for restrictions from all

3.

varsity sports and from excessively stressful activities such as rope climbing, weight lifting, sustained running (i.e., laps) and fitness testing. MUST be allowed to stop and rest when tired.

4.

May participate only in mild physical activities such as walking, golf, and circle games.

5.

Restricted from the entire physical education program.

6.

Additional remarks: (see other side)

7.

Duration of recommendations:

.

If you have any questions about these recommendations, please contact me at

.

TELEPHONE NUMBER

Sincerely,

C ARDIOLOGIST’S SIGNATURE

* Source: Cook E.H. & Higgins, S. S. Congenital Heart Disease. In Jackson, P. L. and Vessey, J.A. Primary care of the Child with a Chronic Condition 3ed., Mosby St. Louis 2000.

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GROWING UP WITH A CHD

Teens and transition TRANSITION

As children develop into young adults, they need to be able to take care of their own health rather than rely on their parent.

This shift is called “transition”.

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T

he teenage years are a difficult time for most young people. It is a time when they are trying hard to fit in with everyone else, but at the same time trying to find their own unique place in the world. If you are the parent of a teenager with a CHD, this time of life can be particularly stormy for you and your whole family.

CHDs are most often diagnosed in infancy so the parents are the ones who learn about CHDs and make decisions about their child’s health care needs. As children develop into young adults, they need to be able to take care of their own health rather than rely on their parents.This shift is called “transition”.

You may hear health care professionals talk about “transitioning” to adult care.

Transition planning involves youths with CHDs, their families, and the health care team.

Transition care is planned specifically for each teen based on their personal traits such as emotional strength, intelligence, physical abilities, personal goals, and support from family and friends. Planning may start whenever the child or youth is interested in learning more about the heart condition or care needs. In general, the health care team will begin formal education and planning for transition at about 10 years of age (around the grade 5 level).

Because teens are reaching for their independence, the following section is written for them rather than for their parents. It includes self-advocacy, gaining independence in health care, puberty and sexual development, peer and social supports, education and vocational planning, recreation, and making choices that will not limit their health. As a parent, you may find the information in the section helpful, but the greatest success will likely come if your teen reads it and takes responsibility for his or her own health.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

GROWING UP WITH A CHD

REFERENCES Brenner, Avis (1984) Helping

Gaynard, Laura et al (1990)

Psychosocial Care of Children in Hospitals A Clinical Practice Manual from the ACCH Child Life Research Project ACCH, Bethesda MD.

Children Cope with Stress Jossey-Bass Publishers, San Fransisco.

Cook E.H., Higgins S. S. Congenital

Heart Disease. Primary Care of the Child with a Chronic Condition, edited

by P.L. In Jackson, J.A.Vessey. Mosby, St. Louis, 2000.

Gonzalez-Mena, Janet (1989) Infants,Toddlers, and Caregivers Mayfield Publishing Co., Mountain View, California.

Lieberman, Alicia (1993)

The Emotional Life of a Toddler The Free Press, NY, NY. Oremland, Evelyn K (2000) Protecting

the Emotional Development of the Child: The Essence of the Child Life Program Psychosocial Press, Madison, Connecticut.

Lansdown, Richard (1996) Children in

Hospital; A Guide for Family and Carers Oxford University Press, Oxford.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

7-15

GROWING UP WITH A CHD

NOTES

7-16

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

8

JUST

FOR TEENS

Taking charge Your congenital heart defect (CHD) was probably diagnosed when you were still a baby or small child. Over the years, your parents, guardian, or other adults have been responsible for your health care, and you may or may not have had a chance to make decisions about your own health.

Receiving the right health care

A

s you grow up and become an adult, you will become more independent in all areas of your life—learning to drive, choosing your own friends and activities, and deciding what type of education and career are right for you.Your health care is another area in which you will need to take charge.

For years, you may have been with a health care team that specializes in caring for children. As you become an adult, you will need to make the transition to adult health care.This is done so that you receive the care that is right for you.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

Many resources (books, pamphlets, people, groups, and videos) are available to help you make the transition to adult care. For example, you may be given a pamphlet that describes your health condition and information you need to know. Some hospitals also have workbooks to help you learn about your health condition.

This section will give you some tips for making the transition to the adult health care system.

GROWING UP L E A R N I N G TO D R I V E

C H O O S I N G YO U R OW N F R I E N D S A N D ACTIVITIES

D E C I D I N G W H AT T Y P E O F E D U C AT I O N AND CAREER ARE R I G H T F O R YO U

TA K I N G C H A R G E O F YO U R H E A LT H C A R E

8-1

JUST FOR TEENS

WHAT DO I NEED TO KNOW ABOUT MY HEART CONDITION? As you get older, you may start to have more questions about your heart condition.You will likely begin spending more time away from your parents - at school, and with friends.You will be asked to explain your heart condition and answer certain questions about your own care, so you need to be sure you know what to say.Try answering the questions below - if you need to, ask your family and health care team for help.Take this list of questions to your next clinic appointment to make sure the answers are right.Then practice the answers until you feel comfortable with what you are saying.

Questions

Answers

What is my heart condition called?

How and when was I diagnosed with my heart condition?

Is there any known cause of my heart condition?

Do I have any other health concerns that are not related to my heart condition?

If yes, what are they called?

What treatments and surgeries have I had in the past?

Do I need to take any medications on a regular basis? If so, what are they called and what do they do?

8-2

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

JUST FOR TEENS WHAT DO I NEED TO KNOW ABOUT MY HEART CONDITION? - CONTINUED

Questions

Answers

Are there any medications I should not take?

Are there any special precautions I need to take with dental or other medical procedures?

Are there any activities I should not do? Why not?

What are the signs and symptoms that would mean I should call or visit my family doctor?

What tests or procedures am I likely to need on my next follow-up visit with my cardiologist?

Will I likely need any surgical procedures in the future?

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

8-3

JUST FOR TEENS

TREATMENTS, TESTS AND MEDICATIONS When you understand and follow a treatment plan, you will feel involved and in control of your health condition. Most teens with congenital heart defects face very few, if any, restrictions in their day-to-day life. However, some teens get mixed messages about diet or activity restrictions and you may not be sure which information is right. If so, it is important to talk to your health care team so that you are confident and in control of your day-to-day activities.

Write down all the important things you do to keep yourself as healthy as possible. It is your list; so include everything you think is important.We suggest you write it in pencil so you can keep it up-to-date.

TO DAY ' S DAT E :

List

U P DAT E D :

What can I do?

Medications (dose and schedule)

Medications to avoid

Activities/fun

Exercises

Activities to avoid

Treatments

Diet

Things I can do to keep myself healthy

* Adapted from Getting On Trac: A Workbook For Youth Living With Chronic Conditions, 1999.

8-4

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

JUST FOR TEENS

ADVOCACY: YOUR RIGHT TO INFORMATION AND DECISION-MAKING Making the transition to adult care involves taking on more and more responsibility for your own care. Learning how to advocate or stand up for yourself and your rights takes time to develop.You have the right to be involved in decisions that affect you and your health.This may feel awkward at first, especially if your parents have been the ones who have made decisions for you in the past. Remember - you have time to learn from them and others about what questions you need to ask and what things to consider in making important health decisions.

Rights

Your Ideas

YO U H AV E T H E R I G H T:

To be safe from all types of abuse.

To be taken care of and have enough food,

clothing, shelter and medical care.

To go to school and take part in cultural and

recreational activities.

To have a say in decisions that are made about you.

To be fully informed about what is happening to you, with

information that is clear, helpful, and easy to understand.

To advocate for yourself (the strongest form of advocacy

is self-advocacy) - speaking for yourself in dealing with those who are making decisions about you.When you can’t advocate for yourself for whatever reason, you have the right to ask someone to help you say what you need.

Along with the people who care about you, to be

involved in decisions that affect you.

* Adapted from Office of the Child,Youth and Family Advocate,Vancouver, BC, Canada as cited in Getting On Trac: A Workbook For Youth Living With Chronic Health Conditions, 1999.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

8-5

JUST FOR TEENS

CHOOSING YOUR OWN FAMILY DOCTOR As you grow older and think about moving away from home, you may think about choosing a different family doctor than the doctor your parents see. A family doctor is interested in your specific condition as well as all your general health needs. A family doctor who lives in your own community will know about programs and services that can support your plans.The following steps can help you choose a family doctor:

Choosing a family doctor 1. Ask your family and friends for names of suggested doctors.

2. Think about the type of doctor you would like; male or female, the location of his or her office, someone who understands your language or culture, and the types of patients he or she sees.

3. Shop around - make sure your doctor meets “your” needs.

You may want to talk to other teens with CHDs to see if they have a family doctor that they recommend.

4. Make an appointment as a “new patient”, and have your medical card ready to give the receptionist with your phone number and address.

5. On your first visit remember your medical card and any information about yourself you might need, including phone number, address, specialist information, and medical history.

6. Ask questions (is this doctor right for me?): Is the doctor experienced with my condition?

What days of the week does this doctor work?

What hospital does this doctor admit to in case

of an emergency?

7. Ask yourself: Am I comfortable with this person?

Is this doctor listening to me?

Do I understand the answers to my questions?

Am I treated with respect?

Is this doctor interested in me and what is

happening in my life?

Is this a person I can learn to trust?

Is this a person I can contact if I feel in danger

from myself or others?

Is this a person who welcomes my ideas

and suggestions?

Will information be kept private between the

doctor and myself?

E: DR. MY CHOIC OURS: OFFICE H FA X : PHONE: ADDRESS:

RECEPTIO

ME: NIST’S NA

* Adapted from Getting On Trac: A Workbook For Youth Living With Chronic Conditions, 1999.

8-6

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

JUST FOR TEENS

Talking to the rest of your health care team Your team may have many doctors other than your family doctor. Keep track of the names of these health care professionals, how they can support you, and how to contact them, by filling in the health care professional directory (Who’s who on your health care team) in the Directory in the Record Keeping section, page 13-4.

As you start to become more involved in your own health care, there are several questions you may want to ask to help you get ready for adult health care.

Let these health care professionals know that you want to talk to them about: your condition, treatments and

medications, being involved in and making health

care decisions, your abilities and plans for the future

at school or in the job market, school, friends, dating, and relationships, videos, books, and pamphlets that teach

about your heart condition and about becoming more independent, choosing an adult medical specialist, and

what is expected of you as an adult patient.

Preparing for an emergency As you grow older you will likely be doing more and more activities independently, and your family will not always be with you.When you know what to do and whom to contact if you are sick, your confidence will grow and you will worry less.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

Some changes to your health take several hours or days to happen so you may have some warning. However, you may have sudden changes if you have a complex type of CHD or unusual heartbeat rhythms (dysrhythmias).

Ask your health care team for symptoms you should be concerned about, particularly those that mean you should contact a health care professional.

Which doctor to call You need to know which doctor or specialist to talk to for different things. For example, your family doctor may be able to help you with some mild symptoms, but for more severe problems, your cardiologist may want you to contact him or her directly or call for an ambulance by dialing 911 or your local emergency number.

TA L K I N G IT OUT

Let your health care professionals know that you want to talk to them about: YO U R C O N D I T I O N , T R E AT M E N T S A N D M E D I C AT I O N S

B E I N G I N V O LV E D I N

MedicAlertTM Your cardiologist may ask you to wear a MedicAlertTM bracelet or necklace. A MedicAlertTM tells the emergency team that you have a health concern that may affect the care they provide. It also provides critical medical facts about your health condition, a 24-hour hotline number they can call, and your member ID number.This information allows the emergency team to contact the MedicAlertTM hotline for more medical details from your confidential computerized record, including your medications, allergies, physician, and emergency contacts.This can help to avoid life-threatening complications and can play an important role in your survival and treatment. Ask your cardiologist or cardiac nurse more about MedicAlertTM and whether you should think about wearing one.

M A K I N G H E A LT H C A R E DECISIONS

YO U R A B I L I T I E S A N D PLANS FOR THE F U T U R E AT S C H O O L O R IN THE JOB MARKET

SCHOOL, FRIENDS, D AT I N G A N D R E L AT I O N S H I P S

8-7

JUST FOR TEENS

YOUR EMERGENCY PLAN

When you need to get medical care, it helps to have your medical history ready ahead of time.

Your cardiac team may be able to give you a “health passport”or summary of your medical history to use to record medical information. If not, fill in the following form in pencil and update it when there are changes.

Medical History

OT H E R H E A LT H C O N C E R N S / A S S O C I AT E D D I S O R D E R S :

NAME:

(Include any history of irregular heart rhythms) DAT E O F B I RT H : D AY / M O N T H / Y E A R

P ROV I N C I A L H E A LT H C A R E C A R D N U M B E R :

E M E R G E N C Y C O N TAC T / N E X T O F K I N :

(List people who know about your condition and would be good contacts in case of an emergency. Provide name, relationship, and contact phone number).

1.

2.

3.

FA M I LY D O C TO R S N A M E A N D P H O N E N U M B E R :

P R E V I O U S S U R G I C A L O R OT H E R I N T E RV E N T I O N S :

(Include date they were performed and any significant complications)

P E D I AT R I C I A N ’ S N A M E A N D P H O N E N U M B E R :

CARDIOLOGIST’S NAME AND PHONE NUMBER:

N A M E O F YO U R H E A RT C O N D I T I O N :

W H E N YO U W E R E F I R S T D I AG N O S E D W I T H A C H D :

8-8

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

JUST FOR TEENS YOUR EMERGENCY PLAN - CONTINUED

Medical History

A L L E R G I E S O R D RU G R E AC T I O N S :

C U R R E N T H E A LT H S TAT U S :

(Include current management plan, potential complications, and plan for next cardiac follow-up appointment)

M E D I C AT I O N R E S T R I C T I O N S :

D E S C R I B E A N Y S P I R I T UA L O R C U LT U R A L C O N S I D E R AT I O N S T H AT M AY A F F E C T YO U R C A R E :

C U R R E N T M E D I C AT I O N S :

(Include name, amount, and times taken/day) 1.

2.

D E S C R I B E A N Y A D D I T I O N A L I N F O R M AT I O N YO U WO U L D WA N T E M E R G E N C Y H E A LT H C A R E P ROV I D E R S 3.

4.

TO K N OW A B O U T YO U O R YO U R T R E AT M E N T:

(Consider possible situations where you may not be able to talk or communicate your concerns or desires directly)

F U T U R E M E D I C A L T R E AT M E N T S O R S U R G E RY:

S U M M A RY L A S T U P DAT E D : D AY / M O N T H / Y E A R

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

8-9

JUST FOR TEENS

FEELING GOOD ABOUT YOUR BODY How you see yourself and your body is a big part of your self-esteem—how you feel about yourself. Feeling good about the way you look is especially difficult these days because ads and the media bombard us with images of “the perfect body”. You may be particularly concerned about the way you look because of the effects of your CHD.You aren’t alone. Many teens with CHDs are concerned that they look different than their friends - possibly because they are small for their age, have scars from surgery, have a blue tinge to their skin from cyanosis, or are taking medications that affect their appearance.

It is often helpful to get opinions from your peers or health care professionals involved in your care about how you might be able to understand and change or accept your appearance.The table below may help you think through your concerns.Write down the things you are worried about, and then write your ideas about how you can either change your appearance or deal with your concerns.

I wish I could change my. . .

Here is my idea!

Skin

Face

Size

Incision

Body

Arms

Legs

Other

* Adapted from Getting On Trac: A Workbook For Youth Living With Chronic Conditions, 1999.

8-10

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

JUST FOR TEENS

Feeling connected Questions about sex Learning about how your body develops and changes is part of your sexual health.You may already have heard a lot of mixed information about heart problems affecting sex. Sometimes this information is about adult heart disease don’t believe everything you hear.Talk to the health care team, ask about sex and CHDs, and check whether what you’ve heard from other people is correct.Write down any questions you have and ask a trusted member of your health care team to go over them with you.You can ask that you and your specialist have some time alone for part of your appointment if you don’t want a parent there.

Even if you have a great family and many friends, you can still feel different and alone.

One way to help you feel less alone is to get “connected” with others who have a similar health condition.Ask members of your cardiac team if they are aware of any resources for peer support for youth with CHDs. Some possible connections are listed below.

Peer support groups Peer support groups or associations for youth with CHDs, allow you to: make new friends,

FEELING CONNECTED A S K YO U R C A R D I AC T E A M TO P R OV I D E YO U WITH RESOURCES FOR P E E R S U P P O RT

connect with others who may share

your concerns and questions, find information about your heart

Questions you may want to ask the specialist/cardiac care team How will my CHD affect the way I

change and develop?

How will my CHD affect puberty?

How will the medications I take affect

the way I develop?

How will puberty affect the medications

I take?

Will I be able to have children if I

choose to?

Do I need to consider different forms

of birth control because of my CHD or medications?

How will pregnancy affect my CHD and

my health?

condition and how to control it, share interests, have some fun.

Another teen Consider a one-to-one connection with another teen with a CHD.Your cardiologist, clinic nurse, child life specialist, or social worker may be able to connect you with another teen who has had similar experiences and who shares similar interests.

Websites There are websites just for teens with health concerns and CHDs. Some websites include chat rooms or links to other teens with similar interests.

Magazines Magazines or newsletters provide information for people with similar health conditions.

How will my CHD affect my pregnancy?

Will my children have a CHD?

Summer camps Summer camps for teens with a CHD are a great chance to have fun with peers who share similar experiences. * Adapted from Getting On Trac: A Workbook For Youth Living With Chronic Conditions, 1999.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

8-11

JUST FOR TEENS

EXPRESSING YOURSELF

Sometimes writing things down or keeping a journal can help you think through your feelings and remember what you learn. See if writing down your thoughts helps you.

Here are some ideas you may want to write about: Who can I talk to for advice, help and support?

How can I meet people and make friends?

I can get information about my condition and programs from . . .

I would describe my friends as . . .

I know I am not alone because . . .

8-12

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

JUST FOR TEENS

When was my heart condition diagnosed?

Planning your future Your heart condition may mean that you cannot take part in some activities or certain jobs. It is important to talk to your school teachers or employer about your heart condition to ensure your safety and the safety of others. It is good to be honest about your condition and what you can reasonably do.

Questions for you Q: Who needs to know about my heart condition and why?

Teachers/Professors School Nurse/School Health Unit

What causes CHDs? Is it contagious?

Has my heart defect been repaired? When?

Am I still receiving treatment for my CHD? Has my specialist discussed the possibility

of further surgeries or tests in the future?

Am I currently taking any medications

related to my heart condition? If yes, can they affect my ability to concentrate, stay awake, drive a vehicle, or participate in certain activities?

COMMON QUESTIONS

Here are some questions others may ask you: W H AT I S T H E N A M E O F M Y H E A RT CONDITION?

What signs or symptoms indicate that I

need medical help?

Principal/School Administrator

What, if any, are my emergency instructions?

Coaches/Counsellors

Who should be contacted in the event of

W H AT C A U S E S C H D S ?

W H AT S I G N S

Q: What is it about my heart condition that I need to share?

Q:What potential actions do they need to be prepared for?

a health emergency?

I N D I C AT E T H AT I N E E D MEDICAL HELP?

Do I have any activity restrictions?

Will I need any changes or help so that I

can participate in school or work?

Questions others may ask you Employers, teachers and your peers may have questions for you. Discuss the questions below with your family and health care team, and be prepared to answer them if asked:

W H AT A R E M Y EMERGENCY INSTRUCTIONS?

D O I H AV E ANY ACTIVITY RESTRICTIONS?

What is the name of my heart condition?

Do I have any related or unrelated health concerns (for example, a history of seizures)?

* Adapted from Getting On Trac: A Workbook For Youth Living With Chronic Conditions, 1999.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

8-13

JUST FOR TEENS

PLANNING YOUR FUTURE - ACTIVITY RECOMMENDATIONS

Some types of CHD can affect many parts of a person’s life.You may want to ask your family doctor or cardiologist if you need to restrict your activity. (Refer to page 7-13 for additional resources) My health condition does not warrant any activity restrictions.

I should avoid activities such as

because

.

I should not sky dive or deep sea dive because

.

I should not drive a

because

.

I should not participate in strenuous weight lifting activities because

.

I should not participate in contact sports such as

because

.

The following careers or jobs,

are not recommended because , .

* Adapted from Getting On Trac: A Workbook For Youth Living With Chronic Conditions, 1999.

8-14

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

JUST FOR TEENS

What kind of medical insurance do I need?

Some Helpful Hints: Start looking for answers before you are 18 years old.

Have your parents/family members let

You will need your own insurance when you are no longer covered by your parents/ guardian. It is important to apply for coverage in advance so that you aren’t faced with big bills.You may also qualify for additional community or government assistance, depending on the type of heart defect and how it affects your day-to-day activities.

Here are some questions to ask about insurance plans and benefits: On what date does my parents’/guardian’s medical insurance no longer cover me?

What services am I entitled to through

their plan?

How do I get continued medical, dental,

and extended health insurance?

you read their insurance policies.

Write down the answers to these

questions.

Talk to your social worker about insurance

plans and benefits.

INSURANCE HINTS

Collect brochures that explain how the

plans work.

LOOK FOR ANSWERS BEFORE REACHING 18

Talk to your pharmacist and social worker

about ways to pay for your medications.

Ask them how much the medications

H AV E YO U R PA R E N T S L E T YO U R E A D T H E I R

cost without coverage so that you are aware of costs.

INSURANCE POLICIES

Think ahead. Make sure you have medical

COLLECT BROCHURES

coverage before you take a trip.

T H AT E X P L A I N H O W T H E P L A N S WO R K

What medications are covered by my

province’s drug plan?

A R R A N G E H OW TO PAY F O R M E D I C AT I O N S

Are there other ways to get coverage

W I T H YO U R

for these medications?

PHARMACIST AND S O C I A L WO R K E R

What other benefits and services can

I apply to receive?

M A K E S U R E YO U

Travel: transportation, education programs,

H AV E M E D I C A L

disability tax credits.

C OV E R AG E B E F O R E Y O U TA K E A T R I P

Other insurance plans to consider

and enquire about include: f Travel Insurance f Life Insurance f __________________________

* Adapted from Getting On Trac: A Workbook For Youth Living With Chronic Conditions, 1999.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

8-15

JUST FOR TEENS

What can I do to be heart healthy?

HOW TO BE H E A LT H Y BE SMOKE FREE

Be smoke-free Smoking increases the chance of getting all major forms of heart disease and stroke, and people with CHDs are very much at risk.

Smoking is more dangerous based on the number of cigarettes smoked per day, how long a person smokes, the age when a person starts smoking, and how a person inhales.

B E P H Y S I C A L LY ACTIVE

K E E P A H E A LT H Y BLOOD PRESSURE

E A T A H E A LT H Y, L O W- F AT D I E T

M A I N TA I N A H E A LT H Y W E I G H T

C O N T R O L YO U R STRESS

Three agents in tobacco smoke that contribute to cardiovascular disease are tar, nicotine, and carbon monoxide.Tar is left as particles in the lung. Nicotine is the addictive part of cigarettes that makes it so hard to quit. Nicotine also stimulates the sympathetic nervous system, which leads to an increased heart rate, increased heart muscle contraction, increased sugar or glucose release, increased insulin production, narrowed blood vessels (or vasoconstriction) and damage to the inner arterial wall. Nicotine damages the inner wall of the artery by stimulating further plaque development and increasing platelet stickiness, which means less blood flow to the heart muscle. Carbon monoxide reduces the oxygen going to tissues throughout your body, including your heart and brain.

Tobacco smoke worsens heart, lung, and allergic conditions of Âź of all Canadians who have those kinds of conditions. Non-smokers are affected too. New studies show that second-hand smoke contains more dangerous toxins than the smoke inhaled by the smoker.

8-16

Be physically active Regular physical activity is an important part of daily life for teens.The average Canadian child or youth watches television for more than 26 hours per week.This is above the 25 to 30 hours they spend sitting in school.

Three types of activities are needed to keep the body healthy: endurance, flexibility, and strength. Doing a variety from each group, and activities that use the large muscle groups, such as walking and swimming, gives you the most health benefits.You don’t have to do rigorous sports or training to improve your health. However, the greater the activity level and amount, the greater the benefit.

To get the benefits of cardiovascular exercise, you need at least 60 minutes of mild physical activity every day or 30 minutes of moderate activity four times per week to stay healthy or improve health.The length of time you need to spend on an activity depends on how much effort you put into it.You can also do 60 minutes of exercise spread over the day in 10-minute sessions.

Regular physical activity raises high-density lipoprotein (HDL) levels in the body, makes the muscles of the body more efficient, improves circulation, and increases the diameter of the coronary arteries.These effects help keep the heart muscle fit and able to efficiently supply oxygen to the rest of the body. Exercise can also help you manage stress, control your blood pressure, and keep a healthy weight.

