FALL 2013 • WINTER 2014
Curing the curve
in severe scoliosis
IWK surgeon pioneers low-radiation technology for scoliosis patients
Genetic Mysteries 12
Researchers at the IWK look into rare genetic diseases, finding solutions and helping children.
Izaak Fall 2013.indd 1
Child Life Television 36
Young patients take their turn in the director’s chair, creating shows that are entertaining and help them cope.
13-11-19 2:29 PM
COMMUNITY ROOTS
Stewart McKelvey is pleased to support Izaak Magazine in its endeavour to share the inspiring stories of the many people, patients and projects the IWK Health Centre has helped through its unparalleled provision of care and comfort.
CHARLOTTETOWN
Izaak Fall 2013.indd 2
FREDERICTON
HALIFAX
MONCTON
SAINT JOHN
ST. JOHN’S
STEWARTMCKELVEY.COM
13-11-19 2:29 PM
FALL 2013 • WINTER 2014
Cover Story 16
CURING THE CURVE IN SEVERE SCOLIOSIS Kids with severe scoliosis often undergo numerous surgeries to correct the curve in their spine — with this comes plenty of X-rays. Dr. Ron El-Hawary, head of orthopaedic surgery at the IWK Health Centre, is working on a high-tech system that reduces kids’ exposure to radiation while ensuring the stability of their spine. By Melanie Jollymore
Features HEALING HANDS 22
LIFEBLOOD 26
By Lindsey Bunin
The IWK helps Maritime mothers and babies with rare, life-saving in-utero blood transfusions.
IWK nurses share their expertise and push the limits to improve burn treatment across the country.
By Denise Surette
TAKING CONTROL 32
CHILD LIFE TELEVISION 36
By Lezlie Lowe
By Debra Wells-Hopey
The IWK’s CAPA program allows patients and families to take control of their mental health faster than ever before.
Putting young patients in the director’s chair.
Research
Profiles
08 Weighing in
42 Change makers
Researchers explore root causes and long-term impacts of Nova Scotia’s obesity epidemic.
12 Genetic Mysteries Rare diseases spark a research group like no other.
14 By the numbers A glimpse at the research excellence at the IWK.
Technology 20 An inventor in our midst Dr. Scott Farrell, physician and inventor, finds a way for women to get their active lives back with the Uresta pessary.
Izaak Fall 2013.indd 3
Three remarkable young people and former IWK patients use their experiences to better the world.
46 Care across the globe Dr. Doug McMillan travels to India to share his expertise to help women and children.
Q&A: Getting to know the IWK 48 In-flight critical care The IWK’s Life Flight Team speaks to Izaak magazine about taking their skills to the sky.
13-11-19 2:29 PM
Celebrating a new chapter for Izaak Welcome to the third edition of Izaak and our first digital edition, as we celebrate the commitment and care that makes the IWK Health Centre a place of hope and healing. On November 15, Canada celebrated National Philanthropy Day —
4
a day set aside each year to recognize and thank Canadians who generously donate to institutions and organizations, like the IWK, in order to improve the lives of countless people. Having been a patient at the IWK, I understand the importance of this type of support. My life changed at the age of 12 when I was diagnosed with Crohn’s Disease, and as a result of my condition, I have experienced several lengthy stays at the health centre. As such, it is an honour for me to invite you to explore the IWK through Izaak. In this edition, the IWK Foundation, the IWK Health Centre, and The Chronicle Herald partner once again to bring you stories that showcase how amazing the IWK is, not only to people like me who have had personal experiences, but to thousands of others who care about the work of the IWK both locally, and around the world. This issue of Izaak continues to recognize the diligence and talent of world-renowned experts who provide exceptional care to our region’s patients and families, and conduct research that is changing lives. Personally, as a volunteer at the IWK working with young people, I was interested in the story on Child Life TV — a spectacular program that allows patients to produce and participate in their own mini TV shows. Other stories you will find in this issue are unique and timely, like the one about rare diseases, the piece about the challenges with obesity, and an update on the incredible new mental health programming that is making a real difference to our community. Several of these stories — like my own — portray the women, children and families for whom the IWK has become a place of hope and healing. I’m also very excited to announce an Izaak first — this issue is now available on the Apple iPad! Simply visit the Apple App Store or Google play and download the free Izaak app. You can read the full magazine as well as enjoy exciting extras, like videos and additional information, unique to the iPad version. On behalf of IWK patients and families, thank you for your loyal and generous support of the IWK Foundation. Thanks to your strong community support, the IWK will continue to provide the care that Atlantic Canada has grown to know and honour as the best in the world. Aren’t we lucky?
IWK Health Centre 5850/5980 University Avenue Halifax, N.S. B3K 6R8 iwkfoundation.org
The IWK Health Centre is the region’s leading health centre providing specialized, quality care to thousands of women, children, youth and families in the Maritimes and beyond. The mandate of Izaak is to uncover and showcase the world-class care and research of the IWK so all stakeholders know and are proud to speak of the IWK as a national leader in health care excellence. Izaak will highlight the unique and critical role the IWK plays in the Maritimes and the importance of philanthropy to continue this mission. Published by Herald Custom and Community Publishing Department Chairman and Publisher: Sarah Dennis President and CEO: Mark Lever Director, Custom and Community Publishing: Jeff Nearing Editor and Project Manager: Denise Surette Director, Design: Jayson Taylor Creative Lead: Brian Graham Graphic Designer: Julia Webb Director Sales: Nancy Cook Account Executive: Annie Langley Contributors: Lindsey Bunin, Melanie Jollymore, Jon Tattrie, Tom Mason, Lezlie Lowe, Debra Wells-Hopey, Jane Doucet, Denise Surette Photographers: Scott Munn, John Sherlock, Christian Laforce, Joe Robichaud, Devaan Ingram, 123RF © The Chronicle Herald 2013 All rights reserved. No part of this book may be reproduced, stored in retrieval systems or transmitted in any form or by any means without prior written permission from the publisher. The Chronicle Herald 2717 Joseph Howe Drive PO Box 610, Halifax, N.S., B3J 2T2 902-426-2811 TheChronicleHerald.ca Printed by: Advocate Printing
Jacqueline Wigle Jacqueline is a member of the IWK Youth Advisory Council and a former IWK patient.
Izaak Fall 2013 - Winter 2014
Izaak Fall 2013.indd 4
13-11-19 2:29 PM
Izaak Fall 2013.indd 5
13-11-19 2:30 PM
w
nn
rlo
Wy
ne
Eric
hu Sabrina T
E r i c Wy n
e
LEZLIE LOWE
JON TATTRIE
Lezlie Lowe is a Halifax-based freelance journalist and part-time professor of journalism at the University of King’s College, teaching feature writing and narrative non-fiction. Lezlie has twice won gold for feature writing at the Atlantic Journalism Awards.
Jon Tattrie is a freelance writer based in Halifax. He has won three Atlantic Journalism Awards for feature writing. He is the author of three books: Black Snow, a novel of the Halifax Explosion, The Hermit of Africville, and Cornwallis: The Violent Birth of Halifax.
DEBRA WELLS-HOPEY Debra Wells-Hopey is a writer, presenter and public relations instructor. Debra has written for publications as diverse as The British Financial Times to The Maritime Water and Waste Water Report and is a regular columnist for The Chronicle Herald.
JANE DOUCET
LINDSEY BUNIN
Jane Doucet is a Halifaxbased health and medical writer. Her articles have appeared in the Canadian Medical Association Journal, Canadian Health and CrossCurrents, as well as in many other publications.
Lindsey Bunin is a custom content editor and blogger for The Chronicle Herald. When she isn’t putting pen to paper, she is a busy mum living in the suburbs with her husband and two sons.
Contributors
6
Behind the scenes of Izaak, our contributors immerse themselves in the lives of those featured in the stories at the IWK Health Centre. This labour of love allows the stories and pictures of patients, families and the world-class health care professionals to be brought to life for our readers.
Ma
Jo h n
rv
c
Scott Munn is a photographer whose pictures have been featured in The Toronto Star, Globe and Mail and has had five books published. When he’s not travelling, he is walking his dog and hanging with friends.
MELANIE JOLLYMORE Melanie Jollymore is a freelance writer and communications consultant specializing in medical research, health care and higher education. Her passions outside work include her family and community, yoga, cooking, reading and surfing.
or
o
lo
SCOTT MUNN
M
er
in
Sh k
e
JOHN SHERLOCK TOM MASON John is a commercial photographer in Halifax. Photographs for his commercial clients have helped win many awards — from Atlantic Canada’s ICE Awards to the New York Festivals’ Gold Medal. He has also received Canada Council funding for his documentary work.
Tom Mason has always had a fascination for science and technology. His stories about business, technology trends, travel, energy and current events have been published in more than three dozen magazines and newspapers in the last two decades.
CHRISTIAN LAFORCE
Christian has been a staff photographer at The Chronicle Herald in Halifax for nearly ten years, covering stories close to home and as far away as Afghanistan. He is the recipient of several regional and national awards for his work.
Izaak Fall 2013 - Winter 2014
Izaak Fall 2013.indd 6
13-11-19 2:30 PM
Experience Izaak... in a whole new way Introducing our fully interactive mobile app for Izaak magazine Enjoy
Read all the amazing stories you love from your mobile device, plus much more.
Izaak Fall 2013.indd 7
More
Enjoy additional content from inside the IWK Health Centre – extra photos, videos and audio.
Free
The app is available for free and is compatible with iPhone, iPad, iPod touch and android phones through iTunes Newsstand and Google play.
13-11-19 2:30 PM
Research
Weighing in Obesity rates are reaching epidemic proportions: IWK researchers explore root causes and impacts
8
Photo: Cathy Yeulet/123RF
It’s all around us. As we go about our daily lives, we see colourfully packaged sugar-, salt- and fat-laden foods everywhere we turn. Fresh, nutritious foods are much harder to spot and, when we do find them, the prices can often be hard to swallow. STORY Melanie Jollymore
See more with the Izaak app available for free through iTunes Newsstand or Google play Izaak Fall 2013 - Winter 2014
Izaak Fall 2013.indd 8
13-11-19 2:30 PM
Excess weight poses risks for kids, now and later
The wellbeing of this young generation depends on a sea change in lifestyles. Dr. Stefan Kuhle, a leading epidemiologist who recently joined the IWK, is working with Dr. Kirk to analyze the student data. They are tracking the impact of being overweight on children’s health — in childhood and as they get older — by linking the 2003 children’s health data to medical records. “We’ve found that overweight and obese children in Nova Scotia are much more likely than their healthyweight peers to have asthma, mood and behaviour disorders, middle ear infections and other health problems,” says Dr. Kuhle. “They take more prescription medications, see their doctors more, and have to go to the hospital more often as well.” Dr. Kuhle has also found that overweight and obese children have higher markers of disease in their blood compared to their healthy-weight peers. “It’s a big
Izaak Fall 2013.indd 9
concern to see elevated levels in such young children, because these markers have been linked to many serious problems, including heart disease, cancer and diseases of the nervous system,” says Dr. Kuhle. With help from graduate students in the Perinatal Epidemiology Research Unit (PERU) at the IWK, Dr. Kuhle is piecing together a long-term picture of Nova Scotia’s health prognosis. “We’re looking 30 and 40 years out, using computer modelling to see what will happen if obesity rates continue to rise as they have been,” he says. “What will be the burden of illness and how much will this cost our health system and society?” It’s not a happy picture, but it’s a vital one to draw so the public and policymakers can see what will happen tomorrow if nothing changes today. “We need to invest in population-level prevention efforts,” says Dr. Kuhle. “And our focus can’t just be on children and schools — it has to include families and communities.”
