Izaak – Spring 2013

INTERNATIONAL OUTREACH

LOST IN TRANSLATION

DETECTIVES OF IMMUNOLOGY

IWK staff share knowledge and lend a helping hand worldwide

Researchers reveal cultural divide for First Nations children in pain

Brothers & colleagues unravel mysteries of the human immune system

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BREATHING SPACE Dr. Liane Johnson brings highly-specialized airway reconstruction surgery to the IWK

Logan needed mid-face advancement surgery.

We did that.

He needed care from just three months of age.

We did that.

So far, he’s had more than 20 visits to the OR. We did that.

Anesthesia machines helped us do it.

You did that.

When you donate to the IWK, you become part of everything we do.

We need you. Please give. Call 1-800-595-2266 or visit iwkfoundation.org to donate today.

June 1 - 2, 2013

A LOOK INSIDE THE IWK

COVER STORY

Breathing space Dr. Liane Johnson brings highly-specialized airway reconstruction surgery to the IWK Larkin Pottle was born four years ago with tracheomalacia, bronchomalacia, and subglottic stenosis of her trachea — conditions that severely restricted her ability to breathe on her own. Her parents, Rhonda and Brent Pottle, struggled with the tracheotomy that allowed her to survive the process. As she grew, breathing on her own started to look like a possibility; surgery to allow this to happen was the next step for the Pottle family.

By Tom Mason 1"(& t

CONTENTS Healing a heart

BY LEZLIE LOWE Thanks to the team at the only full-service children’s hospital in Atlantic Canada, Shyanne Bennett-Dubay, after a dramatic four-hour surgery to remove a buildup of tissue blocking her aorta, is now “good to go.”

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A legacy of love

BY MELANIE JOLLYMORE Dr. Goldbloom has made an indelible impression — not just on the IWK Health Centre, but also on Dalhousie Medical School, the Halifax community, children and families across the Maritimes, and on the practice of pediatrics.

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04 06

Welcome Contributors

RESEARCH: 08 12 14 18

Human touch International outreach Pediatric pain research Detectives of immunology

T E C H N O L O GY: 22 24

Made-to-order wheelchairs Simulation dolls provide real-world training

PROFILE: 26

Dr. Richard Goldbloom

Q&A: A day in the life of the IWK trauma team

BY LINDSEY BUNIN The IWK has the only certified level one pediatric trauma centre east of Montreal.

The trauma program provides a targeted level of care that is unique to the region.

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Dr. Susan Bryson

F E AT U R E S : 34 38 44 48

Airway reconstruction Open heart surgery Strongest families Day in the life of the IWK trauma team

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A growing partnership supporting world-class health care IWK Health Centre 5850/5980 University Avenue Halifax, N.S. B3K 6R8 iwkfoundation.org

Introducing the spring edition of Izaak magazine — an inside look at the team members, patients and families that are the heart of the IWK.

Beginning with the initial donation from Izaak Walton Killam’s wife, Dorothy, the IWK has grown into more than a hospital. It is a reflection of the care we take in our children’s health, the passion of the experts that flock to the IWK and the generosity of the donors and sponsors who support the ongoing research and ever-improving technology. Izaak is our tribute to the incredible work that is performed at the IWK every day.

The Chronicle Herald has a long history with the IWK, dating back more than a century.

Over the years we’ve grown and changed together. And now the association continues through Izaak magazine. The team at The Chronicle Herald is thrilled to present our second issue of Izaak — the stories of a nationally-respected Maritime institution, an institution that changes lives for the better, not only within our region but around the world through its quality care, teaching and research.

In partnership, The Chronicle Herald and the IWK are bringing more of the incredible stories of the health centre to you. As a community, we’re fortunate to have in our midst hundreds of professionals who create a world-class children and women’s health centre on the cutting edge of research and technology without ever losing the personal touch that makes the IWK so special.

Izaak magazine is a tribute to the professionals who make the IWK the place it is today, the founders and donors who have helped the IWK continue to aid women, children and youth across Atlantic Canada, and to the Killam family whose generous donation began what is now a legacy of care. As you read Izaak magazine you will see the IWK is among the best of its kind. I believe we should all be proud to have such a pillar of excellence in our little corner of the world.

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 magazine 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 Media Chairman and Publisher: Sarah Dennis President and CEO: Mark Lever Director, Herald Custom Media: 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 Executives: Tracy Skinner, Ken Tanner, Marie Reeves Contributors: Lindsey Bunin, Debra Wells-Hopey, Melanie Jollymore, Lezlie Lowe, Tom Mason, Jon Tattrie, Jim Vibert Photographers: Paul Darrow, Charla Jones, Scott Munn Cover Photo: Charla Jones © 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 the prior written permission from the publisher.

Sarah Dennis

The Chronicle Herald 2717 Joseph Howe Drive PO Box 610, Halifax, N.S., B3J 2T2 902-426-2811 thechronicleherald.ca Printed by: Advocate Printing

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WE BELIEVE IN THE IMPORTANCE OF INNOVATION AT THE IWK The Sobey Foundation, and the Sobey and Connors families, support the world class research that is being done right here in the Maritimes at the IWK Health Centre.

The Sobey Foundation is committed to the advancement of research to ďŹ ght and prevent illness and disease in your community, and across the globe.

Please join us in our dedication by giving generously to the IWK Health Centre Foundation.

Together, we are stronger.

A LOOK INSIDE THE IWK

John Sherlock

C O N T R I B U TO R S

LINDSEY BUNIN 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.

CHARLA JONES Charla Jones is a Canadian photojournalist based in London, England.

She was a staff photographer for The Toronto Star and The Globe and Mail. She now works as an editorial photographer in the Middle East, Africa, and Asia.

She has won numerous awards for photography and multimedia projects.

JON TATTRIE 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.

JIM VIBERT Jim Vibert has been making a living writing since 1977, when he joined The Chronicle Herald. He has also been a writer, communications and marketing strategist. Jim is currently senior writer and strategic counsel with Alidade, a Nova Scotia-based marketing/ communications agency.

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.

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.

TOM MASON 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.

LEZLIE LOWE 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.

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PAUL DARROW With more than 25-years experience as a photographer and editor, Paul Darrow has worked with some of the most prestigious news outlets including: The New York Times, Reuters, The Globe and Mail and the former Daily News.

SCOTT MUNN 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.

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Human touch New research reveals parents’ role in soothing the tiniest patients

Photos: Charla Jones

By Lindsey Bunin

pending day and night caring for some of the Maritimes’ smallest babies, it’s no wonder the health care providers in the IWK’s Neonatal Intensive Care Unit (NICU) have a certain affection for the wise words of Dr. Seuss.

“A person’s a person, no matter how small.”

For Emily and Greg Arthur, small means three-pound Avery and threepound-five-ounce Hannah, who made a surprise arrival at just 32 weeks gestation.

“Having the twins arrive ahead of schedule was shocking for us,” says Emily. The Halifax couple were admitted to the IWK in early February and knew before their babies had even arrived that they would all be spending time in the Health Centre’s NICU. “It’s not how you expect things to go, learning to care for our babies around monitors, procedures and other crying babies, but the nurses have been amazing and have really helped us become comfortable. We’ve been

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able to participate in every step of our babies’ care, which has helped so much.

“While it wasn’t the ‘plan,’ we’ve made the most of our time in the NICU. We got to know our babies and have learned so much from the qualified nurses at the IWK. We’ve felt very supported.”

“

We’ve been able to participate in every step of our babies’ care, which has helped so much.”

– Emily Arthur

When their daughters were just twodays-old, the Arthur family entered an IWK Health Centre study to measure the benefits of skin-to-skin contact (when the diaper-clad baby is held on the mom or dad’s bare chest)

on babies as they undergo routine medical procedures that may cause them to experience pain. “At first, we appreciated it as an opportunity to be close to our babies during the busy first days of their care. It also felt great to know we were helping them manage their pain by holding them close to us. We have continued enjoying skin-to-skin with our babies even though they don’t need many medical procedures anymore. My husband and I love having the time to bond with our girls.”

The benefits of skin-to-skin for NICU babies is just one of many studies that Dr. Marsha Campbell-Yeo is spearheading as part of her research to analyze and reduce pain in pre-term and term infants, as well as how pain can dictate development in these tiny patients. Dr. Campbell-Yeo is a full-time tenure track professor in the School of Nursing at Dalhousie University, as well as a clinical scientist and certified neonatal nurse practitioner who has been with the

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Emily Arthur holds her baby girls (l-r), Avery and Hannah, born February 3rd, 2013, at the IWK.

