Heart Caths for Kids

A book for parents of children needing heart catheterization

This book is to help you—the parent of a child with a heart problem. We wrote it to explain about cardiac catheterizations (heart caths)— the types of caths, what they are and how they are done.

When your child has a heart cath, you want to get answers to your questions. This book can help you understand:

● who will care for your child during his cath

● what heart caths are for

● what to expect before the heart cath is done

● what goes on during a heart cath

● how best to help your child after it is over

Icons used in this book:

= Caution and warning

= Special notes and information

= Check off or fill in with your specific information

Your child's healthcare team

These are the people who will take care of your child. Fill in their names to help you remember them.

● Pediatric Cardiologist – a doctor with special skills in the care of children and young adults with heart problems.

My child’s cardiologist is Dr.

● Interventional Cardiologist – a doctor with special skills to do caths on children. (This doctor may be your child’s primary cardiologist or another doctor.)

My child’s cardiologist is Dr.

● Anesthesiologist*– a doctor with special skills in caring for your child during his cath. This doctor gives medicine to help your child sleep through the cardiac cath and monitors his vital signs during the cath.

My child’s anesthesiologist is Dr.

● Nurse practitioner* – a nurse with special skills to care for your child before and after his cath or surgery. This nurse, along with the doctors, works closely with the other nurses to assure that you and your child’s experience goes smoothly.

My child’s nurse practitioner is

● Pediatric registered nurses – nurses with special skills in the care of children with heart problems. These nurses care for and support your child during and after the cath or surgery.

My child’s nurses are

● Heart surgeon* – a doctor with special skills in heart surgery for children and young adults.

My child’s heart surgeon is Dr.

● Child life specialist* – a person with special skills in the developmental needs of your child. This person helps prepare your child for the cath and for recovery by explaining things in terms he can understand.

My child’s child life specialist is

● Social worker* – a person who helps you and your family during the stress of a hospital stay.

My child’s social worker is

* These team members may not be directly involved with every heart cath in every hospital. Whether or not they are used in your child’s case will depend on the hospital and/or your child’s heart problem.

A heart cath

A heart cath is a common invasive (inside the body) procedure. The cath is done to allow the doctor to see inside the heart—its chambers, valves and main blood vessels (both arteries and veins). It also allows the doctor (cardiologist) to see inside the arteries that feed the heart muscle itself (coronary arteries).

The heart cath is a procedure that usually does not require an incision (cut) in the skin, like during surgery. But it does involve needle punctures to insert the catheters into the vessels that lead to the heart. The needles are removed once the catheter is in the vessel. As a rule, the puncture sites do not require stitches to close them after the catheters are removed.

Your child will need an intravenous (IV) line inserted into a vein. This allows medicines and fluids to be put right into his vein. In some cases, pre-medications (sedatives) are given by mouth and a numbing cream may be put on the insertion site. Once the area is numb:

● a local anesthetic will be injected into the skin where the catheter will be inserted to numb it. This helps your child feel less pain and be more comfortable.

and/or

● your child may be given a general anesthetic to keep him asleep during the cath.

The cardiologist inserts thin, flexible tubes (catheters) into blood vessels—much of the time, in the upper leg (groin). They can also be inserted:

● into a large blood vessel in the neck

● right under the collar bone

● through the belly button in newborns

● just below the rib cage on the right side

The catheters are moved along through the blood vessels until they enter the heart. An x-ray picture allows the doctor to see the catheters as they are moved along. Once the catheter is in place, pressure measurements are taken in each of the chambers of the heart. Then dye is injected through the catheter. As this is done, pictures are taken.

The cardiologist will be able to measure the pressure in different parts of the heart and how much blood is pumping in your child’s heart.

Depending upon what type of cath is being done, other procedures and tests can be done to get more information and/or fix certain problems. The catheters are then removed and the insertion site(s) are bandaged.

Insertion site options

Types of heart caths

There are two basic types of heart caths:

● diagnostic (die-ag-nos-tick)

● interventional (inter-ven-shun-ul)

Diagnostic caths are done to learn more about or to diagnose your child’s heart problem.

Interventional caths are done to:

● repair a blood vessel in or around the heart

● repair a heart valve

● implant a device, stent or coil

● fix an abnormal heart rhythm

See the appendix beginning on page 23 for more information on each type of cath.

The heart cath lab

The heart cath lab is a room that has special equipment needed for the procedure. It consists of:

● X-ray equipment – Cameras to take pictures of your child’s heart chambers, valves and arteries during the cath.