Before starting any exercise program, you should check with your doctor about the activity level that is safe for you.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

JUST FOR TEENS

Keep a healthy blood pressure Blood pressure is a measure of the force of blood on the walls of an artery as the blood is pushed from the heart. High blood pressure (hypertension) causes the arteries to become stiff and narrow, causing the left ventricle to work harder. Hypertension starts in men and women between the ages of 15 and 24.

Children, even young babies, can have high blood pressure because of a disease (such as diabetes) or the use of some medications.

Hypertension has no symptoms. It is sometimes called the “silent killer” because there are often no warning signs until there is a serious problem.The only way to know your blood pressure is to get it measured with the right equipment.You should have your blood pressure checked at least every two years, or more often if your doctor recommends it.

Keep a record of your blood pressure.You and your doctor can decide if any treatments are needed to keep your blood pressure healthy.

To receive a free blood pressure wallet card, call your local Heart and Stroke Foundation.

Eat a healthy, low-fat diet A healthy diet has a variety of foods, and is high in fibre and low in fat.

To promote health and prevent disease: Enjoy a variety of foods.The four food groups in the current Canada’s Food Guide to Healthy Eating each provide different nutrients, and when eaten on a daily basis, give you a healthy balance.

Select cereals, breads, other grain

Choose lower fat dairy products, leaner

meats and foods prepared with little or no fat. Dairy products with a lower percentage of milk fat (M.F.) or butter fat (B.F.) give you the protein and calcium necessary for health (for example, 2%, 1% or skim milk for coffee or drinking).Trim visible fat from meat and choose lower fat cooking methods such as roasting, broiling or baking. Note: A reasonable portion of cooked meat is the size of a deck of cards, about 50 to 100 grams.

E AT I N G H E A LT H Y E N J OY A VA R I E T Y OF FOODS

Limit salt (sodium) intake. Eating foods

high in salt, or adding a lot of salt to your food can cause some people to develop high blood pressure.Your doctor will tell you whether you need to control your salt intake to control your heart condition.

SELECT CEREALS, WHOLE GRAIN BREADS, OT H E R W H O L E G R A I N P R O D U C T S , V E G E TA B L E S AND FRUITS

Limit caffeine intake. Caffeine is found

in coffee, colas, tea, and chocolate. For people who are sensitive to caffeine, it can aggravate heart conditions such as a racing or irregular heartbeat, especially with large amounts. Canada’s Nutritional Recommendations suggest that you have only up to four cups of regular coffee per day.

Your cardiac team may recommend dietary choices that are helpful for your heart condition.

C H O O S E L OW E R F AT D A I RY P R O D U C T S , L E A N E R M E AT S AND FOODS

L I M I T S A LT I N T A K E

L I M I T C A F F E I N E I N TA K E

Maintain a healthy weight For overweight people, the heart has to work harder. Most people can keep a healthy weight by having a balance of regular physical activity and healthy eating.

products, vegetables, and fruits. By eating from these food groups, your fat intake is automatically low. Choose whole grain products or enriched foods.

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G E T T I N G YO U R LICENSE YO U M AY N E E D

Control your stress People with high levels of stress or continued stress have higher blood cholesterol levels, increases in blood pressure, and have platelets that are more likely to clot (clump together inside the blood vessels). Stress-filled lifestyles also make it difficult for people to make healthy lifestyle choices.

ADDITIONAL MEDICAL I N F O R M AT I O N F R O M YO U R D O C TO R

C E R TA I N M E D I C AT I O N S M AY

The first step in reducing and managing stress is to figure out what is causing it. Situations that cause stress are called stressors.These may be major events (for example, changing jobs), or daily hassles (for example, traffic jams).

P R E V E N T YO U F R O M GETTING A LICENSE

To begin managing stress, you need to be able to face it, note your reaction to it, and try to change your reaction.

S H O U L D YO U R MEDICAL CONDITION C H A N G E , TA L K W I T H YO U R D O C TO R TO MAKE SURE THERE A R E N O S I T U AT I O N S T H AT W O U L D A F F E C T YO U R D R I V I N G

Some suggestions include: regular physical activity, relaxation techniques, sharing feelings, managing time, eating a balanced diet, participating in other activities that

Getting a driver’s license Most teens and adults who have a CHD can drive a vehicle. However, because of your history of having a heart condition, you may need additional medical information from your doctor so that you can get a driver’s license.

Some people on certain medications or with a history of seizures may not be allowed to drive a vehicle.

The following checklist may help you prepare for getting your driver’s license.

According to your family doctor and heart specialist, is there anything about your health condition that would prevent you from getting your driver’s license?

If your family doctor is not sure,

contact your local Motor Vehicle Branch for further information, If your medical condition changes after you

have a driver’s license, talk to your doctor to make sure that there are no situations that would affect your driving.

are enjoyable, confronting the person or situation that

is causing the stress.

A health care professional can give you advice on how to manage stress. Information is also available from your local Heart and Stroke Foundation.

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JUST FOR TEENS

Think of ways to feel good. Choose

Maintaining your heart health: minimizing your risks One of the hardest parts of growing up is peer pressure. It is part of every teenager’s junior and high school years. Peer pressure often pushes teens into doing things they might otherwise not do, such as smoking, drinking, and doing drugs. For teens with a CHD, these choices can have very harmful effects.

hobbies, interests and activities that make you feel good about yourself.

Think of ways you might handle the following situations . . .

Your friends are smoking at school and they might think you are uncool if you don’t “try one”.

PEER PRESSURE YO U C A N S AY “ N O ” T O SMOKING AND STILL H AV E F R I E N D S

Your house is smoke-free.When your

friends visit, they say if you don’t let them smoke, they won’t bother visiting.

PRACTICE A S S E RT I V E N E S S

As a teen with a CHD, you need to avoid doing things that will put your health at risk, such as smoking, which makes your heart work harder and reduces the amount of oxygen available to you; and drinking and taking street drugs, which can interfere with your heart medications and have negative effects on your overall health.

Here are some effective ways to resist negative peer pressure: Remember that it is possible to say “no” and still have friends. Say “no” and mean it.

You go to a friend’s house for a party. All

SKILLS

the older kids are smoking.They ask you if you want to try, and offer you a cigarette.

PRACTICE RESPONSES

Your friends invite you to stay for dinner

and they are smokers.

TO R E S I S T S M O K I N G OR DRUGS, SUCH AS, “ N O T H A N K S , I WA N T

Your dad and mom have agreed only to

smoke outside.When you go to watch TV, one of them is smoking in the TV room.

You have a smoke-free home.Your aunt

comes to visit, and when your parents are out, she starts smoking in the house.

TO K E E P M Y B O DY H E A LT H Y ”

T H I N K H OW DA R I N G TO B E D I F F E R E N T C A N B E M AT U R E A N D COURAGEOUS

Practice assertiveness skills. Rehearse for

the times when you will have to say “no” in a difficult situation.

Practice responses you can use to resist

smoking or drugs, such as, “No thanks, I want to keep my body healthy” or ”I don’t want to pollute the air and make people breathe in my second-hand smoke” or just say, “No thanks”.

Explore your own fears of being different.

Saying “no” can make you feel different, and it is scary to face possible ridicule and rejection.Think about what makes a true friend, and how daring to be different can be mature and courageous.

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MEDICATIONS DO NOT MIX If you take more than one medicine, your doctor and pharmacist are very careful to make sure they can be mixed safely.

Medications prescribed to help your health condition may not mix well with other medications, herbal remedies, or street drugs.

These drugs can have even more serious or life-threatening effects if you have certain types of CHDs.Your friends may offer you drugs such as alcohol, cigarettes, or cocaine. Find out what these drugs can do to you and the effects they will have on your health.Ask your doctor or pharmacist. Make a list of your medications, then answer the questions below: What over-the-counter medications should I avoid?

Why?

What herbal remedies, vitamins and naturopathic therapies should I avoid?

Why?

I take the medications listed below:

What would happen if I mix them with: Alcohol

Cigarettes

Marijuana

Other

1.

2.

3.

4.

5.

6.

7.

* Adapted from Getting On Trac: A Workbook For Youth Living With Chronic Conditions, 1999.

8-20

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JUST FOR TEENS

GRADUATION CHECKLIST

Before you leave for the adult world, double check that you have everything packed and ready to go.

Here is a list for you to review

I am comfortable with my family doctor.

My family doctor is aware that I am changing specialists.

I have transferred to an adult clinic/specialist, and know the contact information.

My personal copy of my health records is up-to-date.

I have questions ready to ask the adult health care team.

I understand what I need to do about insurance.

I have a social plan for making new friends and connecting to groups or clubs.

My school information is up-to-date.

I understand my restrictions on driving and other activities.

I have answers to my questions about sexual health and family planning.

My volunteering/employment records are up-to-date.

I have information about any transportation benefits and services I may need or am entitled to.

I understand what medications I am on, how to take them, and I am aware of any side effects, long-term effects, and combination effects.

I understand what to expect as an adult when it comes to right to information, informed consent, and treatment.

I have thanked the pediatric team and given them a warm good-bye.

* Adapted from Getting On Trac: A Workbook For Youth Living With Chronic Conditions, 1999.

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JUST FOR TEENS

SOURCES Canada’s Food Guide to Healthy Eating,

Health Canada 1997. http://www.hc-sc.gc.ca/hppb/

nutrition/pube/foodguid/foodguide.html Fodor J.,Whitmore R. D., Leenen P.,

Larochelle P. Lifestyle modifications to prevent and control hypertension: 5. Recommendations on dietary salt.

CMAJ 1999; 160 (Suppl 9):S 29-34.

Nutrition Recommendations -

The Report of the Scientific Review Committee. Health and Welfare Canada, 1990.

8-22

Getting on Trac. A Workbook for Youth

Kelton S. Sexuality education for

Living with Chronic Health Conditions.

Children’s and Women’s Health Centre of British Columbia, December 1999.

youth with chronic conditions.

Pediatric Nursing 1999: 25(5), 491-496.

Paone M. C.,Whitehouse S., and

Sparacino, P. S.A.,Tong E. M., Messias D. K. H., Foote D., Chesla C.A., Gilliss C. L.The dilemmas of parents of adolescents and young adults with congenital heart disease. Heart and Lung 1997:26(3), 187-95.

Stanford D.The challenges of transition: coping with a chronic condition. BC Med Journal 1998, 40(2), 72-75.

Uzark K.,Von Bargen-Mazza P.,

Messiter E. Health education needs of adolescents with congenital heart disease. J Pediatric Health Care 1989:3(3),137-43.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

JUST FOR TEENS

NOTES

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

8-23

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NOTES

8-24

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

9

CARING FOR A CHILD WITH A CHD Giving medications

Your child may need medications (drugs) to manage CHD. Some children may need medications for a short time, such as before or after surgery, while others may need medications for life.

This section provides information about the more common drugs used for CHDs, how they work, and the most common side effects. It also explains how to give drugs to babies and children safely, and provides tips for fitting drugs into your child’s daily activities.

C O N S U LT YO U R P H A R M AC I S T

Talk to your pharmacist before

G I V I N G YO U R C H I L D M E D I CAT I O N S

Survival tips for giving drugs to babies and children Keeping everyone informed Tell the doctor, pharmacist or nurse if your child: has ever had an allergic reaction or bad side effect from any medicine, has any other diseases or conditions

other than the one being treated, takes any other medicines or remedies,

including non-prescription drugs, vitamins, and herbal remedies, because some may change the way your child’s prescribed medicines work.

Know what medicines your child is on and keep an up-to-date list with you wherever you go. If any other caregiver (babysitters, teachers, and activity group leaders) will be giving your child medicine, make sure that the caregiver has this information and exact instructions on how to give it.

Giving medications Give medicine exactly as prescribed, and for the length of time stated by the doctor. For non-prescription medicines, follow the instructions on the label unless told otherwise by your child’s doctor, pharmacist, or nurse.

buying any over-thecounter medicines such as cough and cold remedies for your child.

Try to give the medicine to your child

at the same time every day.To help you remember, choose times that are part of your child’s daily routine.

Refill prescriptions before your supply runs

out, especially if you are going out of town or there is a public holiday when clinics and pharmacies may be closed.

Storage Keep medicines away from heat, sunlight, and moisture.

Keep medicines in the fridge ONLY if

told to do so.

Check expiry dates, and discard expired

medicine or medicine that is no longer needed, by returning it to the pharmacy for proper disposal.

For more information about any medication, speak to your child’s cardiologist, pharmacist or nurse.

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CARING FOR A CHILD WITH A CHD

Safety Keep all medicines out of the reach of children.

Keep all medicines tightly capped in their

original containers with childproof lids.

Do not mix different medicines in

Some tablets can be crushed or cut in half to make them easier to swallow. Check with your pharmacist to see if this is okay for each specific medicine.Tablets (whole, cut, or crushed) can also be hidden in ice cream or jam. Use a small amount of food to make sure your child gets all of the medicine.

one container.

TIME S AV I N G T I P

If your doctor has prescribed a refill, you can call your pharmacy

Do not use your child’s medicines for

any other family member.They must be seen and treated properly by a doctor.

Keep the phone number of the poison

control centre by the telephone in case of an accidental overdose.

ahead of time to reorder. Your

Where do we get medicine for

pharmacist can

our child?

For unpleasant-tasting medicines, have your child suck on ice cubes or a PopsicleTM just before taking the medicine.This helps to numb the mouth and taste buds and helps hide the flavour.

Liquid medicines can be given in a spoon or syringe. Some children will automatically place the tip of an oral syringe into their mouth.

Gently depress the plunger a little at a time to allow your child to swallow.

then have the prescription ready for pick-up when you need it.

Most local pharmacies carry the more common drugs your child may need. Some specialized medicines may only be available at hospital pharmacies. Call ahead before going to your pharmacy to ask if they have the medicine prescribed for your child. It is a good idea to use the same pharmacy for all of your medication needs.This helps your pharmacist get to know your child’s needs and ensures that all your child’s medications can be safely used together.

How do we get our child to take the medicine?

Act as if medicine is part of the normal daily routine. Be positive, firm, and consistent with your child when giving medicine—this will help your child understand its importance.

You will have more success if your child is willing to take the medication. It can be helpful to give your child a choice such as what kind of juice to have afterwards. For young children, you may need to have a firm approach, and hold a toddler in your arms while you give the medicine.

9-2

Some children prefer to take medicine from a spoon. If so, measure it with the syringe and then empty the liquid onto a spoon before giving it.

Small rewards can be helpful in encouraging children to take medicines, particularly when it is a new medicine.

What should we do if our child vomits?

Repeat the dose only if your child vomits immediately after the medicine is given.

Wait ten minutes before repeating the dose to allow your child’s stomach to settle.

If your child vomits more than 60 minutes after the dose has been given, do not repeat it. Continue with your usual schedule. If you are unsure what to do, call your clinic nurse for instructions.

Call your doctor or clinic nurse if your child vomits with successive doses or for a few days in a row.

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CARING FOR A CHILD WITH A CHD

What should we do if we miss a dose?

Give the forgotten dose as soon as you remember. If it is more than half way to the next dose before you remember, skip the missed dose and carry on as usual afterwards.

Never give a double dose.

There are several tools to help you do this: oral syringes, measuring spoons (available at the

pharmacy), don’t use your kitchen spoons, measuring cups (available at the pharmacy), graduated stoppers.

CAUTION! KITCHEN TEASPOONS

How to use an oral syringe

A N D TA B L E S P O O N S V A R Y G R E A T LY I N

How can we remember

1.

everything?

It can be helpful to have a calendar to remind you when the medicines are due, and when they are given (see Medication List, page 9-5).

Other ways of remembering are to use ‘weekly pill boxes’, or to pre-set alarm watches to remind you when medicines should be taken.These are also useful for older children who are learning to be responsible for their own pills.

2.

Place the tip of the syringe into the liquid.

4.

Holding the syringe firmly in one hand, use the other hand to pull the syringe plunger upwards.

5.

Overfill the syringe by a small amount above the amount prescribed.

6.

Press down on the plunger until it is at the marking on the barrel for the amount prescribed.

7.

Remove the syringe from the liquid.

8.

Make sure your child is sitting upright, and place the syringe between the cheek and gum.

9.

Press down slowly on the plunger.

Give small amounts so that your child has time to swallow.

oral syringe

To make sure that your child gets the right dose, it is important to measure your child’s medicine accurately.The nurse or pharmacist can show you exactly how much medicine to give your child.

Completely press down the plunger on the syringe.

3.

Giving medicine with an

Medicines are often given in liquid form because babies and children can swallow liquids more easily. Children’s doses are so small that they cannot fit into tablets or capsules.

Pour a small amount of liquid medicine into a small clean cup.

THE AMOUNT THEY MEASURE

D O N OT U S E T H E M TO MEASURE MEDICINES

10. When

all the medicine has been given, rinse both parts of the syringe, and dry them with a clean towel.

11. You

may give your child a small drink of water or juice afterwards to rinse the mouth and wash the medicine down.

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9-3

9-4 Purpose

* Source: Recovery Road, Heart and Stroke Foundation.

Drug

In case of emergency, contact:

Address:

Name:

Dosage (note mgs and mls)

When to take

Special Instructions

Telephone Number:

MEDICATION LIST

Side Effects

Other

CARING FOR A CHILD WITH A CHD

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

CARING FOR A CHILD WITH A CHD

Tips for travelling For any trip: make sure you take enough medicine to last the whole time you will be away from home (not all pharmacies can make exactly the same medicine your child takes), if you are just going out for a day trip, pre-

pare liquid medicine by drawing it up in a syringe and sealing the end with a stopper, remember to keep the medicine away from

children (diaper bags can be interesting for toddlers to explore, so they are not the best place for medicines), ask your pharmacy for larger childproof containers for bottles and syringes.

For longer trips: take along the name and phone number of the doctor’s office for re-ordering, take a list of all medicines, if you will be crossing several time

zones, stagger the doses. For example, if a medicine is given every 12 hours, change doses by an hour or two each dose to get to the usual times in the new time zone.

M E D I CAT I O N S C O M M O N LY G I V E N TO CHILDREN WITH A CHD Many heart defects can be helped by medications.This section describes the medications commonly used for children with CHDs. You need to know why your child is on a particular medication so that you can understand the importance of taking the medications according to the doctor’s instructions.

Most medications have both beneficial and unwanted side effects. Some side effects are simply bothersome, while others may concern you.You should know what to watch for with each medication so that you can notify the doctor if a problem comes up.

Please note that all of the possible uses, actions, cautions, side effects or interactions of this medication are not covered in this section. If you want more information about any medications, ask your child’s doctor, pharmacist, or nurse.

Why are there different names for most drugs?

You may notice that many drugs have two (or more) different names—the chemical or generic name and the brand name (what a company calls the drug).

T R AV E L T I P S M A K E S U R E T O TA K E E N O U G H M E D I C I N E TO LAST THE WHOLE TIME YO U A R E AWAY

F O R A D AY T R I P P R E PA R E L I Q U I D M E D I C I N E B Y D R AW I N G IT UP IN A SYRINGE AND SEALING THE END

K E E P M E D I C I N E AWAY FROM CHILDREN

TA K E T H E N A M E A N D PHONE NUMBER OF T H E D O C TO R ’ S O F F I C E

TA K E A L I S T O F A L L MEDICINES

Each drug has only one generic name but may have several brand names. For example, propranolol, a generic name, is also called Inderal® by one drug company and Apo-Propranolol® by another.

For each drug listed in this section, the generic name is used first and at least one of the brand names is listed beside it. It is sometimes helpful to know both names, but be certain that both names refer to the same drug.

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9-5

CARING FOR A CHILD WITH A CHD

The drugs listed on the following pages include: Digoxin Diuretics Anticoagulants Antiarrhythmics Beta blockers

Diuretics (water pills) What do diuretics do? A diuretic, or water pill, helps your child’s body get rid of any extra fluid as well as any minerals and salts (electrolytes) that retain water.This prevents fluid from building up in the body and decreases blood pressure.

Calcium channel blockers REMEMBER GIVE MEDICINE E X A C T LY A S PRESCRIBED

Angiotensin converting enzyme

inhibitors (ACE) inhibitors Antibiotics Iron supplements

GIVE THE MEDICINE

Support drugs

AT T H E S A M E T I M E E V E RY D AY

REFILL PRESCRIPTIONS B E F O R E Y O U R S U P P LY RUNS OUT

Digoxin (Lanoxin®) What does digoxin do? Digoxin (digitalis) is a medication that is used to strengthen the heartbeat. It also works to make sure the heart beats in a regular rate or rhythm.

What should we watch for if our child is on digoxin? There is only a small difference between the therapeutic (helpful) and toxic (harmful) blood levels of digoxin.Therefore, if your child loses appetite, is nauseated, or has diarrhea, call your doctor. Other symptoms that you should report to the doctor include slow heart rate, dizziness or fainting, and double vision or blurred vision.

How should our child take digoxin? Most times, digoxin is taken in a liquid or pill form, which is available in most pharmacies. Children that start digoxin in the hospital are sometimes given it intravenously (through veins).

When should our child take the water pills? Because water pills increase the amount of urine the body produces, it is best to avoid giving your child a water pill around naptime or bedtime. If the water pill is once a day, it should be taken in the morning after breakfast. For young children, if it is more than once a day, the last dose should be given in the early evening to avoid bedwetting.

Furosemide (Lasix®) What should we watch for if our child is on furosemide? You will notice that furosemide makes your child urinate more often.This is normal. If you notice the amount of urine is decreased, or your child’s skin or mouth is dry, check with your doctor.These are signs that your child’s body may have got rid of too much water.

To avoid dehydration, children who are

taking diuretics must be watched very carefully if they develop fever, have diarrhea, or are vomiting. Check with the doctor if your child has a dry mouth or is urinating less.

Other diuretics Hydrochlorothiazide (Hydrodiuril®) Spironolactone (Aldactone®)

Note: Furosemide liquid is available from most pharmacies but hydrochlorothiazide and spironolactone liquids are only made by certain pharmacies.

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CARING FOR A CHILD WITH A CHD

Anticoagulants What do anticoagulants do?

Anticoagulants, often called “blood thinners”, prevent the blood cells from sticking together and forming dangerous clots.

ASA, acetylsalicylic acid (Aspirin®) Why does our child have to take ASA? ASA is often used to relieve pain and reduce fever and swelling. In children with heart conditions, it is often used in small doses as a blood thinner.

What should we watch for if our

child is on ASA? ASA can irritate the lining of the stomach. If you notice red, pink, or black in your child’s urine or stool, call the doctor.

There is no evidence to show Reye’s

Syndrome is linked to the low-dose Aspirin® used to discourage clotting. If you have concerns about this, please speak to your child’s cardiologist.

Warfarin (Coumadin®) Why does our child have to take warfarin? Warfarin is called a “blood thinner” because it increases the time it takes for the blood to clot. It works in a different way than Aspirin® or heparin (see Heparin, below). It is often used after surgery to prevent the formation of blood clots in artificial heart valves and blood vessels.

What should we watch for if our child

is on warfarin? Warfarin is a safe medication if it is taken according to instructions and monitored correctly.You should let your doctor know if you see any of the following signs: large bruises, cuts that don’t stop bleeding, red or dark-brown urine, red or black stools, frequent or prolonged nose bleeds, coughing up blood, or unexplained, severe, or prolonged stomach pains.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

Your health care team will usually spend time with you explaining some of the important things you need to know when your child is taking warfarin.Your child will need blood tests called “INRs” on a regular basis.You will also need to be aware of important interactions between warfarin and foods and drugs.

S TO R AG E K E E P M E D I C I N E S AWAY F R O M H E A T, S U N L I G H T, AND MOISTURE

Heparin When is heparin given? Heparin is

often the first anticoagulant that is used. It is commonly used for several days when a child first starts taking warfarin.This is to prevent clotting during the time when warfarin may not be at a high enough level in the blood to prevent clotting.This level is called the “therapeutic level”.

KEEP MEDICINES IN T H E F R I D G E O N LY I F TO L D TO D O S O

DISCARD EXPIRED MEDICINE BY R E T U R N I N G I T TO THE PHARMACY

Heparin is also used around the time of surgery instead of warfarin because its bloodthinning action can be reversed in less time.

This allows a child to receive blood thinners almost up to the time of surgery and start them again right afterwards.

Why can’t people go home on

heparin? Heparin can only be given intravenously (through the vein) or by a subcutaneous (under the skin) injection.

This means that a health care worker must give the medication—either at the hospital, or at home if there is a family member qualified to give the medication.

Regular blood tests are also needed when a child is on heparin. So travelling back and forth to the hospital for medications and blood tests is usually too inconvenient for families.

9-7

CARING FOR A CHILD WITH A CHD

What should we watch for if our

child is on heparin? If you notice red, pink or black in your child’s urine or stool call your doctor.