© Jackie Cooper
T
he fact is, high-calorie, low-nutrient foods are often cheaper than healthier options. According to Dr. Sara Kirk, our very environment supports weight gain and unhealthy choices. “Lack of accessible recreation facilities, unsafe neighbourhoods and communities that are structured so it’s easier to get around by car than by bike, foot or public transit, are other aspects of the environment that make it easier to gain weight than to lose it,” she says. A former dietitian from the UK who is now a health policy and promotion researcher, Dr. Kirk is one of an influential, nationally recognized group of researchers at the IWK Health Centre and Dalhousie University who are probing the roots of the obesity epidemic in Nova Scotia — with a particular emphasis on childhood obesity and its impact on the long-term health of our population. “Our data shows that more than a third of the grade 5 children in Nova Scotia were overweight or obese in 2011,” says Dr. Kirk. She is a lead researcher on the Children’s Lifestyle and School Performance Study (CLASS II), which surveyed more than 5,000 grade 5 students all across the province in 2011 about their food intake, activity levels, sleep, and school performance. She and her colleagues are still analyzing the data and comparing the results to a similar survey of 5,000 grade 5s conducted in 2003 (CLASS I). “We’ve found that the quality of the children’s diets has improved and that they’re drinking fewer sugar-sweetened beverages, thanks in large part to the provincial food and nutrition policy launched in 2006,” notes Dr. Kirk. “Even so, the rates of overweight have not fallen since 2003 and the rates of obesity have risen slightly. This tells us that school-based food policies, while extremely important, are only part of the solution. We need policies and programs that support a much broader cultural shift — in schools, families and communities — to healthier foods and more physical activity as a way of life.”
Prevention begins with mothers’ pre-pregnancy health As often turns out to be the case, mothers have the greatest influence on the health of their children — but not just in terms of what they feed them. As Dr. Kuhle’s research with PERU colleague Dr. Christy Woolcott reveals, mom’s influence on her children’s future weight begins before she even becomes pregnant. They’ve learned this by linking the 2003 children’s health data to pregnancy and childbirth data collected in the Nova Scotia Atlee Perinatal Database. “Our analysis shows that children of obese mothers are four times more likely to become obese than children of healthy-weight mothers,” Dr. Kuhle explains. “Given that one-fifth of Nova Scotia women meet the criteria for obesity when they enter pregnancy, we can see the urgent need for strategies to encourage women to reach a healthier weight before they conceive.” It’s also vital for women to be made more aware of national guidelines for weight gain in pregnancy, which call for minimal gain if the woman is obese at the beginning of her pregnancy. According to Dr. Woolcott, the guidelines need to be better communicated so women understand how much they should gain at each stage of their pregnancy, not just by the end of it, in order to avoid overshooting their target. “Nearly 60 per cent of women in Nova Scotia are gaining more weight during pregnancy than the guidelines recommend,” Dr. Woolcott says. “And we’re finding that many are not losing the weight after pregnancy, so they’re accumulating excess weight from pregnancy to pregnancy.” Dr. Woolcott wants to know what impact this has on women’s future health. She and her colleagues are linking pregnancy data to women’s health data being collected through the Atlantic PATH study, a massive population health study led by Dr. Louise Parker. “We’re looking for possible links between pregnancy factors, such as weight gain, gestational diabetes and multiple births, and the later development of obesity, cardiovascular disease, type 2 diabetes and other
PHOTOS 9
Top: Dr. Sara Kirk, researcher with the IWK Health Centre and Dalhousie University. Bottom: Dr. Stefan Kuhle, epidemiologist at the IWK Health Centre and Dalhousie University.
x2
In Canada, the number of children who are overweight or obese has doubled in the past 20 years. In Nova Scotia, childhood obesity rates are rising faster than in other provinces.
58%
of women in Nova Scotia exceed the recommended guidelines for weight gain in pregnancy.
13-11-19 2:30 PM
10
chronic diseases,” Dr. Woolcott explains. “We want to know how much excessive weight gain in pregnancy increases these long-term risks.” Long-term risks are not the only concern. Obesity in pregnancy poses many risks to mother and baby in the here and now. “The number of overweight and obese mothers has nearly doubled in the past 20 years — as a result we’re seeing more gestational diabetes, pregnancy-related high blood pressure and other complications in our prenatal clinics,” says Dr. Anthony Armson, head of the Department of Obstetrics and Gynecology at the IWK Health Centre and Dalhousie Medical School. “We also find it more difficult to monitor fetal anatomy, growth and wellbeing in obese women, and we’re seeing more pre-term births, more complicated labours, and more need for intervention to safely deliver the babies. It all translates into higher risk for both mother and child.”
A complex problem demands a multi-faceted approach At the IWK, experts from many different fields are exploring issues surrounding mother and child obesity and working on possible solutions. “It’s a complex problem that demands a multi-faceted approach,” notes Dr. Armson. “Our goal is to find the best ways to intervene early, to change the environment to offer the best chance for the healthy development of future generations.” ‘Environment’ is a broad term that in this case includes the conditions inside the womb. Here, the growing fetus is exposed to hormones, chemicals and
other factors that may ‘turn on’ genetic switches that will make it difficult for that child to maintain a healthy weight throughout his or her life. It also includes the larger environment that we all inhabit, and a mindset in society and the health care system that still lays the blame at the feet of individuals. “There are so many factors that are beyond the scope of the individual — from the high cost of healthy foods and high pressures on families for time, to a culture that celebrates and rewards with excessive consumption of unhealthy foods,” notes Dr. Sara Kirk. “We have a collective problem with weight, so why do we continue to blame individuals? When our entire society is set up to make the unhealthy choice the easiest choice, how can one person, who may already be struggling, swim against that tide?” It will take the concentrated efforts of many agencies, organizations, professionals, citizens, leaders and families, all swimming together, to turn that tide. But the IWK researchers are confident it can be done. In fact, they’re actively involved in a wide range of initiatives that they and many partners hope will begin the necessary shift back to healthier weights for Nova Scotians and Maritimers of all ages.
Photo: Scott Munn
Photo: Scott Munn
PHOTOS Top: Dr. Christy Woolcott, epidemiologist at the IWK Health Centre and Dalhousie University. Bottom: Dr. Anthony Armson, head of the Department of Obstetrics and Gynecology at the IWK Health Centre and Dalhousie Medical School.
Izaak Fall 2013 - Winter 2014
Izaak Fall 2013.indd 10
13-11-19 2:30 PM
Turning the tide to healthier weights
IWK researchers and leaders are contributing to an array of projects and policies that aim to improve the prevention and management of unhealthy weights and weight-related chronic disease in our communities. These include: Let’s THRIVE!: IWK researchers and leaders are actively supporting THRIVE!, Nova Scotia’s comprehensive strategy for creating a culture and environment that makes healthy eating and physical activity easier and more accessible for Nova Scotians. Halifax is Stepping Up: The IWK is a key partner in Stepping Up, the Halifax Regional Municipality’s evidence-based plan for creating an environment and opportunities that help citizens be more physically active — whether through an enhanced network of bike lanes and trails, programs that keep kids active after school, or new community-based fitness programs for girls. Other partners are HRM, Capital Health, Heart & Stroke Foundation (NS), Dalhousie University, Halifax Regional School Board and the N.S. Department of Health and Wellness. Making TIME for good food: The TIME study (tools, information, motivation, environment) is developing and testing a smart phone app to help busy families identify and overcome the barriers that stand in the way of eating healthy foods. Kids and teens get cooking!: The IWK is helping young people learn how to prepare healthy foods in fun, hands-on school- and community-based cooking classes. Positive responses from kids so far show they value the knowledge and skills they are gaining. Creating a healthy-school culture: IWK researchers are examining health-promoting school initiatives across Nova Scotia to identify what factors support or hinder schools in their efforts to create strong health-promoting environments. They’re also assessing the impact of health-promoting school culture on children’s health behaviours and overall wellbeing. Balancing the Scales: This eye-opening live performance for health professionals and students shows how our system fails
Izaak Fall 2013.indd 11
to support people living with unhealthy weight — and how overcoming stigma and adopting evidence-based approaches to discussing weight-related health issues will enable care providers to better help their patients manage their weight. Balancing the Scales is presented by a team of IWK, Capital Health and Dalhousie University researchers, with funding from the Nova Scotia Health Research Foundation. Managing obesity in primary care: Family medicine researchers at the IWK and Dalhousie Medical School are developing new approaches to help family physicians more effectively address weight-related health concerns with their patients and better support them in reaching and maintaining healthier weights. Get FABulous!: The FAB program (Fit After Birth) partners with Sobeys to offer free classes in nutrition, meal planning and food preparation to help new moms in HRM lose extra weight from pregnancy and get their kids off to a healthy start. Tap the Tap: While IWK researchers have found that grade 5 children now drink fewer sugar-sweetened beverages than they did in 2003, they are still consuming more calories from these drinks than they should. Tap the Tap encourages families with pre-school children to quench their thirst with the healthiest, least expensive and most readily available, environmentally friendly beverage — tap water! Family health and wellness camps: IWK researchers and staff are involved in planning a pilot of a weekend family health and wellness camp to be staged at Brigadoon in the Annapolis Valley. They hope that by providing families with tools, information and motivation, the camp will give families the support they need to develop healthier lifestyle habits.
x4
Children of overweight or obese mothers are 4 times more likely to become overweight or obese than children of healthy-weight mothers.
46%
11
of women in Nova Scotia were overweight or obese at the beginning of their pregnancies in 2011. IWK researchers estimate this percentage has nearly doubled since 1990.
33.5% of grade 5 students in Nova Scotia are overweight or obese.
In 15 Years... If current trends continue, in 15 years more Canadians will be overweight or obese than a healthy weight.