IWK Health Centre for 25 years. She received her Doctorate of Philosophy (PhD) in Nursing from McGill in February 2012. Through a number of research projects, she is currently investigating maternal-driven interventions to improve outcomes of medically at-risk newborns, specifically related to pain, stress and neurodevelopment.

“Despite the high rate of survival, we have noted that long-term outcomes aren’t always as positive,” Dr. Campbell-Yeo says.

“We wanted to see how these babies perceive and react to pain in an ongoing way. We have found that the stress of repeated medical procedures can have an adverse effect on development. I am very interested in finding a balance in how we incorporate families, to not only help these infants survive, but also to alleviate their pain and help them thrive as they grow.”

Through a number of studies, some of which are ongoing, Dr. Campbell-Yeo is examining maternal driven interventions in newborn development. Her series of studies have looked at how infants react and deal with pain in a variety of scenarios — skin-toskin with mom, skin-to-skin with dad, and skin-to-skin with a non-maternal-related woman and skin-to-skin with twins. “We have compared responses in a number of different sample groups to try and determine which factors — memory, smell, warmth — have the biggest impact,” Dr. Campbell-Yeo explained. “We have recorded a significant reduction in behavioural pain scores and noted that babies recovered faster using these techniques that involve closeness to another person. Using current and newfound methods, the IWK is one of the leaders in researching how well we manage pain and the trend toward integrating families.

“Over the past 10 years, there has been a significant change in care in NICU team-driven interventions and an exponential adjustment in how we manage pain.

The IWK’s NICU has actively taken on the challenge to recognize the importance of family-driven interventions. The department has acquired new equipment and resources for care providers and families to help them work together in this mindset.”

While the research is ongoing, Dr. Campbell-Yeo has already determined a number of outcomes that are being incorporated into future care techniques in the NICU. “We know that mothers and families can reduce pain,” she says. “We know that mothers and parents almost unanimously say that they feel better about parenting and less stressed when they’re given the opportunity to take part and advocate for their babies.

It’s a triple win — baby’s pain and stress are reduced, parents are happier and it’s cost effective when parents can take on a larger

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Research nurse co-ordinator, Kim Caddell (left) and Dr. Marsha Campbell-Yeo, Clinical Scientist of NICU (right).

caregiver role for their own children in a hospital setting.”

This philosophical change in care methods is the precursor to a physical change that is imminent for the IWK’s NICU. Dr. Krista Jangaard is Medical Director of the Neonatal Intensive Care Unit at the IWK Health Centre. Working as a co-leader with the nursing manager, Darlene Inglis, they strive to improve upon quality, safety and patient-care delivery in the NICU. Dr. Jangaard serves as the medical liaison between the physician group and the hospital organization to assist in facilitating a seamless balance between

patient care and research studies. Additionally Dr. Jangaard is the division head of Neonatal-Perinatal Medicine at Dalhousie University. At the IWK, Dr. Jangaard is one of several neonatologists working with Dr. Campbell-Yeo in this shift in care methods.

“The NICU is, and needs to be, highly technological, but it becomes more and more evident over time that technology is only part of the equation,” says Dr. Jangaard. “More than ever, we are thinking more broadly about the development of the babies we are treating and the ways we can make their environment more suited to their needs. We

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Research Nurse Co-ordinator, Kim Caddell (left) and Dr. Marsha Campbell-Yeo, Clinical Scientist (right) meet Laquisha Wolfe and her son Brett.

can’t turn their environment into a uterus — a uterus is dark and wet and provides constant protection and connection with the mother.

What we can do is approximate the supports as best we can to make the baby feel as comfortable as they did on the inside.”

A new, single-room model will allow families to have valuable one-on-one time with their babies in controlled, customizable circumstances, such as lights on or off, to suit the infant’s needs, explained Dr. Jangaard.

“These rooms aren’t just for convenience.

Single rooms mean less light and sound pollution, so each baby can get what they need.”

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The NICU is, and needs to be, highly technological, but it becomes more and more evident over time that technology is only part of the equation.”

– Dr. Krista Jangaard

While planning for the NICU’s physical changes, Dr. Campbell-Yeo and her colleagues will continue to conduct studies to uncover how best to manage infant pain and promote best-case scenario development for NICU babies. “As researchers, it is incumbent upon us to be sure our research gets translated back into the field. We have a number of champions in the NICU at the IWK who have helped to move this information forward and enable staff to take an active role and sustain the philosophical change that helps us manage pain in the best possible way.”

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International outreach

TANZANIA EQUADOR/BOLIVIA/PERU Dr. Ken Wilson has been on at least 35 missions for Operation Smile, an international charity providing free surgeries to children born with facial deformities such as cleft palette or cleft lip. Dr. Wilson has performed surgeries in Ecuador, Bolivia, Peru, India, Cambodia, Vietnam, China and in many African countries. He recently received the Queen’s Diamond Jubilee Medal for his outstanding volunteer leadership. (www.operationsmile.ca)

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In 2007, Dr. Tony Otley and Dr. Beth Cummings worked in a hospital in Arusha, Tanzania for six weeks. The pair taught and provided pediatric and adult clinical care. They also taught in the MicroResearch program in Kenya in 2012. Dr. Cummings has been a member of the Board of Directors of World Vision Canada since 2004, where she advocates for global child health.

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IWK staff share a wealth of knowledge and support worldwide The IWK is a familiar institution in the Maritimes, delivering world-class care to our women and children every day. Taking this initiative around the world has become a mission for many physicians and researchers at the IWK — bringing health care to those who may not otherwise receive it.

CHINA Dr. Doug McMillan is participating in the Canadiandeveloped educational program, Acute Care of at Risk Newborns (ACoRN) in China, which is improving the ability of health care workers to recognize and treat sick and at risk newborn babies.

THAILAND UGANDA/KENYA/TANZANIA In collaboration with the Dean of an African medical school, Dr. Noni MacDonald and Dr. Robert Bortolussi launched “MicroResearch,” a tool to improve child and maternal health outcomes in East Africa. Since 2008, MicroResearch has trained over 250 health care workers with the aim to improve infant immunization, prevention of mother-to-child transmission of HIV, extremely high mortality rates for newborns and child malnutrition. (www.microresearch.ca)

Dr. Allen Finley, Director of the Centre for Pediatric Pain Research at the IWK, works around the world on projects focusing on children’s pain, including in Thailand.

Dr. Finley is a co-founder of the ChildKind International Initiative (childkindinternational.org), a global program recognizing hospitals that make children’s pain prevention and treatment a priority.

ildogesto / 123RF

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Lost in translation

Researchers reveal cultural divide for First Nations children in pain

By Jim Vibert

wo children arrive at the emergency room in Anytown, Nova Scotia. Both are boys; about eight years old, they come in and go through triage at the same time. One’s pain is obvious. His sobs climb to a heart-wrenching wail. The other silently huddles so close to his mom he is almost unseen. The first boy is taken in to the doctor. The second waits quietly.

Aside from their behaviour, the one noticeable distinction between the two is race. The boy seeing the doctor is Caucasian.

The child still waiting is Mi’kmaq. Many — in and outside the health care field — will say that difference is irrelevant. One child’s pain is obvious. The other shows few, if any, signs of distress.

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But research by the IWK’s Centre for Pediatric Pain Research indicates demeanour is not a reliable sign of the intensity of the Mi’kmaq child’s pain. Most health care providers are trained and culturally predisposed to respond to expressions of pain that, while common in non-natives, are uncommon among First Nations people.

Just as the clinical staff ’s perceptions are shaped by what they saw and heard, the Mi’kmaq mother and son perceive their place in line for what it is: discrimination — not overt racism — but a bias rooted in ignorance of the culture, traditions and experiences of Native Canadians. It erodes trust and leaves Native people feeling “apart from” the health care system.

“Cultural traditions and ceremonies like the Sundance and Sweat Lodge teach that pain is to be endured and serves a purpose.

Colonization generally, and the residential school experience in particular, ingrained and cemented that stoicism in children,” says Dr. Margot Latimer, lead investigator on the Understanding Pain in Aboriginal Children research program at the IWK’s internationally-recognized Centre for Pediatric Pain Research.

“The pain of physical, sexual, spiritual and psychological abuse in residential schools was absorbed by the Native children.

They learned not to show pain. When those charged with their care inflicted pain, the children wouldn’t give their abusers the sat-

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Community Research Nurse Julie Francis (middle) speaks with students Landon Paul (left) and Ryan Toney (right) at Eskasoni Elementary & Middle School, about their pain.