Is low molecular weight heparin

CAUTION! A S K Y O U R H E A LT H CARE PROFESSIONAL W H AT Y O U S H O U L D D O I F YO U R C H I L D : VO M I T S O R

MISSES A DOSE OF A M I O DA RO N E O R

(LMWH) the same as heparin? LMWH is similar to heparin, but it is like giving a small part of the heparin. It has similar effects and is used in children for similar reasons. Sometimes it is used because it needs fewer blood tests than heparin to see how it is working. It is more convenient than heparin, so some patients use once or twice daily injections at home.The LMWH most commonly used with children is enoxaparin (Lovenox®).

PROPRANOLOL

Antiarrhythmics What do antiarrhythmics do?

Antiarrhythmics (pronounced an-tee-ayRITH-micks) are drugs used to help the heart beat more regularly. For example, if the heart is beating too fast, an antiarrhythmic slows the heart.

Antiarrhythmic drugs all work in different ways. If one doesn’t work, try another one to find the drug that works the best for your child’s heart.

Sotalol (Sotacor®) What should we watch for if our child is on Sotalol? Call the doctor if you notice an unusual or slow heartbeat, swelling of the lower legs or feet, or cold hands or feet.

If your child starts having nightmares, or has difficulty breathing, you should also call your doctor.

Amiodarone (Cordarone®) What should we watch for if our child is an Amiodarone? Call the doctor if you notice unusual heartbeats, shortness of breath, tingling in fingers, toes, or significant changes in behaviour.

Protect your child from the sun with clothing, a hat, and sunscreen (SPF 30 or more) as your child is more likely to be sensitive to the sun and may burn more easily.

Ask your doctor or pharmacist before giving your child other medications, because some drugs interact with amiodarone.

If your child has to take amiodarone for a long time, his or her skin may become bluish-gray.

It usually fades if treatment is discontinued.

Other antiarrhythmics Digoxin - see Digoxin, page 9-6.

Propranolol - see Beta Blockers,

page 9-8.

Flecainide (Tambocor®).

Propafenone (Rhythmol®).

Beta Blockers What do beta blockers do? Beta blockers are useful for treating hypertension (high blood pressure), some types of arrhythmias (irregular and rapid heart beat), and for some kinds of congestive heart failure.

Which beta blockers are most commonly prescribed for children?

Propranolol (Inderal®) Atenolol (Tenormin®) Carvedilol (Coreg®) Metoprolol (Betaloc®)

How do beta blockers work? Beta blockers work by blocking some of the effects of adrenaline and other related substances in the body.This reduces the amount of stress put on the heart.

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CARING FOR A CHILD WITH A CHD

Will our child feel any different on this medication? You may notice that your child’s blood pressure is lowered, the pulse rate may fall and become more regular, or the pumping action of the heart may become stronger, improving circulation.

What should we watch for if our child is on a beta blocker?

Check with your doctor if your child has any of the following problems: breathing difficulty or wheezing,

Why are nifedipine and amlodipine used together? Nifedipine is a fast acting drug and amlodipine takes a lot longer.This means that a child is often started on nifedipine to figure out how much medication is needed. As the child’s blood pressure becomes more stable, the short acting nifedipine is often replaced by amlodipine, which means you only have to give one dose once or twice a day.

CAUTION! I F YO U R C H I L D H A S

Angiotensin Converting Enzyme Inhibitors (ACE inhibitors)

B E E N O N A B E TA BLOCKER FOR A WHILE A N D S T O P S TA K I N G

bluish-coloured fingernails or palms

of hands, irregular or unusually slow heartbeat, severe dizziness or fainting, skin rash.

Calcium Channel Blockers

T H E D R U G S U D D E N LY,

What do ACE inhibitors do? ACE inhibitors are used to treat high blood pressure and to keep the heart working properly in people with congestive heart failure.

Which ACE inhibitors are most commonly prescribed for children?

Captopril (Capoten®)

What do calcium channel blockers do?

Calcium channel blockers are often used to treat high blood pressure.They relax the blood vessels.Verapamil is sometimes used to help control the rate of the heart.

Enalapril (Vasotec®)

Which calcium channel blockers are most commonly prescribed for children?

Nifedipine (Adalat®)

Why was our child given captopril in the hospital and then sent home on enalapril? Of all of the ACE inhibitors, captopril and enalapril have been used the most for children. Captopril is often used first in order to assess how your child will respond to an ACE inhibitor. Because it works quickly, if blood pressure drops too low, it won’t stay low for too long because the body gets rid of the drug quickly. Drugs like enalapril and ramipril are better for long term therapy because your child only has to take them once or twice a day.

Amlodipine (Norvasc®) Verapamil (Isoptin®)

What should we watch for if our child is on a calcium channel blocker? In general, calcium channel blockers are well tolerated. Adverse effects, including flushing and headache, are more common in products that release quickly, like some forms of nifedipine.

You should help your child develop good teeth brushing habits to prevent gums from overgrowing.

Because some children become constipated while taking verapamil, make sure your child is drinking enough fluids.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

I T M AY C A U S E : UNPLEASANT OR HARMFUL EFFECTS OR

WO R S E N YO U R CHILD’S CONDITION

Ramipril (Altace®) Fosinopril (Monopril®) Lisinopril (Zestril®)

Will our child feel any different on the medication? If your child feels dizzy, develops a rash, or has a continual cough you may wish to speak to your doctor.

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CARING FOR A CHILD WITH A CHD

Antibiotics

CAUTION! I F YO U R C H I L D IS PRESCRIBED A N T I B I OT I C S , I T I S

What do antibiotics do? Antibiotics are drugs used to treat bacterial infections anywhere in the body.They are not used to treat infections caused by viruses. For children with a CHD, antibiotics are most commonly used to prevent bacterial endocarditis (see Infection Called Bacterial Endocarditis, page 2-14).

I M P O R TA N T T O G I V E THE DRUG UNTIL THE ENTIRE PRESCRIPTION I S G O N E S O T H AT :

What should we watch for? The most common side effects of antibiotics are diarrhea, nausea, vomiting, and rash.

THE BACTERIA IS C O M P L E T E LY K I L L E D

YO U P R E V E N T

Antibiotics can sometimes cause an allergic reaction. Call your doctor if your child experiences a rash or hives, swelling of the face, lips, or difficulty breathing.

B A C T E R I A ( T H AT C A N ’ T B E D E S T R OY E D B Y A N T I B I OT I C S ) F RO M G ROW I N G .

For liquid medicines, measure with a spoon, syringe, or the dropper provided.

To avoid tooth staining, mix the dose in water or juice and have your child drink it with a straw.

If using a dropper: place the medicine well back on the child’s tongue and follow it with a small drink, if tooth stains occur, they can be removed

by brushing with baking soda or hydrogen peroxide 3%.

For iron to be absorbed, there must be acid in the stomach.The following drugs decrease the amount of acid in the stomach, and should not be given at the same time as iron supplements: Cimetidine (Tagamet®)

Acetaminophen

Ranitidine (Zantac®)

(Tylenol®,Atasol®, Panadol®,Tempra®)

Famotidine (Pepsid®) Omeprazole (Losec®)

What does acetaminophen do?

Acetaminophen relieves pain and reduces fever.

Will our child feel different on this medication? Side effects are rare when taken as directed.

Iron supplements ferrous gluconate or ferrous sulphate What do iron supplements do? Iron supplements are given to children who: need more iron than is in their normal diet, have a problem absorbing iron, lose too much iron because of bleeding.

How should we give this medication?

To ensure your child gets the most benefit from the supplement, give it with water or orange juice on an empty stomach—at least 20 minutes before or 2 hours after meals.

9-10

Over-the-counter antacids or calcium

supplements If your child is on any of these medications, give them at least 30 minutes after the iron.

Avoid giving these foods for 1 hour before or 2 hours after iron supplements because they decrease the amount of iron absorbed: eggs and cheese, tea and coffee, whole grain breads and cereals.

What should we watch for? Iron supplements can cause stomach upsets.To prevent stomach upsets, give the medicine with a small snack.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

CARING FOR A CHILD WITH A CHD

Some children have one or more of the following side effects: nausea or vomiting, constipation or diarrhea, heartburn.

These side effects should go away as your child’s body gets used to the drug. Discuss the side effects with the doctor if they continue.

Call the doctor right away if your child has one or more of the following: stomach pain or cramping that lasts more than a few hours, chest or throat pain with swallowing, blood in the stools, which can appear black

or red, any other symptoms of concern to you.

Note: Stools normally turn black when iron is taken. Contact the doctor if they are jet black, shiny or tar-like in appearance, particularly if your child is feeling sweaty or faint.

Support drugs A variety of medications can be used after surgery to help support the heart muscle.

They are given at a controlled rate by intravenous (IV) pump, and are decreased (weaned) slowly as the heart gets stronger.

Epinephrine/Adrenalin - speeds up the heart rate and makes the heart muscle contract harder.

Dopamine/Intropin®/Dobutamine/ Dobutrex® - helps raise blood pressure by narrowing the blood vessels in the arms and legs.

Isoproterenol/Isuprel® - increases how much blood the heart is able to pump (cardiac output) and makes the heart work harder.

CAUTION! A C E TA M I N O P H E N C A N B E V E RY H A R M F U L I F T O O M U C H I S TA K E N .

WHILE ON THIS M E D I C I N E , D O N OT G I V E YO U R C H I L D A N Y OT H E R P R O D U C T S C O N TA I N I N G A C E TA M I N O P H E N .

READ LABELS C A R E F U L LY.

MEASURE WITH S P E C I A L LY M A R K E D S P O O N , C U P, O R A L

Milrinone/Primacor® - increases how much blood the heart is able to pump without making it work too hard.

SYRINGE, OR DROPPER P R OV I D E D.

Nitric oxide/Inomax® - a short acting, inhaled medication that lowers the blood pressure in the lungs. Often used to treat pulmonary hypertension (high blood pressure in the lungs).

Prostaglandin/ProstinVR® - an intravenous drug given to babies to keep the ductus arteriosus open until a hole can be created between the two upper chambers of the heart.

REFERENCES FOR MEDICATIONS If you would like more information about

the medications that your child is taking, contact your pharmacist or refer to one of the many excellent reference books for parents, including:

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

Advice for the patient, drug information in lay language. 21st Ed. USP DI 2001. www.nlm.nih.gov/medlineplus

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CARING FOR A CHILD WITH A CHD

Immunizations I M M U N I Z AT I O N

Immunizations are an important part of caring for your child and maintaining optimum health.

Chicken pox vaccine,

For regular immunizations, and if your child has a spleen that is not working properly, ask your health care professional if the following vaccines are okay:

Hepatitis B vaccine,

SCHEDULE A S K YO U R D O C TO R ABOUT MODIFYING YO U R C H I L D ’ S I M M U N I Z AT I O N

Annual flu vaccine,

RSV vaccine, Meningococcal vaccine, Prevnar (pneumococcus vaccine).

SCHEDULE: BEFORE AND AFTER

(See Immunization Record, page 13-3)

S U R G E RY O R A N Y MAJOR PROCEDURES

I F YO U R C H I L D HAS RECEIVED BLOOD PRODUCTS

Nutrition and feeding

“”We had to weigh him before he ate and after and try to estimate how much he had eaten. and then he would throw it up, and we had to decide how much nutrition he was getting. It was awful.”

PA R E N T

C

hildren with a CHD may have problems getting the nutrients they need to grow and develop properly.

This depends on the type of heart condition.

Your child may need a special diet or a different way of feeding or eating, called “feeding strategies”.

A meal should be a pleasant and positive time for the whole family. It is a chance for you and your child to spend time together, and for your attachment to each other to grow. It is also a chance for your child to practise new skills and learn healthy eating habits.When a CHD interferes with eating, it can upset your child and disrupt your whole family.Therefore, it is important to spot nutrition and feeding problems early and find solutions quickly.

What are the common types of nutrition and feeding concerns?

Four common nutrition and feeding problems are described on the following pages.

Difficulty getting enough nutrients If children cannot get enough nutrients, they will grow slowly. Most healthy babies double their birth weight by the time they are four or five months of age. Babies with a CHD often grow more slowly.This slow growth can continue throughout childhood. Children with CHF often grow normally in height, but may gain weight more slowly than healthy children.

There are many causes of slow growth, including: difficulty getting enough calories and nutrients by breastfeeding, drinking, or eating, not enough energy to feed or eat properly

because too much energy is used to keep the heart pumping and the lungs working.

Try shorter and more frequent feedings or meals to help babies and children gain weight and save energy. A diet or formula high in

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HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

CARING FOR A CHILD WITH A CHD

calories and nutrients can be helpful. Special products can be added to breast milk to increase calories.

Difficulty eating safely Some children have difficulty coordinating the movement of the tongue, jaw, and lips.

This makes it hard for them to suck, chew, or swallow (sometimes called “oral motor skills”). Children with a CHD, congestive heart failure, chronic illness, or long-term tube feeding sometimes have this problem. Such children need help and encouragement to learn how to suck, swallow, and chew on their own.

How are nutrition and feeding problems identified?

“The dietitian was

As a parent, you may be the first to notice that your child has a nutrition or feeding problem.

so instrumental in sorting out Zoe’s complex feeding

You may notice that your child: is having trouble sucking, chewing, or swallowing,

She started at square

is often too tired to feed or eat,

one and slowly upped

does not appear to be gaining

situation last spring.

Zoe’s feeds so that

enough weight. we went home at

Sucking and swallowing problems can cause aspiration (breathing fluids or food into the lungs). If your child is having trouble feeding safely, the doctor may request a feeding assessment and special tests to see how your child swallows.You may need to change what your child eats and how it is eaten.

Doesn’t want to eat Children with heart defects may not want to eat because it tires them out.They may also be afraid of choking. Children who are often sick may connect eating with vomiting. Some children are fearful of foods of different colours, textures, or flavours. Other children don’t like special diets and pressure to gain weight.Team members can give you ideas to encourage your child to eat.

Difficulty with breastfeeding Some babies have trouble with breastfeeding, even if they don’t have a CHD.They may be sleepy, or may have trouble latching onto the nipple. A “lactation consultant” can help with these problems.

The health care team will be checking your child at the clinic or in the hospital. If you are concerned that your child cannot swallow safely (for example, he or she coughs or chokes during feeds), the team may ask for a special X-ray feeding study. Even if there is no obvious problem, the doctor may order a nutritional assessment.

a comfortable level and never really looked back.

PA R E N T

The nutrition and feeding team members include the dietitian, occupational therapist, and lactation consultant.

The dietitian checks to see whether your

child is eating well and growing fast enough.

The dietitian may recommend a different diet.The dietitian also provides nutritional counselling and education.

The occupational therapist (OT) may

do a feeding assessment for a baby or child who is having trouble sucking, chewing, or swallowing. If necessary, the OT will help your child develop better feeding or eating skills.The OT may also suggest different feeding strategies.

The lactation consultant provides

lactation support and counselling for mothers who are breastfeeding their babies or expressing breast milk.Your nurse and lactation consultant will help you with breastfeeding problems.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

9-13

CARING FOR A CHILD WITH A CHD

How are common nutrition and feeding problems managed?

BREASTFEEDING

Human milk is recommended for almost all babies because: I T C O N TA I N S THE BEST NUTRIENTS FOR THE BABY

IT IS EASIER F O R T H E B A B Y TO

The table (Tips for managing common nutrition and feeding problems) on page 9-15 contains general information to help you manage common feeding problems.The cardiology team members will also give you instructions. If you have concerns regarding your baby’s or child’s nutrition or feeding, contact your dietitian, occupational therapist, or lactation consultant.

Breastfeeding

S U C K , S WA L L OW A N D B R E AT H E

THE BABY GETS M O R E OX Y G E N

I T C A N P R OV I D E C O M F O RT TO YO U R

Human milk is recommended for almost all babies because it contains the best nutrients for the baby. It is easier for the baby to suck, swallow, and breathe during breastfeeding and the baby gets more oxygen. Breastfeeding can also provide comfort to your baby during or after a painful procedure, surgery, or separation.

Baby formula Babies who are on standard baby formulas instead of breast milk may also need extra calories to gain weight.They may be placed on an increased calorie baby formula.The number of calories in baby formula is measured in kilocalories (kcal) per ounce (oz) or kilocalories per 100 millilitres (mL). Standard baby formula is 20 kcal/oz (67 kcal/100mL), and increased formulas may have more. For example, 24 kcal/oz (80 kcal/100mL) or 27 kcal/oz (90 kcal/100mL).You may not be able to buy these higher calorie formulas, but you can make them from powder or liquid concentrate.The dietitian will give you a special recipe for high calorie formulas.

Normal feeding and solid foods

BABY DURING OR A F T E R A PA I N F U L PROCEDURE

9-14

Breastfeeding is usually possible. If your baby is not well enough to breastfeed, you can “express” your breast milk until your baby is able to breastfeed again. If needed, special additives and pumping techniques can give your baby extra calories while you continue breastfeeding.Your child’s nurse or lactation consultant will show you how to express your breast milk. Breast pumps are available for use in the hospital. Pumps may also be rented for use at home if needed.

Babies, children, and teens should eat a normal, healthy diet for their age.The dietitian can tell you what is right for your child at different ages.

Start giving babies solid foods when they are between four and six months old.The transition from baby food to adult food should be the same as for healthy children.

Some babies may take more time to learn new feeding skills because of their CHD or because they are always ill. In this case, continue to offer foods that your baby can manage based on their developmental and physical readiness. Delaying the introduction of solid foods may lead to poor acceptance of foods later on.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

CARING FOR A CHILD WITH A CHD

TIPS FOR MANAGING COMMON NUTRITION AND FEEDING PROBLEMS

Problem Difficulty getting enough nutrients

Options Provide a diet or formula high in calories and nutrients.

Add special products to breast milk, formula, or foods.

Provide nutritional drinks.

Consider supplemental tube feeding if your child is unable to meet their nutritional

needs by drinking or eating.

Provide higher fat content breast milk (hindmilk).

Provide small, frequent feeds.

Provide a diet/formula high in calories if the child cannot drink or eat normal quantities.

Limit the length of feedings/meals so the child does not become too tired.

Difficulty with eating safely

Position the baby/child carefully when breastfeeding, bottle feeding, or feeding solids.

Use techniques such as pacing your baby during breastfeeding or bottle feeding.

Try different food textures (for example, thicker liquids) and different methods of feeding.

Try different feeding equipment such as bottles, nipples, and cups.

Doesn’t want to eat

Provide limits and guidelines that encourage good eating habits and positive

feeding behaviours.

Try changing where your child eats and who is in the room during feeds.

Learn your child’s feeding cues and signals (how your child is feeling about eating and

about specific foods).

Become aware of how you interact with your child during feeds.

Cuddle your baby at the breast, skin to skin, even when you do not want him or

her to feed.

Difficulty with breastfeeding

Help your baby latch onto the nipple.

Try different breastfeeding positions.

Ask for an assessment of breastfeeding and milk supply.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

9-15

CARING FOR A CHILD WITH A CHD

Financial support for special formulas and products Special diets or dietary TUBE FEEDINGS

There are two types of common feeding tubes: NASOGASTRIC (NG) WHICH IS PLACED IN T H E S TO M AC H THROUGH THE NOSE

G A S T R O S TO M Y T U B E (G-TUBE) WHICH A SURGEON P L AC E S I N TO T H E S TO M AC H T H R O U G H THE SKIN

modifications Cutting back on some things, such as fluids and salt, can help in managing some heart conditions.The dietitian will help with this.

Some children need less fluid to manage their medical condition.This is called fluid restriction. Fluid restrictions can make it hard for your child to get enough calories and nutrients to grow and develop properly. If so, you may need to change your child’s diet or provide a special diet.Your child may also need to avoid salty foods and limit how much salt is added to the food.

A low fat diet is usually not recommended for babies and children. A few children have conditions such as chylothorax that require a diet low in a certain type of fat. Fat additives and high fat foods are often included in high calorie diets because they are high in calories.

Vitamin and mineral supplementation Most babies who are breastfed do not need routine vitamin supplements; but Vitamin D supplements are recommended. Formula-fed babies who are gaining weight well do not need supplements. Babies who often have trouble drinking enough formula many need a supplement.

Babies who do not have enough iron in their blood need an iron supplement.Ask your doctor whether your baby or child needs an iron supplement.

Children and teens who follow Canada’s Food Guide to Healthy Eating do not need supplements.You can get a copy of the guide from your dietitian or public health nurse.

9-16

Special formulas and food products can be very expensive. Sometimes you can get financial help for buying these products.The social worker or clinic nurse can find out if you are eligible for financial help.

Maintaining cultural beliefs and practices If your family has cultural beliefs that involve food, these practices can be considered in planning what and how your child eats.The dietitian, lactation consultant, or clinic nurse can help you. If your child is in hospital, you may be allowed to bring in food from home.

Check whether you can bring favorite foods that are not on the hospital menu. If your child is on a special diet, check with the dietitian to be sure that the food is okay.

Tube feedings Some children who have trouble getting enough calories or nutrients by eating or drinking, may need a feeding tube.

There are two common types of feeding tubes: nasogastric (NG) tube, which is placed into the stomach through the nose, gastrostomy tube (G-tube), which a

surgeon places into the stomach through the skin. G-tubes are used for long term feeding problems.

The type of tube depends on your child’s age and nutritional needs and how much your child is able to eat and drink.The cardiology team will train you and give you guidelines.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

CARING FOR A CHILD WITH A CHD

Dental care Why is dental care so important?

Children with a CHD need special attention to their teeth for several reasons: They have poorer oral health than other

children, leading to more cavities, gum disease, and chances for infection such as bacterial endocarditis (see “Infection called bacterial endocarditis”, page 2-14).

Unusual conditions such as enamel

hypoplasia (the hard coating on the teeth doesn’t form properly) in the baby teeth are twice as common in children with CHD as in other children.Although the permanent (adult) teeth are usually not affected by these problems, it is important that baby teeth form properly because they guide the permanent teeth into the right position.

Medications such as Digoxin, Lasix®,

Tylenol® and others are usually sweetened with sugar. Children with CHDs often have to take these medications on a regular basis for a long time.The sugars collect on the teeth and add to tooth decay.

Some cardiac medicines such as Lasix® can

decrease the saliva, leading to a build-up of plaque on the child’s teeth. Plaque build-up is one of the main causes of tooth decay.

Dental care often seems less important

than other problems for children with more serious or complex CHDs.

Begin cleaning your baby’s teeth twice a

day as soon as they appear. Use a soft baby toothbrush or small piece of terry cloth.

Have your child’s teeth checked at one

year old, and begin regular check-ups twice a year at ages 2-3. Ask for tips on brushing, flossing, fluoride, and preventing tooth injuries.

Young children require assistance with

tooth brushing to ensure that they have cleaned all tooth surfaces adequately.

TEETH TIPS DON’T SETTLE YO U R B A B Y TO S L E E P W I T H A B OT T L E O F MILK OR JUICE IN HIS OR HER MOUTH

Use a tiny amount of toothpaste containing

fluoride to brush your child’s teeth. Fluoride helps teeth develop. Don’t let your child eat the toothpaste, since too much fluoride can be harmful.

MILK, JUICE, AND FORMULA ALL C O N TA I N S U G A R , WHICH CAN CAUSE T O O T H D E C AY

Don’t let your child snack more than 3-4 times a day. Frequent eating and drinking keeps the teeth covered with acid, and there is not enough saliva to remove the acid.This adds to tooth decay.

Give medicines before brushing your

child’s teeth.

C L E A N YO U R B A B Y ’ S T E E T H T W I C E A D AY

USE A SOFT TO OT H B RU S H O R SMALL PIECE OF

Like many children, your child may need braces to straighten his or her teeth. Most braces are now brackets bonded to the teeth, but some orthodontists choose to use metal bands.When these are first put on, there is some bleeding, so antibiotic protection will be needed.Antibiotics will not be needed for adjustments to the braces.

T E R RY C L OT H

Like most children, your child should wear

How can I help my child’s teeth develop normally?

Start early. Don’t settle your baby to sleep

a mouth guard for contact sports.

For more tips on caring for your child’s teeth, talk to your dentist.

with a bottle of milk or juice in his or her mouth. Milk, juice, and formula all contain sugar, which can cause tooth decay when allowed to pool in the mouth.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

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CARING FOR A CHILD WITH A CHD

REFERENCES FOR DENTAL CARE Hallett, K.B., Radford, D. J. and Seow,W.K. C O M P L I M E N TA R Y THERAPIES

Oral health of children with congenital cardiac diseases: A controlled study.

Pediatric Dentistry 14(4) July/August,1992.

Complimentary therapies are chosen for many reasons:

BC Children’s Hospital, Department

Saunders, F. E., Roberts. G. J. Suwanprasit,

A. Dental Disease, caries related microflora and salivary IgA of children with severe congenital cardiac disease: an epidemiological and oral microbial survey.