13-11-19 2:30 PM
Research
Genetic Myste Studying the effects of orphan diseases, researchers at the IWK look into genetic mysteries and help children with some of the rarest diseases
12
PHOTO L-R: Christine Gentleman, her sons Matthew and Nicholas, both have FEVR. STORY Jane Doucet | PHOTOS John Sherlock
T
hree months after Christine and Tim Gentleman’s eldest son, Nicholas, was born in Halifax 11 years ago, they were stunned to learn that he had an eye condition causing vision impairment called FEVR, which stands for Familial Exudative Vitreoretinopathy. “Tim and I didn’t know of any eye problems in our families, so we were shocked,” says Christine. When his pediatrician noticed something odd in his eye reflexes during a routine exam, Nicholas was referred to specialists. Eventually the Gentlemans saw Dr. Johane Robitaille, a pediatric ophthalmologist at
the IWK Health Centre, who delivered the diagnosis after conducting genetic testing. Dr. Robitaille specializes in inherited genetic disorders and is known internationally for her contributions to the genetics of FEVR and related disorders; in 2002, her team helped identify the FEVR gene. Today Nicholas sees very little, but he attends a regular public school, reads text in large print and wears glasses to help protect his eyes because his retinas are unstable. Since the Gentlemans don’t know how his FEVR will progress as he ages, he’s also learning braille. “Nicholas has one good spot of vision in his right retina, and he has learned how to adapt to not having perfect eyesight,” says Christine. “He rides a bike, sails and
plays basketball. Nothing stops him.” FEVR is one of roughly 7,000 rare or ‘orphan’ diseases in the world that small but dedicated teams of researchers are investigating globally. About two million Canadians, or one in every 12, are born with an orphan disease. “Most of these diseases are inherited, and many affect children,” says Dr. Christopher McMaster, a professor in the departments of Pharmacology and Pediatrics at Dalhousie Medical School and a senior researcher at the IWK. “Ninety per cent of orphan diseases have no treatment, and 95 per cent have no cure. The mortality rate of some orphan diseases is high. Gene discovery for inherited rare diseases results in both an immediate DNA diagnostic for the local population, along with more precise genetic counselling, and it provides the first and necessary step toward understanding how the disease is caused to allow for research toward therapies to be pursued.” Researchers at the IWK, Dalhousie Medical School and Capital Health are in the second of a three-year, $4.9 million Genome Canada-funded project called IGNITE (Orphan Diseases: Identifying Genes and Novel Therapies to Enhance Treatment). The goal is to develop a better understanding of orphan diseases and new diagnostics, treatments and policies. The research will be conducted in the Maritimes, which has some of the world’s highest rates of several orphan diseases, including Niemann-Pick Type D and Fabry disease, metabolic disorders that cause fatty substances to build up in the body and damage major organs. Such a concentrated cluster of diseases is called a “founder effect;” it occurs because ancestors who moved to an area centuries ago unknowingly carried the genes for certain diseases, then passed them on to future generations. “Very few research groups in the world are working to solve the problem of orphan diseases,” says Dr. McMaster, IGNITE’s project leader. “But it’s important that we do. Even though these diseases are rare, to the families who receive a diagnosis, it can be just as devastating as learning their child has a more well-known disease like cancer.” One important area the IGNITE team is studying is the ethical issues that arise when
Izaak Fall 2013 - Winter 2014
Izaak Fall 2013.indd 12
13-11-19 2:30 PM
teries
Rare diseases spark a research group like no other
Contributed
Tackling metabolic orphan diseases
PHOTO Dr. Johane Robitaille, pediatric ophthalmologist at the IWK Health Centre.
PHOTO RetCam image of a patient’s eye.
conducting genetic research with children. For example, if a child is tested for a rare eye disorder and the genetic research also reveals that she has a breast cancer gene, should researchers share that information? “We’re looking at what is the responsibility and implication for sharing that information to the child and beyond to any siblings and family members,” says Dr. Conrad Fernandez, IGNITE’s co-leader and the head of the Division of Pediatric Hematology/Oncology at the IWK and Dalhousie. “If sharing of results is to occur, we also need to decide which health care provider should convey the research information, how long their obligation to do so lasts, and how it should be conveyed. It’s important to remember that research findings are different than clinical findings. While researchers are careful, research labs don’t have the same types of quality assurance that a clinical lab would have; we are often uncertain exactly what a gene discovery might mean for an individual or what to do about it.” In a written survey and one-on-one interviews, the IGNITE team asked more than 500 participants whether or not they would want results discovered in a research context disclosed. “Most participants told us they would like to be informed of all genes that were predicted to have a significant medical impact and for which treatment or prevention was available, but not everyone wanted to know,” says Dr. Fernandez. But isn’t information power? “That’s true most of the time, but we often don’t know the future implications of a gene we’re discovering.
Some people don’t want to change how they live their life or worry about something when they’re young that they might or might not get when they’re a senior.” Tim and Christine Gentleman faced a difficult dilemma when they decided they wanted to have another baby. They discussed doing so with Dr. Robitaille, who told them there was a 50 per cent chance their second child would also have FEVR. When their son Matthew was born, Dr. Robitaille examined him immediately, then again every couple of days. “Within a week of his birth, she had diagnosed him with FEVR,” says Christine. Now eight, Matthew has poor vision in his left eye but very good sight in the right. He too wears glasses, and the brothers help each other when one needs an extra hand. “It’s hard not to be overprotective and not worry about the future,” says Christine. “But there are so many kids with worse problems, and Dr. Robitaille has been a wonderful support.” Older brother Nicholas sees her once a year for a checkup, while Matthew visits her every six months. Dr. Robitaille has been studying FEVR since 1998. In an IGNITE-related project, she’s working with 75 families, extracting DNA and looking for new genes that contribute to eye disease, as well as working with Dr. McMaster on treatments. “I want to get results as fast as possible,” she says. “We will continue to search for better treatments to prevent the blinding complications of FEVR and other conditions that share similar features to FEVR.”
Izaak Fall 2013.indd 13
IGNITE researchers are looking for treatments for two inherited deseases that affect many families in NS: Niemann-Pick and Fabry disease. Niemann-Pick is a group of diseases in which fatty substances called lipids collect in the cells of the spleen, liver and brain. There are four commonly recognized forms: Types A, B, C and D. Each type involves different organs, may involve the nervous system and breathing, and can occur at different times throughout life. Type D is relatively common in French-Acadians in southwestern Nova Scotia. Fabry disease is difficult to diagnose; for many patients, the earliest and most challenging symptom is pain. There can be pain in the hands and feet, as well as throughout the body. These episodes can be brought on by weather changes such as extreme humidity or high temperatures, as well as stress and fatigue.
13
Timely and accurate diagnosis A survey in the late 1980s for the National Commission on Orphan Diseases found that of the 801 patients who reported, approximately one third said that obtaining a diagnosis took from one to five years. One out of seven in this group said it took more than six years. In another European study, 40 per cent of 8,000 patients with orphan diseases had a first diagnosis that was incorrect, and 25 per cent reported waiting between five and 30 years for a correct diagnosis. Early diagnosis is key to treating these diseases effectively. Source: National Center for Biotechnology Information
13-11-19 2:30 PM
Research
NUMBERS IWK research by the numbers 2012-2013
The IWK is more than a hospital for women and children. It is also home to teams of worldrenowned researchers who study a wide range of diseases, conditions and ways to make not only the women and children in our region healthier, but people across the globe. There is a lot of research happening at the IWK — but how much is a lot?
650
14
research projects
There are 650 research projects are underway, right now, at the IWK. Many of these are clinical studies involving hundreds of patients and families. Others are scientific experiments in laboratories, while still others are examining health records and databases to learn how health, and health care, can be improved.
295
publications
IWK researchers published 283 journal articles, 11 book chapters and one book in 2012-2013. Over the past five years, they’ve shared their research findings in more than 1,500 peer-reviewed publications.
$15m
in research grants
IWK researchers received $15 million in grants last year — $13.6 million from sources outside the IWK. The researchers are using the funds to find answers to today’s most pressing questions in women’s and children’s health.
$1.4m
from the IWK Foundation The IWK Foundation gives $1.4 million to research at the IWK every year — thanks to the incredible generosity of people who give to the IWK Telethon and other events.
See more with the Izaak app available for free through iTunes Newsstand or Google play
64,000
sq. ft.
of dedicated research space In addition to the clinic areas where a great deal of research takes place in the course of providing patient care, the IWK has developed 64,000 square feet of dedicated research space.
775
research and support staff
The IWK’s 330 affiliated researchers are running their studies with the help of 445 research support staff and learners. IWK Research Services staff provided 800 consultations to local researchers last year, to help them design and conduct the most effective studies possible.
1,086
research ethics reviews The IWK Research Ethics Board meticulously reviewed 1,086 submissions last year to ensure that all research involving humans is conducted to the highest ethical standards. They granted 139 new research ethics approvals, 520 ethics renewals, and asked for changes to 427 proposed research protocols.
$76m
in outside funding
Over the past five years, IWK researchers have secured a total of $76 million in funding from sources outside the IWK. These include federal and provincial granting agencies, charitable and disease-specific organizations, private companies and Dalhousie University.
Izaak Fall 2013 - Winter 2014
Izaak Fall 2013.indd 14
13-11-19 2:30 PM
Support from the IWK and its donors helps young scientists start their research programs from the ground up, and also helps recruit top researchers to the Maritimes to establish programs here. The IWK Foundation, Dalhousie University and other local agencies provide crucial matching funds to bring thousands — sometimes millions — of dollars to the region, creating jobs and solving important health problems.
Meet some of our up-and-coming researchers: Dr. Aimée Coulombe SLEEP RESEARCHER
$4,000 One-time early career funding from the IWK Foundation
Dr. Aimée Coulombe, a postdoctoral research fellow in psychology at Dalhousie University, wants to help kids get a good night’s sleep. A grant from the IWK is helping her learn how health professionals can best be trained and supported to provide effective treatments
to children with sleep problems. She and her supervisor, Dr. Penny Corkum, will use the findings from this study to develop training materials and resources for health professionals. Dr. Corkum and her “Better Nights, Better Days” sleep research team are developing a
national online treatment program for children’s sleep problems, slated to begin testing in 2014.
Dalhousie medical student Andrew Caddell received a student research award from the IWK to explore why youngsters in the Maritimes are referred to the Children’s Heart Centre. He found that a suspected heart murmur was by far the biggest reason, accounting
for 40 per cent of referrals. Even though more children than ever are referred to the centre, and more have sophisticated tests, the actual proportion of referred children diagnosed with heart disease has gone down. Andrew’s supervisor, Dr. Andrew Warren,
will take the findings forward to help improve the design and delivery of children’s heart services and the education of future doctors.
Andrew Caddell MEDICAL STUDENT
$2,500 One-time student project funding from the IWK Foundation
Meet some of our IWK Foundation-established researchers and see what they’re doing today: Dr. Jill Chorney ANESTHESIA RESEARCHER
$89,870 Total start-up funding from the IWK Foundation
Dr. Chris Richardson CANCER RESEARCHER
$180,000 Total start-up funding from the IWK Foundation
Dr. Isabel Smith AUTISM RESEARCHER
$55,565 Total start-up funding from the IWK Foundation
Izaak Fall 2013.indd 15
15
$948,354 – Current funding from Canadian Institutes of Health Research, Nova Scotia Health Research Foundation, University of California, IWK Health Centre. Dr. Jill Chorney and her team are designing an app to help parents decide if they should
be in the operating room when their child goes under anesthesia. If parents and the health care team agree that parents would be effective supports for their child at this stressful moment, the app prepares them for the experience. It lets them know what to expect and offers tips on how they can
stay calm and help their child cope. The IWK award is allowing Dr. Chorney to develop and pilot test this tool. She hopes the app will be widely available in the future, to reduce the stress and pain of surgery and improve children’s recovery.
$1,001,010 – Current funding from Canadian Institutes of Health Research, Canadian Breast Cancer Foundation – Atlantic Region, Nova Scotia Health Research Foundation, Canadian Liver Foundation, Lung Association of Canada. A leading expert on measles
virus, Dr. Chris Richardson made international scientific news when he discovered that many kinds of cancer cells are covered by large numbers of measles receptors that make it very easy for the measles virus to enter and destroy those cancer cells — without harming healthy cells. He has major grant
funding to learn how the vaccine strain of the measles virus could be used to treat breast, colorectal and other common cancers. In another project, he and colleagues at the University of Guelph are testing the vaccine strain of canine distemper virus to see if it can save the lives of dogs that are sick with cancer.
$826,370 – Current funding from the IWK Health Centre, Canadian Institutes of Health Research, Nova Scotia Health Research Foundation, New Brunswick Health Research Foundation, governments of Nova Scotia and New Brunswick.
Dr. Isabel Smith is leading a 15-member research team that’s comparing the cost-effectiveness of early intervention programs for preschoolers with autism spectrum disorders. The researchers want to learn which aspects of programs in Nova Scotia and New
Brunswick provide the best value. This three-year study is the first to compare provincially funded programs. The findings will be shared across the country to help all provinces provide high-quality, cost-effective services to young children and their families.