● monitors (like TV screens) – One will be used to show your child’s heart rate and rhythm during the cath. Others may be used to show pictures of your child’s heart chambers, valves or arteries during the cath. And, others will be used to keep an eye on your child’s breathing and blood pressure during the cath.

● anesthesia equipment – Used to sedate your child to keep him asleep during the cath.

● laboratory equipment – To perform blood tests.

Pre-admission tests

It is very important that the team knows a lot about your child and his heart problem before the cath. Doing tests and talking to you are the ways doctors find out as much as possible.

The cardiologist and/or nurse practitioner will get a complete medical history on your child and your family. He or she will also do a physical exam (checkup) to make sure your child is well. This is a good time to ask questions that you may have about your child’s heart problem.

Make a list of any allergies your child has—drugs, tape, latex, etc. It may help if you write out your child’s medical history before you go for this meeting. When under stress, sometimes it is easy to forget things or get mixed up. Since you will have to tell the same thing to several doctors and/or nurses, having it ready for them can help make sure that nothing is left out.

Tell the doctors all you can about your child. Giving them truthful information will promote safety and help the team support your child during the cath. Another helpful thing for you to do is to share what you already know about:

● how your child shows pain

● what has worked to relieve his pain in the past

● what things your child is afraid of (such as, being in the dark, being alone, etc.)

Shortly before (and in a lot of cases the day before) your child’s cath, several tests may be ordered. You can stay with your child during many of these tests. These may include:

● Electrocardiogram (EKG) – For this test, small electrodes (sticky pads) are put on your child’s chest, arms and legs. This gives your child’s doctor facts about your child’s heart rhythm. This test does not hurt and only takes about 10 minutes.

TEE give more details than a surface ECHO might. Your child will be sedated for this procedure and frequently it is done in the cath lab before or during the cath.

● Blood tests – For this test, a sample of blood is taken from your child. Then a lab specialist does tests using the blood sample to know more about what’s going on in your child’s body. This is when your child’s blood type is identified. When the sample of blood is taken, your child will have a needle prick which may hurt for a short time. To draw the blood takes about 3 to 5 minutes.

● Cardiac MRI – uses a powerful magnetic field, radio waves and a computer to take detailed pictures of the heart. MRI's may be used to study the heart defect and plan the cath.

● Chest x-ray – This is a picture of your child’s chest, lungs and heart. It shows the size of the heart and if the lungs are clear.

● Urinalysis – A sample of your child’s urine is collected (asked to pee in a cup) so tests can be done on it. The test is done in a laboratory. A urinalysis test is frequently done on girls age 10 or older.

● Intracardiac echo (ICE) – This type of echo is done using a special catheter that is placed in a blood vessel. Using x-ray, it is guided into the heart and gives specific measurements of the heart defect.

● Exercise stress test – This test lets your doctor see how your child’s heart responds to exercise. Most likely for the test, your child should not have any caffeine for 24 hours before, should not eat or drink for 3 hours before and not take any medicines before. Talk with your child’s doctor about this.

● Lung perfusion scan – This test uses nuclear medicine (a type of dye) to look at how blood flows to both your child’s right and left lung. The test does not hurt, but in this test, medicine is injected through a small vein. Because there is a needle prick, it may hurt for a short time. The test takes about 1 hour.

Getting ready for the heart cath and going home

During the pre-admission testing, you may meet other members of your child’s health care team. At this time the cardiologist or nurse practitioner will also go over:

● what to bring to the hospital

● the time to arrive for your procedure

● feeding instructions before the cath

● the purpose of the cath

● what to do during the cath

● recovery from the cath

● going home

As these instructions are given, fill in the next sections to have a record of what you need to do.

What to bring to the hospital

You won’t have to bring a lot. Hospitals have diapers, gowns, toothbrushes, toothpaste and soap. (The hospital may charge extra for some of these items.) You will want to bring your own formula, unless the hospital has the same brand as yours. This is not the time to try a new brand.

You might bring soft, comfortable pajamas (2-piece is best), slippers, his pillow or any special item that your child likes, such as a stuffed animal or blanket. If he uses a pacifier, bring at least 2 with you. Leave all jewelry at home. It is a good idea to put his name on any personal items you bring.

Bring a phone list of who to contact at home for updates and check-ins. You may want to bring some light reading for you and your child’s favorite book to read to him.

Ask your child’s nurse if there is anything else you should bring with you:

Arriving for your procedure

Time to arrive at the cath lab: _____________________________

Where you need to go:

After your child has been admitted, but before the cath procedure is done, there are some things you need to know and do.