Pediatric Dentistry 18(3) 1996.

of Dentistry. ”Your Child’s Dental Care”, American

TO I M P R OV E

Heart Association booklet, 2001.

A CHILD'S G E N E R A L H E A LT H

Complimentary and alternative therapies TO P R OV I D E A CHILD WITH MORE H O L I S T I C O R N AT U R A L

What are complimentary and

What are the most common types

alternative therapies?

of complimentary therapies?

Complimentary therapies (often called integrative therapies) and alternative therapies include many different types of treatments, such as acupuncture, herbal and vitamin therapy, therapeutic touch, homeopathic treatments, and mind-body therapies such as bio-feedback.

There are many different types of complimentary therapies.

FORMS OF THERAPY

TO F E E L T H AT A L L P O S S I B L E APPROACHES ARE BEING TRIED

TO M I N I M I Z E SIDE EFFECTS OF CONVENTIONAL THERAPIES

TO P R O M OT E A SENSE OF WELL-BEING

Alternative therapies are those which are used instead of conventional treatments.

Complimentary therapies are those which can be provided in addition to the treatment prescribed by your medical doctor.These treatments are outside of conventional medicine - they are not taught in most medical schools in the western world, and are not practiced by most medical doctors.

Many of these therapies are “holistic therapies” - they focus on the whole person, including the mind, body and spirit, instead of the disease.

Over the past ten years the use of these therapies has almost doubled. Almost half of Canadians now use complimentary and alternative therapies to maintain their health or manage a medical condition. More and more families are asking questions about using complimentary therapies while in hospital.

This section provides information about complimentary therapies so that you can make an informed choice about whether these therapies are right for your child.

9-18

Here are a few examples: bodywork massage therapy, reflexology, and hydrotherapy energy therapies healing touch, therapeutic touch, reiki, acupuncture, acupressure, biokinesiology, chigong, sound therapy, aromatherapy, bach flower remedies, homeopathy, and magnetic therapy dietary or metabolic therapies nutritional supplements, herbal therapy, and chelation psychological and behavioural therapies imagery, visualization, psychotherapy, hypnosis, biofeedback, meditation, dance therapy, art therapy, music therapy, counselling, prayer, spiritual/religious and cultural rituals

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

CARING FOR A CHILD WITH A CHD

Are these therapies available to our child in hospital?

Except for some of the psychological and behavioural therapies, most of the therapies previously listed are not formally available in hospital. Many behavioural therapies are practised by nurses, child life workers, hospital chaplains, psychologists, and First Nation’s advocates.There is a small but growing use of therapeutic touch and art therapy provided by nurses and other health care professionals in some hospitals, and an art therapist may be available.

How do we learn more about complimentary therapies?

When considering the use of complimentary therapies in your child’s care, it is helpful to know why you want the therapy. Ask yourselves whether you are looking for a cure, improved quality of life for your child (for example, comfort or reduction of side effects), more control of your child’s health care, or something else. Different therapies are used for different reasons.

Once you know the purpose of the therapy, do some research. Because most healthcare professionals within the hospital are not experts in these therapies, you will need to do your own research.

Find out how the therapy works, what it involves, when it is best used, and how much it costs.Try to determine whether the therapy has been used on children with heart conditions, and find out if there is any research that explains the advantages and disadvantages.

When choosing a therapist, find out about his or her level of training and experience.

When you have all of the information, weigh the benefits and risks (potential harm or side effects) of the therapy.This is an important

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

step, and should be done when evaluating any kind of therapy.You may wish to talk to others in making your decision. Finally, keep in mind that you will be responsible for any choices you make.Tips and resources to start you on your search for information are included at the end of this section.

TIPS AND RESOURCES I F YO U H AV E I N T E R N E T AC C E S S , T H E R E I S A L OT O F I N F O R M AT I O N

Do we need to tell anyone about

AVA I L A B L E

our decision to use this therapy?

It is always wise to discuss all aspects of your child’s health with the people involved in your child’s medical care. Some therapies may interact with the conventional treatments your child is receiving. Some herbs affect certain drugs; for example, goldenseal may increase the coagulation effect of coumadin, changing how the blood clots.

You and the doctor can discuss the benefits and risks of all therapies on your child’s health.

The more you know about the specific therapy, the better. If you find that your choice of therapy is not supported by your health care provider, you may want to speak with another health care professional for a second opinion.

VISIT THE RESOURCE L I B R A RY I N YO U R H O S P I TA L O R L I B R A RY

V I S I T B O O K S TO R E S

T A L K T O Y O U R H E A LT H CARE PROFESSIONALS

TA L K T O O T H E R PA R E N T S W H O H AV E TRIED THE THERAPY

CONSIDER WHETHER C O S T O F T R E AT M E N T

Tips and resources for choosing

IS JUSTIFIED

the therapy that is right for you Learn all you can about the treatment: If you have Internet access, there is alot of information available, but be careful to choose sites that do not seem to be pushing one particular treatment. Keep in mind that the information may not be accurate because anyone can put information on the Internet.

Visit the resource library in your hospital,

your local community library, or special libraries such as those at a college or university. Look for books and journals on alternative and complementary medicine.

Visit bookstores.There are many books on

health, wellness and alternative therapies in popular and alternative bookstores.

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CARING FOR A CHILD WITH A CHD

Talk to your health care professionals (the

G AT H E R A N D C O M PA R E

Gather information from as many places as possible, and compare it all before making your decision. Remember that when you choose an alternative medicine, it is your responsibility to be well informed.

staff nurse, clinical nurse specialist, outreach nurse, clinic nurse, child life specialist, cardiologist, surgeon, pharmacist, physiotherapist, pain nurse clinician, anaesthetist, social worker, chaplain and First Nations advocate) and find out what they know about the therapy you are considering.

They may already know whether the therapy can safely be taken or used with the treatment your doctor has prescribed, or they may be willing to find out for you.

They may also have information about whether the therapy is effective for your child’s particular health condition.

If possible, talk to other parents/people

who have tried the therapy.Who recommended it to them? What were the effects?

Talk to the therapists and find out what

experience and training they have in providing therapy for people with the same or similar conditions. Ask if you can speak with one or more of their clients.

Visit health food stores. Most of them have

pamphlets about the products they sell.

Visit herbal therapy shops.The staff

members are usually well informed on supplements and herbal therapies. Some have licensed herbal practitioners on site.

Follow up with your own reading.

Contact the Health Protection Branch of

Health Canada for general information on control of alternative therapies.

Contact the organizations that govern

specific therapies, such as your provincial chiropractic association.

Choose a qualified (certified) and experi-

enced health care or alternative medicine practitioner to dispense the treatment.

Some people who dispense these therapies have no special training to do so. For example, not everyone who works in a health food store has specialized training.

Question any information given to you

about the therapy. A therapy claiming to be “natural” may still be unsafe.Therapies that promise “miracle cures” should make you suspicious.

Consider whether the cost of the treat-

ment is justified. For example, some herb and vitamin supplements are very expensive and contain nothing more than vitamins and minerals that your child can get by eating a healthy diet.

Gather information from as many places as possible, and compare it all before making your decision. Remember that when you choose a complimentary therapy, it is your responsibility to be well informed.

REFERENCES FOR ALTERNATIVE THERAPIES Canadian Medical Association: A Patient’s

Guide to Choosing Unconventional Therapies, Canadian Medical Association Journal, 1998:158(9).

Canadian Pediatric Society. Nutrition for

Healthy Term Babies. Canadian Journal of Dietetic Practice and Research, 1998:59(2); 93-96.

Dupont Pharmaceuticals:

Herbal Information Chart.

9-20

Greecher, C. P. Congenital Heart Disease.

Nutritional Care of High-Risk Newborns. Edited

by S. Groh-Wargo, M.Thompson, J. Cox. Precept Press Inc., Chicago 1994, p266-275.

Marion, B. L, O’Brien, P. and LoRe, H. Oxygen

Saturations During Breast and Bottle Feedings in Babies with Congenital Heart Disease.

Journal of Pediatric Nursing, 10(6):1995; 360-364.

Angus Reid Group, Canadians and

Alternative Medicines and Practices, September/October, 1997.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

CARING FOR A CHILD WITH A CHD

Cultural and spiritual beliefs How can we integrate our cultural and spiritual beliefs

HELP IS CLOSE

into our child’s care?

The health care team wants to support you and your spiritual and cultural beliefs while your child is in the hospital.Tell them what you need. Most hospitals also have a chaplain, social worker, or a First Nation’s advocate available to help.

If you have spiritual beliefs about the use of blood products, please discuss your concerns with your health care team.

What help can the chaplain provide?

Whatever your beliefs may be, chaplains are often available to help you: explain your cultural and spiritual beliefs to the staff,

The chaplain can

What help can the First Nation’s Patient Advocate provide?

help you: EXPLAIN Y O U R C U LT U R A L A N D

When looking at health and wellness, some First Nation’s people examine their own emotional and spiritual well-being.The First Nation’s Patient Advocate can connect patients and families with elders who help by doing talk therapy and energy work.

The Advocate can also organize traditional ceremonies for patients and their families (of any heritage) to help ease some of the distress many have in hospital.

SPIRITUAL BELIEFS T O T H E S TA F F

FIND COMMUNITY R E S O U R C E S TO S U P P O RT YO U R N E E D S

S U P P O RT YO U I N E T H I C A L DILEMMAS

See the Directory, page 13-4 to record a First Nation’s Advocate as a contact.

EXPLORE YO U R S P I R I T UA L I T Y

find community resources to support

your needs, support you in ethical dilemmas or

decision making, explore your spirituality and

spiritual resources.

See the Directory, page 13-4 to record a chaplain as a contact.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

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CARING FOR A CHILD WITH A CHD

NOTES

9-22

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

10

I F YO U R C H I L D N E E D S S U R G E RY

The cardiologist may recommend surgery for your child to repair the CHD and make your child’s cardiovascular system as normal as it can be.

For some children it may be possible to repair the heart completely with a single surgery.This is called a “definitive repair”. For other children who are more ill or who have more complex problems, surgery may be needed to relieve a problem or help the child gain weight before definitive surgery.

This is called “palliative” surgery. Some children only receive palliative

“I have to say, it is

surgery. Some children with complex CHDs require more than one

extremely difficult to be

surgery to get the best result.

taking her back into the

This section describes what to expect before and after surgery.

Before surgery P R E PA R I N G F O R S U R G E RY

Before surgery, the team will talk to you about it and talk to your child if he or she is old enough to be included.They will talk about the best type of surgery and the best time for it to take place.

After reviewing your child’s health status, diagnostic test results, and other information, the health care team (cardiologists, surgeons, radiologists, nurses and other specialists) recommends an operation.The information you and your child give them about your child’s current health status is a very important part of deciding when a surgery should happen.

we have known since she was born that this is only one of many

Will we get a chance to meet

operations that she will

the surgical team?

need.We will hope and

Who makes the decision about surgery?

hospital, even though

Your cardiologist will contact you with the final decision about surgery.The surgeon’s office will then contact you to set the date and to make an appointment for your family to meet with the surgeon and other team members. If possible, you should arrange this meeting several weeks before the surgery so that you can get answers to your questions.

pray that after her surgery she will be that much stronger and more than ready to conquer new things.”

PA R E N T

At the meeting, the surgeon will discuss: the reason for the surgery, the risks and benefits of having the

surgery performed, what the surgical procedure involves, how long the hospital stay will be.

You will be encouraged to ask any questions and discuss concerns. In addition, you will probably be asked to sign the consent for surgery.

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10-1

I F YO U R C H I L D N E E D S S U R G E RY

What is an “informed consent”?

TIPS FOR SUCCESS R E P E AT I N F O R M AT I O N B AC K TO M A K E S U R E Y O U U N D E R S TA N D I T C O R R E C T LY. F O R EXAMPLE:

IF THE SURGEON HAS JUST EXPLAINED T H E T Y P E O F S U R G E RY TO YO U , YO U C O U L D S A Y, “ S O W H A T YO U A R E P L A N N I N G TO D O I S . . .”

An important part of the meeting is signing a document called an“informed consent”. An informed consent is a document that says you have been told about the type of surgery and the risks involved, that you understand this information, and that you agree to the surgery.

Be sure to read the consent completely before signing.

In some provinces, children of 11 years or older may be legally able to sign the consent.

Each child needs to be assessed individually for his or her competency. Some patients or their parents may feel uncomfortable with this (depending on the child). In this case, the parents or legal guardians may ask to provide consent for the procedure.

time leading up to the meeting, you will likely think of several questions and concerns you would like to discuss with the team.We recommend that you write them down so you feel as prepared as possible for the meeting. It is a good idea to write down the answers during the meeting so you can review them later.

Here are examples of questions you may want to ask: What will this surgery do for our child if it is successful?

What is the best we can hope for? What

is the worst that might happen?

Is there anything that could be done

instead of the operation that would get the same results?

What will happen if we do nothing?

How much time do we have to make

Who should come to the meeting?

Families often report feeling overwhelmed by the amount of information they receive during the appointment. It may be helpful to have a family member or friend go with you to the meeting to help you remember and make sense of the information you are given.

We encourage you to bring your child to the meeting if he or she is old enough to understand the information.This will give your child a chance to ask questions and be involved.

Infants and young children do not need to attend this meeting.

How should we prepare for the meeting?

Some families do not feel comfortable asking about the procedure. However, it is not possible to give an informed consent without a good understanding of what will happen to your child.

You will feel more prepared if you do some research to learn about the procedure. In the

10-2

a decision?

Why is it better to do the operation now

rather than later?

What are the most common complications

and how often do they occur?

What is the most serious complication

and how often does it occur?

How often do complications occur

at other centres, and how does your centre compare?

What are the possible risks and

complications of the anaesthetic, if any?

Who will perform the operation? What

experience has the surgeon had with this type of procedure? How successful have others been?

In some emergencies, you may not have time to ask anything.You and the health care team will have to act immediately.

Questions adapted from: Family Issues, BC’s Children’s Hospital Newsletter for Families.

Spring/Summer Issue, 2001, p. 3.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

I F YO U R C H I L D N E E D S S U R G E RY

What are the risks of surgery?

The risks involved in your child’s surgery depend on whether it is “open-heart” or “closed-heart” surgery. Open-heart surgery means that a heart-lung machine (often called “cardiopulmonary bypass”) is needed.

Closed-heart surgery does not use a heartlung machine.

The risk of kidney damage, liver damage, or stroke following open-heart surgery are now extremely low (generally less than one in every hundred cases).

The risk of complications following closedheart surgery is much lower than for openheart surgery.

OPEN-CLOSED O P E N - H E A R T S U R G E RY M E A N S T H AT A H E A R T- L U N G M A C H I N E (OFTEN CALLED

Although heart surgery for babies and children has improved a great deal over the past twenty years, it still carries some risk.

There are two types of risk—morbidity (complications during or following surgery) and mortality (loss of life).The level of risk depends on the procedure your child needs.

The surgeon will talk to you about the specific risks for each procedure.

In general, complications after open-heart surgery are rare - they occur in about 1-3% of cases (1 to 3 of every 100).

The most common complications include: bleeding after surgery, heart rhythm problems, a permanent pacemaker may be needed

in the future, infection, which may be minor or severe.

Following open-heart surgery, children may get an inflammation (irritation) of the sac that surrounds the heart, called the pericardium.

There may also be a build-up of fluid around the heart and lungs.This is an inflammation, not an infection. It is known as Post Pericardiotomy Syndrome (PPS), and it happens in about 2-30% of patients (2 to 30 of every 100).The symptoms of PPS are fever, general malaise (feeling unwell), and irritability (feeling bad-tempered and easily upset). PPS is commonly treated with oral aspirin or steroids.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

“ C A R D I O P U L M O N A RY

Will my child need blood

B Y PA S S ” ) I S N E E D E D

products, and are they safe?

Your child may need blood or blood products for surgery, especially if it is open-heart surgery. For example, when the heart-lung machine is used in babies and small children, blood products are used to fill the machine’s tubing. If other fluids are used instead, the child’s blood can become diluted and the cells of the body do not get enough oxygen.

C L O S E D - H E A RT S U R G E RY D O E S N OT U S E A H E A R T- L U N G MACHINE

At some centres, parents may be able to arrange blood donations specifically for their child - referred to as “directed blood donation”. Older children may even be able to donate their own blood for heart surgery.

This is called “autologous” blood donation.

Ask your cardiac surgeon about options for your child. If blood products are needed, the cardiac surgeon will discuss the risks of the various products.

If you have spiritual beliefs about the use of blood products, please discuss your concerns with your health care team.

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I F YO U R C H I L D N E E D S S U R G E RY

P R E - S U R G I CA L A S S E S S M E N T A N D P R E PA R AT I O N S

What can we do to prepare our

At the day clinic, they will: check to see if your child is well enough for surgery, ask if you have any questions or concerns,

child for surgery? give you a chance to tour the areas of the

NEEDED TESTS C H E S T X - R AY A N D ELECTROCARDIOGRAM (ECG)

OX Y G E N S AT U R AT I O N

ECHOCARDIOGRAM

R E C E N T D E N TA L

Once you know that your child needs heart surgery, you need to make sure that your child’s teeth are healthy. Dental cavities and abscesses increase the risk of an infection such as bacterial endocarditis (see page 2-14) after surgery. Surgery may have to be delayed until dental work is done.

Surgery is usually done only if your child is in the best of health.

You need to tell your cardiologist and cardiac surgeon: if your child has been in contact with any communicable diseases (chicken pox, whooping cough, etc.) within the two to three weeks before surgery,

E X A M TO E N S U R E H E A LT H Y T E E T H

if your child has had any type of illness

in the week before surgery.

Communicable diseases are a risk for both your child and other children who are in hospital. Surgery may have to be delayed if your child has a cold or other illness. If your child needs urgent surgery, a delay may not be possible, and the cardiac team will discuss their recommendations with you.

How long will our child be in hospital before surgery?

hospital where your child will be staying, talk about how to help your child prepare

emotionally for the surgery, give you instructions about fasting (how

many hours your child should not eat or drink prior to surgery), bowel preparation, and when to arrive at the hospital, give you information about plans for

sedation before and the anaesthetic during the operation, do a general physical assessment and

medical history of your child (come prepared to answer questions about your child’s health problems, allergies, and the medications he or she is currently taking), talk about recovery after the operation,

particularly about getting out of bed and moving around and breathing exercises (to keep the lungs clear).

You can also expect the following tests to be done during the clinic day if they have not been done recently: chest X-ray and electrocardiogram (ECG) (see pages 15-2 and 15-5), blood analysis or bloodwork

(see page 15-1), oxygen saturation (see page 15-14),

If your child’s health is stable and the surgery is not urgent, your child probably won’t have to be admitted to hospital until the day of the surgery.

What will happen at day clinic?

Most hospitals now have day clinics,or Pre-Admission Clinics, where routine tests can be done.

These tests ensure that your child is fit for surgery.

10-4

echocardiogram (see page 15-4).

The day clinic visit usually takes 4 to 6 hours.

It is a good idea to bring snacks or other supplies necessary to help you get through the day. After the appointment, you can return home or to the place you are staying while awaiting your child’s surgery, and return to the hospital the morning of surgery.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

I F YO U R C H I L D N E E D S S U R G E RY

What should we do during the surgery?

T H E DAY O F S U R G E RY

How will we know when and where to go?

The hospital admissions department or clinic nurse will tell you (well before surgery) where you should bring your child on the morning of surgery.

Surgery sometimes has to be rescheduled to protect your child’s health (for example, if the expert team members needed for your child’s care are not available) or to save another child’s health (for example, if the child requires emergency surgery). Surgery is rescheduled according to priority of need, so be prepared to be patient.

What will happen before our child goes to the operating room?

When you arrive at the hospital, you and your child will go to a waiting area.

During surgery, which may take from 3 to 7 hours, you may choose to go home if it is close by, or wait in a parents’ lounge or waiting area. If you leave the waiting area, make sure the team knows how to contact you for updates on your child’s condition and to let you know when the surgery is over.

To ensure that you can be reached, you should: tell a staff member where you are going and your phone number at that location,

SIBLINGS

We recommend that you don’t bring young siblings to the hospital the morning of surgery as this can be stressful for the parents, siblings, and the child going for surgery.

check whether there are pagers available for parents to use, check whether cellular phones can be

used inside the hospital, get the name and phone or pager

number of a staff member you can contact if you have questions during your child’s operation.

During this time: you can stay with your child until it is time to go to the surgical room, EMLA cream may be applied to your child’s

hand to numb the skin so that an IV can be inserted in the surgical room, your child may be given some

sedating medicine, some centres will let you go into the

surgical room with your child.

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10-5

I F YO U R C H I L D N E E D S S U R G E RY

I N T H E O P E R AT I N G RO O M BEFORE S U R G E RY

What will happen before the operation starts?

A N E N D OT R AC H E A L TUBE WILL BE PLACED D OW N T H E N O S E TO H E L P B R E AT H I N G

A N A RT E R I A L L I N E WILL BE PLACED IN O N E O F T H E A RT E R I E S OF THE WRIST

AN IV WILL BE PLACED IN A LARGE VEIN IN THE NECK

A U R I N A RY C AT H E T E R W I L L B E I N S E RT E D I N TO T H E B L A D D E R

It takes about an hour to prepare your child for surgery. An IV line for the anaesthetic will be inserted shortly after your child goes into the operating room. Once the anaesthetic is working, your child will not be aware of any other events until he or she is recovering in the Intensive Care Unit.

After the anaesthetic is started, several standard procedures are generally done before the surgery: A tube called an endotracheal tube will be placed down the nose (or sometimes the mouth) into the windpipe to help with breathing during and after surgery.The tube is connected to a ventilator, or breathing machine.The ventilator does the work of breathing for your child and keeps the right amount of oxygen in the bloodstream.

A NASOGASTRIC TUBE W I L L B E I N S E RT E D D OW N O N E O F T H E N O S T R I L S I N TO T H E S TO M AC H

A small plastic tube (catheter) called an

arterial line will be placed in one of the arteries of the wrist.The arterial line will be used to measure blood pressure during and after surgery, and will also be used to draw blood samples after surgery.

These tubes and equipment will also be needed as your child recovers in the Intensive Care Unit.The staff will tell you which equipment and supports your child needs after surgery.

What will happen during the surgery?

Once all of the equipment is in place, the surgeon will start the operation. If your child is having an open-heart procedure, the incision will be over the breastbone (sternum) in the front of the chest. If your child is having a closed-heart procedure, the surgeon will tell you about the surgical approach and where the incision will be made.

Open-heart surgery To do open-heart surgery, the surgeon opens the heart and usually has to stop the heart to do the precision repair. During this time, the heart-lung machine does the work of the heart and lungs by sending oxygen-rich blood through the body.The machine takes the blue, oxygen-poor blood from the entrance of the heart and sends the blood through the heartlung machine where oxygen is added. It then returns the blood to the main artery of the heart (the aorta), which takes the oxygen-rich blood to the body.The heart-lung machine can also cool the blood to protect your child’s organs during surgery.

Another IV will be placed in a large vein in

the neck (or occasionally the groin) to give medications or blood products.

A drainage tube called a urinary

catheter will be inserted into the bladder to measure urine output.

Another tube called a nasogastric tube or

NG tube will be inserted down one of the nostrils into the stomach to make sure that the stomach is empty during surgery and to allow feeding after surgery.

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HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

I F YO U R C H I L D N E E D S S U R G E RY

The heart is stopped with a special medication (called cardioplegia) during the time the surgeon needs to do the repair. Once the repair is done, the child will be gradually weaned off the heart-lung machine so that the child’s own heart is doing the work of pumping the blood after surgery.The child’s breathing usually needs the help of the ventilator for several hours to several days, depending on the type of surgery and how quickly the child recovers.

In small infants and young children, the skin will be closed after surgery but the breastbone may be left open to allow for the swelling of the heart after surgery.The breastbone will be sewn together a few days later once the swelling has gone down and your child’s condition is stable.When you first see your child after surgery, a gauze dressing will cover the incision.

For some children, the surgeon may also place a small catheter in the abdomen, under the belly button, to help the kidneys get rid of extra fluid.This is called peritoneal dialysis.

This tube is removed when the kidneys are working well, usually a few days after surgery.

For some types of open-heart surgery, it is common for the electrical system of the heart to become bruised or swollen.This can result in unusual heart rhythms—the heart may beat too fast or too slow, or the top and bottom chambers may beat in an uncoordinated way.

If this is a concern, the surgeon will place pacemaker wires onto the outside part of the heart muscle at the end of the surgery.