13-11-19 2:30 PM
Technology
16
Curing the curve IWK surgeon pioneers low-radiation technology for scoliosis patients
See more with the Izaak app available for free through iTunes Newsstand or Google play
Contributed
in severe scoliosis STORY Melanie Jollymore | PHOTOS John Sherlock
Izaak Fall 2013 - Winter 2014
Izaak Fall 2013.indd 16
13-11-19 2:30 PM
Izaak Fall 2013.indd 17
images with far less radiation than traditional x-rays. “Traditional X-rays send out scattered rays, but the EOS system uses what’s called a slot-scanner to focus the radiation into a single beam,” explains Dr. El-Hawary. “This beam scans the area of interest without exposing the rest of the patient’s body to radiation. As a result, their dose of radiation is reduced by six to nine times.” Since children with scoliosis often need two or more sets of X-rays a year, for many years, this is an immense reduction in risk. It’s a particularly important one for girls, who face a breast cancer risk eight times higher than that of the general population if repeatedly exposed to traditional X-rays. On the RSA side of the equation, Dr. El-Hawary has been working with biomedical engineering students to adapt the RSA monitoring technology to the child spine. (RSA was originally introduced to the Maritimes by Capital Health surgeon Dr. Michael Dunbar and Halifax Biomedical Inc. to monitor the stability of kneeand hip-replacement surgeries). With the new funding, Dr. El-Hawary and his research team are now adapting the RSA technology to work with the EOS system instead of ordinary X-rays. “We expect to start using the low-radiation RSA-EOS monitoring system in young spinal fusion patients by the fall of 2014,” says Dr. El-Hawary. “In addition to monitoring the stability of each patient’s operation, the new technology will show us how long it typically takes the spine to fuse after surgery — so for the first time, we’ll have real evidence that tells us how long patients should wait to return to school and sports.” The RSA-EOS system will also allow orthopedic surgeons and researchers to compare different spinal-rod implant systems, determine the optimal number and placement of screws along the spine, and even develop minimally invasive methods of conducting these com-
17
PHOTOS Above: Patient Hunter MacInnis, his father Jason, and Dr. Ron El-Hawary examine one of the rods used to stablize Hunter’s curved spine. Opposite: Image of the patient’s spine taken with new EOS system in August 2013. Below: Image of the patient’s spine taken in 2009.
Contributed
Contributed
I
n severe scoliosis, the spine shifts so far out of alignment that it creates a dramatic s-curve. This can affect the function of the heart and lungs. The only solution is surgery to straighten the spine as much as possible and hold it firmly in its new position with rods, screws and bone-grafting material. But, if there’s any ‘wiggle’ between the fused vertebrae after this tricky operation, the rods may weaken and break. This requires even more surgery to replace the rods and restore the spine’s stability. Dr. Ron El-Hawary, head of orthopedic surgery at the IWK, is working with engineers and software developers to pioneer a new way of monitoring spinal stabilization operations, to ensure they’re holding steady. With $3.1 million from the Atlantic Canada Opportunities Agency’s Atlantic Innovation Fund (AIF), the IWK, and two private-sector partners — Halifax Biomedical Inc. and EOS imaging — they’re creating a new technology they hope will help children all around the world. “We’re developing a low-radiation technique that allows us to detect even the tiniest movement between fused areas of the spine,” says Dr. El-Hawary. A world-expert in pediatric spinal deformities, he performs about 50 scoliosis-related operations on children each year at the IWK. “This technology will tell us within a short period of time if there’s a risk that the fusion won’t hold, so we can watch the child closely and step in before the rods break.” The research team is marrying two existing technologies to create a world first. They’re combining a technique called RSA (radiostereometric analysis), which traces the movements of tiny metal beads implanted in the bone during orthopedic surgery, with the EOS imaging system, which captures three-dimensional x-ray
13-11-19 2:31 PM
FACTS
• The spinal curves of
more than 500 children and teens in the Maritimes are currently being monitored at the IWK. Many will need several X-rays per year, for many years. The new EOS imaging system will dramatically reduce their exposure to radiation.
• The RSA-EOS system
that Dr. Ron El-Hawary and his team are developing will enable orthopedic surgeons to accurately monitor how well spinal stabilization surgeries are holding, so they can intervene early before anything goes wrong.
• Hunter MacInnis and his
family decided to make life easier for other families who need to spend a lot of time at the IWK, by raising money to buy mini-fridges for patient rooms on the orthopedic floor.
Contributed
18
PHOTOS
plex surgeries — all to improve the results of surgery and quality of life for patients. This is good news for Hunter MacInnis, a six-yearold from New Minas, N.S., who says he wishes he had a zipper down his back to make surgery easier. Diagnosed with scoliosis when he was nine months old, Hunter had his first spinal stabilization surgery at the age of three, when Dr. El-Hawary implanted an expandable rod along either side of his spine to prevent the curvature from getting worse. He’s had an
operation to lengthen the rods every six months since — and will need two more a year until he stops growing enough to have a final surgery to straighten and fully stabilize his spine. “We can always tell when it’s time to have the rods lengthened,” says Hunter’s mother, Jill. “Hunter is very active and he never complains, but when he starts to slow down and says his back hurts, you know it’s genuine and that his body needs to be stretched. We call the IWK and they get him in right away.”
Above: Dr. Ron ElHawary and his team are developing 3-D computer models of the child’s spine to help determine the optimal locations for placing the tiny beads that will allow them to use EOS and RSA technology to monitor the success of spinal stabilization surgeries. Left: The low-radiation EOS machine is a welcome addition to the IWK. The combined RSAEOS technology will be available to patients by the fall of 2014.
Izaak Fall 2013 - Winter 2014
Izaak Fall 2013.indd 18
13-11-19 2:31 PM
19
PHOTOS Top Left: Hunter stands inside the digital imaging machine at the IWK. Top Right: Dr. El-Hawary looks at Hunter’s spinal images. He performs about 50 scoliosis-related operations each year. Bottom: Hunter has had an operation every six months since the age of three to straighten his spinal scoliosis.
Izaak Fall 2013.indd 19
Before and after every operation, Hunter needs X-rays to measure the curve. “Hunter has had dozens of X-rays, on top of CT scans and an MRI,” says his father, Jason. “It has always bothered us, how much radiation he’s been getting.” The MacInnises are happy to hear the EOS system is up and running for clinical use at the IWK — so the next time Hunter comes in for surgery, he’ll receive a lot less radiation. And, by the time Hunter has his final surgery, RSA-EOS monitoring will be standard practice — at the IWK and other centres around the world that adopt the new technology — so he and his parents will have
a high-accuracy, low-radiation way to know how well this crucial surgery is holding. Not only will RSA-EOS improve the results of spinal surgeries in the future, IWK orthopedic surgeons Drs. Karl Logan, Jason Howard and Ben Orlik are looking at how to adapt it to monitor the results of surgeries to repair pediatric hip disorders. “It’s a platform to provide low-radiation monitoring for all kinds of orthopedic surgeries,” notes Dr. El-Hawary. “On top of the opportunity for better patient care, it offers economic development opportunities for our region.”
13-11-19 2:31 PM
Technology
An inventor in o Dr. Scott Farrell, physician and inventor, finds a way for women to regain their active lives with the Uresta pessary STORY Lindsey Bunin
20
Contributed
Izaak Fall 2013 - Winter 2014
Izaak Fall 2013.indd 20
13-11-19 2:31 PM
n our midst See more with the Izaak app available for free through iTunes Newsstand or Google play
Izaak Fall 2013.indd 21
21
tM un
n
day without having to tell my children that ‘Mummy can’t play.’” Nadia says Dr. Farrell opened her eyes to an alternative to surgery. “I’m very surprised it’s not more common,” she says. “The taboo needs to be lifted; it’s not a big deal. It is very easy to use and painless. I think more doctors should recommend this option.” Dr. Farrell loves hearing positive feedback from patients, like the story of a young girl with spina bifida. “She was enthusiastically involved in wheelchair sports and would catheterize herself, but would experience leaking while exerting. The Uresta changed that for her,” Dr. Farrell says. “A nurse practitioner fitted a patient in British Columbia who needed it to comfortably climb to the base camp of Mount Everest. A bagpipe player who leaked while performing used the device and took it on a musical tour around Europe. “That’s what it’s all about.”
ot
for the 12-month study period and beyond. The Uresta pessary significantly reduced incontinence. The device hasn’t gone unnoticed — the initial study was published in the American Journal of Obstetrics and Gynecology in 2007, and Uresta was noted as 2008’s ‘Progress Marketer of the Year’ by Atlantic Canada’s Progress magazine. Dr. Farrell would like the device to be cheaper than its over-the-counter cost of about $250 per year, but he says it doesn’t compare to the price of incontinence. “Costs can run $1,000 to $1,200 per year for pads, cleaning clothes, and other related expenses. The pessary is not excessive when you consider what it’s like to live daily with incontinence.” The IWK receives rave reviews for the pessary, which is what Dr. Farrell wanted to see from the beginning. Nadia, a mom of two from Antigonish, NS, was an active woman before she had children, running and participating in fitness classes regularly. After giving birth twice, she experienced bladder control issues when she laughed, coughed or lifted heavy objects, something that was both embarrassing and inconvenient for her busy lifestyle. “I let it go for about a year before I decided I had to do something about it,” she says. “I went to physio, did Kegel exercises, but it didn’t really improve.” Finally, she asked her physician for a referral and saw Dr. Farrell at the IWK. “I was really forward with my doctors that I wanted surgery; I wanted a fix-it solution,” she said. “Then I sat with Dr. Farrell and he explained his device. He said that I was definitely eligible for surgery based on my history, but he encouraged me to try (the pessary). There’s no pain, no recovery, so it was worth a try. “Within the first week, it had literally changed my life. I was able to go about my
Sc
I
t was a 10-year process that took a clever medical solution from plan to proven product, and Dr. Scott Farrell stuck by his idea and his patients throughout the entire journey. Although the concept of the pessary is not new — the unique and comfortable design of the Uresta sets this Maritime innovation apart from the rest. But the IWK urogynecologist is a physician first and an inventor second. With more than two decades of experience treating women with urinary incontinence — surgically in very serious cases — Dr. Farrell recognized the gap in treatment options for women with this condition. “I’ve always been interested in conservative methods of treatment rather than jumping to the surgical option. I’ve tried a number of different pessaries with patients in the past, but they experienced drawbacks,” says Dr. Farrell, explaining that a pessary is placed in the vagina to support the bladder and stop unwanted urine loss. “If the devices are not precisely fitted, they can be difficult for patients to insert or remove themselves.” He knew there had to be a better way to ease women’s suffering, so he embarked on a mission to design a more user-friendly device. “Uresta is designed similarly to a tampon with a small handle for insertion and removal,” he says. “Unlike a traditional pessary, it doesn’t need to be fitted by a doctor, so a woman can just buy it at the pharmacy.” A woman can use the Uresta all the time, or just when she’s doing physical activities that might produce unwanted urine. Either way, she can urinate as usual while the pessary is inserted. After Dr. Farrell developed the Uresta pessary, it went through a two-year clinical trial for safety and effectiveness. The research showed that 76 per cent of women successfully fitted with the device went on to use it
“I’ve always been interested in conservative methods of treatment rather than jumping to the surgical options.” — Dr. Scott Farrell
13-11-19 2:31 PM
Feature
22
Izaak Fall 2013 - Winter 2014
Izaak Fall 2013.indd 22
13-11-19 2:31 PM
23
IWK nurses share their expertise and push the limits to improve burn treatment across the country STORY Lindsey Bunin | PHOTOS Scott Munn
Izaak Fall 2013.indd 23
13-11-19 2:32 PM
I
WK burn specialist nurses Jayne Fryday, Mary Beth Rowe and Emily Creelman have a shared passion, and when you hear it, you might say, “Oh, I could never do that.” They’ve heard it all before, but their commitment to burn treatment doesn’t waver. “It’s certainly not a pleasant task, changing dressings on a child who is screaming in pain. But I believe it is the most rewarding when you get to see them get better,” says Fryday, a clinical leader in the IWK’s Medical, Surgical and Neurosciences Unit, and a national leader and mentor in burn nursing for 25 years. In 1987, Fryday became one of the pioneering members of the Canadian Association for Burn Nurses (CABN), later serving as the Nova Scotia’s Provincial Council representative for many years. She has since served a variety of roles in the organization, including president and currently newsletter editor.