Photos by Charla Jones

isfaction, the power,” says Dr. Latimer. That stoic forbearance has been passed down from generation to generation.

The IWK research team knows there are higher rates of painful conditions among Aboriginal children, so the research will move on to determine whether it is “picked up and treated” somewhere in the health care system.

It is a journey Dr. Latimer and the IWK-Eskasoni team are determined to see to the end and to positive results. An Associate Professor in Nursing, Dalhousie’s Faculty of Health Professions, Dr. Latimer has already incorporated some of her findings in her teaching and hopes the research will eventually help design culturally-relevant tools that clinicians can use to reduce Aboriginal children’s pain.

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Untreated pain in children and young people? The outcomes can be detrimental — missed school, learning difficulties, self-medication, addiction, depression, mental illness, suicide, the list goes on.”

– Dr. Margot Latimer

Shelley Young, the research project coordinator, says the residential school legacy lives on in the way elders, parents and now children experience “western” institutions, including health care. “They often feel discrimination and that they are not taken seriously. There is a lot of mistrust.” The community has seen researchers come and go with no benefit to the people, she says, but the Pediatric Pain Project is different. “If the people see a benefit, they will be more apt to open their doors.”

With Young, a Mi’kmaq from Eskasoni on the research team, and with active support from Sharon Rudderham, Director of the Health Centre in Eskasoni and the centre’s team of nurses, including Julie Francis, the mistrust dissipated and trust grew.

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Landon Paul’s drawing of how he sees pain.

Eskasoni, Nova Scotia’s largest Mi’kmaq community, is where the research project began and remains centred, but the work has since spread to other communities in the Maritimes and beyond.

Dr. Latimer began to question the prevalence, diagnosis and treatment of pain in Aboriginal children when she noted, in collaboration with her clinical research colleague and Director of the Centre for Pediatric Pain Research Dr. Allen Finley, that of 800 children from across the Maritimes treated in the IWK’s Pediatric Complex Pain Service, two were Aboriginal. Across Canada, the numbers were equally distorted. “Whole communities of kids across the country may not be getting the help they need.”

The imbalance is all the more glaring, given that negative determinants of health pervade Aboriginal communities. Poverty, substandard and over-crowded housing, high drop-out rates, substance abuse and limited access to health care due to distance and travel limitations are endemic to First Nations’ communities.

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“

We know that chronic illness in First Nations communities is almost three times what it is in the general population.

We know Aboriginal kids have higher prevalence of painful conditions, more injuries, more painful ear, musculoskeletal and dental issues.”

– Dr. Margot Latimer

what it is in the general population. We know Aboriginal kids have higher prevalence of painful conditions, more injuries, more painful ear, musculoskeletal and dental issues,” says Dr. Latimer.

First Nations’ people are the fastest growing population in Canada, with a birth rate that is almost twice the Canadian average. In Eskasoni, 50 per cent of the population is under 19. Without early access

to health care, problems that plague First Nations’ people will only increase. Dr. Latimer knows the answer is not an attempt to change the way First Nations’ people express themselves. There has been too much of that already. The answer lies in removing the barriers that separate health care providers from understanding Aboriginal needs.

“The high rates of pain-related conditions interfere with Aboriginal children’s ability to grow, learn and achieve the same outcomes as other kids. There appears to be a disconnect between how we are trained as clinicians to assess pain and how Aboriginal children actually conceptualize and express it.

“Native people are storytellers. They are descriptive — we (western-trained health professionals) want to know about the pain, its intensity, from zero to 10. Aboriginal children don’t necessarily think in those terms,” says Dr. Latimer, adding that in some Native languages, one word translates into several numbers.

Sharon Rudderham says Aboriginal people close off their emotions unless they are in a safe environment and when a Mi’kmaq child sees a non-native health provider for

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Nurse Julie Francis takes the height of Margaret Sylliboy at the Eskasoni Community Health Centre.

the first time, there is a trust issue. It is not a “safe place.”

Bringing the two perspectives together is a good beginning, according to Dr. Latimer. Mi’kmaq Elder Albert Marshall developed the principle of “Two-Eyed Seeing.” Etuaptmumk in the Mi’kmaq language.

It means learning to see the strengths of Indigenous ways and knowledge with one eye, and the strengths of Western ways and knowledge with the other eye. Learning to see with both eyes, together, will benefit all.

“We have a lot to learn from First Nations people,” says Dr. Latimer. “They have very meaningful cultural icons such as the talking stick that essentially represent how important it is to listen and certainly the Two-Eyed Seeing perspective implies they want to exchange ideas with the western philosophies.”

Shelley Young sees hope in connecting western medicine and traditional Native medicine. “We need the connection and trust there, to understand one another.”

Rudderham credits health care providers, health authorities and governments with making some attempts to address the com-

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They often feel discrimination; that they are not taken seriously.

There is a lot of mistrust.”

– Shelley Young, Research Project Coordinator

plex issues facing First Nations people today but believes there is not sufficient commitment from all of these areas to really make a meaningful impact. She asks how you take a child to the doctor when you have no car or insurance for the car, or why would you even go when the last time you went you were not heard?

But she too is hopeful the research into Aboriginal pediatric pain could lead to better care for Native children and more. Evidence, she says, is critical to getting attention from government, particularly when it comes to health services.

“The research Dr. Latimer and the others have done will give us evidence to height-

en awareness, develop new mechanisms, lobby for additional health care services, better access and culturally appropriate care.”

Without change, the research team fears a dismal future.

“Untreated pain in children and young people? The outcomes can be detrimental — missed school, learning difficulties, self-medication, addiction, depression, mental illness, suicide, the list goes on.” says Dr. Latimer.

“Other issues and problems are likely to be perpetuated. That includes dropping out of school at an early age; alcohol and other substance issues; mental illness and increased conflict with the justice system.

The devastating cycle that began in the residential schools continues,” says Shelley Young, research project coordinator. “When they were younger and went to the doctor, they weren’t heard. They couldn’t tell their story. As children get older they will learn to live with chronic pain or just give up.”

For Dr. Latimer the hope comes from within the Aboriginal community itself where people are inspired, inspiring and determined to move their people forward. “There is a great strength in the communities.”

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Detectives of immunology Brothers and colleagues Drs. Andrew and Thomas Issekutz unravel mysteries of the human immune system

Photos by Charla Jones

ay after day, they work diligently in their lab and at their clinic at the IWK Health Centre. From their quiet demeanours and shy smiles, you’d never know these two colleagues are brilliant detectives of immunology, aiming to uncover the causes and cures of autoimmune diseases and defects in the immune system.

Immunology is a branch of biomedical science that covers the study of all aspects of the immune system.

“The immune system consists of cells and antibody proteins and is our defence force against infections,” says Dr. Thomas Issekutz, the current Chief of Immunology at the IWK.

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“It must identify infectious invaders (viruses and other germs) namely the ‘foes’ and attack and eliminate them, while sparing our own cells and organs, namely the ‘friends.’

Without this system, infections would overwhelm us.”

Dr. Andrew Issekutz, Pediatric Immunologist at the IWK, works alongside his brother Thomas.

“The immune system protects us extremely well but in the course of a normal lifespan, it may make a mistake and wrongly attack our own cells. This can cause an autoimmune disease which affects eight to 10 per cent of the population. The more problematic forms (of autoimmune disease) start in

children,” says Andrew.

“It often involves considerable bed-side and laboratory investigative work to establish when the immune system is not functioning or misfiring, so either not protecting us or behaving harmfully,” says Andrew.

Often mistaken for twins, Andrew and Thomas have been close clinical and scientific colleagues for more than 30 years, and friends their whole lives. “In my career I seemed to follow him (Andrew) everywhere,” laughs Thomas.

But he’s not joking. Andrew, the older brother, attended Dalhousie University, so did Thomas. Andrew went to the University of Toronto for further study, so did Thomas.

Immunologist Thomas Issekutz checks Reid MacDonald (2) during a routine appointment at the IWK. Reid received a bone marrow transplant from his sister.

Immunologists and brothers (left) Thomas Issekutz and Andrew Issekutz (far right) with RN in immunology Karen Chestney at the IWK.

When Andrew decided to build his career at the IWK, so did Thomas, after a two-year training detour to Harvard University.

This did not happen because Thomas is a follower, quite the contrary. Their similar paths unfolded because they both have a passion for immunology, and they have made it their mission to unravel medical mysteries.

However, few people realize the groundbreaking, global impact of their work.