These tiny wires are then pulled through the skin and sit next to the incision, ready to be connected to a temporary external pacemaker if there are any concerns about the heart rhythm.

heart have subsided, the child’s own regular heart rhythm starts again and the temporary pacemaker wires are easily removed.Wires can be removed as easily as stitches. In rare cases, the child’s own regular heart rhythm does not resume after several days and a permanent pacemaker may need to be inserted before the child goes home. Before surgery, your cardiologist and surgeon will provide information specific to your child about the possibility of requiring a permanent pacemaker.

EXTERNAL PAC E M A K E R S

The external pacemaker is an additional support that is often needed temporarily to regulate the child’s heart

Chest tubes for open and closed-heart surgery Following heart surgery, most children need chest tubes (also called chest drains) that drain the air, fluid and blood away from the heart as it heals.These chest tubes are placed in the operating room before the child enters the Intensive Care Unit.

rhythm during the first few days after cardiac surgery.

As many as three chest tubes may be needed after surgery, depending on the type of surgery. Chest tubes are connected to a drainage box and a suction system to encourage air or fluids to drain.This suction makes a soft bubbling noise.The staff watches the tubes closely after surgery to make sure that they are still connected and unclogged, and that fluids are replaced if needed.

The external pacemaker is an additional support that is often needed temporarily to regulate the child’s heart rhythm during the first few days after cardiac surgery. In most cases, once the swelling and bruising of the HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

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I F YO U R C H I L D N E E D S S U R G E RY

Some parents are frightened when the child doesn’t move.

“Everything has a beep, and I panicked every time anything made a noise. But a lot of those alarms are just reminders to nurses and not a warning.

A F T E R T H E S U R G E RY After heart surgery, most children go to the Intensive Care Unit (ICU) to recover.

This section describes what to expect when you first see your child in ICU, offers some suggestions on how you can be involved in your child’s care, and explains the importance of taking care of yourself during this overwhelming time.

I calmed down once I figured that out.”

PA R E N T

“When they said she was paralysed I freaked. I forgot that

The Intensive Care Unit Your child’s stay in ICU may be a few days or longer, depending on the type of surgery (open-heart or closed-heart) and any other medical conditions your child has. In the ICU, your child will be closely watched and cared for during the critical time that follows heart surgery.

they meant by the drugs . . . I cried with relief when they reminded me that’s what it was.”

PA R E N T

The first glimpse of your child may be a very difficult and emotional moment for you.

While you will likely feel relieved that the surgery is over, the sights and sounds of ICU may overwhelm you.This section will give you some ideas of what to expect in the busy ICU.To help you prepare, you may want to ask whether it is possible to tour the ICU and meet some of the staff before surgery.

What will our child look like?

Just after surgery, your child will be surrounded by machines and people.

Your child will be lying quite still and be very sleepy because of: pain medication to make your child comfortable,

You may notice some swelling of your child’s face, eyes and hands.This swelling is common after heart surgery, and will go away gradually.

Here are some other things you may see: a large dressing on your child’s chest to cover the incision and protect it from infection, IVs for fluids and drugs (see the

medications starting on page 9-5, for information on the IV medications your child may be receiving), a cardiac monitor, which shows heart rate

and rhythm, blood pressure, breathing rate, oxygen saturation, and other information, a ventilator (a machine that breathes

for your child through a tube into your child’s throat), one to three chest tubes to drain air, fluid,

or blood from around your child’s heart, temporary pacemaker wires to help

regulate the heart rate, a cooling blanket to control fever and

decrease the work of the heart (most children get a fever after heart surgery).

Many of the machines attached to your child have alarms which attract the attention of the ICU staff.The machines make a lot of beeping noises that may make you feel nervous until you get used to them.

medication that paralyses your child’s

muscles for a short time so the heart does not have to work as hard.

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I F YO U R C H I L D N E E D S S U R G E RY

What can we expect in the first few hours and days after surgery?

At first, there will be a lot of activity around your child’s condition as nurses and doctors stabilize your child. Once things settle down, there will be room for you to sit beside your child.

You can tell things are improving when your child slowly starts to wake up and move around.Your child will gradually need less medication to support the heart, and will no longer need the ventilator for breathing. As your child improves, the lines and wires will be taken out, and he or she will be able to sit up and take sips of water or suck on a Popsicle®.

Your child may have ups and downs on the road to recovery. Several parents have described feeling like they are on a roller coaster.The ICU staff will continually monitor your child, respond to changes, and be alert to possible complications.

The ICU nurses and doctors will keep you informed about how your child is doing and answer your questions whenever possible.

There may be times when they need to attend to your child’s or another child’s needs and may not be able to answer your questions for a few minutes.

your child’s bedside.You may be asked to leave during rounds to ensure that information about other patients remains confidential. If you need to speak with your child’s doctors, ask the nurse about arranging a time that works for both of you.

How can we care for our child in an ICU? You may find it difficult having a child in ICU. You may feel that you are no longer part of the team, or that you are no longer able to parent your child. Remember that parents play an important role in helping their children recover.

One way to help is to give the team information—you know more than anyone does about your child.

“We kept a diary of events and the staff’s names, and found that to be very helpful.”

PA R E N T

“It was important to us that we be able to participate in the care of our child as much as possible.At first this was very little; but eventually we could change her

For example, tell the staff: whether your child is right or lefthanded so that IVs can be placed in the opposite hand,

diaper, give her a bath

how your child is likely to react in certain

nurses really appreciate

situations, and anything that has helped make such situations easier,

parents who take an

what kind of distraction is most helpful

during uncomfortable procedures,

and hold her during procedures. I think the

active role in the care of their child.”

PA R E N T

whether your child likes bandaids

Who will be caring for our child?

The intensive care unit team cares for your child and consults with the cardiologist and surgeon as needed (see Who’s Who on your Health Care Team in the Glossary).

removed quickly or slowly.

You can also advocate for your child—ask for anything you think your child needs, or make suggestions that you think may be helpful.

You will see new faces every day.When you arrive, ask who will be caring for your child that day and what procedures or treatments are planned.

During rounds (when the team visits all of the children in the ICU), be prepared for a large crowd.There may be as many as 15 people at

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I F YO U R C H I L D N E E D S S U R G E RY

Visiting the ICU

“She loves to keep watch on everyone in the room, play with her little photo album, and has discovered that she loves the Barney videos.”

PA R E N T

Ask your nurse about ways that you can participate in your child’s care.

Ways to help your child include: bathing and hair washing or combing, diaper changes, turns (changing your child’s position), back rubs, kisses, hugs, and hand holding,

Parents are not seen as “visitors” but are important members of the team helping your child get well.You can usually be with your child as often as you would like. However, crises occur often in an ICU, although not necessarily to your child.There may be times when you are asked to step outside.

You can also invite other family members or special people in your child’s life (for example, godparents or close family friends) to visit.

reading stories, praising your child during and

after procedures, speaking or singing softly to your child

even when he or she appears to be asleep —your child may be able to hear you.

However, think carefully about whom you invite, because: very sick children need rest and calm, and the more people there are, the more noisy and stressful the environment may be, when a lot of people gather around a

VISITING HOURS

You may also want to: play tapes of soft music or lullabies, record yourselves, siblings, or grandparents

OUR VISITING HOURS ARE:

reading a story to be played for your child when you are not there, bring a favourite toy or teddy, bring favourite videos for your child to

OUR VISITING

watch, or tape up pictures of your child and family around the bedside,

bedside, it may become difficult for staff to respond to a child who suddenly needs urgent care, young children may find the ICU a scary

place to visit.

If your child has young sisters or brothers who want to visit, please arrange for their visit with your child’s nurse, who can help you prepare them.

RESTRICTIONS ARE:

tape up “art” drawn by your child’s siblings

Hand-washing

or friends, tell stories or make up a fantasy adventure

with your child.

Remember that you can offer love and emotional support in a way that no one else can.

Sick children can easily catch other illnesses.

To help reduce the risk to your child: wash your hands well each time you come into the ICU, and after changing diapers, remind all visitors to wash their hands, if you are not feeling well, talk to your

child’s nurse about ways to protect your child from catching your illness, tell the nurse if a visitor has been in

contact with anyone who has chicken pox or other infectious diseases.

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I F YO U R C H I L D N E E D S S U R G E RY

Bedside space ICUs are usually crowded spaces, filled with machines and monitors.There may be little room for balloons and toys.Ask your nurse what you may bring in for your child.There is usually room for a few favourite teddies and blankets.

Taking care of yourself The stress of the ICU environment may wear you out. It is hard to predict how long your child will be in the ICU, so it is important to look after yourself.

You can take care of yourself and help your child by: taking breaks and taking turns with other family members or your partner, eating nourishing food—don’t try to

survive on coffee! sleeping when possible, taking walks occasionally; you need a

break and the exercise will feel good, taking a break with a friend who is a

good listener, making sure you drink plenty of water

and eat well, especially if you are a breastfeeding mother.

Some parents feel guilty about not being at the hospital all the time, although they know how important it is to get rest and take care of themselves.Try for a balance of visiting and resting that works for you.This is very important if your child is in the ICU for more than a week.

It is difficult to predict how busy the ICU will be and nights can be as busy and noisy as days. If possible, arrange a quiet place to sleep outside the unit—plan to go home from time to time if you live nearby, or ask about accommodations near the hospital. If you wish to stay at the bedside, please ask the nurse about possible sleeping space.

Be realistic about your expectations for yourself. No one can “do it all”. See Coping with Stressful Times, page 6-1, for more suggestions.

“These few days while I have just sat at the bedside have been the most exhausting days

What do we tell friends and extended family?

of my life. I don’t know how I will

People often want to help when a child is ill, and may think that visiting is the best way to show their concern. However, visitors can be tiring for you and your child. Many people are pleased to be asked to help in practical ways, knowing that it will give you less to worry about.

Make a list of things that need to be done at home, and ask friends and family members what they would be willing to do. In particular, think of things that will help keep your other children’s lives as normal as possible, such as making their meals and taking them to and from school and activities.

keep going.”

PA R E N T

“My friends say they want to help, but I don’t know what to tell them.”

PA R E N T

Other ideas for help include: putting meals in your freezer for the days when you are too tired or stressed to cook, taking your toddler out for a day, doing laundry, picking a contact person who is willing

to give updates to friends, setting up a family website where people

can share information and provide support.

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I F YO U R C H I L D N E E D S S U R G E RY

ICU Realities

“I can’t tell you how shattered I was when the child in the next bed died.We always knew this was possible, but it brought home

The ICU is set up to care for children who have serious health problems. It can be extremely upsetting to watch another child struggle, or to see other parents coping with the death of their child. If you are having difficulty, speak with your child’s nurse.The hospital may have a social worker, psychologist, or volunteer available to help you through the difficult times.

to us that this was possible for our child too.”

PA R E N T

CAUTION! CELLULAR PHONES MUST BE TURNED OFF WHILE IN THE H O S P I TA L , A S T H E Y M AY I N T E R F E R E W I T H E Q U I P M E N T.

Privacy Your privacy and the privacy of other families are protected by the ICU team. Because of this, staff will not discuss the other children with you. However, you are welcome to offer friendship and support to other parents. Some parents will be grateful for the chance to talk, while others may be uncomfortable with it.

ECMO or ECLS life support

takes the blue blood out of the right side of the heart and pumps it through the artificial lung (oxygenator) and returns it, warmed and filtered, to the body. During this time, your child is on the ventilator (breathing machine) to prevent the lungs from collapsing.Your child is kept very still to prevent the tubes from being pulled out.

While on the machine, your child’s blood is thinned to prevent clotting.When ECMO is stopped, clotting generally returns to normal within a few hours.

Babies and children can be on ECMO for several days to a week. Frequent blood tests are needed to determine when they are ready to be weaned off the machine.

What will we need while our child is in ICU? What you will need depends how far away from the hospital you live. Some things to consider include: a place to stay,

Some children need a special kind of life support called ECMO or ECLS while they are in ICU. ECMO (extracorporeal membrane oxygenation) or ECLS (extracorporeal life support) are the same thing. ECMO is used for critically ill children whose heart and lungs are not able to work well.This support uses a heart-lung machine similar to the one in the operating room to do the work of the child’s heart or lungs and allow them time to heal.

At first, the ECMO machine does most of the work of the heart or lungs, but its work is gradually decreased as the body recovers.

a pager—the ICU may have a “parent

pager” that you can use to take a break or to get errands done and still keep contact with the ICU team, microwave for meals, locker for personal belongings, breast pumps.

Record information specific to your centre in Section 4:Visiting the Hospital.

If your child needs ECMO, two large tubes (cannulae) will be inserted in a vein and artery, usually in the neck or the groin.The machine

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I F YO U R C H I L D N E E D S S U R G E RY

Leaving the ICU “On Sunday she

chest tube bleeding is under control.

When your child moves from the ICU to the step-down unit or onto the ward, you might expect that it would be easier to deal with than the ICU. Many parents think that the emotional strain will be eased because their child is recovering. However, you may find the ward more stressful than the ICU because the one-to-one care your child has received in the ICU is no longer available, leaving you feeling more responsible for your child’s care.The thought of taking your child home may be frightening and you may feel unprepared.

Your child may be transferred to a step-down or transitional care unit for a few days, and then to the ward to recover fully.

You may already be exhausted by the ICU experience, yet still have new people to meet and a new system to learn.

Sometimes children need to go back to the ICU if there are complications. If this happens, it will be a disappointing time for everyone.

Readmissions to the ICU are usually only for a few days and are required to ensure the appropriate level of care is provided to your child.

These feelings are normal, and there are steps you can take to ease the transition: visit the step-down area before your child gets there, and find the locations of facilities such as parent bathrooms and microwaves,

When will our child be ready to move out of ICU? Your child will likely be ready to move out of ICU when: he or she is breathing without the ventilator, blood pressure and heart rhythms

are stable,

was so spunky I could imagine her walking, skipping, running, and even heading off to school. Today she is far less zippy. I must keep in mind that it is truly one day at a time.

What a crazy roller coaster ride.”

PA R E N T

“I was thrilled this afternoon when she opened her gorgeous little eyes and reached out her hand to stroke

begin preparing to go home on Day 1

my face.What renewed

—start learning what you need to know as soon as possible,

faith I felt. Out little

learn who the nurses are and how to call

them if you need them,

buddy has gone through far too much for a little 9-month-old, but she bounces back so amazingly well.”

PA R E N T

Celebrate leaving the ICU— it is a huge step forward on your child’s road to recovery.

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I F YO U R C H I L D N E E D S S U R G E RY

After Intensive Care Going home “The doctor told us today that Katie would probably have to go home on oxygen for a while.We have no problem with that: as long as Katie is stable and appears ready for going home.”

PA R E N T

Discharge from hospital is a happy time, but it can also be a very stressful time for families and children.You can ease the stress by preparing early.

As soon as your child is recovering well, start to ask questions about going home, such as: when can we leave? what medications should we know about? what signs of a wound infection or other

problems should we look for at home? what care does our child need at home? when can our child go back to

“She came home on Saturday, much

daycare/school? when can we resume our child’s

immunization schedule?

to everyone’s delight.

She got her first full night’s sleep in almost 6 weeks. She was all smiles today and obviously is quite happy to be home.”

Getting information early and in small pieces will help you remember it and increase your confidence when you leave. Ask for information to be written down to take home. Have a place to put the information once you get home, such as the fridge door or by the telephone. Pass this information on to family members, baby-sitters, and other caregivers so everyone knows where it is.

PA R E N T

What do we need to know to care for our child at home?

Complications can happen up to 6 weeks after surgery.The nurse will give you specific information about caring for your child.

You will need to know about the following: wound care and signs of infection,

medications, pain control, diet and constipation (from codeine and

other pain medications), Post Pericardotomy Syndrome (PPS), which

includes irritability, fever, chest pain, loss of appetite, and shortness of breath.

What can we expect when our child returns home?

When you bring your child home from hospital after surgery, you may feel anxious about taking on full responsibility for your recovering child.You will have medications to give and other tasks such as checking your child’s wound.

Most parents are exhausted at the end of a hospital stay. It is helpful if friends can cook meals or stay with the children so you can run errands or sleep during the day if you are likely to be up at night.Your sleep routines may be disrupted, and you may find it difficult to sleep although you are exhausted.Try to sleep when your child does, even if it is during the day.

Siblings may be more demanding than usual because they have not had your attention.

They may feel jealous of the child who took so much of your time while in hospital.

Not only are most parents tired at this time, they often react to the stress of the hospital.

Although you may feel relief that the surgery is over, you may relive the anxious moments you had.You may feel overwhelmed even as you and your child recover from the experience.These are normal reactions, and it can be helpful to find someone to talk to about them.

bathing, activity levels,

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Some parents feel pressured to return to work as soon as they get home. Remember

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

I F YO U R C H I L D N E E D S S U R G E RY

that it is not just your child who has gone through an exhausting time—you need time to recover, too.

As your child gradually recovers, he or she will likely become more active, eat more, and drink more.Your child may also have nightmares and go through a cranky stage. It is easy for a child’s behaviour to get out of control as a result of the unusual circumstances and extra attention of a hospital stay. It is important for the whole family, both now and in the future, to set clear limits on your child’s behaviour.

Children respond well when they know exactly what is expected of them. Be sure to have the clinic nurse’s phone number handy for questions that come up at home.

As a result of being in the hospital, some children may lose recent skills such as toilet training, crawling, or walking.This may be frustrating for both you and the child, but the skills will return as your child continues to recover at home and normal routines are established.

What kind of follow-up should we expect?

Follow-up care from the hospital will be arranged before your child’s discharge.These appointments are a time to ask any questions that arise after you leave the hospital.

The community health nurse may be involved in your child’s discharge planning, and is often a good source of information and contacts.

Additional resources such as parent support groups and infant development programs may be available in your area (see Additional Supports and Resources, page 12-1).

If your child was receiving home care or other community-based services before the hospital stay, you may need to let the agency know that the child is home and discuss the need for ongoing services.

“The nurse and pediatrician called me at home to go over her ‘at home’ feeding program and adjusted her feeding to suit both her needs and mine - for that I was very happy!”

PA R E N T

“I stopped by the unit today after our

Follow-up schedule

appointment. I really think it is important

Appointment with the cardiac surgeon, Dr. Date Time Place

for the staff to see their little patients during the good times too.”

PA R E N T

Appointment with the cardiologist, Dr. Date Time Place

Appointment with the pediatrician/family doctor, Dr. Date Time Place

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I F YO U R C H I L D N E E D S S U R G E RY

REFERENCES Curley, M.A.Q., Smith, J.B. Moloney-

Harmon, P.A. (1996). Critical Care Nursing of Infants and Children.

WB Saunders: Philadelphia.

Kronick-Mest G. Postpericardiotomy

syndrome: etiology, manifestations, and interventions. Heart & Lung 1989 Mar; 18(2): 192-8.

Whaley L.F.,Wong D.L.,Wilson D.

Whaley and Wong’s Nursing Care of Infants and Children, 6th ed., Mosby, St. Louis, 1999.

Prince SE, Cunha BA:

Postpericardiotomy syndrome. Heart & Lung 1997 Mar-Apr; 26(2): 165-8

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I F YO U R C H I L D N E E D S S U R G E RY

NOTES

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I F YO U R C H I L D N E E D S S U R G E RY

NOTES

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11

P R E PA R I N G F O R A N E M E R G E N C Y Knowing what to do

Prepare for an emergency. Know what to do if an emergency arises. It is like planning for a house fire or earthquake—you hope one will never happen, but being prepared will improve the outcome.

THE PLAN K N OW H OW A N D W H E R E TO G E T H E L P

Your plan should include: learning the signs to watch for, such as symptoms or drug reactions, including family members and other caregivers in the plan, knowing what information to provide to paramedics or emergency department staff knowing how and where to get emergency help.

Monitoring your child’s health: signs and symptoms

I

t is important for each of us to listen to our bodies.As children with CHD grow and develop they learn to recognize small changes in their health. Parents of infants or younger children often are the first ones to notice changes in their child’s health.

Symptoms are the body’s way of telling us something is wrong with it. Just as a cough and a stuffy nose are the body’s way of telling us we have a cold, there are symptoms we can learn that tell us how our hearts are working.

Each child growing up with heart disease has a unique heart, and therefore a unique set of indicators that there is a problem. It is important that you ask your child’s cardiologist at each follow up appointment what symptoms you should be watching for or paying attention to as your child grows and develops.

Different symptoms will have different degrees of significance depending on your child’s unique heart condition and medical history.

Discuss with your cardiologist the level of urgency for your child and the plan of action should your child develop any of the following symptoms: gradual increased effort of breathing

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

L E A R N T H E S I G N S TO W AT C H F O R , S U C H A S S Y M P TO M S O R D RU G REACTIONS

decrease in exercise performance

or tolerance increasing pallor (pale skin) or cyanosis

at rest

I N C L U D E F A M I LY M E M B E R S A N D OT H E R CAREGIVERS IN THE PLAN

increasing tiredness or lethargy decrease in appetite or food intake significant weight gain or weight loss

over a short period of time severe nausea or vomiting

K N O W W H AT I N F O R M AT I O N T O P R OV I D E TO PA R A M E D I C S O R E M E R G E N C Y S TA F F

change in bowel patterns (diarrhea,

constipation) dizziness or faintness with exertion or

at rest

ORDER A M E D I C - A L E RT ® BRACELET FOR YO U R C H I L D

anxiety or restlessness chest pains, particularly with exercise or

activity (this is often normal and related to muscles and bones changing and growing, but can also indicate that the heart is needing to work harder). palpitations or pounding in the chest

that may indicate an abnormal heart beat (some children use different words such as “butterflies in my chest” or “my heart is racing” to describe the sensation).

Ask your cardiologist if there are any other symptoms that you should watch for and who you should call if you notice them.

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P R E PA R I N G F O R A N E M E R G E N C Y

How can family members help?

What are the signs that our child needs urgent medical help?

Some symptoms require more urgent medical attention.

IN CASE OF

If your child experiences any of the following symptoms, don’t wait.

Get help. difficulty breathing (panting, gasping, or wheezing),

EMERGENCY S TO P A N Y ACTIVITIES AND REST

seizures, palpitations associated with dizziness, chest

pain or loss of consciousness (fainting), GIVE ANY EMERGENCY

dizziness or faintness,

Family members, teachers, babysitters, and other caregivers should recognize if your child is having serious problems.

Encourage everyone to take an infant/child cardiopulmonary resuscitation (CPR) course.

Contact the Heart and Stroke Foundation to find courses in your community.

Your family can also help you plan to look after your other responsibilities if you are going to be away from your home for a long time. Some of the things they can help with are children, livestock, pets, and calling your workplace.

M E D I C AT I O N S

change in level of alertness including S TAY C A L M A N D A C T

confusion, extreme lethargy or unresponsiveness,

AT O N C E

CALL 911

Ask your cardiologist if there are any other symptoms that would indicate your child needs urgent medical help.

What should we do if our child requires urgent medical help?

If your child appears to require urgent medical help, follow these instructions: Have your child stop any activities and rest.

Give any emergency medications as

D R I V E C A R E F U L LY IF NO AMBULANCE IS

Who should be contacted in an emergency?

AVA I L A B L E

Y

ou should always know whom to contact in case of emergency. Ask the clinic for a list of emergency numbers.

Emergency Medical Services:

Pediatric Cardiologist:

Family Doctor:

11-2

instructed by your doctor.

Recognize the problem, stay calm, and

act at once. Do not delay getting to the hospital by packing a suitcase or notifying family or friends.

Call 911 or your local emergency

number if your child needs urgent medical attention. Unless you are minutes away from the hospital and can get there safely, you are better off calling an ambulance.

Although it may seem to take more time than to go to the local hospital yourself, it is important that your child be monitored and given any necessary treatment during transport.

If an ambulance is not available, drive care-

fully to your nearest hospital emergency.

Any doctor or emergency department can contact the cardiologist on call 24 hours a day, 7 days a week.

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P R E PA R I N G F O R A N E M E R G E N C Y

WHAT INFORMATION SHOULD WE HAVE AVAILABLE? It is helpful to have a summary of your child’s medical history on hand. Store copies in your wallet, car, diaper bag, and your child’s backpack, and make sure caregivers know where they are.

Your medical summary should include the following information about your child:

Medical Summary Name Weight

Date of Birth Diagnosis

Surgeries or treatments (when and where they were performed)

Pacemaker Allergies or drug reactions

All medications (including the exact name, the amount they take, how often it is taken) What the child is normally like

(saturation levels, breathing, activity, awareness, etc.)

Language, religious, and/or cultural considerations that may affect your child’s care

Contact Information

Family Doctor Pediatrician Cardiologist

Date summary last updated

* Reference: Dozois E., Kneeshaw R. Heart Beats: A handbook for families and children with special hearts. Edited by Word on the Street Consulting.

Heart Beats - the Children’s Society of Calgary, 1999 (draft).