and has yet to miss a year at camp. Gail is also an IWK nurse, and founding member of the core group of nurses and firefighters who started the annual camp. Her daughter, Emily, comes by her passion honestly, and now serves as the Nova Scotia representative for the CABN. “It’s a common misconception that when a child leaves the hospital, they are healed,” says Emily. “Compression garments are terrible to wear, they often have contracted joints and there’s usually significant scarring, not to mention the psychological aspect. Burns require a lifetime of recovery. We’re always learning and expanding our horizons about treatment and healing.” That’s where Camp Connect comes in. Founded in 1998 and funded by the Nova Scotia Firefighters Burn Treatment Society, the camp is staffed by passionate volunteers. This year, 39 children attended with the option of bringing a guest along, too. Danielle Hall’s six-year-old daughter Mea didn’t want
Fryday says the CABN “is a small but powerful group” that meets bi-annually for a conference to share treatment techniques, hear about the latest and greatest in healing, and generally learn from their colleagues from across Canada. Mary Beth Rowe shares Fryday’s passion. As the standing president of the CABN, she has always been interested in burn treatment and now takes her interest on the road as the chair of the group’s annual general meetings. “Everyone has different techniques and we can learn so much from each other,” Rowe says. “There’s something to be said for power in numbers. It’s a social network of nurses who can learn from each other.” Emily Creelman hasn’t only learned from her peers, but from her mom as well. As a kid, she tagged along with her nurse mom Gail to a special kids’ camp for burn survivors. Now, 16 years later, she’s a nurse, too,
to come home from camp this year. A first-timer at the week-long, sleep-away camp, Mea exceeded her mom’s expectations. The camp did, too. “Sending her to this camp, where she recognized so many of the nurses who cared for her at the IWK, was extremely comforting,” the Sussex, N.B. mom says. “Much to my disappointment, there were no calls home. She just had an amazing time.” When she was five, Mea accidentally lit her top on fire with a lighter. She was rushed to Moncton and on to the IWK where they learned that Mea had burns on 45 per cent of her body. While she continues to recover, Mea still wears a compression top, which her mom describes as a bathing suit with arms, and will have significant visible scarring after more surgeries. But thanks to her Camp Connect experience, Mea and her mom are more confident in facing what challenges may come.
See more with the Izaak app available for free through iTunes Newsstand or Google play
PHOTOS Burn specialist nurses L-R: Jayne Fryday Mary Beth Rowe Emily Creelman
24
“ It’s certainly not a pleasant task, changing dressings on a child who is screaming in pain. But I believe it is the most rewarding when you get to see them get better.” — Jayne Fryday
Izaak Fall 2013 - Winter 2014
Izaak Fall 2013.indd 24
13-11-19 2:32 PM
Contributed
Right: IWK burn patient, Mea Hall, enjoying Camp Connect for the first time.
Contributed
PHOTOS
25
“ Sending her to this camp, where she recognized so many of the nurses who cared for her at the IWK, was extremely comforting.” — Danielle Hall, mom to burn patient
Izaak Fall 2013.indd 25
“After attending the camp and seeing the other kids there, Mea realized she isn’t alone,” Hall says. “She’s so much more talkative about it now; it’s not as scary. The other kids gave her tips on how to cope. It means a lot to receive positive encouragement from other kids, it’s on her level — and I think she believed it more than anything that came from an adult.” Rowe, also a nurse at Camp Connect, was one of Mea’s nurses during her stay at the IWK and had a chance to catch up with her at camp this summer. “Mea is a perfect example of why I love camp so much,” Rowe says. “When she had to have her dressings changed, she cried and screamed and hated it. Then to see her at camp, running and playing with the other kids, we see how comforting and therapeutic the camp environment can be. It also gives her a chance to see her nurses in a different light; I’m not just a mean nurse anymore.
I honestly don’t know who has more fun at camp, the kids or me.” On average, a half dozen burn survivors are admitted to the IWK each year. Years ago, that statistic was closer to 40 annually. The IWK still sees approximately 50 children with burns a year in the emergency room, Fryday points out, noting that treatments have come a long way in the three decades she’s been nursing. “The changes in the way we manage or treat these burns enable the patient to be at home and just come to the hospital twice a week for their care. Care has changed so much and as we travel across the country we realize that we, at the IWK, are right there, offering some of the best, most progressive treatments,” Fryday says. “We are a feisty bunch and we will always push the limits for our patients.”
13-11-19 2:32 PM
26
Izaak Fall 2013.indd 26
13-11-19 2:32 PM
Feature STORY Denise Surette | PHOTOS Scott Munn
See more with the Izaak app available for free through iTunes Newsstand or Google play
Lifeblood The IWK helps Maritime mothers and babies with rare, life-saving in-utero blood transfusions
L
ooking at Harper Ramsay, just days after she was born, it’s hard to believe she was ever sick. At seven pounds and 10 ounces, with a glowing complexion and bright eyes, she is a newborn that any parent would dream of — healthy and content. Harper’s parents, Jason and Julie Ramsay, from Fortune Cove, P.E.I., already have one healthy child — two-year-old Hayden. With her first pregnancy, Julie had a normal experience and birth. But during her second pregnancy, routine early blood work showed an antibody in her blood that needed to be re-checked. “It started with my first appointment with my doctor; they just did the initial blood work that they do,” said Julie. “Then I got a call from his nurse telling me that I had this ‘Kell antibody.’ The following Monday we were in Halifax for an ultrasound.” For many pregnant women, hearing that you have a condition can raise all kinds of questions. How will this affect my child? What does this diagnosis mean? The Ramsays were quickly referred to Dr. Michiel Van den Hof, a veteran IWK physician specializing in maternal fetal medicine, who explained what the Kell antibody is, and how it affects both mother and baby. “Essentially Julie had developed an immune reaction to her baby’s blood type,” said Dr. Van den Hof. “The baby’s blood was foreign to her. A little bit of that baby’s blood had gotten into her circulation and she developed an immune reaction to it. She has Kell antibodies, which is a bit unusual — more unusual — because the most common type of antibody would be Rh antibody. It’s exactly the same situation with the Kell antibody but it happens to be against a red cell type that is a little less common.”
Izaak Fall 2013.indd 27
27
13-11-19 2:32 PM
Julie herself was in no danger of becoming ill. Dr. Van den Hof explained that the antibodies in her blood were crossing the placenta and attacking the baby’s red blood cells — not her own. Harper, still in the womb, had her mother’s antibodies signalling to destroy her own blood cells, which was beginning to make her anemic. Dr. Van den Hof explained that if the condition was left untreated, and enough antibodies were in the blood to extensively destroy the baby’s blood cells, the unborn child would become anemic — and with severe anemia, heart failure could set in, resulting in stillbirth. After the baby is born, if antibodies are high in the baby’s blood jaundice so severe it could cause brain damage is also a threat. Fortunately, since the 1990s, Dr. Van den Hof and his team have been performing life-saving blood transfu-
“The doctor always said, ‘I know it’s a lot of travelling for you,’ but we would say, ‘don’t ever worry about that. We’re happy to have the IWK to come to. It could be worse,’” Julie said. “At first it was just once a month, and then the levels that they’d been watching started to rise, so then probably two weeks before we had our first transfusion we were coming every week.” When Julie was 31 weeks pregnant, Harper received her first blood transfusion — a delicate process and one which requires a large team of experts. “It’s a big team,” said Dr. Van den Hof. “There are usually two or three maternal fetal medicine people, nursing support, RH Program nursing coordinators that get everything ready, and our lab services have to be there.” Julie and Harper went through three transfusions
PHOTOS
sions on babies still in-utero — babies just like Harper. The in-utero blood transfusion gives a baby healthy, antibody-free blood that cannot be affected by the mom’s antibody, thus keeping anemia at bay until the baby is born and free of the antibodies passing through from the mother. The IWK is the only facility in Atlantic Canada that offers in-utero blood transfusions. With this information to digest, the Ramsays soon began travelling to the IWK from P.E.I. on a regular basis. Blood tests and ultrasounds became the norm, as well as the four-and-a-half-hour drive back and forth. The trips proved costly and time consuming, but the Ramsays were happy to make the journey to receive the care they needed in Halifax that was not available in P.E.I..
in total — each one the same — and each one giving Harper new blood. In-utero transfusions — which Dr. Van den Hof describes as sometimes nerve wracking due to the precise work required — are done with many sets of eyes on the ultrasound screen. The physician performing the transfusion must insert a needle directly through the mother’s belly, through the uterus and into either the umbilical vein in the umbilical cord or into the umbilical vein as it crosses through the baby’s liver — each one with its own risks. The blood is tested to check how severe the anemia is immediately upon entering the vein. An on-site, specialized lab technician is waiting to give results,
“ The doctor always said, ‘I know it’s a lot of travelling for you.’ But we would say, ‘don’t ever worry about that. We’re happy to have the IWK to come to.’”
Below: Dr. Van den Hof marks the spot where the blood transfusion needle enters the womb and the embilical cord, as Julie Ramsay waits patiently. Opposite: Jason Ramsay watches his wife Julie receive her second inutero blood transfusion at the IWK Health Centre.
28
— Julie Ramsay
Izaak Fall 2013 - Winter 2014
Izaak Fall 2013.indd 28
13-11-19 2:32 PM
29
Izaak Fall 2013.indd 29
13-11-19 2:33 PM
PHOTOS Right: Ultrasound technology is essential to finding the spot for the inutero blood transfusion. Below left: Nurse coordinatior Marg Parsons calculates blood volume of an unborn Harper. Below right: Jason and Julie welcome Harper to the world.
while the nurse coordinator is calculating the baby’s weight and blood volume. These pieces of information are critical and need to be provided instantly. While the test is being done, the baby is also given a drug to induce sleep, thus preventing the baby from moving around and disturbing the needle that has been so carefully placed. Once the calculations have been made, the blood quantity is determined and the transfusion begins. Julie said she barely knew what was going on around her, and was concerned with only one detail. “All I can remember is someone telling me not to move, so I was scared to move.” She said the feeling was strange, but not as painful as it looks.
30
“I said to Jason, it’s kind of like when you get a splinter in your finger and you’re poking around a little bit, only it’s bigger, but that would give you an idea of what it’s like.” After three transfusions, Harper was delivered at the beginning of August at 38 weeks gestation and with no signs of serious jaundice — although the IWK staff kept her under a light to help treat jaundice as a preventive measure as the leftover antibodies died away. Jason and Julie were able to breathe a sigh of relief after what was a trying pregnancy. “I’m glad she’s here and everything seems to be progressing well, but I know she’s going to be under close watch for the next eight to 12 weeks, so I’ll be even better
after that. She’s here and she’s healthy, she just has to be monitored,” said Julie. After a stay at the NICU, Harper will head home and continue to be monitored by a pediatrician in P.E.I., but is expected not to have any problems in the future. The tricky part is over, and so is the waiting and worrying the Ramsays have gone through for the last eight months. The life-saving transfusions did their work. Now they can focus on bringing Harper home. Dr. Van den Hof says although cases like Julie and Harper’s are rare, every expectant mother in the Maritimes is monitored for Rh conditions, so that lifesaving transfusions can take place.