The Issekutz brothers have an incredible record of helping children and their families through discoveries that have a world-wide impact, and by providing direct care and expertise to children and their families here in the Maritimes, families such as the MacDonalds of Lower Sackville, N.S. Their story starts in November 2011.

At five-and-a-half months, Reid MacDonald was not like most healthy infants.

“He had a cold, and then we thought it was the whooping cough, then double pneumonia,” says Debbie Bowie-MacDonald.

“Something wasn’t right — I guess they say a mother knows.”

Reid was taken to the IWK’s emergency department by ambulance on November 10.

He was admitted to the Pediatric Intensive Care Unit (PICU) and required urgent, supportive care, oxygen and investigations to determine why he got so sick from what started as a “common cold.”

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Thomas and Andrew soon met Reid, his parents Debbie and Jeff, and Reid’s older sister Rory Mae. Eight days later, they diagnosed Reid with Severe Combined Immune Deficiency, or SCID, the most severe of all immune deficiency diseases, due to development failure of the immune system.

Debbie remembers every single date and every moment. “Everything happened so fast, it was terrifying. Especially when we found out the only chance for Reid’s survival

“

We love to see our research come to fruition to benefit our patients; it’s very fulfilling to positively impact people in need of help.”

– Dr. Andrew Issekutz

was a bone marrow transplant. Every step along the way the Issekutz brothers were amazing, so supportive, so knowledgeable.”

The family received the best possible news on December 6. “Reid’s older sister Rory Mae was a perfect match,” says Debbie. “At the age of two, she saved her brother’s life.”

“You can completely rebuild the immune system of a child with a bone marrow transplant,” says Andrew. “After a successful transplant, Reid will be good to go for the rest of his life.”

The transplant was a success. Today, Reid is almost two years old, his sister is three — they are healthy, and full of smiles. Reid occasionally visits the IWK for vaccinations and to see Thomas for monitoring of his new immune system.

Reid is happy. He is blowing kisses, smiling and giving people high fives, all while his sister is giggling nearby. “Reid is quite the character. One time he tried to give Dr. Issekutz (Thomas) a fist pump, but Thomas had no idea what to do. It was cute,” says Debbie.

“Immunologists really do have the cutest patients,” says Thomas as he smiles at Reid.

“Thomas and Andrew are both so wonderful, and so impressive. They are kind, they care, and are so humble,” says Debbie. “We are extremely grateful for all they’ve done for our family.”

From compassionate and exceptional care for patients, to internationally recognized accomplishments, Thomas and Andrew have excelled in both. They have these combined accomplishments by being trained as “Clinician Scientists.”

“Making a diagnosis of deficiency or malfunction of the immune system is heavily dependent on laboratory testing,” says Andrew. “This is how research expertise connects clinical expertise to patient diagnosis and ongoing patient care.”

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“We use research findings to make new discoveries, and our patients allow us to take the discoveries to the next level for developing and applying better treatments,� says Thomas.

Clinical immunology specialists, such as Drs. Thomas and Andrew Issekutz, are few.

For example, the comprehensive immunology care at the IWK is not available in several major health centres in Canada and the US, many larger than the IWK. Remarkable patient experiences and research advances have always been part of the Issekutz’s professional lives. Thomas contributed to the ground-breaking development of an antibody, which is currently the most effective treatment for Multiple Sclerosis in North America and Europe.

The Issekutz brothers also recall the mid-1980s as one of several highlights in their careers.

During their research of cytokines, “the hormones of the immune system,� they focused on one in particular, tumour necrosis factor (TNF). They demonstrated that TNF is a key player in recruiting immune cells from blood into inflamed tissues including into joints affected by arthritis. It is these cells that cause swelling, pain and damage to the joints in children and adults with rheumatoid arthritis, a typical autoimmune disease.

Drs. Thomas and Andrew Issekutz demonstrated the benefit of neutralizing TNF in experimental arthritis and showed what role TNF played; this helped support the evolving concept that excessive and inappropriate production of TNF was a key element in human arthritis. “This work led to the discovery that TNF is involved in several other autoimmune diseases, including inflammatory bowel disease,� says Thomas.

This knowledge was then used by the pharmaceutical industry, and within less than a decade patients were greatly benefiting from therapies blocking the excessive TNF produced in joints of children with juvenile arthritis and in adults with rheumatoid arthritis. Thanks in part to the original contribution of the Issekutz brothers, such therapy is now the mainstay for treatment of serious arthritis and is benefitting millions of patients world-wide.

Thomas and Andrew are part of an international network of immunology centres, they have received numerous awards for their scientific contributions, and between them they have published hundreds of original scientific papers and delivered many invited lectures and presentations nationally and internationally.

Why do they love their work? They are saving lives by working to identify children

with immune system problems and solving these problems by applying the latest clinical and scientific knowledge. “Even if a disease is considered rare, but it affects you, it can impact 100 per cent of your and your family’s life,� says Andrew. “We love to see our research come to fruition to benefit our patients, it’s very fulfilling to positively impact people in need of help.�

Predictably, and sincerely, the Issekutz brothers take the emphasis off of themselves. “The support at the IWK from the department of Pediatrics, our clinical and research colleagues, allied health professionals and IWK Research services have greatly assisted us in our activities,� says Andrew.

Thomas adds, “We had very supportive parents, have supportive spouses, and we’ve received excellent training, so there are many people we credit with our ability to make a small difference in this world.�

From changing the lives of patients and families here in the Maritimes, to making discoveries that touch millions around the world, the Issekutz’s do what they do because they can and they care.

Tomorrow, they will be in their lab and teaching future scientists. The next day, they will see patients and teach future physicians.

The quiet detectives of immunology carry on.

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RESEARCH | SPRING - SUMMER 2013 t21

Made-to-order independence How a customized wheelchair program provides quality of life for hundreds of kids 11-year-old Taya and occupational

therapist Julia Gates.

By Debra Wells-Hopey

aya is spirited, bright and patient as she describes the way she gets around in the world.

“When I move my head left, I turn left,” she says enthusiastically, even though she must have explained this to people many times over. “When I move my head right, I go right. And when I move my head back, I go straight forward.”

At 11 years-old, Taya has Cerebral Palsy and is a long time visitor to IWK Specialty Seating, a service within the IWK’s Rehabilitation Service. The service offers assessment and provision of customized seating and positioning equipment, including seating inserts, wheelchairs, special-needs strollers, bath seats, car seats and toileting aids.

Julia Gates, Occupational Therapist in Specialty Seating, and Nancy Cashen, Operations Manager for Rehabilitation Services, have known Taya since she was three years old. “This program is designed to assist children who can’t walk on their own, most often due to Spina Bifida, Muscular Dystrophy or Cerebral Palsy,” explained Gates. “Children are referred to the program as early as 14 months and stay with us until they are ready

T

Photos by Paul Darrow

to transition to adult health care.”

Gates explained that although children this young are able to still use a stroller, it means they are dependent on others to get around — at an age when they want to start exploring the world on their own.

“Independence is an essential part in a child’s growth and development,” added Cashen.

Specialty Seating at the IWK consists of Cashen and Gates, as well as a Specialty Seating Technician, David Beattie, and a Funding Coordinator. Together, along with the family, this team determines what kind of wheelchair would be best for the child.

“We take many factors into account,” says Gates. “For instance, a level of hand mobility is essential for manoeuvering a manual wheelchair, but not necessary for a power wheelchair.”

The amount of seating support required is a complex assessment that is completed by the occupational therapist and takes into account the disease prognosis, planned orthopaedic surgeries, maintenance of skin integrity, comfort, functional abilities and wheelchair skills. All children

22 t SPRING - SUMMER 2013 | TECHNOLOGY

are different, and the amount of support required could be viewed as mild, moderate, or complex. Generally, seating for a mild support is not custom made, and may be arranged throughPhoto: a local wheelchair supplier Paul Darrow in the community. The seating for children who require moderate or complex support is custom made by the Specialty Seating Service at the IWK. There is a workshop onsite at the IWK where Beattie employs his expertise. For specialized seating, an impression is made on a mould that resembles a large bean bag. This shape can then be transferred to a 3D digital model on the computer. These images are sent via email to the United States where the only machine of its kind in North America manufactures the seat. It is then shipped to the IWK for fitting.

As for Beattie, he has been with the hospital since 1989. He was familiar with an Occupational Therapist who suggested he may enjoy the work. Considering Beattie has remained in the program for more than 24 years, it certainly is a great fit.