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P R E PA R I N G F O R A N E M E R G E N C Y

NOTES

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12

ADDITIONAL SUPPORTS AND RESOURCES Helpful hints

This section has information about your health care centre, the Internet, and some helpful programs.Ask your team about additional services or resources which may be available in your area including: Family support groups/resources, Newsletters, Adult congenital heart defect support groups, Infant Development Programs, Child Development Centres, Supported Childcare Programs, Community Mental Health Programs and other applicable community resources, Internet resources.

INTERNET CONFLICT A R E T H E Y T RY I N G TO S E L L YO U SOMETHING?

INTERNET RESOURCES The Internet is useful for getting information quickly but you can also find some incorrect or misleading information. Anyone can put information on the Internet, so it is important to make sure that the information you are getting is accurate and relevant.

If you find information that interests you, test the reliability of the information by asking questions, such as the ones listed here.

What is the source of the information?

Is the website hosted or managed by a well-known health organization (for example, the Heart and Stroke Foundation), a university medical school (for example, Johns Hopkins), a government agency (for example, Health Canada), or a professional organization (for example, the Society of Pediatric Cardiology Nurses)?

Does the author include his or her medical

educational and professional background?

Is there an editorial board (a panel of

experts) which periodically reviews the material for accuracy? Are their credentials listed? Is there contact information available so that a visitor can ask questions or make comments?

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

Is the information referenced so that you

can find it somewhere else? Do they list the source of the information? Is the source of information reputable?

IS THERE A DV E RT I S I N G O N THE SITE?

Are the claims supported by other sources?

Is there a conflict of interest (sponsors or advertising)?

Are they trying to sell you something?

DOES THE SITE D E L I V E R I N F O R M AT I O N IN A RESPONSIBLE WAY ?

Is there advertising on the site? This is

not always negative, as long as the difference between the advertising and the site’s content is clear, and as long as the author tells you about any conflict of interest.

DOES THE SITE H AV E A WA R N I N G OR DISCLAIMER OF ANY KIND?

Does the site deliver information in a

responsible way?

Does the site have a warning or disclaimer

of any kind? For example, if the author has no medical credentials, is that clearly stated? Do they warn you that the information should not be used to diagnose or treat a healthy problem? Do they advise you to talk to your doctor? Most reputable health sites will guide visitors in their use of the information.

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A D D I T I O N A L S U P P O RT S A N D R E S O U R C E S

INTERNET SUPPORT

Is the site current?

Does the website say when it was last updated? Medical information in this field is constantly changing. If the website is not updated on a regular basis, the information may be outdated. Ideally, there should be updates at least monthly, according to the US Food and Drug Administration.

USE THE INTERNET AS A V I RT UA L S U P P O RT N E T WO R K

CHD NEWSGROUPS A N D C H AT R O O M S A R E BECOMING MORE COMMON

Use common sense when you evaluate a site.

Some of the best sites will not meet all of the qualifications listed above, and some of the worst will. If you receive conflicting information, write down the name and address of the site, print out the information, and discuss it with your cardiologist. He or she will be able to tell you whether the information applies to your child’s unique situation.

S O M E PA R E N T S H AV E F O U N D “ C H AT T I N G ” W I T H O T H E R PA R E N T S T O B E

The following websites may be helpful to you and your family: CHD Online Handbook http://execpc.com/~markc/congenit.html Congenital Heart Information Network www.tchin.org Heart and Stroke Foundation of Canada www.heartandstroke.ca Variety Children’s Heart Centre,Winnipeg http://www.vchc.ca Royal Children’s Hospital, Melbourne, Australia http://www.rch.org.au

Use the internet as a source of support

V E RY H E L P F U L

The Internet can be used as a virtual support network. CHD newsgroups and chat rooms are becoming more and more common.

Some parents have found “chatting“ with other parents to be very helpful. However, again, you need to be careful: sharing your story online can be a source of relief, but it can also open you up to criticism and bad advice. If you get opinions that are upsetting, then it is time to withdraw and talk to the people who form your day-to-day community—the ones who can provide support in a more meaningful way.

If you are making difficult ethical decisions, the Internet is not the place to seek counsel.

People giving advice online cannot support you day-to-day or help you live with your decisions.Talk to someone who can.

There are many websites about congenital heart defects, and some appear and disappear with lightning speed. Rather than list sites that may not exist at the time of printing, we leave you with space to write down current sites.

Please ask your health care team for site addresses familiar to them.

12-2

Websites

Cincinnati Children’s Hospital www.cincinnatichildrens.org Children’s Heart Network, British Columbia www.childrensheartnetwork.org Record other sites that were helpful:

* Source: Dozois E., Kneeshaw R. Heart Beats: A handbook for families and children with special hearts. Edited by Word on the Street Consulting.

Heart Beats - the Children’s Society of Calgary, 1999 (draft).

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A D D I T I O N A L S U P P O RT S A N D R E S O U R C E S

OTHER SOURCES OF INFORMATION Computer-aided instruction is available at:

Library resources are available at:

My own resources

REFERENCES Ask your health professional for a list of books available in your area.

Cahill, M. Everything you need to know

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

about medical therapies. Springhouse, Springhouse PA, 1996.

Kramer, G. F. and Maurer, S. The

Parent’s Guide to Children’s Congenital heart Defects: what they are, how to treat them and how to cope with them.

Three River’s Press, NY, 2001.

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A D D I T I O N A L S U P P O RT S A N D R E S O U R C E S

NOTES

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13

RECORD KEEPING Keeping track

We suggest you use this binder as a place to keep records of your child’s health condition and medical treatments or surgical procedures. Some contents are listed below.

Some parents choose to keep detailed records of their child’s journey as a journal, photo album or scrapbook, Height and growth charts, Immunization records, Plastic pouch to organize professional cards, Directory (a place to write down frequently contacted supports in the community and in the hospital).

JOURNAL IDEAS J O U R N A L , P H OTO ALBUM, SCRAPBOOK

My own resources H E I G H T A N D G ROW T H C H A RT S

I M M U N I Z AT I O N RECORDS

PLASTIC POUCH TO O R G A N I Z E PROFESSIONAL CARDS

D I R E C TO RY F O R S U P P O RT S I N T H E COMMUNITY

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13-1

RECORD KEEPING

GROWTH CHART

Fill in the height and weight for your child as she/he grows.

Age in years

Height in inches

in centimetres

Weight in lbs.

in kgs.

18 17 16 15 14 13 12 11 10 9 8 7 6 5 4 3 2 1 at birth 13-2

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RECORD KEEPING

IMMUNIZATION RECORD

Vaccine Diphtheria/pertussis/tetanus/polio DPTP

Age

Date

2 months 4 months 6 months 18 months school entry

Measles/mumps/rubella (MMR)

1 year 18 months

H influenza type B (Hib) (usually given with DPTP)

2 months 4 months 6 months 18 months

Hepatitis B

2 months 4 months 6 months grade 6 (series/2 doses)

Tetanus, diphtheria, pertussis (TdaP) Influenza vaccine (annual)

Pneumococcal Vaccine (Prevnar)

grade 9 Annual (ask your doctor or nurse if your child is at risk) 2 months 4 months 6 months 18 months

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RECORD KEEPING IMMUNIZATION RECORD - CONTINUED

Vaccine

Age

Meningococcal C Conjugate (Neis Vac-C)

Date

2 months 12 months

Varicella (chickenpox) Paliviizumab for respiratory syncytial virus (RSV) immunoprophylaxis if recommended by a pediatric cardiologist

12 months 2 years or younger

Other Vaccines

Before having immunizations Talk to your doctor if your son/daughter: has a serious reaction to any antibiotics has received immune globulin or blood transfusions

in the past three months has a serious illness has had a serious reaction when he/she was immunized before

Phone number of health department in your area:

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RECORD KEEPING

DIRECTORY Cardiology Clinical Nurse Specialist (CNS)

Clinical nurse specialist available to work with your family is:

Pediatric Cardiologist

The pediatric cardiologist involved in your child’s care is:

at: at:

Social Worker Pediatric Nurse Practitioner (PNP)

The social worker available to work with your family is:

Pediatric nurse practitioner available to work with your family is: at: at: Other team members Cardiology Nurse Clinician/Clinic Nurse Cardiology nurse clinician available to work with your family is:

at:

(chaplain, child life specialist, psychologist, lactation consultant, First Nation’s advocate) Other team members available to work with your family are:

at:

Parent Support Network

Parent support network contact person is:

at:

at: at: Pediatric Cardiac Surgeon

Pediatric cardiac surgeon(s) in our program:

at: at:

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RECORD KEEPING

NOTES

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14

G L O S S A R Y WHO’S WHO ON YOUR HEALTH CARE TEAM?

Who’s Who

Description

anaesthetist

A doctor who specializes in anaesthetic medicines.These are drugs used during surgery.

Anaesthetists are often members of a Pain Team who can assist your child in managing pain after surgery.

cardiac surgeons

Doctors who specializes in heart surgery in children.You will only meet them around the time of your child’s surgery.

cardiologist

A doctor who specializes in the diagnosis and treatment of heart disease and heart defects.

chaplain

A person who offers spiritual support and counselling to families of any faith or spirituality tradition. A hospital chaplain can listen to your concerns, offer support during times of crisis, help you explore difficult questions of grief and loss, and provide prayer books or sacred texts for reading.

child life specialist

A person with education and experience in setting up and coordinating activities for your child.

These activities can be helpful in overcoming fears and stress while in hospital.

clinical nurse specialist (CNS)

An advanced practice nurse who specializes in pediatric cardiology. A CNS has expertise in patient care, family and staff education, and family support.

critical care specialist

A doctor who specializes in the care of critically ill children.You will meet them when your child is in the Intensive Care Unit after surgery.They are sometimes referred to as an intensivist.

dietician

A person who specializes in the nutritional care and management of children.This involves assessing dietary intake, growth status, and providing nutritional counselling and education.

fellow

A doctor who had completed medical school and a preliminary specialty training in a particular area and who is now studying in a subspecialty such as pediatric cardiology.This training usually lasts 1 or 2 years.

lactation consultant

A person who provides lactation support and counselling for mothers who are breastfeeding their babies or expressing breast milk.

medical student intern (MSI, clinical clerk, intern)

A medical student in training. MSIs are supervised closely by residents and attending physicians.

nurse

A person who works with family members and the rest of the health care team, nurses meet your child’s physical and emotional needs while in hospital, and at the cardiology clinic.Talk to your child’s nurse if you have questions or concerns, and discuss how you will be involved in your child’s hospitalization.

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G L O S S A RY WHO’S WHO - CONTINUED

Who’s Who

Description

occupational therapist

A person who promotes and maintains a child’s ability to take part in daily living.This involves assessments for feeding, sitting, and other activities.

pediatrician

A doctor who specializes in children’s health.

pediatric cardiologist

A doctor who specializes in the care and medical management of children with congenital and acquired heart defects.

pediatric nurse practitioner

A nurse with additional registration who has specialized knowledge and decision-making skills in assessment, diagnosis and health care management including prescribing medications.

pharmacist

A person who dispenses the medicines which your child may be taking. A pharmacist is available to answer any questions you may have, such as the common side effects of drugs.

physiotherapist

A person who assesses your child’s breathing and helps to keep his or her lungs clear.

Physiotherapists help your child move after surgery which helps prevent joint stiffness and muscle weakness.They can also help in your child’s normal development and movement through exercises or with special equipment.

psychologist

A person who provides both child and family support and counselling while in hospital.This specialist is particularly skilled at helping with stress, coping and grief.

resident

A doctor completing a preliminary speciality training such as pediatrics or anaesthesia.

respiratory therapist (RT)

A technician who looks after the respiratory system, the lungs.Together with the rest of the team, the RT ensures your child is getting enough oxygen, and is able to breathe easily. If your child needs a respirator after surgery, the RT will manage it.

social worker

A person who provides support and counselling to families as they cope with the emotional, social and financial impact of having a child with a congenital heart defect.

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WHAT’S WHAT AT YOUR CHILD’S BEDSIDE?

What’s What

Description

arterial line

A thin flexible tube placed into an artery and connected to a monitor. It allows blood to be drawn without poking your child, and allows staff to closely watch your child’s blood pressure.

catheter

A thin, flexible tube that can be guided into a body organ.

central line

A special tubing inserted into a large vein near the heart.The line allows medications, fluids, or blood products to be given and blood samples to be taken without poking your child.

chest tubes

Plastic tubes that drain air, blood, or fluid from the area around the heart and lungs.

crash cart

A cart containing the equipment and drugs needed to restore heartbeat and breathing in a medical emergency.

endotracheal tube (ET tube)

A tube inserted into the child’s throat to keep the airway open and help with breathing.

Foley catheter

A flexible plastic tube inserted into the bladder to provide continuous urine drainage.

heart monitor

A computer which gives a continuous readout of the heart rate and function of your child’s heart while in the intensive care unit or step-down unit.

Holter monitoring

A small device that records the EKG on tape over 24 to 72 hours, then analyzes for arrhythmia or other abnormalities.

intravenous line

Thin flexible tubing inserted into a vein to allow fluids, medication, and blood products to be given continuously.

nasogastric tube (feeding tube)

A thin flexible tube inserted through the nose, down the throat, and into the stomach.The tube can drain fluids from the stomach while a child is unconscious, or give feedings if the child is unable to get enough nutrients to meet his or her needs.

oxygen mask/ hood/nasal prongs

Ways to provide more oxygen than is available in normal room air. A mask is a cup-shaped device that fits over the child’s mouth and nose. A hood fits over the child’s entire head. Nasal prongs are thin flexible tubes with two outlets, one for each nostril. How oxygen is given depends on how much oxygen is needed and the type of device the child is willing to keep in place.

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WHAT’S WHAT - CONTINUED

What’s What

Description

pacemaker

An electrical device made up of a battery pack and an electrical wire used to treat low or irregular heart rates.The electrical wire is inserted through a vein into the heart to the base of the right ventricle, and a battery pack is placed under the skin. A pacemaker senses the heartbeat and when the rate falls below a specified point, it stimulates the pacemaker to send out a small electrical charge that makes the heart pump. Some newer sensing mechanisms use body temperature, body movement, blood pH, and blood oxygen levels to determine optimal heart activity.

saturation monitor (oximeter)

A device used to measure the amount of oxygen in a person’s blood.

urinary catheter

A thin tube inserted into the bladder to drain urine. See also Foley catheter.

ventilator (respirator)

A machine used to help with breathing; used most often after open-heart surgery.

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HEART WORDS

Heart Word

Description

acquired heart disease

A heart problem such as rheumatic heart disease or bacterial endocarditis that happens after birth rather than during development in the womb.

aneurysm

A ballooning out of the wall of a vein, an artery, or the heart itself, due to weakening of the wall by disease, injury, or an abnormality present at birth.

angiogram (angiography,angiocardiograph)

A diagnostic injection of a dye into the bloodstream or heart chambers.The dye outlines the inside of the heart and great vessels on chest x-rays.

anoxia

A term meaning “no oxygen”. It happens when the blood supply to part of the body is completely cut off.The tissue in that area dies. For example, a part of the heart muscle may die when the blood supply (and the oxygen supply) has been blocked, as by a clot in the artery supplying blood to that area.

anticoagulant

A drug such as heparin or warfarin that decreases clotting of the blood. It prevents clots from forming or becoming larger, but does not dissolve existing clots. Patients on anticoagulants should take special care in preventing injuries and cuts.

aorta

The large artery that receives blood from the heart’s left ventricle and sends it to the body.

aortic arch

Topmost part of the aorta from which the head, neck, and arm arteries arise.

aortic stenosis

Narrowing of the valve opening between the left ventricle of the heart and the aorta.

aortic valve

Heart valve between the left ventricle and the aorta. It normally has three“flaps”, or cusps; when there are only two cusps, the valve is called “bicuspid”. It prevents blood from flowing back into the heart once it has been pumped out of the left ventricle.

apex

The blunt rounded bottom area of the heart. It is the best site to check for a pulse with a stethoscope.

apnea

The absence of breathing.

arrhythmia (or dysrhythmia)

Absence of a heart rhythm.The term “arrhythmia” often refers to an abnormal rhythm of the heart (dysrhythmia).

artery

Large blood vessels that carry oxygenated blood from the heart to various parts of the body.

asymptomatic

Without symptoms. A person who is asymptomatic does not feel unwell or have any complaints about his/her health.

atresia

A condition in which a structure, which is normally present and open at birth, does not develop at all. For example, in pulmonary valve atresia, the valve between the right ventricle and the pulmonary artery does not develop.

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Heart Word

Description

atria (singular - atrium)

The two upper collecting chambers of the heart.The right atrium collects blood from the body.

The left atrium collects blood returning from the lungs by way of the pulmonary veins.

atrial fibrillation

A condition in which the muscles of the atria contract too rapidly because there is a problem with the electrical signal they are receiving.

atrial septal defect (ASD)

An abnormal opening between the atria that allows blood from the higher-pressure left atrium to flow into the lower-pressure right atrium.

atrial septum

The wall (septum) dividing the right from the left atrium.

atrioventricular node (AV node)

A group of specialized heart muscle fibers found in the lower part of the right atrium of the heart.

The AV node receives electrical impulses from the sinoatrial node, then directs them to the heart muscle of the ventricles, causing them to contract and pump out blood.

bacterial endocarditis

A bacterial infection of the heart lining or valves. It tends to occur more often in people with abnormal heart valves or congenital heart defects than those with normal hearts.

balloon angioplasty

A balloon tipped catheter used in the cardiac catheterization lab or during surgery to widen a narrowed blood vessel.

balloon valvuloplasty

A procedure in which a balloon is inserted into the opening of a narrowed heart valve so that blood can move more freely.When the balloon is inflated, the valve stretches open and then the balloon is deflated and removed.

bicuspid valve

A valve with two cusps (flaps).

biopsy

A piece of tissue is removed and examined so that a diagnosis can be made.

Blalock-Taussig shunt

A palliative surgical procedure that connects the aorta to a pulmonary artery to temporarily improve blood supply to the lungs.

blood pressure

The force made by a wave of blood against the walls of the arteries when the blood is pumped from the heart.The pressure is greatest when the ventricles are contracting.This is called systolic pressure, and is the first and highest number of a blood pressure measurement.The pressure is lowest when the ventricles relax.This is called diastolic pressure, and is the second and lowest number of a blood pressure reading.

blue baby

A baby with blue-tinged skin (cyanosis) resulting from insufficient oxygen in the arterial blood.

This colour may indicate a heart defect.

bradycardia

A slow heartbeat or rate. For example, in a newborn, a rate less than 80 beats per minute is slow.

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HEART WORDS - CONTINUED

Heart Word

Description

Bundle of His

Part of a group of specialized cells between the atria and ventricles that conduct electrical impulses to the ventricles to create a regular heartbeat.

capillaries

Tiny blood vessels between arteries and veins that distribute oxygen-rich blood and nutrients to the body’s tissues.

cardiac

Related to the heart.

cardiac arrest

A condition in which the heart stops beating and is therefore unable to pump oxygen-rich blood around the body. If the condition is not reversed quickly, tissue damage and death will happen in minutes.

cardiac catheterization (“cath”)

A procedure in which a thin, plastic tube or catheter is advanced through a blood vessel of the arm or groin into the heart chambers for examination or treatment. It is done to sample oxygen, measure pressure and take angiograms.

cardiac output

The amount of blood pumped by the heart per minute.

cardiology

The study of the heart and its functions in health and disease.

cardiomegaly

A heart that is abnormally large.The heart may become enlarged because it has to work extremely hard because of a congenital heart defect or other condition that affects the pumping and flow of blood.

cardiomyopathy

A general term meaning any type of disorder of the heart muscle.

cardiopulmonary resuscitation (CPR)

A technique that combines chest compressions and rescue breathing, during cardiac arrest to keep oxygenated blood circulating in the body.

cardiovascular

Of, relating to, or involving the heart and blood vessels.

cardioversion

The use of an electrical device to reorganize the heart rhythm.The shock is administered through electrodes placed on the chest wall (external defibrillation) or on the heart (internal defibrillation).

Cardioversion is similar to defibrillation, however the electrical current is synchronized (timed) with the heart’s own rhythm. If successful, it restores the heart’s natural pacemaker function so that a normal heartbeat can resume.

cellulitis

An infection of the skin that can spread on the surface or under the skin.The infected area is usually red and swollen.

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Heart Word

Description

chylothorax

A collection of milky fluid called chyle in the lungs. It happens when the thoracic duct (the main tube that collects lymph, a liquid that contains infection-fighting white blood cells from the upper part of the body) is injured or blocked.The thoracic duct is sometimes damaged during heart surgery because it is so close to the heart and major blood vessels.

closed-heart surgery

A type of surgery that is done on blood vessels in the chest but outside the heart itself and does not need a heart-lung machine.

clubbed fingers (“clubbing”)

Fingers with a short broad tip.This is sometimes seen in children with cyanotic heart defects and in adults with heart, lung, or gastrointestinal diseases. Clubbing reduces over weeks or months when the tissues start getting enough oxygen.

coarctation of the aorta

A condition in which part of the aorta (the main artery that takes blood from the heart to other parts of the body) is narrowed or constricted.

coil

Small coiled wire used to block off a blood vessel.

complex heart defects

A very complicated heart defect, such as a condition in which there is only one ventricle instead of two (single ventricle), the left or right side of the heart is not completely formed (hypoplastic heart), or the pulmonary artery and aorta arise out of the same ventricle (double outlet ventricle).

A child may also have several heart defects at the same time. It is usually not possible to repair complex heart defects in one surgery.

congenital

Conditions present at birth.

congenital anomaly

An abnormal condition present at birth.

congenital heart defect (CHD)

A malformation of the heart or its major blood vessels present at birth.

congestive heart failure

See “heart failure”.

coronary arteries

The two arteries that supply blood to the heart muscle.The coronary arteries rise from the aorta and arch down over the top of the heart.

cyanosis

Blueness of the skin and body tissues caused by low oxygen in the blood.

defibrillation (defibrillate, defibrillator)

A process in which a defibrillator (an electronic device), is used to stop a fast, chaotic heart rhythm (such as ventricular fibrillation) by delivering an electrical shock to the heart.The shock is given through electrodes placed on the chest wall (external defibrillation) or on the heart (internal defibrillation). If successful, it restores the heart’s natural pacemaker role so that a normal heartbeat can start again.

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HEART WORDS - CONTINUED

Heart Word

Description

dextrocardia

Abnormal position of the heart within the right side of the chest.The heart is normally on the left side.The heart may be normal or have other defects.

digestive tract

The parts of the body that food passes through when we eat.The organs include the mouth, the esophagus (the tube that joins the mouth and stomach), the stomach, the small and large intestines (bowels), and rectum.

digoxin (digitalis)

A drug often used to treat congestive heart failure. It makes the contraction of the heart muscle stronger and slows the rate of the heartbeats.

diuretic

A drug that makes the body produce more urine.

ductus arteriosus

An artery, present in babies before birth, that connects the aorta and pulmonary artery.The ductus normally closes shortly after birth; if it remains open (patent ductus arteriosus), medical or surgical treatment may be necessary.

dyspnea

Difficulty breathing.

dysrhythmia

Irregular heartbeat.The heartbeat may be slow (bradycardia), fast (tachycardia), or irregular or chaotic (fibrillation). Health care professionals often call the term “dysrhythmia” “arrhythmia”.

echocardiogram (echocardiography)

A diagnostic test in which pulses of sound (ultrasound) are sent into the body, and the echoes returning from the heart and other structures are electronically plotted and recorded.

edema

Swelling due to an abnormally large amount of fluid in body tissues.

electrocardiogram (EKG, ECG)

A graphic record of the electrical impulses produced by the heart.

embolus (plural - emboli)

An abnormal particle circulating in the bloodstream such as a clot or an air bubble.

embolization

The process or state in which a blood vessel or organ is obstructed by the lodgment of a material mass (such as an embolus).

endocarditis

Inflammation or infection of the endocardium, the lining of the heart.

endocardium

The smooth inner lining of the heart wall. It lies between the heart muscle and the blood inside the heart chambers.

etiology

The cause of a disease.

fibrillation

Rapid, uncoordinated contractions of individual heart muscle fibers. Because the affected heart chamber cannot contract all at once, it pumps blood ineffectively. See atrial fibrillation and ventricular fibrillation.