● Sometimes the nurse will give pre-cath sedation medicines in the room to relax your child before going into the cath lab.

● You can use toys, TV, the playroom and games in the walk-around unit to keep him occupied during the pre-cath wait.

● Take his favorite stuffed animal, blanket or pacifier with you to the cath lab—make sure his name is on it.

● Your child will wear hospital pajamas to the cath lab.

● You can walk with or carry your child to the cath lab.

The time before the cath is a stressful time. You may find yourself teary eyed. It is important for you to speak positively and not show your anxiety and fear, especially if your child is old enough to know when you are upset.

Feeding before the cath

Your child needs to go for the cardiac cath with an empty stomach. This is to reduce the chance of him having an upset stomach (vomiting) during the procedure.

He should not have anything to eat for a period of time before the cath. The amount of time depends on his age.

He may be able to have water or clear liquids (such as, apple juice or any juice without pulp) up to 2 hours before the cath. Check with the doctor to make sure this is true for your child.

Ask your doctor or nurse about specific guidelines for your child. Then fill in this section.

I should not feed my child anything for _____ hours before his cath procedure.

Write any questions or instructions you may have here:

Purpose of the cath

Check the box next to the reason for your child’s heart cath:

learn more about my child’s heart problem (see p.24)

valvuloplasty (see p. 25)

implant a coil or plug (see p.26)

do an angioplasty (see p.27)

implant a stent (see p.28)

implant a device (see p.29)

do an electrophysiology study (EPS) (see p.30)

do an electrophysiology study with either radiofrequency ablation or cryoablation (see p.31)

do a heart biopsy (see p.32)

During the cath

This is the most anxious period you may go through. Your child is now totally out of your protection. You need to:

● Know where to wait (in your child’s room or in a designated area) so you can be reached easily. Do not leave the hospital.

● Use this time to call family and friends waiting at home to update them.

● Find a diversion for yourself. Go to the cafeteria or the chapel, watch TV, read or work a crossword puzzle. You don’t want to just pace around.

After the cath is done

If the catheter was put into your child’s neck, he will need to recover for about 2 - 4 hours following the procedure. If the catheter was put into his thigh, he will need to lie flat for about 4 - 6 hours, to help the site heal and to prevent bleeding.

Nurses will care for him during this time. They will check on these often as he recovers:

● temperature

● pulse or heart rate/rhythm (EKG)

● breathing rate

● blood pressure

● the oxygen levels in his blood (a pulse oximeter is used)

Your participation and support are very important. As your child recovers you can expect that:

● He will still be connected to the monitor.

● He will be sleepy from sedation and may wake up fussy and cranky. It helps to talk to him in a soft, calm voice until he is fully awake. Often children receive more sedation medicine to help keep them still.

● The IV will still be in. It may or may not have fluids running through it. It will be removed before he is discharged (sent home).

● There will be some discomfort or pain around the catheter site.

● Pain medicine will be given if he needs it (usually Tylenol is enough to control any discomfort). Use the comfort measures that he is used to (a pacifier, patting him, back rub, etc.).

● He may have a sore, scratchy throat. A popsicle or cold, non-acidic juice can help this.

● If a groin site was used for the cath or if he is still sleepy, a bed pan may be used for peeing and bowel movements.

● Infants and toddlers will have many diaper changes to reduce the risk of infection.

● The dressing will stay on the catheter site for 24 hours and then will be replaced with a band aid. The thigh bandage is bulky and the tape may pinch when he moves or walks. The neck bandage is not as bulky, but the tape will pull when he moves his neck, so he may not want to move it and may hold his head at a funny angle.

● Before he is sent home, your cardiologist may want to run another test (an EKG, a chest x-ray or an ECHO) or do some lab work, to make sure everything is OK.

● As soon as he is awake and able, he will be allowed to drink clear liquids or breast feed. If he does OK, he can resume his regular diet. After "flat time", he can sit up in bed and walk around the room.

● After most diagnostic caths, if he feels well after 4 – 6 hours, he can go home (depending on where the catheter was put in). In some cases, the cardiologist may want a child under 6 months to stay overnight and be released the next morning.

● If an interventional cath was done, he may spend the night in the hospital.

● If he is spending the night, most of the time, one of you can sleep at his bedside.

Tips for Parents

● If your child is an infant or a toddler he may relax and recover with less upset and movement if you hold him and rock him. You can still keep his body positioned correctly.