Izaak Fall 2013 - Winter 2014
Izaak Fall 2013.indd 30
13-11-19 2:33 PM
Preventing Rh disease in women for almost 50 years STORY Denise Surette
31
The Rh Program of Nova Scotia plays an integral role in diagnosing and treating Rh conditions in expectant mothers. In 2014, the program will be celebrating 50 years of service, a program unique in Canada. The program monitors the blood work of all expectant mothers in Nova Scotia to locate any antibodies that could be harmful, a preventive measure to decrease challenges with pregnancies. Margaret Parsons, nurse coordinator of the program for 32 years, says the program is funded by the Nova Scotia Department of Health and Wellness, and proves to be an inexpensive investment that yields positive results. “For mothers who have worrisome antibodies, new technology actually allows blood tests to be done on the mother that will show the blood type of the unborn baby. This can help guide the need for further monitoring or treatment.” Expectant mothers see their family doctors for a blood test early in their pregnancy. If they are Rh negative, or if there are worrisome antibodies in their blood that could affect the baby, the Rh program is notified and the family doctor is sent a note with reminders and forms to ensure the mother has the proper followup care. The program was initially started because of the high mortality rates in newborns whose mothers had Rh antibodies. Parsons explains this was a major cause of stillborn babies 50 years ago.
Izaak Fall 2013.indd 31
“Before the preventive Rh program it was very common for women to have this antibody and a lot more babies were affected — 50 per cent of the babies born to Rh negative women would have died without any treatment. It was very serious.” Women today can receive injections to help prevent the formation of Rh antibodies. These injections reduce the chance of Rh disease in the baby from one in 10, to 1 in 1,000. “Once problematic antibodies form, whether they are Rh negative or other types such as Kell, further testing and treatment may be needed. The ultimate treatment during pregnancy as for Julie Ramsay would be in-utero transfusions.”
For more information, visit the Rh Program online, at rcp.nshealth.ca/rh
See more with the Izaak app available for free through iTunes Newsstand or Google play
13-11-19 2:33 PM
Feature
Taking control
32
Izaak Fall 2013 - Winter 2014
Izaak Fall 2013.indd 32
13-11-19 2:33 PM
The IWK’s CAPA program allows patients and families to take control of their mental health faster than ever before STORY Lezlie Lowe | PHOTOS Scott Munn
S
herri-Lee Russell was woken by her son, Tanner. It was 2 a.m., and the pre-schooler was in the kitchen, launching food left and right. Another time, he plugged the sink and flooded the bathroom. At his grandfather’s, Tanner climbed onto the counter and grabbed scissors. He ambled over to the 50-inch flat-screen TV and slashed it. “He was saying he couldn’t control himself,” says Sherri-Lee, 34. “Saying, ‘something in my brain is telling me to do bad things.’ “I kind of felt like I was at a dead end.” In the past, the road to changing Tanner’s behaviour would have at least been a lengthy detour. In December 2011, more than 1,100 children were on the IWK’s child and adolescent mental health waitlist, waiting up to 20 months before first contact. “I think people stopped calling,” says Sharon Clark, a doctor and psychologist. “Why would you call if you had a seven-yearold you wanted to be seen before their ninth birthday?” But Sherri-Lee got her first appointment in August 2012, a mere two weeks after she first called the IWK. She and Tanner started weekly therapy eight weeks later. Today, Tanner is six, and a different child; Sherri-Lee, a different parent. The two graduated from parent-child play treatment in August. “(He’s) a lot more relaxed,” says Sherri-Lee. “I have a lot of new tools.” How did Sherri and Tanner manage their 360 in half the time it used to take patients to even hear back from the IWK? CAPA. CAPA stands for Choice and Partnership Approach. It’s a philosophy. A system. It’s a sea change in mental health care that looks at who’s coming through the door, what that family is hoping for, and whether the IWK can help. One goal of CAPA is to eliminate first-contact wait times. Not
Izaak Fall 2013.indd 33
reduce, but eradicate. The CAPA model keeps families at the centre. Families are asked exactly what they’re looking for from the IWK, they’re tasked with agreeing to do the hard work needed and a team comes together to make it happen. In terms of care, Sharon uses a metaphor — families drive the bus, not doctors. “We get on the bus with those families.” Tanner was diagnosed with ADHD at two. But Sherri-Lee always knew something was up. “I would be changing his bum and he would be booting me, kicking me as hard as he could.” Tanner was expelled from daycare for aggression. In Primary he walked down the hall hitting random children, knocking over garbage cans along the way. The IWK’s child and adolescent mental health services team, which accepts patients up to their 19th birthdays, sees anxiety, mood and behaviour disorders, psychosis, eating disorders ... everything. Tanner, then, wasn’t unusual. Sherri-Lee’s experience was. “A lot of times, you talk to doctors and you feel like they don’t really understand where you’re coming from. You can leave without getting what you want out of it, so it’s like it was pointless. “But from the first CAPA appointment, it felt like things were moving,” she says. Sharon Clark remembers first looking at the CAPA website, after a social worker friend sent her the link. “This can’t be possible,” she thought. She crunched the data. “Oh my God,” she told her manager. “We could do this.” And they did. The IWK launched CAPA in January 2012 with a waitlist blitz, after sending letters to waitlisted families. Anyone who still needed care had an appointment before the end of March. Before CAPA, every new patient was given
a complex mental health work-up whether they needed one or not. Families were waiting upwards of 20 months for assessment, when some only wanted a parenting support group. “It was sort of insisting everyone got the same thing,” Sharon says. “You had to have the Cadillac when maybe you just needed the Mini.” Now, first appointments see families meeting a clinician to tell their story and explain what they want. Families’ goals can be simple or complex. Sometimes they can get help within their communities; sometimes on their own. And sometimes they just aren’t ready. “We’re having much more frank conversations with people about whether this is the right time,” says Sharon. “Families have a ton on their plate and when you’re seeking mental health treatment, it requires a lot.” Sherri-Lee says she’s never worked harder than she has over the past year with Tanner. Because nothing’s ever been as important. The mom and son just got their play therapy program graduation certificates. “They are SO going on the wall.”
33
PHOTOS Above: Dr. Sharon Clark, psychologist at the IWK Health Centre. Opposite: Tanner and Sherri-Lee Russell.
13-11-19 2:33 PM
34
Million-dollar donation provides funds for new mental health unit “When you have the means,” says Halifax philanthropist Marjorie Lindsay, “it’s nice to be able to help.” Lindsay’s comment may be a contender for understatement of the year, after the 88-year-old surprised the IWK in June with a $1-million donation. The Lindsay gift will help fund a new inpatient mental health unit, treating youth with mental illnesses including psychosis, depression, bipolar disorder and obsessive compulsive disorder. The unit will be more home than hospital, with natural light, open space and a fireplace. “Lovely chesterfields, chairs,” Lindsay muses. “All of
the sunshine we can put in a child’s life who is depressed, who has anxiety, who feels that the world is not going to give them very much comfort.” Mental health is no hush-hush affair for the Lindsays, least of all for the unapologetic matriarch. Lindsay has a daughter who developed bipolar disorder as an adult. “If you had cancer, or diabetes, you would have all the sympathy in the world. But with mental health there is such stigma ... You’re not ashamed if you have diabetes; you say, ‘I have to go on insulin.’” The new unit will open in April 2014 and Lindsay says she won’t miss her chance to check it out. “It’s very close to my heart.”
Scott Munn
STORY Lezlie Lowe | ARCHITECTURAL RENDERINGS Cannon Design
See more with the Izaak app available for free through iTunes Newsstand or Google play
PHOTO
Marjorie Lindsay, philanthropist.
Izaak Fall 2013 - Winter 2014
Izaak Fall 2013.indd 34
13-11-19 2:33 PM
Izaak Fall 2013.indd 35
13-11-19 2:33 PM
Feature
36
Izaak Fall 2013 - Winter 2014
Izaak Fall 2013.indd 36
13-11-19 2:33 PM
Child Life Television Putting young patients in the director’s chair STORY Debra Wells-Hopey | PHOTOS Scott Munn
Never mind X Factor, American Idol and The Voice. And America’s Got Talent? Forget it. Turns out the IWK has something even Simon Cowell wouldn’t find fault with – Child Life TV (CL-TV)
37
Izaak Fall 2013.indd 37
13-11-19 2:34 PM
38
A
child-directed loop of variety shows, stand-up comedy, cooking lessons, puppet shows, vocal performances, dance parties and advice and information on being in the hospital runs on the IWK Health Centre’s Child Life Television (CL-TV) — available within the IWK for all patients and families to watch whenever they like. And child-directed it is — a program unique to North American hospitals. Whenever possible, the children themselves, mostly patients but sometimes with siblings, choose the idea, produce the show, direct it, star in it and make the backdrops. Six-year-old Breanna Fowler, one of the CL-TV stars, has spent years off and on at the IWK since the age of three. For the little girl from Truro, this means most of
her life has been spent in, around and talking about the hospital. Her TV appearances show her and her little brother creating crafts, playing with their favourite toys and putting on puppet shows. “It’s not a happy thing, but the time spent there hasn’t always been a sad thing, either,” explains Breanna’s mom, Sarah. “It’s just a reality for her, as it is for many children. “Life still happens for these kids, even if they are in the hospital,” she continues. “They learn, play and grow — just in a different environment than other children.” The importance of play in a child’s and teen’s development cannot be understated. “Young people use play to learn and to process what is happening in their lives,” says Chantal LeBlanc, interim professional practice chief and coordinator of IWK Child Life Services.
PHOTO Buddington and Breanna film the start of their Child Life Television episode.
Izaak Fall 2013 - Winter 2014
Izaak Fall 2013.indd 38
13-11-19 2:34 PM
PHOTOS Top Left: Kate Matthews, Child Life Specialist. Top Right: Buddington the therapeutic clown. Below: Kate films Breanna, Brayden and Buddington.
See more with the Izaak app available for free through iTunes Newsstand or Google play
39
“ Relationships are built, creativity is expressed and teamwork and problem-solving skills are practiced during the making of the CL-TV shows.” — Chantal LeBlanc
Izaak Fall 2013.indd 39
13-11-19 2:34 PM
40
“Just because a child enters the hospital this process doesn’t stop. In fact, it can be argued that play becomes even more vital to maintain a sense of normalcy and a healthy outlook.” During the CL-TV process, the young patients themselves take control of what they want in the show and how they want the show to look; gaining a sense of empowerment and fun from just being in the moment. “Relationships are built, creativity is expressed and teamwork and problem solving skills are practiced during the making of the CL-TV shows,” continues LeBlanc. “These are real skills that the kids can take home with them. They can then share the videos, not only with other patients in the IWK, but on YouTube, with classmates and with family members far away. “They come up with the ideas, choose an outfit, choose the music, make the backdrops — that’s a lot of empowerment. It also documents a time and place, marking important milestones in these kid’s lives,” says LeBlanc. What seems like simple fun is really important emotional work. “There is nothing wrong with saying the word ‘fun’ in the hospital,” explains LeBlanc. “If we give them the strategies and the supports, they have the strength within them to blossom despite their challenges.” Cleve Sauer and Kate Matthews, both of IWK Child Life Services, are the “production assistants” to the children. They help with the filming and editing of the CL-TV shows, assisted by the rest of the Child Life team and other IWK professionals.