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Heart Word

Description

foramen ovale

A hole in the atrial septum. It is present at birth and normally closes shortly after birth.

heart block

A condition in which the electrical signal for the chambers of the heart to contract does not pass normally from the atrium to the ventricles.This is a form of abnormal heart rhythm (dysrhythmia).

heart disease

A term used for ailments of the heart and blood vessels.

heart failure (congestive heart failure)

The heart is not able to pump out all the blood that returns to it.This causes blood to back up in the veins that lead to the heart and sometimes fluid to build up in the lungs and other parts of the body.

heart murmur

See “murmur”.

heart-lung machine

A machine that adds oxygen to the blood, removes carbon dioxide, and pumps blood around the body while a person’s heart is opened for open-heart surgery. Also called a cardiopulmonary bypass machine.

haemoglobin

An substance (containing iron) found in red blood cells. It carries oxygen throughout the body where it releases the oxygen as needed. Haemoglobin is the pigment that gives the red colour to oxygen-rich blood.

heredity

The passing on of a particular quality or trait from parent to child.

hypercyanotic spell (“tet” spell”)

A short episode of severe cyanosis. It usually happens in children with a CHD called Tetralogy of Fallot, but may happen to other children as well.

hypertension

High blood pressure.

hypoplastic

Too small or poorly developed. In the most severe heart flow defects, either the right or the left ventricle may be hypoplastic and not capable of working normally.

hypotension

Low blood pressure.

hypothermia

Very low body temperature.

hypoxia

Low level of oxygen in the blood and tissues of the body.

interventricular septum

The muscular wall dividing the left and right lower chambers of the heart.

ischemia

A lack of blood supply to some part of the body. It happens when a blood vessel supplying that part is too narrow or is blocked.

mitral valve

The heart valve between the left atrium and left ventricle. It normally has two leaflets, or cusps. It stops blood from flowing back into the left atrium after it has been pumped into the left ventricle.

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HEART WORDS - CONTINUED

Heart Word

Description

murmur (heart murmur)

An extra sound between the two normal heart sounds “lub” and “dub” heard with a stethoscope.

Most murmurs heard in children do not cause a problem, but some indicate a heart condition needing treatment.

myocardium

The muscular wall of the heart that contracts to pump blood out of the heart and relaxes when the heart refills with returning blood.

open-heart surgery

Surgery done on the opened heart while blood is diverted through a heart-lung machine. Also called cardiopulmonary bypass surgery.

oxygen saturation

The percentage of oxygen in the blood, normally greater than 95%.

pacemaker

A small mass of specialized cells in the right atrium of the heart that produces the electrical impulses that cause contractions of the heart.An “artificial pacemaker” is an electrical device that can substitute for a defective natural pacemaker and control the beating of the heart by sending a series of rhythmical electrical signals.

palpitations

A fluttering sensation of the heart or abnormal rate or rhythm of the heart.

pericarditis

Inflammation of the pericardium. See below.

pericardium

A closed tissue sac surrounding the heart and vessels close to the heart.The space inside the sac normally contains a fluid that provides for smooth movements as the heart beats.

pneumonia

Pneumonia is an infection of the lungs in which the sacs of the lungs (the alveoli) fill with pus and other liquid. It can be caused by bacteria, viruses, or chemical irritants.

polycythemia

Too many red blood cells in the bloodstream, which thickens the blood and allows it to clot more easily.This can increase the risk of stroke and other conditions caused by blood clots.

PPS

Post Pericardiotomy Syndrome; an inflammation of the sac that surrounds the heart..

prophylactic antibiotics

Antibiotics given to prevent an infection.

prophylaxis

Treatment to prevent a disease.

pulmonary

Related to the lungs.

pulmonary artery

The artery carrying blood from the heart to the lungs to supply it with oxygen.

pulmonary hypertension

High blood pressure (hypertension) in the blood vessels of the lungs. It may be caused by constant excess flow of blood to the lungs, and usually takes months or years to develop.

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Heart Word

Description

pulmonary valve

The valve between the right ventricle and the pulmonary artery.The pulmonary valve normally has three leaflets, or cusps. It prevents blood from flowing back into the right ventricle after it has been pumped into the pulmonary artery.

pulmonary veins

Four veins (two from each side of the lungs) that carry oxygen-rich blood from the lungs into the left atrium.

pulse

The beat of the heart as felt through the artery walls. It is usually felt with the index finger over the artery on the thumb side of the wrist or listened to with a stethoscope at the apex (or tip) of the heart on the chest.

regurgitation

The abnormal backward flowing of blood through a valve of the heart.

rheumatic heart disease

Damage done to the heart, particularly to the heart valves, by one or more attacks of rheumatic fever.

self-esteem

How you see yourself and value yourself.

septum

The wall dividing the heart chambers into right and left sides.The atrial septum separates the right from the left atrium; the ventricular septum separates the two ventricles.

shunt

A passage between two blood vessels or between the left and right side of the heart. In surgery, the operation forming a passage between blood vessels to divert blood or the flow of blood or body fluid between blood vessels or organs. An intracardiac shunt is an abnormal opening connecting two sides of the heart. Blood flows (shunts) through the opening from the area of greater pressure to the area of lower pressure.

sinoatrial node (SA node)

The heart’s natural pacemaker. It is located in the right atrium. It causes the atria to contract and pump out blood.

squatting

An involuntary action of cyanotic children which shows that they are tired or breathless.

stenosis

Narrowing in the vessel or valves.

stent

Small flexible tube placed in a blood vessel to widen it.

symptomatic

Having signs or symptoms of an illness.

syndrome

A collection of abnormalities that together produce a recognizable pattern.

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HEART WORDS - CONTINUED

Heart Word

Description

tachycardia

Abnormally fast heart rate.

Tetralogy of Fallot

A combination of four heart defects that often happen at the same time.The defects include a hole between the ventricles (a ventricular septal defect), which allows oxygen-poor blood to mix with oxygen-rich blood; narrowing of the outlet to the pulmonary artery (and sometimes an abnormal pulmonary valve) which partially blocks blood flow from the right ventricle to the lungs; an aorta that straddles the wall between the ventricles, allowing oxygen-poor blood to flow through the ventricular septal defect and into the aorta; and thickened and enlarged heart muscle tissue in the right ventricle.

thrombus

A clot of blood that forms within a blood vessel and remains attached to its place of origin.

transplantation, heart (heart transplant)

An unhealthy heart is replaced with a healthy one.

tricuspid valve

Heart valve between the right atrium and the right ventricle. It has three leaflets, or cusps. Once blood has been pumped from the right atrium into the right ventricle, the tricuspid valve prevents the blood from flowing back into the atrium.

ultrasound (echocardiography)

High frequency sound vibrations which humans cannot hear.

A diagnostic test in which pulses of sound (ultrasound) are sent into the body, and the echoes returning from the heart and other structures are electronically plotted and recorded.

urinary tract

The parts of the body that make, store, and release urine. It includes the kidneys, bladder, ureters (tubes that connect the kidneys to the bladder) and urethra (the tube that carries urine from the bladder to the outside of the body).

valve

An opening, covered by thin leaflets, between two chambers of the heart and a blood vessel.

Normally when a valve is closed, blood cannot pass through it.

valvular insufficiency

A valve that does not close properly and permits a backward flow of blood. It may result from either a congenital heart defect or acquired heart disease.

vein

Blood vessels that carry oxygen-poor blood away from the body tissues back to the heart.

vena cava

Large blood vessels leading to the heart.The superior vena cava is a large vein that carries blood from the upper part of the body (head, neck, chest) to the right atrium.The inferior vena cava carries blood from the lower part of the body, also, to the right atrium.

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Heart Word

Description

venous blood

Oxygen-poor blood carried by the veins from the body tissues back to the heart.

ventricles

The lower pumping chambers of the heart.The left ventricle pumps blood to the body, while the right ventricle pumps blood to the lungs.

ventricular fibrillation

Rapid irregular contractions of the lower chambers of the heart. Because there is no effective heartbeat, cardiac arrest happens.The only treatment for VF is defibrillation.

ventricular septum

The wall separating the right ventricle from the left ventricle. If the wall is incomplete, a ventricular septal defect is present; the defect may lie in the upper part of the wall or down the lower part of the wall.

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REFERENCES Davies, L., & Mann, M. (1992).

Neil, C.A., Clark, C. C., & Clark, E. B.

Wong, D. L. (1995). Whalley & Wong’s

(1992). The Heart of a Child: What Families Need to Know about Heart Disorders in Children. Baltimore, Maryland:The John Hopkins University Press.

Nursing Care of Infants and Children 5th ed. St. Louis, MO: MosbyYearbook, Inc.

Heart Children: Handbook for Parents of Children with Heart Conditions.

Auckland, New Zealand: Parent to Parent Family Resource Center.

Children’s Heart Network Merriam-Webster’s collegiate

dictionary (10thed.), (2002).

Springfield, MA, Merriam-Webster.

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G L O S S A RY

NOTES

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15

APPENDIX A: DIAGNOSTIC TESTS Blood analysis (bloodwork)

What is bloodwork?

What can we do to prepare our child?

Bloodwork is done to check the components in your child’s blood, such as: drug levels whether your child is getting enough or too much of prescribed drugs

Parents can help by remaining calm and comforting. It is best for you to be with your child. Providing a treat and lots of praise afterwards can also help for the next time testing is needed. If your child is very upset by bloodwork, speak to the clinic nurse about some play therapy that may help your child cope.

electrolytes whether the elements in your child’s blood, such as sodium and potassium, are in balance haemoglobin whether the blood is carrying enough oxygen to supply cells throughout the body

When will the results be available?

How long bloodwork results take depends on the type of test. Some results are available within hours, while others take much longer.

white blood cells whether your child has an infection or the ability to fight an infection kidney function how well the kidneys are working.

What will happen during the test?

A local anaesthetic cream called EMLA is applied to the skin about an hour before the poke and is held in place with a clear bandaid.The local anaesthetic takes an hour to numb the skin so that the needle poke does not hurt. EMLA is very helpful in relieving pain, but some children may still get upset.

Once the skin is numb, a needle will be inserted into your child’s vein or artery and one or more blood samples will be taken.The amount of blood taken is very small compared to the amount in your child’s system.The body quickly replaces the blood taken for the test.

We recommend leaving bloodwork to the end of a clinic visit, because many children get upset with the needle poke even with the EMLA. EMLA is not recommended for infants less than six months old.

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APPENDIX A: DIAGNOSTIC TESTS

Chest x-ray is?a chest x-ray?

What is

What can we do to prepare our child?

A chest x-ray is a picture of the inside of the chest—the heart, lungs, and bones. X-rays are a form of radiation similar to light or sound waves that create an image on film of the organs and bones inside the body. Structures that are dense, such as bone, appear white, air is black, and soft tissues such as the heart appear as shades of gray.

The large equipment and darkened room used for x-rays can be frightening to some children.You can prepare your child by explaining that the machine is just like a big camera.

A chest x-ray is created by sending a beam from the back to the front of the chest (called a “frontal view” or “postero-anterior view”) and recording the image on an x-ray film. A side-toside picture (“lateral view”) may also be taken to provide more information and to confirm or rule out any problems seen on the frontal view.The radiologist informs your child’s doctor of any concerns.

A chest x-ray provides information about: the size and shape of the heart, abnormal fluid in or around the heart or lungs, pneumonia or a collapsed lung.

Many parents, older children, and teens have concerns about the harmful effects of radiation.You can explain that technicians are trained to use the least amount of radiation possible and take the fewest number of x-rays to minimize exposure to radiation. A protective lead apron will be placed over your child’s pelvic area to minimize exposure of reproductive organs to radiation.

When will the results be available?

The radiologist usually looks at the x-ray soon after the test, depending on how urgent it is. If it is a routine test, the radiologist will contact your doctor with the results, who will discuss them with you at your next visit. If the x-ray is done for an urgent problem, they will discuss the results with you on the day of the test.

What will happen during the test?

The chest area needs to be free from clothing and any form of jewellery or metal, so hospital gowns are provided. Babies lie flat on a special table for the x-ray; toddlers may sit in a special chair; and older children may stand. Since it is important to stay still for the x-ray, some younger children may need to be restrained for the minute or two it takes to do the test.

Although the test does not hurt, some children cry because they are unable to move. Older children can help by taking a deep breath and holding it for five seconds while the x-ray is being taken.

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APPENDIX A: DIAGNOSTIC TESTS

CT Scan Who should What is a CTcome Scan?to the meeting?

Whothere should come the meeting?

Are any sidetoeffects or after effects?

A C.T. Scan is a form of x-ray.A computer is used to make the picture of a part of the body we want to see. C.T. scans are different from plain x-rays because they show different types of tissue inside an organ, like bone and fat as well as fluid in the tissues.

Not usually. Occasionally the dye gives a feeling of warmth or nausea which goes away quickly.Tell the radiologist about any allergies or other reactions to contrast in the past. If your child is sedated for the test, the staff will tell you about any after effects to expect.

What will happen during the test?

When will the results be available?

Your child will lie on a narrow bed, held safely by straps or bands.The table then slide into the scanner, which looks like a large donut.The camera moves around in the scanner, taking many pictures.The computer then combines the pictures to form a big image.Your child will see a moving light and hear a whirring noise, but the CT does not hurt.

The radiologist will write a report to the cardiologist, and the results may take several days.

It is important that your child lie very still during the test, which may take about 20 minutes. Babies and young children may need to be sedated for the test, in which case, your child will need to fast (not eat) for several hours beforehand.

Sometimes, the radiologist may inject a contrast medium or dye to highlight certain parts of the body (a CT-Angiogram highlights the heart and the vessels near it). If this is done, your child will need to have an intravenous to give the dye.

What can we do to prepare our child?

Your infant or child can expect to wear a hospital gown during the test. He or she will have to lie very still during the procedure. If your child is to be sedated or will have contrast medium (dye), he or she can expect a small prick from the needle. Children older than 5 who may not need sedating can practice lying very still.

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APPENDIX A: DIAGNOSTIC TESTS

Echocardiogram

(echo, cardiac ultrasound, or transthoracic echo)

Who should come to the meeting?

What is an echo?

Who should toprepare the meeting?

What can wecome do to our child?

An echo is a painless test that allows the doctor to see a very detailed picture of the heart. It uses ultrasound (harmless sound waves that cannot be heard) to create a video of the heart as it is beating.The sound waves are sent and received by a transducer, a device shaped like a small microphone that vibrates slightly.The sound waves are sent into the chest, where they bounce (echo) off the muscles and valves of the heart.The transducer picks up the echoes and sends them to the echo machine, where they produce a live image of the heart on a television screen.

Explain to your child that the test will not hurt, but that he or she will need to lie quietly while the test is being done.

Reassure your child that you will stay throughout the test.

If your child seems anxious about the test, consider a play activity at home to recreate the test, using a doll or action figure and a washable, sticky substance such as finger paint or pudding.

A 3-lead ECG (see Electrocardiogram, page 15-5) is done at the same time as the echo.

The test provides the doctor with information about: the shape and condition of the muscles and valves of the heart, how well the heart muscles and valves are working, whether the blood is moving properly through the heart,

Your child will need all clothing removed from the upper body. Gowns are provided to older children to protect their modesty.The gel is washable but sticky, so avoid dressing your child in any clothing that you do not want soiled.

Some children find that listening to music or watching a video during the procedure makes it easier to lie still.You can help your child select the entertainment before the test. If your child is a baby, you may settle him or her with a soother or feeding.Toddlers sometimes need medication to help them lie still during the test. If your child needs medication, the doctor and the clinic nurse will discuss it with you.You may stay with your child throughout the test.

whether there are any blood clots or vegetations.

When will the results be available?

What will happen during the test?

Three patches will be placed on your child’s chest and attached by wires to the ECG machine (see Electrocardiogram, page 15-5). Gel that has been warmed to body temperature will be applied to your child’s chest.The technician will hold the transducer on your child’s chest and move it around to get pictures of different parts of the heart from different angles.

At the same time, the technician will watch the television screen closely to make sure that all of the necessary information is collected.

The results will be available once the doctor has reviewed the video, often the same day.

To ensure that the technician is not distracted during the test, your child will need to lie fairly still during the test.The test will take from 20 to 45 minutes.

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APPENDIX A: DIAGNOSTIC TESTS

Electrocardiogram

(ECG or EKG)

What is is?an ECG?

What will during theour test? can happen we do to prepare child?

An ECG is a quick, painless test that measures the electrical activity of the heart. Every time the heart beats, it produces a tiny amount of electricity. Electrodes (sticky patches with snaps) applied to your child’s body detect this electrical activity.The information is sent from the electrodes to the ECG machine through wires called leads (pronounced “leeds”). No electricity goes from the machine to your child.

An ECG technician will apply electrodes to specific places on your child’s upper body and legs. If your child is a small baby or toddler, you will be asked to remove all of your child’s clothing except for the diaper, panties, or shorts. If your child is older, you can help or ask your child to remove clothing. Gowns are usually provided to older children to protect their modesty.

The information is recorded continuously for up to several minutes and is printed out on a long strip of paper.

The recording provides information about: how quickly the heart is beating (heart rate),

Your child will need to lie still for a few breaths while the ECG is being done. If the child moves around too much, the ECG may need to be repeated.When the ECG is finished, the electrodes can be removed.

What can we do to prepare our child?

whether the heartbeat is regular (rhythm), whether the electrical activity occurs in a normal pattern, whether the heart muscle is a normal size.

The type of ECG depends on the number of leads used to collect the information.A larger number of leads mean that more information can be collected.The most common type of ECG for a child with a heart condition is a 12-lead ECG. There are also 3-lead and 4-lead ECGs. In addition, ECGs are used for Holter monitoring (see page 15-11) and stress testing (see page 15-7).

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

Reassure your child that the test will not hurt.Younger children may be worried that removing the stickers will be painful. A play activity involving removable stickers may reduce the child’s anxiety. Let your child apply stickers and then remove them from a doll or action figure to show your child how easy it is.

When will the results be available?

Your doctor may discuss the results of the test with you before the end of your clinic visit.

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APPENDIX A: DIAGNOSTIC TESTS

Exercise echocardiogram What Who should is an exercise come toechocardiogram? the meeting?

Who Whatshould can wecome do to toprepare the meeting? our child?

An exercise echo is similar to a regular echo (see Echocardiogram, page 15-4), except that it is done while your child exercises on a reclining bike. It can only be done on children who are old enough to ride an exercise bike.

You will usually be given advance notice of this test, as your child will need to wear the right clothing and shoes for exercising.Your child should not eat a large meal within two hours before the test.Ask the doctor or clinic staff whether your child should be given his or her regular medications before the test.

This test provides your child’s doctor with information about: whether the heart rhythm and electrical activity change with exercise, whether the heart gets enough oxygen at rest and

during exercise, whether the heart muscle is in good condition,

Your child’s chest area should be free from any lotion, oil, or powder.

Encourage your child to participate in the test by following instructions and by telling the doctor or technician if there are any problems during the test.

how hard the heart can work before symptoms develop, whether your child experiences symptoms such as tiredness

or chest pain during exercise, how quickly the heart recovers after exercise.

The test takes about an hour to complete.

When will the results be available?

The full results of this test may not be available on the same day but the doctor will discuss any events or concerns with you when the test is done.

What will happen during the test?

Your child’s ECG, blood pressure, and echo will be recorded at rest and while your child pedals a stationary bicycle.

The doctor and ECG technician will be in the room with the child as the test is performed.Your child will be carefully monitored and his or her responses closely watched.The test will be stopped if your child becomes too tired or has any symptoms such as chest pain.

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APPENDIX A: DIAGNOSTIC TESTS

Exercise test

(stress test)

What is an exercise test?

What can we do to prepare our child?

An exercise test is similar to an ECG (see Electrocardiogram, page 15-5) but it is performed while the child walks on a treadmill. It shows what happens to the heart’s rate and rhythm when the heart is stressed by exercise. As the body works harder during the test, it requires more oxygen, so the heart has to pump more blood. Exercise tests can be done only on those children who are able to walk well on their own.

You will usually be given advance notice of this test, as your child will need to wear the right clothing and shoes for running.

Your child should not eat a large meal within two hours before the test.

The test can show: whether the blood supply is reduced in the arteries that supply the heart,

When will the results be available?

The full results of this test may not be available on the same day, but the doctor will discuss any concerns with you when the test is over.

what type and level of exercise is okay for your child.

The test may take up to 20 minutes to complete, and an ECG is recorded continuously throughout the test.

What will happen during the test?

Electrodes will be applied to your child’s chest. An ECG will be performed and your child’s blood pressure will be measured before the exercise test.Your child will start by walking slowly on a treadmill set at a flat angle.The speed and angle of the treadmill will be increased slowly until your child is at his or her maximum exercise effort, walking uphill as fast as is comfortable for your child.The doctor and ECG technician will be in the room with your child as the test is done.Your child will be carefully monitored and his or her responses closely watched.The test can be stopped at any time if your child becomes too tired or has any symptoms such as chest pain or shortness of breath.

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APPENDIX A:DIAGNOSTIC TESTS

Heart catheterization What is a heart catheterization?

Heart catheterization is a test in which a catheter (a flexible tube containing special sensors) is inserted into the heart through one of the large blood vessels.

The test gives the cardiologist detailed information about: the pressure in the chambers of the heart and its large blood vessels, the amount of oxygen the blood carries to and from

the heart, the amount of blood pumped into the body with each beat.

The test is done under sedation or a general anaesthetic, and takes two to three hours to complete.

What will happen during the test?

Most children having heart catheterization are admitted to the hospital for the day.Your child will go into the hospital the morning of the test and may be allowed to leave that evening, or may need to stay overnight in the hospital so his or her condition can be monitored.

Your child will not be allowed to have anything to eat or drink for several hours before the test.The number of hours depends on your child’s age. Keeping your child’s stomach completely empty helps prevent vomiting during or after the procedure. It is important not to give your child a drink or snack, as even a small amount of food or drink vomited can enter the lungs and cause pneumonia.

If your child is on any medications, check with your doctor or hospital staff about whether to give the medication on the morning of the test. If the medication is to be given, it should be taken at least 3 hours before the test. If your child has any allergies to medications, be sure to tell the hospital staff.

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If your child is taking any medication to prevent blood clots, such as AspirinTM (ASA) or warfarin, your child must stop taking the medication before the procedure.The cardiology clinic nurse will tell you when to stop these medications. If this is not part of the instructions you were given, call the clinic nurse for specific information.

The catheterization will be done in a small operating room, usually in the x-ray department.An IV line will be put into a vein in your child’s hand or foot.An anaesthetist will give your child a sedative or anaesthetic through the IV. This will help your child relax or sleep during the procedure.The anaesthetist will talk to you about what type of sedation or anaesthetic will be used for your child’s anaesthetic.

When your child is sedated, the site where the catheter is inserted will be cleaned and a local anaesthetic will be injected to numb the area.The groin (the crease at the top of the leg) is the usual site, although other sites are sometimes used.

When the area is numb, the cardiologist will insert a needle into a large artery or vein. A guide wire will be threaded through the needle and then the needle will be removed, leaving the guide wire in place. A catheter (flexible tube) will then be placed over the guide wire.The cardiologist will carefully guide the catheter through an artery/vein into position in the heart.The movement of the catheter is monitored on an x-ray screen.

Once the catheter is in place, the cardiologist will do specific tests and measurements to learn how the heart and blood vessels are working. After the tests, the catheter will be removed.The small wound will be covered with a bandaid.

Stitches are usually not needed.

Your child’s heart will work normally during the test. Blood pressure, ECG, and oxygen saturation will be monitored continuously during and after the test.

With the help of an anaesthetic or sedative, most children sleep comfortably through the procedure and do not feel anything. Some children may feel a “sting” when the freezing is injected.Your child may feel pressure as the catheter goes in, but will not feel the catheter moving in the blood vessel.

Some children feel a warm flush for a few seconds if contrast solution is injected.

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HEART CATHETERIZATION - CONTINUED

Your child will go to the recovery room for about an hour before returning to the daycare or ambulatory unit. Once awake, babies can have clear fluids such as sugar water, and older children can have a PopsicleTM or apple juice. As long as clear fluids do not cause an upset stomach, your child can then eat a light meal.

After at least four to six hours in the recovery room, most children can go home.Your child will probably feel sleepy after the test and will need to lie quietly in bed for the rest of the day. Most children can follow the normal routines the next day.

Are there any risks or complications?

A heart catheterization is done by skilled professionals who handle the child and equipment with great care. Damage to the heart during a catheterization is rare. However, there are risks with this test.You, as the parent or guardian, must sign an informed consent.This legal document states that the cardiologist has explained the reasons for doing the test, and that you understand the risks and benefits. Ask questions and discuss your concerns with your cardiologist.

The possible risks of a heart catheterization include:

What can we do to prepare our child?

Tell the staff about any allergies or reactions that your child has to food or other substances.

Babies and toddlers may be more relaxed if they have a special stuffed animal, blanket, toy, or pacifier with them for the test.

If your child is older and is going to be sedated (sleepy) rather than having a general anaesthetic, he or she may want to listen to some favourite music during and after the test.

When to tell your child about the test depends on his or her age.You can tell your toddler the night before or the morning of the test. Older children can be told further in advance of the test so that they can ask questions, which you should answer honestly.