● Don’t be afraid to help him cope with anxiety and discomfort by cuddling, softly humming, stroking his head or singing his favorite songs to him.

● Ask the nurses for suggestions on how to help your child. They have gained special expertise from watching many families and are happy to share this with you.

At home

If your child has discomfort which is not eased by your usual methods, give him Tylenol, per directions, every 4 – 6 hours as needed. Unless his cardiologist says differently, he can go back to school and his normal activities after one day at home. For about one week, or until the catheter site has healed and a scab has formed, he should not: take a tub bath get in a hot tub go swimming

Check with the doctor to see if it’s ok for him to: play any competitive activities, like football, soccer, etc. do any dancing, gymnastics, bike or scooter riding lift or carry anything climb or jump

It’s OK for him to take a shower. Or, if he is an infant, it’s OK for you to give him a sponge bath. Wash the catheter site each day with warm soapy water. Rinse and dry it well. Until the cath site is healed, change the Band Aid daily or if it gets soiled.

You need to call your cardiologist if he has:

● a fever higher than 101° F (38.3° C)

● redness, swelling, bleeding or drainage from the cath site

● an increase in the size of the bruise around the cath site

● complaints of numbness or tingling in his legs or has pain not relieved by Tylenol

Diagnostic caths

When other tests that have been done do not give your child’s doctor enough information about his problem, this cath may be needed or recommended.

Once the catheters are in place, pressure measurements and oxygen saturation levels are taken in each of the chambers of the heart and in the blood vessels around the heart.

In order to see the heart chambers and blood vessels, x-ray dye (contrast) is injected through the catheter, filling part of the heart. This is recorded on x-ray film (angiogram) and can be viewed later.

This cath lets the doctor see what’s going on in and around your child’s heart. It will help him or her know more about your child’s heart problem. It takes about 2 hours.

NOTE:

The diagnostic cath may be the “planned” procedure, but results of it and/or what’s found during the planned cath may require immediate talks with you to allow the next step or “interventional” cath procedure. An Interventional cath usually requires at least 1 overnight stay, so you need to make sure that the “at home family” has overnight care plans, just in case.

dye

catheter catheter

Interventional caths

These cath procedures are done to fix problems. Many heart defects which once required surgery, can now be fixed with catheters. For other, more complicated heart problems, catheter treatments are often done in addition to surgery.

As a rule, the cardiologist does the diagnostic part of the cath first, then the intervention. The main catheter interventions are:

Valvuloplasty

This procedure uses a balloon catheter to open a narrowed heart valve. The valves that are most often dilated (opened) are the pulmonary, aortic and mitral valves.

A catheter that holds the balloon is inserted and moved along until it gets to the narrowing at the valve. The balloon is inflated to stretch the valve open. Then it is deflated. It may need to be inflated and deflated a number of times to stretch the narrow part of the valve. Once the valve is opened, the balloon catheter is removed and diagnostic measurements are repeated. The procedure takes about 3 hours.

Occlusion devices

This procedure places a coil or a plug in an unwanted blood vessel to close it. (The device is made out of stainless steel with micro fibers, so the body does not reject it.) Once the catheter is in place, the device is put into the back of the catheter, pushed through and out into the blood vessel to be closed. Once the device is in place, the catheters are removed. This procedure takes about 2 hours.

An occlusion device may be used to close up a:

● patent ductus arteriosus (All babies are born with this extra blood vessel. Normally it closes early after birth. When it fails to close on its own, it can be closed with a coil or plug.)

● collateral blood vessel (This is an extra blood vessel that may occur in complicated heart defects. It often needs to be closed.)

● surgically placed shunt (A tube put in during surgery as a temporary step.)

Patent Ductus Arteriosus catheter plug catheter

Angioplasty

This procedure is often called balloon dilation. This is because a balloon is used to open a blood vessel that is too narrow. Some types of heart defects in which vessels may be too narrow are:

● coarctation of the aorta

● pulmonary artery stenosis

● surgically placed conduits

First, the narrowing is measured. Then, a special catheter that holds a balloon at its tip is moved along until it gets to the narrow part.

The balloon is put in the narrow part of the blood vessel and inflated. This stretches the blood vessel lining. The balloon is then deflated. It may need to be inflated and deflated a number of times to stretch the blood vessel out to where it needs to be. After the dilation, another angiogram is taken to look at the results. This procedure takes about 3 hours.