“This is the perfect job as far as I’m concerned,” says Beattie. “I get to work with my

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hands and help people simultaneously. The work is challenging and rewarding.”

Beattie’s workshop looks much like any other, yet very unlike anything you expect to see in a hospital. There are various materials stored: pieces of repurposed wheelchairs, three industrial-sized sewing machines, neoprene for upholstering, two band saws, a table saw and a wealth of tools.

“When we first see someone we measure them for a seat using a fitting frame.

From these measurements I construct a seat out of foam and plywood and I upholster it. I also adjust and repair wheelchairs as needed.

I’d say one of my favourite parts of my job is going on the mobile clinics. Several times a year we go to Cape Breton and the Annapolis Valley. At times we go to schools here in HRM, or even homes.”

Gates explained that the first order of business when a child needs a wheelchair or seating device is to meet with the family and get to know their needs.

“This initial meeting is so important,” says Gates. “It’s when we first get to meet the child; establishing their needs, administering a postural assessment, taking measurements,

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David Beattie and Julia Gates hard at work.

then making recommendations.”

“Recently we had a child who needed a new power wheelchair. We had two styles and tried them both in the home to see which operated better in that specific environment. It needs to work in the child’s daily life.”

Having the right wheelchair and seating can make all the difference in the world when it comes to quality of life — kids need to participate with classmates, explore their environment and have a sense of independence.

“When a child receives their first wheelchair it is often a period of growth for both the parents and the child,” says Gates.

Taya’s mother Christine knows all about it. She has been taking Taya to Specialty Seating and working with the team for eight years.

Taya was only three when she received her first wheelchair and met the group at Specialty Seating. She was outgrowing a stroller at this point, not only in a physical way but also as a growing child her needs were changing — she had a desire to be independent, to be able to explore the world on her own.

“Although she was small enough to

still use the stroller, it no longer seemed to be the appropriate choice,” explained her mom. “The chair was so much better for her posture, and allowed her to be eye level with her peers. Her diaphragm was also better supported which made her breathing and therefore her speaking so much better.”

Taya was born with cerebral palsy. She enjoys her grade five class and likes to read — especially Harry Potter books. She also swims and uses a sit ski at Wentworth ski hill.

“I have both a manual and a power chair,” explained Taya. “I use the power chair at school. Some places are easier to use a wheelchair in than others though.”

Although Taya drives herself around by using head movements, the wheelchair must be steered remotely by a device similar to a joystick when it is being loaded into the family van. Apparently, according to a laughing Taya, dad is an expert at it, while mom, who is quick to agree, isn’t as deft.

Taya was eight when she got her first power chair. She started at six years old “training” with a joy stick, but it was a lot of work and a head array began to make more sense.

The family visits Specialty Seating about once a year.

“To a certain extent, the chairs grow with her. Especially the manual chair, which she will have for about eight years,” explains Christine. “The power chair needs changes or replacing more frequently.”

As for cost, the family is fortunate that both Christine and her husband have good health care plans, however, they still certainly incur costs. The head array alone cost $10,000, which is as much as the chair. Then there are the costs of converting the family van with a manual ramp that has to be lifted and unfolded. A power system is even more expensive. This is the reality for families with a wheelchair.

Taya gets to continue to visit the team at Specialty Seating until she is ready to transition to adult health care. “I can’t say enough about the program and the staff,” says Christine. “When your child is first diagnosed, you’re in a daze. You don’t know where to go or what to do. They have helped us immensely, even in emergency situations.”

One such situation was during a weekend when Taya’s chair was accidentally run over, crushing one of the wheels. It meant facing a whole weekend propped up or in bed. Not a great thought for a young, energetic girl like Taya. Christine contacted Gates and Beattie who were more than willing to go into work on a Saturday to get the chair fixed.

Says Taya, “Dave and Julia are extremely nice people and I would come to them all my life if I could.”

And there’s no higher praise than that.

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Creating reality How simulation provides real-world training for IWK teams #Z 5PN .BTPO t 1IPUPT CZ 4DPUU .VOO

Dr. Martha Linkletter (left) and Dr. Jayani Abeysekra are both Pediatric Residents at the IWK.

24 t SPRING - SUMMER 2013 | DEPARTMENT

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“

It’s important for us to make things as realistic as possible.” – Kathy Johnston

n 18-month-old boy lies motionless on the emergency room gurney, an array of tubes and sensors protruding from his small, broken body. A monitor streams vital signs to the team struggling to get his heart working again. The story goes that a few hours earlier the boy was playing with his father at a construction site somewhere in the Annapolis Valley and accidentally touched a live wire.

He’s in critical condition.

For the team working to resuscitate the boy, these details are critical to the medical treatment they are preparing for.

Just like any other day — except that the boy is a simulation of a real child.

The paramedic who saved the ‘boy’s’ life the first time explains the situation to the assembled doctors and nurses. The doctors go to work, searching for a pulse, calling out blood pressure readings and oxygen saturation levels. Drugs are added to the IV tube: insulin, glucose, calcium gluconate and a shot of epinephrine. The defibrillator is set for 10 joules, pads are placed on either side of the child’s chest, everyone backs away from the table and the chest stiffens slightly as electricity flows. Another round of epinephrine, another defibrillator jolt, bumped up to 20 joules. The doctors and nurses look concerned. Without warning an intensive care doctor arrives in the emergency room to assess the patient’s stability so that he can take charge. It’s the paramedic again, but this time he is playing the role of an intensive care physician.

Dr. Adnan Alhadlaq is multi-talented.

Today he’s playing the roles of both paramedic and intensive care physician in a hyper-realistic simulation in the IWK’s Emergency Department. In simulation parlance he’s what is known as a “confederate.” In real life, Dr. Alhadlaq is a fourth-year pediatric resident

A

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at the IWK. The patient on the gurney is a disturbingly life-like manikin, complete with a computer-controlled pulse, a heaving chest and a battery of realistic vital signs. Built to represent a six month old, the doll has played everything from an extremely large premature baby to a small three-year-old toddler in the course of its service to the hospital.

Medical simulations have become one of the most effective training methods used throughout the Woman’s and Children’s programs at the IWK. The hospital uses a variety of high fidelity simulators, basic manikins and part-task trainers to aid in training health professionals and learners, preparing them to deal with emergencies, complex cases and unusual scenarios. The manikin collection includes a newborn, an infant, a five-yearold child, and a woman who gives birth.

The part-task trainers consist of a variety of body parts — backs, chests and arms — that allow students to practice everything from delivering babies to administering needles.

The most advanced, known as “high fidelity” simulators, can draw breath, bleed, talk, even change skin colour and express pain.

Kathy Johnston is in charge of today’s simulation. Before the group of residents and medical students arrived, she carefully created wounds on the manikin’s hand and foot with scar wax and a tube of fake blood, then wrapped it in blankets and a neck brace and inserted an intubation tube — something the paramedic would have done in a real life situation. During the procedure she operates the computer, sending the doctors a succession of rapidly changing vital signs in response to their treatment procedures. Johnston and her colleague, Stephanie Watton, are the coordinators of the IWK’s simulation program.

“It’s important for us to make things as realistic as possible,” she says. “Even though

everyone knows that it’s not real and these are just props, it still gets pretty intense in here. It gets your heart racing.”

Introducing confederates adds another layer of realism to the exercise. Sometimes they play distraught parents or confused first responders. In one recent trauma simulation — a child suffering from a gunshot wound — a confederate playing the shooter suddenly burst into the emergency room — a graphic reminder to everyone that security is also a real world consideration.

The IWK simulation program is relatively new, says Watton, but it has quickly become a major part of the hospital’s training regimen, used for everything from teaching new medical students the basics to hospital-wide emergency Code Blue drills. “It’s expanding on a daily basis,” she says. “Nurses, doctors, medical students, physiotherapists, respiratory therapists, the IWK life flight team — health care professionals across the board are using it to improve their skills.”

Watton says the simulations are a powerful team-building exercise, allowing every member of the team to understand everyone else’s strengths and weaknesses in a setting that doesn’t actually put a living patient at risk. It’s a chance to second guess and to try new things. Watton and Johnston collaborate with physicians and other health professionals to develop many of the scenarios from real cases and try hard to program in plenty of unexpected twists. “It was the airline industry that began using this form of training,” says Watton, “but health care has also really adopted simulation in a big way.”

Today’s simulation ends when Dr. Emma Burns takes over. She’s the physician in charge of the scenario. About 15 other people are in the room, including the senior residents and nurses who actually took part in the procedure and a group of medical students who observed. Dr. Burns’ voice immediately snaps everyone back to reality.