Cleve, assistant to Buddington (who bears a striking resemblance to Cleve), explains a bit of CL-TV’s history. “The IWK Foundation was struck by the uniqueness and potential of the idea,” says Sauer. “Soon after, they found a particular donor who wanted their gift to go toward enhancing the experience of child play and expression. This was the perfect fit. That support allowed us to expand and make CL-TV a bigger part of Child Life at the health centre.” Combined, the two member CL-TV team devotes about two and a half days a week to the project. There are similar programs in other pediatric hospitals, but the IWK’s is unique in that it is primarily kid-driven. “We have chosen to do it in a certain way,” explains Kate Matthews. “Some hospital channels feature scheduled shows and include patient participation. Our kids don’t just participate — we are proud that many of our patients and their siblings do the whole thing.” A child may be receiving a visit from Buddington the Clown, and suggest they want to do a dance party with costumes. Buddington talks to his assistant, Cleve, the Child Life team members involved with that patient, and his friend “Kamera Kate,” and sometimes as soon as that afternoon, the TV show is being filmed. The CL-TV team is determined to maintain the health centre’s family-centred principles. This means there are very few third-party or scripted shows. No filler, no advertisements — just kids being kids. Siblings can participate in the CL-TV program as
“ Our kids don’t just participate — we are proud that many of our patients and their siblings do the whole thing.” — Kate Matthews, Child Life specialist
Izaak Fall 2013 - Winter 2014
Izaak Fall 2013.indd 40
13-11-19 2:34 PM
PHOTOS Left: Buddington, Breanna and Brayden have fun during filming. Right: Cleve Sauer watching an episode of Child Life TV.
“Play is the language of childhood. There is nothing frivolous about it.” — Cleve Sauer, CL-TV Co-ordinator
well. Breanna’s brother, four-year-old Brayden, has been an excellent co-star. “CL-TV provides a chance for full-on creative play”, says Sauer. “Play is the language of childhood. There is nothing frivolous about it.” Breanna has a form of neuroblastoma, a tumourbased cancer that wraps itself around organs, tissues, arteries and even the spine and heart. “We practically lived at the hospital for her first two years,” says her mother, Sarah Fowler. Breanna is the first in the Maritimes to get a new antibody treatment, improving her chances of survival by 30 per cent. In the meantime, the six-year-old continues to grow, learn and play.
Breanna is a long-time Child Life TV performer. “She loves it,” says mom Sarah. “She’s our Truro star. She will watch it 24/7 if she can!” Child Life TV has had a huge effect on Breanna. It has lifted her spirits and given her an identity beyond being a sick kid. “Cancer sucks,” says Sarah bluntly. “But we had some great times during these last three years. The two things are not necessarily incompatible. “You don’t stop being a kid just because you’re sick. Programs like Child Life TV have let Breanna, and us, have some normal, fun times. And really, that’s what being a kid all is about.” 41
Investing in well being is an important key to our success. That’s why we’re proud to donate $2 of every patient’s stay to the IWK Foundation in recognition of their vital contribution to research and care. Ask about our special IWK Family Rate. Call 902-423-6331 800-565-2020 or visit www.lordnelsonhotel.com 1515 South Park Street - Downtown Halifax -
Izaak Fall 2013.indd 41
13-11-19 2:34 PM
Profile
Change makers
42
Three remarkable young people, and former IWK patients, use their experiences to better the world Photo: Sergey Nivens/123RF
STORY Tom Mason
Izaak Fall 2013 - Winter 2014
Izaak Fall 2013.indd 42
13-11-19 2:34 PM
A stay at the hospital can be tough, but for some exceptional young people, it’s also a time to grow, gain strength and learn about who they are. “We are constantly impressed and inspired by the IWK graduates, so to speak, who turn their experience into positive change in the world,” says Dr. Joseph Hyndman, VP of Medicine at the IWK. “I see wisdom, perspective and maturity beyond their years, and I know they are going places.” Jacqueline Wigle, Sonja WeilgartWhitehead and Jacob Hamilton are three former IWK patients who have found ways to channel their experiences to help others in similar situations. They are all change makers.
Izaak Fall 2013.indd 43
Jacqueline Jacqueline Wigle is busier than the average 20-year-old. In addition to a full slate of classes at Dalhousie University, where she majors in theatre studies, she devotes much of her spare time to helping young people cope with illness. Jacqueline volunteers with ‘You’re in Charge,’ an IWK program that helps teenagers with chronic diseases and their parents learn to manage their own health. She also volunteers with Camp Brigadoon, a camp for kids with chronic illness in the Annapolis Valley. She advocates for social inclusion for children with developmental delays, speaks out about Crohn’s disease, and works with young people to help them through their own health issues. Her drive to help others is matched with her empathy. Jacqueline was first diagnosed with Crohn’s disease — a painful, and often severe, inflammation of the gastrointestinal tract — when she was 12. Her treatments meant at least eight lengthy stays at the IWK where she would undergo a procedure known as total parenteral nutrition (TPN) that provides all her food through intravenous fluids, a procedure designed to give her inflamed intestinal tract a rest. The TPN treatments often lasted two weeks at a time — a strain on any busy teenager. “The hardest part is craving food,” she says. “I’d be okay until I saw food commercials on TV and then I would really start to miss the taste of it.” Jacqueline calls Crohn’s “an unsexy illness” and says that sufferers often get ignored because of the stigma attached to a digestive disorder. “Let’s face it. It isn’t an easy thing to talk about,” she says. Two years ago, as a member of the IWK Youth Advisory Council, Jacqueline headed up a project called “Passionate for T.P.” to lobby for better quality toilet paper for inpatients with gastrointestinal disease. “Patients with those kinds of problems spend a lot of time going to the bathroom,” she says. “Having a good quality toilet paper can be very comforting and helpful for them.” Thanks to those efforts, today IWK inpatients can access higher quality toilet paper whenever they need it. She manages to do it the way she meets every challenge in her life: through humour. “The best thing you can do when you’re dealing with something like this is to stay
positive and try not to take things too seriously. If you allow yourself to see the funny side, it’s a whole lot easier to get through it.” That’s where her love of theatre, music and dance comes in. “What matters is to be happy. That’s why I got involved with theatre and that’s why I got involved with the IWK. I wanted to be able to see my own hospital experience in a positive way. I wanted to get something positive from my illness.” In the spring of 2013, Jacqueline received the Robbie and Jean Shaw Scholarship, an award given to former IWK patients who have made a difference in their community. She hopes to go to law school when she graduates and would like to channel her passion for advocating on behalf of young patients into a law career.
Sonja At the age of 18, Sonja Weilgart-Whitehead is already an old hand at talking to the media. The Herring Cove teenager was just 15 when she spearheaded a media campaign that focused attention on evacuation policies at Halifax schools — a campaign that changed those policies for students with mobility issues. Sonja has quadriplegic cerebral palsy, a condition that comes with significant mobility challenges. “My high school had an evacuation policy that said they couldn’t carry disabled persons out of the building because it would risk injuring the person responsible for carrying them,” she says. “Instead, we were supposed to go to a designated safe area and wait for the fire department.” But the designated safe room in Sonja’s high school was located right above a propane tank, with furniture blocking the only window that rescue personnel could use to access it. “I knew that if my school ever went up in flames, I was going to be toast.” It was a situation that Sonja had no intention of ignoring. She and her mother contacted the media and began a series of interviews to shed light on the topic. The campaign immediately caught the attention of Nova Scotia cabinet ministers Ramona Jennex and Marilyn Moore who offered her an apology and set out to change the school policy. “They changed it for everyone in the province,” she says. “It meant a lot, even
43
13-11-19 2:34 PM
ed
ut ib
tr on
d te
C
bu
nt
ri Co
S ir i
“Patients with those kinds of problems spend a lot of time going to the bathroom. Having a good quality toilet paper can be very comforting and helpful for them.” — Jacqueline Wigle
“Over the last six years I’ve been getting a lot better because of a phenomenal surgery that the IWK gave me. Now I can walk without tangling my feet, without being crumpled over. I can swim a lot better too. It’s forever changed my life.”
Pho
tog
ra
ph
y
“Mental illness is a disease like any other. There’s nothing to be ashamed of, and there’s always hope.” — Jacob Hamilton
— Sonja Weilgart-Whitehead
44
though I was almost ready to graduate. With the old policy, it was like they were saying my life wasn’t as valued as the other students.” Sonja is used to overcoming challenges. Her first extended stay at the IWK began the day she was born, when she began a 10-day stay in neonatal intensive care. Dr. Richard Goldbloom diagnosed her with cerebral palsy when she was 18 months old. She’s made many trips to the hospital since then. “Over the last six years I’ve been getting a lot better because of a phenomenal surgery that the IWK gave me. Now I can walk without tangling my feet, without being crumpled over. I can swim a lot better too. It’s forever changed my life.” Today Sonja is studying for her Bachelor of Arts (honours) degree at Carleton University in Ottawa, and received the Robbie and Jean Shaw Scholarship. She plans to go on to become a lawyer advocating for people with disabilities. She chose the university because of its unique program for physically challenged students — a program that includes 24/7 attendant services and full wheelchair accessibility. She is also a nationally-classified para-swimmer on the Carleton varsity swim team and involved in horseback riding, sailing, skiing and rock climbing.
Jacob For Jacob Hamilton, paying it forward means finding strength in his own life. At 19, Jacob has been through more than most people his age. He’s already struggled with mental illness, and the stigma that surrounds it, for several years. Jacob spent four months in the IWK inpatient mental health unit starting at age 17. He endured weeks of difficult medication changes, missed out on family and school events, even spending his birthday and the days leading up to Christmas in the hospital. Through it all, the IWK staff was there to help him, at times becoming almost part of his extended family. “They even took part in Christmas activities with me,” he says. Today Jacob uses his own experiences to help other young people suffering with mental illness. He volunteers with the IWK Foundation and has worked to raise money for a new inpatient mental health unit for the hospital that will offer much improved care space for those with acute mental illness requiring hospitalization at the IWK. He speaks out to help improve adolescent mental health care in Nova Scotia, and he advocates for young people, to help them overcome the stigma that so often goes with mental illness.
“Mental illness is a disease like any other,” he says. “There’s nothing to be ashamed of, and there’s always hope. There are a lot of youth out there dealing with these issues. They need to know how they can access mental health care.” He’s also attending Dalhousie University, working on a science degree and planning to major in neuroscience, microbiology and immunology. Jacob recently received a $40,000 scholarship to help him pay for university and he’s doing well with his studies, but he still deals with his illness every day. “I have good days and bad days,” he says. The hours he gives back as a mental health volunteer are one of the ways he copes. “I do it as a way to give back to the IWK. I lost a lot of time in my life because of my illness. I lost a year of school. The IWK helped me get better. They helped me get back to real life.” Jacob says that people with mental illness need someone in their corner to help them get proper treatment in their most difficult days. That’s what motivates him to work so hard. “They need to fight for the right care, and the irony is they really aren’t equipped to fight,” he says. “There are a lot of patients who can’t speak about their problems, but I don’t mind speaking out.”