Angioplasty with stent implanted

Sometimes along with balloon angioplasty, a stent is needed. A stent may be used when a blood vessel or a surgically placed conduit does not stay stretched out, or the blood vessel is narrow as a result of being kinked. The stent is made out of a wire mesh so the body does not reject it.

The stent is crimped on the deflated balloon. If a stent is needed to prop open a conduit, it also has a valve sewn in place at the end. The balloon catheter is then threaded into the body to the narrowing. The balloon is inflated. This expands the stent (and puts the valve in the conduit). The balloon is then deflated and removed, leaving the stent in place to hold the blood vessel open or to keep the conduit open from the inside. This procedure takes about 3-4 hours.

Coarctation of the Aorta Conduit Stenosis

Device closure

This procedure is used to implant a device to close a hole between two chambers of the heart. It can close atrial septal defects (hole between top two chambers), ventricular septal defects (hole between bottom two chambers) and for other complex congenital heart defects. There are different types of devices. Some look like tiny umbrellas and others look more like plugs.

Once the catheter is in place, the device is inserted into another catheter and moved along until it gets to the hole that needs to be closed. The device is put into the hole and opened. The position of the device is checked, and then it is released from the catheter. Both catheters are then removed. The device stays in the heart to keep the hole closed. This procedure takes 3-4 hours.

Atrial Septal Defect

closure device catheter

In some cases, your cardiologist does a TEE test (see page 10) to take pictures of the heart and to measure the size of the defect. This test may also be used to help the doctor know exactly where to put the device.

hole between chambers

Electrophysiology study (EPS)

This heart cath is done to study your child’s heart rhythm. It looks at the type and rate of the heart rhythm to identify where the arrhythmia abnormal rhythm) comes from. This procedure takes about 3 hours.

A special kind of catheter called an electrode catheter is inserted and moved along until it gets into your child’s heart. It is positioned (placed) inside his heart along the conduction (electrical or rhythm) system of the heart. One or more of these electrode catheters may be used. If more than 1 catheter is used, more than 1 blood vessel is entered. That is, one catheter may be inserted in the leg and one may be inserted in the neck.

Your child’s rhythm is studied and based on what is learned, medicine may be started. If this happens, your child will spend 1 or 2 nights in the hospital while the medicine is started. Then he is discharged and sent home.

The cardiologist will see him for follow-up visits on a routine basis. conduction system

catheters

Electrophysiology study with either radiofrequency ablation or cryoblation

When the EPS portion of the procedure has found the source of the abnormal rhythm, the ablation portion is used to get rid of the source. The doctor may use either radiofrequency ablation (heat) or cryoblation (freezing) to correct the problem.

The tip of the catheter is placed on the part of the heart’s conduction system that contains the abnormal rhythm. The ablation stops the path of the abnormal rhythm so it can no longer travel through that area. This procedure takes about 4–8 hours.

If the abnormal rhythm is on the left side of the heart, the doctor may make a small hole in the wall between the top two chambers so that the catheter can go through to the left side to do the ablation. This is called the Brockenbraugh procedure.

conduction system

catheters

Heart biopsy

In this procedure the catheter is inserted in the neck or thigh area. Once the catheter is moved along into the heart, small pieces of muscle from the right ventricle (lower right chamber) are removed. These are then sent to the lab to be examined under a microscope. This is done to find out why the heart is not working well or after heart transplant, to rule out rejection.

It takes about 1 – 2 hours. The results of the biopsy will be given to you in a few days.

device to take tissue sample right ventricle

catheter

About the author:

Kerri Lombardi, RN, MSN, CRNP, MJ

Pediatric Nurse Practitioner

Cardiac Center

Children’s Hospital of Philadelphia

Reviewers:

Sharna Basu, CRNP

Cardiac Center

Children's Hospital of Philadelphia

Special thanks to reviewers of previous editons:

Jack Rome, MD Director, Cardiac Cath Lab

Children’s Hospital of Philadelphia

Christie Rohner, CPNP

Pediatric Nurse Practitioner, Cardiac Center

Children’s Hospital of Philadelphia

Kimberly Montoya, RN, BSN

Pediatric Cardiovascular Nurse

Rocky Mountain Pediatric Cardiology, PC Denver, CO

Judith and Timothy Dunn

Parents of Rachel, a child with a heart defect

Haddon Heights, NJ

1-800-241-4925

We believe that you have the right to know as much as you can about your health. Our goal is to give you enough facts to get the main points clearly in mind. We do this with medical accuracy, warmth and humor. The result for you: less tension, more healing and a good idea of what to ask your doctor, nurse or others.