“We had a little difficulty with the defibrillator today. Let’s review it first so that everyone knows how to operate it.”

She runs down the operation of the machine, then leads most of the participants to the debriefing room to discuss the scenario.

A lively debate ensues. One junior resident admits that she didn’t agree with the second shot of epinephrine; she was detecting a pulse and didn’t feel that it was necessary, but she was hesitant to speak up and contradict the fourth-year residents.

“This is the kind of situation where you need to speak up if you’re not comfortable with something,” says Dr. Burns. The resident nodded in agreement.

A sign hangs on the wall behind her, a saying from Confucius: “Tell me and I’ll forget. Show me and I’ll remember. Involve me and I’ll understand.”

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A LEGACY OF LOVE The incredible life of Dr. Richard Goldbloom

By Melanie Jollymore Photos by Scott Munn

In the beginning Caring for children is in Dr. Richard Goldbloom’s blood. The IWK Health Centre’s first physician-in-chief was no more than 12 years old when he made his first rounds through a children’s hospital. “My father used to take me with him to check on patients at the Montreal Children’s Hospital,” recalls Dr. Goldbloom, noting that his father was the first pediatrician in Montreal. “He shared many remarkable patient stories with me… that, and living in quarters adjacent to his clinic, made an indelible impression on me.”

Dr. Goldbloom has since made his own indelible impression — not just on the IWK Health Centre, but on Dalhousie Medical School, the Halifax community, children and families across the Maritimes, and on the practice of pediatrics across Canada and around

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DEPARTMENT | SPRING - SUMMER 2013 t27

for every child. “They set the tone for how people would be treated at the IWK,” he says.

“They approached everyone as a complete human being, with warmth, caring and genuine interest, and made them feel valued.”

Reaching out across the province

Contributed photo

Dr. Goldbloom chats with a family outside the IWK in the 1970s.

the world. It all started with a single phone call. “In 1967, Dr. Chester Stewart, who was dean of Dalhousie Medical School at the time, called me out of the blue,” Dr. Goldbloom says. “He told me he was in Montreal for the sole purpose of recruiting me to head up the new children’s hospital they were getting ready to build in Halifax. It was dramatic — the value he placed on the appointment taught me a lesson in recruitment that has served me well!”

Dr. Goldbloom, who was teaching pediatrics at McGill University and practicing at Montreal Children’s Hospital, had never dreamed of re-locating to Halifax. But Dr. Stewart’s approach was so compelling, he decided he would at least make an exploratory visit. “I remember my wife, Ruth, who was from New Waterford, Cape Breton, saying to the kids, ‘Don’t worry, your father will never move to Halifax’,” he recounts with a chuckle.

“It was one of the very few times she was ever wrong!”

It didn’t take Dr. Goldbloom long to see he was being offered a rare opportunity to make an enormous impact on children’s health care. “I watched the Izaak Walton Killam Hospital being built,” recalls Dr. Goldbloom, who spent three years in the antiquated Halifax Children’s Hospital before the new facility was ready. “It was incredible to see it taking shape… there was nothing like it in Canada at the time.”

Recruiting the team While modern facilities are important, Dr. Goldbloom knew that people are the real key to a great organization. He still considers 28 t SPRING - SUMMER 2013 | PROFILE

his prime legacy to be the team he brought together in his years as physician-in-chief and director of research at the IWK — and head of Dalhousie’s Department of Pediatrics — from 1967 to 1985.

“As was common at the time, there were no full-time physicians at the hospital… we had several pediatricians practising in the community who did ward service,” he explains.

“But I knew that if we were going to provide excellent care and a solid training ground for students and residents, we had to bring in fellowship-trained specialists in fields like cardiology, respirology and endocrinology.”

Dr. Goldbloom set about these recruitments with zeal, keeping in mind the lessons he had learned from Dean Stewart as he approached promising young candidates.

“I had no expectations when I came to Halifax for my first interview,” recalls Dr. Bob Bortolussi, who joined the IWK in 1978 as the centre’s first infectious diseases specialist and later became its first vice president of research. “I was so blown away by Richard’s openness, congeniality and positive approach, I called my wife and told her she better come to Halifax to see.”

As Dr. Bortolussi tells the story, Ruth Goldbloom immediately took his wife under her wing, making her feel comfortable and welcome. “Richard and Ruth worked as a team,” he says. “They realized they were recruiting not just a clinician or a researcher but a whole person — and their family — as well.”

Dr. Bortolussi also describes how the Goldblooms hosted a Christmas party for the children of the hospital staff every year, knew all the children by name, and bought gifts

As he settled in to his role at the IWK, Dr. Goldbloom became increasingly preoccupied with the idea that kids with problems shouldn’t always have to travel to Halifax.

“There were only two consultant pediatricians practising outside of Halifax at the time,” he says. “I didn’t think families should have to travel more than 30 miles from their home, so I set about creating a regional pediatric program.”

Dr. Goldbloom approached a recently trained pediatrician and nun, Sister Dr. Nuala Kenny, to see if she would be willing to provide pediatric consults across the province.

“We took a road map and a compass set to a 30-mile radius, and drew circles around all the major towns,” he remembers. “Amazingly, all the circles touched… we had the whole province covered!” The Sisters of Charity bought Dr. Kenny a station wagon and she was off.

“She travelled the province from end to end… I used to call her our Roamin’ Catholic,” jokes Dr. Goldbloom. “She saw more and more kids as the years went by and saved many families what would have been difficult trips to the city.”

Creating a family-centred environment Dr. Goldbloom applied his family-oriented philosophies to create a new style of caring inside the hospital. “I wanted to cultivate a different attitude toward parents than was the norm,” he explains. “Parents used to be called visitors and were the only visitors allowed. Promptly at 5 p.m., there would be an announcement on the loudspeaker that visiting hours were over and it was time to leave. Just like that. I insisted that parents be referred to as parents, that people other than parents be allowed to visit kids in the hospital, and that visiting hours be extended to all hours of the day and night.”

In the 1980s, Dr. Goldbloom took family-centred care several steps further, introducing a six-bed care-by-parent unit.

Here, nurses taught parents technical skills that enabled them to provide much of the day-to-day care to their child. This unit no longer exists, because the concept of parents being closely involved in their child’s care has since been extended across the entire hospital. “It’s all part of becoming more supportive, more caring, and more educational,” Dr. Goldbloom says.

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Milestones in the life of Dr. Richard Goldbloom 1924

Born in Montreal, Quebec

1946

Married Ruth Schwartz

1949

1964

1967

1986

Received Doctor of Medicine degree from McGill University

Appointed an Officer of the Order of Canada and named Sir Arthur Sims Commonwealth Travelling Professor

1992

Published first edition of Pediatric Clinical Skills

Appointed to McGill’s Faculty of Medicine

1997

Received the Ross Award, the highest honour of the Canadian Paediatric Society

1999

Received the FNG Starr Award, the Canadian Medical Association’s highest award for outstanding achievement

2001

Appointed Chancellor of Dalhousie University

2003

Appointed editor of the influential periodical, Pediatric Notes

2004

Received a Special Achievement Award from the American Academy of Pediatrics for contributions to child literacy

Moved to Halifax with Ruth and their children to become physician-in-chief at the soon-to-be-built Izaak Walton Killam Hospital for Children and head of the Department of Pediatrics at Dalhousie Medical School

The Chronicle Herald Archives

Dr. Goldbloom circa1977.

1976

Elected president of the Atlantic Symphony Orchestra

1975

Became founding president of the Halifax-Dartmouth Waterfront Development Corporation

Leading the practice of pediatrics While shaping an open and caring culture at the IWK, Dr. Goldbloom wielded a growing influence on pediatric medicine in Canada and beyond. “His impact has rippled across the country and generations of pediatricians,” says Dr. Sarah Shea, who completed her pediatric residency at the IWK in the 1980s and has stayed on as a staff pediatrician ever since. “I still hear colleagues bring up points from his teaching, and his annual talk at the Canadian Pediatric Society meeting is standing-room-only. People love to listen to him — he is funny and engaging yet his insights are profound.”

Dr. Goldbloom has travelled the world as a visiting professor and literally wrote the book on pediatric clinical skills. In fact, Pediatric Clinical Skills, which he edited and which includes his chapters on history-taking and clinical examination, has become an essential text across North America and around the world. The fourth edition, available in English, French and Greek, was published in 2010.

Although he is a prolific author — having published more than 120 articles on top of several books and many chapters — Dr. Goldbloom most loves teaching face to face.