Izaak Fall 2013 - Winter 2014
Izaak Fall 2013.indd 44
13-11-19 2:35 PM
INNOVATION AT ITS BEST We are pleased to congratulate Dr. Patrick McGrath and Dr. Patricia Lingley-Pottie on winning the 2013 Ernest C. Manning Awards Foundation’s Encana Principal Award. This year’s award recognizes Dr. McGrath’s and Dr. Lingley-Pottie’s social innovation, Strongest Families Institute. Strongest Families Institute is a not-for-profit corporation based in Halifax that provides distance, evidence-based services to children and families seeking help for mental health and other issues impacting health and well-being. The Strongest Families Institute programs and distance delivery system began as a research program funded by the Canadian Institutes of Health Research conducted at the Centre for Research in Family Health at the IWK Health Centre.
Izaak Fall 2013.indd 45
Dr. Patrick McGrath Founder and CEO of Strongest Families Institute, Integrated Vice President, Research and Innovation at the IWK Health Centre and Capital District Health Authority, Professor of Psychology, Pediatrics and Psychiatry, and Canada Research Chair at Dalhousie University.
Dr. Patricia Lingley-Pottie Co-founder of Strongest Families Institute, President and COO of the Strongest Families Institute, and Assistant Professor of Psychiatry at Dalhousie University.
13-11-19 2:35 PM
Profile
Care across th Dr. Doug McMillan travels to India to share his expertise and help women and children
D 46
STORY John Tattrie | PHOTO John Sherlock
r. Doug McMillan became passionate about global health care during his first trip to India 25 years ago after he was invited to take part in a series of continuing medical education lectures. He began travelling to Africa and Asia to improve care for infants and mothers in those continents, and in doing so, has made some important links back to new ways to provide care and save more lives in Canada. During that first trip, Dr. McMillan, a neonatologist at the IWK Health Centre and professor of pediatrics at Dalhousie University, hoped to share the skills and experiences he had gathered as a Canadian doctor, along with his passion for helping people in their early years. “I like acute care, I like dealing with children in general, and in particular getting farther back in their development had great appeal. The contributions you make at that time in babies’ lives have such long-lasting effects,” he explains. In Canada, acute neonatal care has improved so rapidly that infants who would have died decades ago now survive and thrive. For example, very premature babies and babies on the lower end of the weight spectrum died at a higher rate. Key improvements are better assistance with breathing and the development of surfactant, a material that goes into the lungs to make breathing easier. Improved nursing care has helped as well. Dr. McMillan has been back to India a dozen times, most recently in the spring of 2013. That trip was led by his IWK colleague, Dr. Marsha Campbell-Yeo, a neonatal nurse practitioner and renowned researcher specializing in pain management. They worked with local doctors to improve neonatal care, especially through the All India Institute of Medical Sciences in New Delhi and the Post-Graduate Institute of Medical Education and Research in Chandigarh.
Izaak Fall 2013 - Winter 2014
Izaak Fall 2013.indd 46
13-11-19 2:35 PM
the globe The trip focused on nursing. “There was a gradual realization over the years that in order for the outcome of sick newborn babies to be most successful, a multi-disciplinary team was really required, which includes nursing,” he says. “I think it’s fair to say that Indian nurses probably do not have the same relative position in the society as do Canadian nurses.” In India, doctors are very capable and well trained, but nurses’ skill levels vary, as do their tasks. The core education is similar to that in North America, but focuses so tightly on the basics that nurses do not specialize in fields such as newborn intensive care. Ongoing professional development is also lacking. There are some online courses, but many nurses don’t have regular access to the Internet. As a result, Dr. McMillan and his colleagues are developing continuing professional development through in-services, a model that works well in North America. The existing Indian model is more of an apprenticeship. “We think there’s not only an opportunity, but a necessity to try and put more structure into this program.” Dr. McMillan says there needs to be more usage of educational programs by Indian nursing staff, so a greater number have more specific training in newborn care before they can start working with newborns, and on a continuing basis after that. The stakes are high. The World Health Organization reports that of the 2.9 million neonates who die in the first month of life annually, 30 per cent (876,000) are born in India. Neonatal deaths account for 50 per cent of deaths in children under the age of five in India. Many pregnant women get no prenatal care and the majority of mothers deliver at home in often-unsanitary conditions. Many women who make it to health centres don’t receive intensive neonatal care when needed. The issues Dr. McMillan is working on can improve those situations.
Izaak Fall 2013.indd 47
India has the highest rate of newborn deaths in the world reports The Times of
India, at 34 per 1,000 live births. That number dropped by 33 per cent between 1990 and 2009. A study published by W.H.O. in April 2013 found that in two tribal areas of India (Jharkhand and Odisha) the neonatal mortality was 48.6 and 45.4 per 1000 live births respectively.
Statistics Canada records infant mortality rates by region, but does not note ethnicity. However, the data suggests a large gap between the care provided to First Nations children and the children of European immigrants. Nunavut sees 15.1 deaths per 1,000 live births — a rate almost triple the national average. The Yukon has a rate of 8.5 per 1,000 and Saskatchewan 7.3 per 1,000. All areas have disproportionately high populations of Aboriginal Canadians. Globally, the rate is about 23 per 1,000 live births.
Deaths per 1000 live births Nunavut 15.1
Saskatchewan 7.3
Yukon 8.5
Globally 23
The problem is not confined to the developing world. The Conference Board of Canada ranked Canada 15th out of 17 peer countries in neonatal care by the Organization for Economic Co-operation and Development. “Certainly we have segments of our population who share some of the characteristics that would be going on in other areas of the world,” Dr. McMillan says. “Our system in Canada would cover a greater percentage of the population, although we still do have people in Aboriginal communities and in some other marginalized communities who don’t have the same effective access to these services. For the people that are affected — mother and baby — the issues may be very similar.” So Dr. McMillan is bringing global health care to Canada. In particular, he’s looking at a program he studied in Uganda. Called “Helping Babies Breathe,” it teaches simple, life-saving ways to help infants. It focuses on small communities far from health centres. In some cases, there may be a single care provider, or the mother alone. It’s a situation that applies to some remote Canadian communities. “It can literally be taught under a tree where there’s no electricity,” he says. “We would be looking to use these program models in selected areas of Canada.” A second lesson he’s learned internationally and brought back to Canada is that learning via hands-on experience or simulated experience is much more effective than learning from lectures. Dr. McMillan often travels on his own time and dime, and sometimes gets grants or other funding. Now working half-time at the IWK, Dr. McMillan has opportunity to further his work in global health care for the benefit of those far away and close to home.
47
See more with the Izaak app available for free through iTunes Newsstand or Google play
13-11-19 2:35 PM
48
Izaak Fall 2013 - Winter 2014
Izaak Fall 2013.indd 48
13-11-19 2:35 PM
In-flight critical care The IWK’s Life Flight Team speaks to Izaak magazine about taking their skills to the sky in this edition’s Getting to know the IWK
T
he IWK’s Emergency Health Services (EHS) Life Flight Team — a mobile critical care transport team of highly specialized nurses and respiratory therapists — saves lives on a daily basis. Travelling by helicopter, fixed-wing plane or ambulance across the Maritimes, the team is called during the most emergent cases and arrives as quickly as it can to assess, stabilize and transfer patients to the IWK.
49
Una Dewtie, EHS Life Flight obstetrical nurse, Jackie Croft, EHS Life Flight pediatric and neonatal critical care nurse, and respiratory therapist Gillian Hines, are all veterans in their fields and work as a team on flight missions to places such as Grand Manan Island and Campbellton, N.B.. They are a part of a larger group of in-flight nurses and respiratory therapists who travel the skies. The team chats with Izaak magazine about their work and what it`s like to provide tertiary health care in the air.
PHOTO (L-R) Una Dewtie, Life Flight obstetrical nurse; Gillian Hines, Life Flight respiratory therapist; Jackie Croft, Life Flight pediatric and neonatal critical care nurse. STORY Denise Surette | PHOTO Christian Laforce
Izaak Fall 2013.indd 49
13-11-19 2:35 PM
Photo: izli www.sandor.ca
What is a typical day like for the Life Flight Team?
50
Gillian: Because we always have to be ‘mission ready,’ we spend a couple of hours every morning checking the many bags of equipment, incubators, monitors and ventilators to make sure everything is present and in good working order and ready to go. Every mission is different, depending on whether it’s a neonatal mission, a pediatric mission, or an obstetric mission; the type of equipment we bring is different too. After this initial work is done and when not on a transport, we will help out in the hospital, primarily in the critical care areas. This also keeps our skills sharp. Una: I am based in the birth unit, so I’m normally with a labouring patient through the day. When my pager goes off, it means an obstetrical Life Flight call, which includes me; if it were a neonatal or pediatric call, the respiratory therapist and the pediatric/ neonatal critical care nurse would just go for that. I primarily go for bringing mums and babies to the IWK to deliver for whatever medical reason, or if they are in labour in a small community hospital and there wasn’t a physician or specialized equipment available.
How often do you fly? Jackie: The most we’ve done is three calls in a row in one shift. Of course, it is quite common to work well past our shift’s end. Gillian: And that’s for short missions because it can sometimes take a whole 12 hours to complete a transport, depending on where it is or how sick the patient is. Una: We will also occasionally take patients to Toronto. We have gone to Maine, Labrador, London, Ontario and Quebec.
Is it a different type of job being on the helicopter than being in the hospital?
don’t have the capacity for neonatal care; there is only the IWK and centres in Antigonish, Truro and Sydney that have full delivery rooms on a regular basis in Nova Scotia.
Gillian: It’s completely different.
Jackie: The goal is to bring the mother here, but when we go with Una, that is part of her assessment: are we going to make it back without the baby delivering en route? And if she and the online physician make the decision that we won’t, then we set up our equipment, send the pilots back for the incubator, and do the delivery there, stabilizing the baby prior to transporting them to the IWK.
Jackie: It’s ICU in a bag. We don’t travel light. We have to carry everything in every size, because we don’t know from one call to the next if we are going for a newborn baby, or a 16-year-old who’s bigger than us, or a woman who is pregnant. Gillian: It’s an extremely challenging environment, with its small work space, noise level, constant motion and sometimes extreme temperatures. It can go from being very hot in the summer to very cold in the winter. All of these factors can have an impact on an already very fragile patient. Also, the amount of responsibility as a team of two (sometimes three) is far greater than what you would find in any hospital setting. You don’t have as much support. More often than not, it’s yourself and your partner who are making the decisions and carrying out the necessary procedures. We are trained to do a lot more than what we may do in the hospital.
Do you travel hospital to hospital or do you go to accidents as well? Jackie: We go mostly from hospital to hospital. Gillian: There are a lot of rural hospitals that we go to, many without pediatricians or neonatal units.
Why did you want to become a member of the critical care transport team? Gillian: Who wouldn’t want to fly in a helicopter? Who gets to do that? It’s not without its challenges and stress of course, but when you come down to it, it’s a fun job to do. Una: Every mission I just feel the energy. I love my job. Gillian: It’s a small, close group, that’s another reason why I like to do this job. I like the closeness of our group. It’s a little like a family, you don’t always get along, but it’s a really nice camaraderie. You don’t get that in a big department, and when you are doing a transport that is particularly challenging or very stressful or emotional, it may be at three in the morning and you’re tired, you have a bond that you would never have with any other group you’ve worked with.
Una: And sometimes there is no obstetrician there, so we’ve been called there to do deliveries. The smaller community hospitals
Izaak Fall 2013 - Winter 2014
Izaak Fall 2013.indd 50
13-11-19 2:35 PM
Stay Connected with Nova Scotia’s most trusted news source delivered to your door, online or on the go Now offering bundled subscriptions including digital only access for as little as $0.43 per day! Visit TheCH.ca/subscribe_now
Izaak Fall 2013.indd 51
13-11-19 2:35 PM
Izaak Fall 2013.indd 52
13-11-19 2:35 PM