1. An allergic reaction to the contrast solution or sedation during the test.

2. Irregularities in heart rhythm during the test.

3. Blood clots may form during or after the test (if the leg where the catheter was inserted swells, looks paler feels cooler than the other, this may mean that a clot has formed).

4. A small amount of bleeding from the catheter insertion site in the groin. If this happens: place a piece of gauze or cotton over the site and press

down firmly for 10 minutes, when the bleeding stops, cover with a bandage, if the bleeding continues, press firmly for another

Let your child know that you will not be able to be in the room during the test, but that he or she will be sleepy or asleep during this time. Reassure your child that you will be there when the test is finished.

10 minutes, keep pressing until the bleeding stops, remove the bandage 24 hours after the bleeding

has stopped.

What happens after the test?

Wait 24 hours before giving your child a tub bath.You can sponge bath your child (wash him or her using a damp sponge or cloth) as soon as you wish.

You may remove the bandage 24 hours after the test.The groin may have a bruise and feel sore for a day or two.

If you are from out of town, plan to stay in the area the night after the heart catheterization.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

5. Swelling or redness at the insertion site, and fever, which indicate that there is an infection.

Call your cardiologist or clinic nurse if you have any concerns.

Special procedures during heart catheterization Your cardiologist will talk to you briefly in the daycare or ambulatory unit when the procedure is over to tell you how your child is doing. After the cardiologists and surgeons have studied the test results, your doctor will contact you to discuss findings and possible treatments.

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APPENDIX A: DIAGNOSTIC TESTS

SPECIAL PROCEDURES DURING HEART CATHETERIZATION

Other procedures are sometimes done during a heart catheterization.Your cardiologist will discuss any special procedures with you first.

Procedure

Description

An angiogram

the injection of a special liquid called a contrast medium through the catheter into the heart.The blood vessels, major arteries, chambers, and valves of the heart will then show up on x-ray pictures.The contrast solution passes out of the body in the urine within 24 hours. For more information about angiograms, ask the clinic nurse.

Balloon dilatation

(also called angioplasty or valvuloplasty) is done if the heart’s valves or blood vessels need to be enlarged to allow more blood to pass through them. A special catheter with an inflatable balloon at the end is passed to the part of the heart that needs to be enlarged.The balloon is inflated to stretch the tissue. After these procedures, children may need to stay in hospital overnight so they can be watched carefully.

An atrial septostomy

done to enlarge the opening between the atria (two top chambers of the heart).

The catheter is passed from the right atrium, through an opening, into the left atrium.

The catheter has a small balloon, which increases the opening while the catheter is pulled back between the two atria.

A stent

inserted if a blood vessel is too narrow to allow enough blood into the heart and lungs. A small tube called a stent is placed into the narrow part of the vessel by the catheter as it moves through the narrowed area.The stent holds the blood vessel open so that blood can flow through the area more freely.

A coil

inserted if too much blood is flowing in one direction, usually because of extra blood vessels in a particular area. A coil is inserted in the same way as a stent, but instead of opening the blood vessel, it blocks the blood flow.

Atrial or ventricular septal closure device

an atrial septal defect or a ventricular septal defect can sometimes be closed by a device during a heart catheterization procedure instead of during an operation.

A biopsy

can be done to take a small sample of tissue of the heart or blood vessel.The tissue is then examined under a microscope to see if there is damage to the heart muscle cells or small blood vessels in the heart.

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APPENDIX A: DIAGNOSTIC TESTS

Holter monitoring What is Holter monitoring?

What can we do to prepare our child?

Holter monitoring is using a portable ECG about the size of a pager (see Electrocardiogram, page 15-5) that provides information on how the heart works over a 24-hour period.

A 5-lead ECG recorder called a Holter monitor is worn for a whole day of normal activity.The purpose of the test is to provide your doctor with information about whether the heart rate and rhythm changes naturally (with nothing to trigger the change) or in response to different activities such as eating, playing, exercising, sleeping, or in stressful situations.

Older children may be reluctant to go to school or participate in regular activities while wearing the monitor.

You can encourage your child by describing the monitor as “similar to a pager”, reassuring him or her that loose clothing will hide both the wires and the monitor, and encouraging your child to keep the diary in a pocket.

Holter monitoring is sometimes referred to as 24-hour continuous ECG monitoring, ambulatory electrocardiography, ambulatory ECG, or ambulatory EKG. Many types of recording devices besides the Holter monitor are now available for this test. Some devices record continuously for 24 to 48 hours, and some make brief, intermittent recordings over weeks or even months.

Some children who have infrequent arrhythmias (irregular heartbeats) may be given an event recorder.This small device can record heart rate and rhythm during an event at home.

You or your child will be shown how to use the event recorder before being sent home with it.

When will the results be available?

The results of this test may take several days.

What will happen during the test?

ECG electrodes with leads will be securely attached to your child’s chest.The recorder, which is about the size of a pager, is worn either in a backpack or on a special belt around the waist.The recorder must not get wet, so your child will not be able to bathe or swim during the test.

Your child should be as active as usual while wearing the Holter.You will be asked to keep a record of activities and symptoms in a diary to help link any changes in rate or rhythm with different events during the day.

The Holter may be removed easily after the test period by peeling the stickers from your child’s chest.The monitor and diary must be returned to the clinic as soon as possible after the 24-hour test period.

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APPENDIX A: DIAGNOSTIC TESTS

Lung Scan What is a lung scan?

What can we do to prepare our child?

A lung scan is a nuclear medicine scan, which is a little like an x-ray. It creates a picture of the size, shape and position of the lungs to see how well they are working. It also checks on the supply of blood and oxygen to the lungs. A nuclear medicine scan shows more than an x-ray, because the picture on the screen shows the lungs moving and helps to see how well they are working.

No special preparation is needed. Come ready to stay and help your child lie still. A good plan is to keep babies and toddlers awake before the scan so that they are tired. Bring a bottle of juice, milk or formula to help your child relax into sleep. Some children like to hold a special toy or blanket, or listen to music or a story.

The radioactive material gives off rays as it travels in the blood.

A special camera records the rays as they move through the body and a computer creates a picture.

Most children manage the test well if they know what to expect. Please explain to your child what will happen, and describe what he or she will feel.

What are the side effects?

What will happen during the test?

The test is done by a technologist in the Nuclear Medicine Department.Your child will be put on a special table, and will be held safely by Velcro straps. It is important for your child to hold still during the test.The test is just like having a picture taken and does not hurt.

The small amount of radioactive material given to your child should not cause any concerns. Just to be doubly safe, we recommend that the 6-24 hours after the test you (and anyone else caring for your child) take the following steps: wear disposable, waterproof gloves when handling your

child’s urine (includes diaper changes), There are two parts to this test.

Part I: Your child breathes a small amount of radioactive material through a mask, like an oxygen mask. Some children find it a little difficult to draw a breath through the air mask, so oxygen is available to help them.Your child can either sit up or lie down for this scan; it takes about 5-10 minutes.

Part 2: Your child will have an intravenous injection of a small amount of radioactive material.The technologist then positions the special gamma camera over or under your child.

This part takes about 30 minutes.

use disposable, waterproof gloves to change sheets or

clothing which have urine on them and then put clothing into the regular laundry, flush the toilet immediately after your child uses it, if you are pregnant, ask someone else to do most of the

childcare for the next 6-24 hours, at home, place diapers in the outside garbage; in the

hospital, ask your nurse or caregiver where to dispose of diapers, if you have any questions, please ask your child’s nurse

or the nuclear medicine technologist.

When will the results be available?

The nuclear medicine doctor will read the pictures and write a report to your child’s cardiologist.The results may take several days.

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APPENDIX A: DIAGNOSTIC TESTS

Magnetic resonance imaging (MRI) What is an MRI? An MRI of the heart provides very detailed images of the anatomy and function of the heart and blood vessels. It is so detailed that it can show the different tissues that make up the heart, including the heart muscle (myocardium), the tissue covering the heart (the pericardium), and the blood inside the heart.

An MRI uses a combination of magnetic and radio waves to produce signals that a computer forms into images.There are no known side effects.

What will happen during the test?

The MRI machine is large and shaped like a tunnel.Your child will lie on a narrow table that slides in and out of the tunnel. For safety, your child will likely be strapped to the table.

The image can be blurred if the child moves around too much, so very young children may be sedated or given a general anaesthetic.

Children who need sedation or a general anaesthetic are not allowed any food or drink for several hours before the test.

If the stomach is completely empty, this helps prevent your child from vomiting during or after the procedure. It is important not to give your child a drink or snack, as even a small amount of food or drink if vomited can enter the lungs and cause pneumonia.

If your child is on any medications, check with your doctor or hospital staff about whether to give the medication on the morning of the test. If the medication is to be given, it should be taken at least 3 hours before the test. If your child has any allergies to medications, be sure to inform the hospital staff.

An IV may also be necessary for injecting a “contrast medium”.

A contrast medium is a material that moves through the blood to a part of the body, highlighting it on the image that is created.

Your child will not feel the magnetic waves.The machine is very noisy, making frequent knocking and humming noises.

Children who are not sedated are given earplugs, and may be able to listen to music.

A single test takes 45-90 minutes, depending on the type of machine.

Once awake, babies can have clear fluids such as sugar water, and older children can have a PopsicleTM or apple juice. As long as clear fluids do not cause an upset stomach, your child can then eat a light meal.

What can we do to prepare our child?

Your child may wear regular clothing with no metal fasteners or decorations, or a hospital gown. All metal jewellery must be removed. Let the technicians know if your child has implanted devices such as a pacemaker or stents.

The machine looks frightening to some children.You can prepare your child by reassuring him or her that the test will not hurt—that the machine is a big camera that makes a lot of noise, and that you will be in the room the whole time.

Your child may bring a toy, blanket, or other soothing item for the test as long as it does not have any metal pieces.

When will the results be available?

The radiologist will write a report to the cardiologist, and the results may take several days.

Sleeping medicine will usually be given through an intravenous (IV) line. A local anaesthetic called EMLA will be placed on the skin on the back of your child’s hand to numb the skin.

The IV will be inserted through the numbed skin.Your child will recover from the anaesthetic in a few hours, and will have to stay in the hospital or clinic until he or she is fully awake.Your child may have a sore throat for a day or two.

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APPENDIX A: DIAGNOSTIC TESTS

Oxygen saturation test (“sats” or oximetry) What is an oxygen saturation test?

The oxygen saturation test is a painless test that checks the amount of oxygen in your child’s blood. A probe shines a special type of red light through a small body part such as a finger, toe, or ear lobe.The probe senses any changes in the light and uses this information to calculate the amount of oxygen in the blood.

This test may also be done to check the oxygen saturation level while your child is exercising, or to monitor oxygen saturation continuously while your child is in hospital.

The probe generates heat, so the probe site will be changed regularly when used for long periods.

When will the results be ready?

The results are available immediately.

What will happen during the test?

A small sensor will be wrapped around either a toe or a finger and held in place by special non-sticky tape.The sensor will be attached to a small hand-held machine called a pulse oximeter.

The test is very quick but your child needs to be still for an accurate reading.This can take a few minutes with younger children and babies.

Sestamibi (mibi) What is a mibi scan?

A mibi (pronounced “mib-ee”) is a special type of scan used to produce images of the heart. A small dose of radioactive material is injected into a vein, and this material moves through the blood to the heart. A special camera takes readings and a computer forms them into moving pictures of the heart while it is working.

What will happen during the test?

A local anaesthetic cream called EMLA will be applied to the skin about an hour before the test and the EMLA will be held in place with a clear bandaid.The local anaesthetic takes an hour to numb the skin. EMLA is very helpful in relieving pain but some children may still get upset. Once the skin is numb, an intravenous (IV) line will be inserted in the back of your child’s hand.

A scan will be performed while your child is resting.This takes about 15 minutes.Your child will then have an exercise test on a treadmill (see Exercise Test, page 15-7). During the exercise test, a small amount of radioactive material will be injected into the IV, and a scan will be done.The scan will be

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repeated several times, and each scan takes about 15 minutes.

The test, which is done by an experienced nuclear medicine technologist, takes several hours to complete.

What can we do to prepare our child?

Your child should have nothing to eat for a few hours before the test.You may stay with your child during the whole procedure and you may read a story or play a special tape.

After the exercise test, your child may eat. Several more scans may be done after the exercise test.The whole test may be repeated without the exercise portion.This is termed a “resting mibi scan”.

When will the results be available?

The radiologist will write a report to the cardiologist. It may take several days before the cardiologist can give you the results.

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

APPENDIX A: DIAGNOSTIC TESTS

Tilt table test What is the tilt table test?

What will happen during the test

The tilt table test may be performed if your child has fainting attacks called syncope (pronounced “sin-cope-ee”).There are many reasons why your child may have syncope.This test will help determine the specific cause of these spells and how best to manage them.

Your child will not be allowed to eat a large meal in the two hours before the test. He or she will lie on a padded tilt table and relax for about 20 minutes. Safety straps will be placed across the chest and legs to hold your child in place.

During this time, your child’s blood pressure and ECG will be recorded.

The tilt table test checks to see whether your child’s syncope is a relatively harmless response to a change in position, such as standing up suddenly after lying down. In this condition, the child’s blood pressure drops when he or she changes position, and the brain does not get enough oxygen for a very short period. As soon as the child lies down, blood pressure returns to normal, the brain gets enough oxygen, and the child wakes up. If the tilt test is positive, there are medications available to help prevent the syncope attacks.

The technician will slowly move the tilt table to the upright position.Your child will be asked not to move around or tense leg muscles during this time.The cardiologist and ECG technician will monitor your child for any changes in blood pressure or ECG.The table will then be returned to the horizontal position and your child will be allowed to rest.

The entire test may take up to an hour. If your child faints or experiences any symptoms of fainting, the test is considered “positive”.

What can we do to prepare our child?

Reassure your child that the test will not hurt, and that you will be there throughout the test. If your child seems very anxious about the test, you can demonstrate the movement of the tilt table using a doll or action figure and a book or small board.

When will the results be available?

The results may be available shortly after completion of the test.

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APPENDIX A: DIAGNOSTIC TESTS

Trans-esophageal echocardiogram (TEE) What is a trans-esophageal cardiogram (TEE)?

What will happen during the test?

TEE uses the same technology as an echo to provide very clear images of the heart from behind the heart (see Echocardiogram, page 15-4). Instead of collecting the images by moving a transducer over the child’s chest, a special tube-shaped transducer is inserted into the esophagus.The esophagus is the tube that lies right behind the heart and connects the mouth to the stomach.The cardiologist will use the transducer to record images of the heart on a videocassette.

Your child will not be allowed anything to eat or drink for several hours before the procedure. Keeping your child’s stomach completely empty helps prevent your child from vomiting during or after the procedure. It is important not to give your child a drink or snack, as even a small amount of food or drink if vomited can enter your child’s lungs and cause pneumonia.

A TEE helps determine whether the following are happening: there are any abnormalities in the heart muscle, valves, or major blood vessels to and from the heart, the heart muscle and valves are working properly, there are any blood clots or infection in the heart,

A TEE also provides greater detail than a trans-thoracic echo on vegetations within the heart such as seen in bacterial endocarditis.This test may also be used during surgery when it is not possible to do a trans-thoracic echo (see Echocardiogram, page 15-4).

For this test, your child will be given a general anaesthetic.

To avoid giving your child anaesthetics too often, a TEE may be done at the same time as another planned procedure that uses a general anaesthetic.

If your child is on any medications, check with your doctor or hospital staff about whether to give the medication on the morning of the test. If the medication is to be given, it should be given at least 3 hours before the test. If your child has any allergies to medications, be sure to tell the hospital staff.

An intravenous (IV) line will be inserted for the general anaesthetic. A local anaesthetic called EMLA will be placed on the skin on the back of your child’s hand to numb the skin, and the IV will be inserted through the numbed skin.

Once your child is under general anaesthetic, the cardiologist, with help from the echo technician, will pass a small tube-shaped transducer into your child’s esophagus and record images of the heart.Your child will recover from the anaesthetic in a few hours, and will have to stay in the hospital or clinic until fully awake. Once awake, babies can have fluids such as sugar water, and older children can have a PopsicleTM or apple juice. As long as clear fluids do not cause an upset stomach, your child can then eat a light meal.

Your child may have a sore throat for a day or two.

What can we do to prepare our child?

Reassure your child that he or she will be asleep during the procedure and will not feel anything.Your child may bring a toy, blanket, or other soothing item for the test.

When will the results be available?

The results of the test will be discussed with you once the doctor has reviewed the video.

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HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

APPENDIX A: DIAGNOSTIC TESTS

NOTES

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APPENDIX A: DIAGNOSTIC TESTS

NOTES

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HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

INDEX

INDEX

A ACE inhibitors, 9-9 Acetaminophen, 9-10 Alternative therapies, 9-18 Anemia, 2-13 Aneurysm, 14-5 Angiogram, 14-5, 15-9 Angioplasty balloon, 14-6 Antiarrhythmics, 9-8 Antibiotics, 2-14, 9-10 dosage, 2-17 Anticoagulants, 9-7, 9-8, 14-5 Arrhythmia, 14-5 Atresia, 14-6 B Babies and toddlers, 7-1 hospital and development, 7-2 illness and development, 7-2 preparing for tests, 7-4 restraints, 7-4 what they need to learn, 7-1 Bacterial endocarditis, 2-8, 2-14, 9-10 See Endocarditis antibiotics, 2-16, 2-17 causes, 2-14 diagnosis, 2-15 preventing it, 2-15 signs, 2-15 teeth, 2-15 what it is, 2-14 Beta blockers, 9-8 Biopsy, 2-16, 14-6, 15-10 Blood bloodwork, 15-1 haemoglobin, 2-4, 14-10 Blood products, 10-3 Blueness of the Skin. See Cyanosis Bradycardia, 2-4 Breastfeeding, 9-14

C Calcium channel blockers, 9-9 cardiomyopathy, 2-8, 2-16, 14-7 Cardiovascular system, 2-2, 10-1, 14-7 Closed-heart surgery, 10-3, 10-7, 14-8 Clubbing, 2-12, 14-8 Congenital Heart Defects, 2-1, 14-8 causes, 2-6 how heart and blood vessels work, 2-3 physical exam, 2-7 what is CHD?, 2-2 Congestive Heart Failure, 2-8, 14-8 causes, 2-8 signs, 2-9, 2-10 what is CHF?, 2-8 Coping, 3-1 buddy, 6-5 building support team, 3-3 divorced parents, 6-5 family and friends, 6-4 fatigue, 6-6 money, 6-7 partners, 6-1 single parent, 6-5 stress, 6-1 Costs, 5-4, 6-7 another province or country, 5-4 special formulas, 9-16 CPR, 11-2 CT Scan, 15-3 Cultural and spiritual beliefs, 9-21 Cyanosis, 2-1, 2-11, 2-13, 14-8 causes, 2-11 signs, 2-11 what it is, 2-11

E ECG. See Electrocardiogram Echocardiogram, 14-13, 15-4, 15-6 ECLS, 10-12 ECMO, 10-12 Electrocardiogram, 14-9, 15-5, 15-7 Embolus, 14-9 Embolization, 14-9 Emergency information needed, 11-3 phone numbers, 11-1 preparing for emergency, 11-1 signs, symptoms, 11-1 Exercise test, 15-7 F Fallot, tetralogy of, 14-13 Feeding tubes, 9-16 Fibrillation, 2-4, 14-9 First Nation’s, 9-21, 13-4 Flying, 7-12, 9-5 Foley catheter, 14-3 G Glossary, 14-1 Going home after surgery, 10-14 Grief and bereavement, 6-11 Growth chart, 13-2

D Dental care, 9-17 Diagnostic Tests, 15-1 Digoxin, 9-6 Directory of people, 13-4 Diuretics, 9-6 Drugs. See Medications Dysrhythmias, 2-4, 14-5, 14-9

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

16-1

INDEX

H Health Care System, 5-1 team, 5-1 team relationships, 5-2 Health Care Team, 5-1 second opinion, 5-3 Heart blood pressure, 2-4, 8-17, 9-9, 14-6, 14-10 catheterization, 15-8, 15-9 dysrhythmias, 2-4 electrical system, 2-3 healthy blood, 2-4 how the heart works, 2-3 murmur, 14-11 Heart catheterization, 15-8, 15-9 special procedures, 15-10 Heart rate, 2-3 Heart-lung machine, 10-12, 14-10 Heparin, 9-7, 9-8 Holter monitoring, 14-3, 15-11 Hospital cardiology clinic, 4-4 locating people and places, 4-2 staying overnight, 4-3 I Immunizations, 9-12 records, 13-3 Informed consent, 10-2 Intensive Care Unit, 10-8 Internet, 12-1, 12-3, 12-4 websites, 12-4 Iron supplements, 9-10

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L Lasix, 9-6 Life support ECMO, ECLS, 10-12 Lung Scan, 15-12 M Magnetic resonance imaging (MRI), 15-13 MedicAlertTM, 8-7 Medications, 9-1, 9-11 ACE inhibitors, 9-9 acetaminophen, 9-10 Antiarrhythmics, 9-8 antibiotics, 9-10 Anticoagulants, 9-7 beta blockers, 9-8 calcium channel blockers, 9-9 communication, 9-1 Digoxin, 9-6 Diuretics, 9-6 getting them, 9-2 giving medications, 9-1 how to get children to accept them, 9-2 iron supplements, 9-10 list, 9-5 missing one dose, 9-3 oral syringe, 9-3 references, 9-19 safety, 9-2 storage, 9-2 support drugs, 9-18 travel, 9-5 vomitting, 9-2 MRI, 15-13 Multiple needs, 5-3 myocarditis, 2-8

N Nutrition, 9-12 breastfeeding, 9-14 cultural beliefs, 9-16 safety, 9-13 special diets, 9-16 tips for managing problems, 9-15 tube feedings, 9-16 vitamins and minerals, 9-16 O Open-heart surgery, 10-3, 10-6, 14-11 Oral syringes, 9-3 Oxygen saturation test, 15-14 P Pacemaker, 2-3, 10-4, 10-8, 10-10, 14-4, 14-11 Physical Exam, 2-7 Polycythemia, 2-12, 14-11 Post Pericardiotomy Syndrome, 10-3, 14-11 Preschoolers, 7-5 daycare, 7-7 help and resources, 7-7 hospital and development, 7-6 illness and development, 7-6 preparing for tests, 7-8 what they need to learn, 7-5 R Records, 13-1 Resources, 12-1 Internet, 12-3 Restraints, 7-4

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

INDEX

S Saturation monitor, 15-14 School-aged children, 7-9 after school programs, 7-12 help at school, 7-11 hospital and development, 7-10 illness and development, 7-9 physical activity letter, 7-13 physical education, 7-12 preparing for tests, 7-12 school, 7-11 travel, 7-12 Second opinion, 5-3 Sestamibi scan (mibi), 15-14 Shunt, 14-6, 14-12 Siblings, 6-7 Stent, 14-13, 15-10 Stress test, 15-7 Support, 3-3, 5-1, 5-2, 5-5, 6-1, 8-11, 9-21, 10-11, 12-1, 12-2 Surgery, 10-1 afterICU, 10-14 blood products, 10-3 day of surgery, 10-5 decisions, 10-1 informed consent, 10-2 operating room, 10-6 preparation, 10-1, 10-4 questions to ask, 10-2 recovery in ICU, 10-8 risks, 10-3

T Tachycardia, 2-4, 14-13 TEE, 15-16 Teens, 8-1 change to adult care, 7-14 choose your doctor, 8-6 diet, 8-17 driver’s license, 8-18 lifestyle, 8-16 medical insurance, 8-15 MedicAlert, 8-7 medications and other substances, 8-20 planning your future, 8-13 prepare for emergency, 8-7, 8-8 sex, 8-11 support, 8-11 treatments and medications, 8-4 Teeth and dental health, 9-17 Tests, 15-1 CT scan, 15-3 echocardiogram, 15-4, 15-6 electrocardiogram, 15-5 exercise echocardiogram, 15-6 exercise test, 15-7 heart catheterization, 14-7, 15-8, 15-9, 15-10 Holter monitoring, 14-3, 15-11 lung scan, 15-12 MRI, 15-13 oxygen saturation, 15-14 sestamibi scan, 15-14 tilt table, 15-15 trans-esophageal echocardiogram, 15-16 x-ray, 15-2 Tetralogy of Fallot, 2-13, 14-10, 14-13 Therapies-alternative, 9-18 Thrombus, 14-13 Tilt table test, 15-15 Trans-esophageal echocardiogram, 15-16 Travel, 7-15, 9-5

HEART & SOUL - YOUR GUIDE TO CONGENITAL HEART DEFECTS

V Vaccine. See Immunizations W Warfarin, 9-7 Websites, 12-2 X X-ray, 15-2

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