His favourite method was to find parents on the ward and ask them to help him demonstrate proper interviewing technique in front of the medical students and residents.

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1978

Presented with the Queen’s Jubilee Medal

1983

Appointed chairman of the Rhodes Scholar Selection Committee (Maritimes)

2006

Stepped down from senior administrative positions at the IWK Health Centre and Dalhousie Medical School but continued teaching, practising and leading in the field of pediatrics

Honoured at the official opening of the Dr. Richard B. Goldbloom Research and Clinical Care Pavilion at the IWK Health Centre

2011

Officially retired from clinical and teaching duties

2012

With his wife, Ruth, received the Maritime Philanthropy Awards Lifetime Achievement Award and the Symphony Nova Scotia Concertmaster Award for their outstanding leadership and contributions

1985

1985

Co-founded The Discovery Centre in Halifax, Nova Scotia

PROFILE | SPRING - SUMMER 2013 t29

“

Parents used to be called visitors and were the only visitors allowed. Promptly at 5 p.m., there would be an announcement on the loudspeaker that visiting hours were over and it was time to leave. Just like that. I insisted that parents be referred to as parents, that people other than parents be allowed to visit kids in the hospital, and that visiting hours be extended to all hours of the day and night.”

– Dr. Richard Goldbloom

IWK Auxiliary, Kermesse and Telethon, have also helped to raise millions of dollars for research. Together, the Goldblooms’ impact on research has been immense.

Encouraging early literacy

“The parents did some of the very best teaching,” Dr. Goldbloom says. “I would ask them, at the end of the interview, to tell us what they most want from a doctor. And their answers were always the same: they want a doctor who gives them enough time and speaks to them in words they can understand. Coming straight from parents, this had quite an impact on students.”

Dr. Goldbloom urged trainees and colleagues to ask parents to repeat their understanding of the conversation at the end of the appointment — “You can’t assume that nodding heads mean they understand you!”

— and to follow up by telephone to see how the child is doing. And, he advised them to listen closely and observe carefully to tap into parents’ and children’s unspoken concerns.

“I’ve always said that our most important job is to alleviate anxiety,” he says. “Even diagnosing and treating an illness is a means to that end.”

Working alongside Dr. Goldbloom for many years, Dr. Shea witnessed his almost-magical ability to soothe countless times. “He can charm a child like no one else, and exudes a warmth that inspires trust,” she says. “A mother once said to me, ‘As soon as I shook his hand, I knew everything would be okay.’ That’s very powerful. It’s hard to live up to the standards he set, but we try.”

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Laying the foundation for research As the IWK’s first director of research, Dr. Goldbloom had the foresight to convince the board of directors to set aside at least 20 per cent of the undesignated funds raised each year for research. “It was 20 per cent of a small amount at that time, but the impact was huge,” notes Dr. Bortolussi, whose research program flourished thanks to this policy. “Stable support for research helped us recruit top clinicians, establish lab space and launch proof-of-principle studies which in turn led to grants. Richard was our mentor every step of the way.”

Dr. Goldbloom marvels at the transformation of the IWK’s research effort — from a single $10,000 grant in 1967 to more than $14 million in outside funding in 2011-2012.

“We decided early to focus on a few key areas of strength,” he says. “These have grown into world-leading research efforts in infectious diseases, genetic diseases and pediatric pain.”

In honour of Dr. Goldbloom’s contributions as physician-in-chief and director of research, the IWK Foundation established an endowed research fund in his name in 1995.

Now valued at almost one million dollars, this endowment provides ongoing support to research at the IWK. Ruth Goldbloom’s tireless efforts over the years, through the

Among Dr. Goldbloom’s proudest achievements is the Read to Me! program, which he launched in 2002 with support from the Nova Scotia Department of Education, Halifax Youth Foundation, IWK Auxiliary, CBC and the Government of Canada.

“One of our graduate students had observed that children respond to words even in infancy,” recounts Dr. Goldbloom, “and we knew there were households with fewer than 10 books where no one was reading to kids.

It occurred to me that we could put books in the hands of every family in Nova Scotia for all time, if we could raise the funds to endow the program from day one.” Read to Me! continues to present books and literacy resources to parents within 24 hours of birth at all 11 hospitals in the province where babies are born — in English, French, Arabic, Chinese and Mi’kmaq.

“Success is hard to measure, but we know parents in Nova Scotia are reading to their children significantly more than parents in other provinces,” he says. “It’s a powerful bonding activity that has a major influence on children’s development and future lives.”

Heartfelt recognition A list of the awards and accolades that Dr. Goldbloom has received — on his own and with his wife, Ruth — would fill several pages. The Goldblooms have both been named officers of the Order of Canada, and Dr. Goldbloom is a recipient of the Queen’s

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Jubilee Medal, the Canada Post National Literacy Award and many other awards. But when asked what recognition he cherishes the most, he responds without hesitation, “Letters from kids!”

Some patients he has stayed in touch with for years, including a teenager from Prince Edward Island who was in his care from early childhood. “Even though she has a serious, incurable illness, she has never let it interfere with her life,” he says. “I’ve learned so much from children like her.”

He was moved beyond words when this girl appeared, as a special surprise, at the event to dedicate the Dr. Richard B. Goldbloom Research and Clinical Care Pavilion. “She spoke so eloquently about the care she had received, it was a moment I will never forget.”

It was Dr. Bortolussi who proposed that the IWK’s spacious new facility — opened in 2005 — be named in honour of Dr. Goldbloom. “I felt we should name the pavilion after Richard, because his name had been so closely linked with the IWK in the hearts and minds of the community for so many years,” Dr. Bortolussi says. “And because he is respected as a leading pediatrician around the world, I knew the name would resonate

far and wide. He didn’t know our plan until the last minute… I think he was quite overwhelmed by the gesture.”

Carrying the torch Although Dr. Goldbloom officially retired from his practice and teaching duties at the end of 2011, he continues to attend grand rounds at the IWK and works closely with the IWK Foundation as an advisor and ambassador. He is still on the board of Read to Me! and continues to be involved with Symphony Nova Scotia, of which he is an honourary director. In the midst of all of this activity, he has been writing a personal memoir, tentatively titled A Lucky Life.

In 2012, he bade farewell to his beloved wife, the late Ruth Goldbloom, who was his constant source of strength and a tour de force in her own right. As a pair, the Goldblooms made an everlasting impact on the IWK, Halifax and the Maritimes, with their passionate commitment to the wellbeing of children and families.

Their own children and grandchildren carry on the family tradition. As Dr. Goldbloom proudly notes, two of his three children are physicians (one a pediatrician, one a

psychiatrist), and the other is a teacher. One of his five grandchildren recently became a pediatric endocrinologist and, although it’s early to tell, he sees bright futures for his great grandchildren, who number five and counting.

If Dr. Goldbloom has any advice for parents raising children today, it’s to make time for eating together as a family and to read to your kids every day. “These are two of the most powerfully protective steps that parents can take,” he says. “They immunize against a wide variety of health and social problems.”

One of Dr. Goldbloom’s very few regrets is that he never met Mrs. Dorothy Killam, who provided $8 million to build the new children’s hospital in memory of her husband, Izaak Walton Killam, a legendary Nova Scotia businessman. “The dear lady died shortly before I arrived so I never met her… but I heard lots of stories,” Dr. Goldbloom says. “She was a commanding woman with strong ideas about the kind of hospital she wanted to establish.”

She, and Izaak, would have been very happy with Dr. Goldbloom’s legacy.

HOME AWAY FROM HOME PROGRAM

Through our partnership with the IWK Health Centre, we provide a furnished apartment for patient’s families who require an extended stay.

And we’re happy to help.

Killam Properties Inc is one of Canada’s largest residential landlords and offers a variety of apartments and locations throughout Atlantic Canada and Ontario.

killamproperties.com 866.453.8900

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PROFILE | SPRING - SUMMER 2013 t31

Q & A with Dr. Susan Bryson A global expert on Autism Spectrum Disorder shares how far treatment has come, and how the future looks for families dealing with ASD

Photo: Scott Munn sychologist, researcher and ASD expert, Dr. Susan Bryson, has spent many years helping both children and the IWK improve treatment and change the outlook on autism.

After receiving her PhD in Clinical Psychology from McGill University, Dr. Bryson has been a faculty member in the Departments of Psychology at Dalhousie University, Guelph University and York University, and was an Associate Scientist at the Hospital for Sick Children (HSC). She is the Founding Director of the Autism Research Unit at HSC and the Autism Research Centre at the IWK Health Centre, and has helped the IWK leap ahead of the pack in terms of early diagnosis and treatment for young children with autism.

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Q) You’ve studied Autism Spectrum Disorder (ASD) for many years — how has research helped change what we know about the disorder?

Dr. Bryson: It’s really changed how we think about the disorder. For one thing, we now know that genetics plays a huge 32 t SPRING - SUMMER 2013 | Q & A

role in the cause of ASD. We know that it’s not genetics alone though. For example, the concordance rate in identical twins is not 100 per cent. Just because one identical twin has ASD it doesn’t necessarily mean that the other one will. This fact tells us that there must be environmental factors as well.

But environmental factors could include the pre-natal environment. We also know that from some research, for some children at least, something happens very early in pre-natal development, even during the first month of gestation. That may not be in all cases, but certainly in some cases.

Q) What is different about the way we treat ASD today?

Dr. Bryson: Twenty years ago it was abysmal. There was virtually no treatment except for medication and medication doesn’t treat ASD, just some of the symptoms like aggressiveness. Now there are intensive behavioural treatment programs that we use with very young children with

ASD, and they are making a huge difference with outcomes. We have a fabulous early intervention program for children in Nova Scotia now. As of two years ago, every child with ASD has access to treatment. Probably a main difference with our program at the IWK is that the parents are very involved, they get trained in the treatment as well, so they can carry it on during the day. What we are doing in most cases is helping the child communicate. Often the children have behaviour problems in part because they are having so much trouble communicating.

Q) What are some common myths around ASD? Dr. Bryson: One of the really common myths is that people with ASD don’t like other people and that they try and avoid them.

That’s true for some people with ASD, but in most cases they are frightened of things they don’t know. To say that they don’t want to be around people is wrong — it’s just that they’re frightened of unfamiliar things, like strangers.

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Once they get to know the person it makes a huge difference. In fact, in all the surveys of adolescents and adults with autism, they say the most important thing to them is having friends. Most of them have trouble forming friendships, but that’s what they identify as the most important thing to them. It’s one thing to say they don’t want friends, but it’s another thing to say they don’t know how to go about getting them. I think the other myth is that in the past people tended to think there was nothing we can do to help these kids, and we have shown over and over again that treatment really makes a big difference.

Q) What role does research play in better understanding ASD? Dr. Bryson: I think it’s been huge; I can’t even tell you how important it’s been. In the past, the accepted folklore was that ASD was a psychologically-caused disorder. There was no evidence for it - it was just certain people’s opinion. That assumption was so destructive to so many families. Once we started doing research it became clear that this was malarkey.

Q) What new or surprising findings have come to light in the past few years?

Dr. Bryson: We have been doing an

infant sibling study where we look at infants that have an older sibling with ASD. We are studying them because we know they are at a higher risk, and this could help us study the earliest signs of ASD, in order to start treating children even earlier. We have also been able to establish the likelihood that parents could have a second child with ASD. This is really important because we didn’t have good data — people were just using theoretical estimates, which was four to eight per cent.

We have been able to show the likelihood of recurrence is closer to 20 per cent.

Q) What is the prevalence of ASD in the Maritimes?

Dr. Bryson: As far as we know, it’s the same as elsewhere; it’s about one person in 88. That’s a lot of people, a lot more than people would realize.

Q) How do IWK patients and families benefit from your research?

Dr. Bryson: I think it’s mostly the early intervention, because we’ve also been studying the outcomes of our early intervention for pre-schoolers. Our outcomes are as good as the best reported in the literature, which is really exciting. This makes me really optimistic that we could also do something

really good for young adults because we’ve had so much success. We’re so good at identifying ASD really early that I’ve now taken the lead on developing a treatment for toddlers because we’re identifying so many children that are less than three years of age.

We’re doing a study of its effectiveness at the IWK for two years. Any child who comes to the IWK now who is under three and they are worried about ASD, they send them to me.

If I’m also worried, we ask the family if they would like to participate in our treatment for toddlers. We’re feeling really encouraged about it. It’s so nice to be able to offer the families something. It takes a lot of stress off the family.

Q) Anything else about your research that’s important for the IWK and our communities?

Dr. Bryson: We really learned how important it is to listen to parents, when parents are concerned about their babies or their children. That’s a big change in the field.

That’s a good thing. It’s a relief for them; it’s so important for them not to be dismissed and for people to be able to validate or invalidate their concerns, one way or the other. I may not think it is ASD, but I can understand they have real issues that they need help with.

HELPINGS recipes for a good cause Helpings is a collection of recipes and heartwarming stories about the personal impact the IWK has on families around the Maritimes. Purchase a copy of Helpings for $10 at any RBC Royal Bank branch in New Brunswick, Nova Scotia and Prince Edward Island.

All proceeds donated to the IWK Foundation.

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Proud partners: RBC, Revolve, Sue Siri Photography, Bounty Print

Q & A | SPRING - SUMMER 2013 t33

Breathing space Dr. Liane Johnson brings highly-specialized airway reconstruction surgery to the IWK

Photos: Charla Jones

By Tom Mason

arkin Pottle was born four years ago with tracheomalacia, bronchomalacia, and subglottic stenosis of her trachea — conditions that severely restricted her ability to breathe on her own. Her parents, Rhonda and Brent Pottle, struggled with the tracheotomy that allowed her to survive the process. As she grew, breathing on her own started to look like a possibility; surgery to allow this to happen was the next step for the Pottle family.

Tracheotomies are one of the most vital surgical procedures in modern medicine, but they are actually very old. The surgery is depicted on Egyptian artifacts more than 5,000 years old and described in Sanskrit texts from around 2,000 BC. A tracheotomy involves placing a tube through an incision in the neck to bypass the nose and mouth and allow air directly into the trachea. Every year they save countless lives; but for most young children who have undergone the procedure, a normal life doesn’t begin until the tube has been successfully removed. That can prove to be difficult.

That’s where Dr. Liane Johnson comes in. Dr. Johnson is a pediatric airway surgeon at the IWK, the only doctor in Atlantic Canada to perform a specialized form of airway reconstruction surgery in children. The innovative technique involves using the child’s own rib cartilage to expand the scarred airway to attempt to achieve a normal diameter airway (air passage). Because the technique relies on tissue from the child’s own body, there are no issues with rejection.

Dr. Johnson learned the complex procedure during a two-year fellowship at

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the Cincinnati Children’s Hospital Medical Center under world-renowned pediatric otolaryngologist Dr. Robin Cotton, who pioneered the technique 30 years ago. She has already performed about 20 of the surgeries at the IWK. She says the procedure offers the patient and family a degree of independence that is life-changing.

“With proper patient selection, they can be very successful surgeries,” she says. “It’s rewarding to see the results.”

“

If you do the surgery too early the consequences can be devastating.”

– Dr. Liane Johnson

Larkin Pottle’s conditions were serious and because she needed constant medical care, Larkin could never be left alone. This left her family with the task of learning how to take care of her properly at home. Any kind of mucus plug or blockage of the tracheostomy tube could also be disastrous. It was a 24-hour-a-day job for Rhonda and Brent, one that required plenty of professional help.

“We had to get professional respite care at night so that we could get some sleep,” says Rhonda.

Along with the basic skills that every new mother learns — feeding Larkin and changing her diapers — Rhonda quickly became adept at a number of medical techniques, including suctioning a tracheotomy

tube and performing mouth to trach resuscitation. If Larkin accidentally removed the tracheostomy tube, the Larkin family had to be prepared to perform CPR. “It’s not that difficult. Anyone can learn to do it as long as they’re not afraid of it,” says Rhonda.

Larkin was approaching her second birthday when doctors discovered she was breathing through her nose and mouth around the tracheotomy tube. It was good news. It meant the airway was growing and the problem was correcting itself. But scar tissue had formed, and Larkin’s airway needed to be repaired before the incision in her trachea could be permanently closed.

Rhonda began the search for a doctor who could do the surgery. She and her husband had already made plans to travel from their Stephenville, Newfoundland home to Cincinnati to meet with Dr. Cotton when they heard about the IWK program. “I heard there was a doctor in Halifax who had studied with Dr. Cotton and was using the same procedure.”

The Pottle’s first visit to Halifax was a little disappointing. Dr. Johnson examined Larkin and told the family to come back in three months for reassessment as it was too soon for the operation. “That’s the hardest thing to say to parents: ‘She’s not ready,’” says Dr. Johnson. “But if you do the surgery too early the consequences can be devastating.

The last thing I want to do is set up a spiral of failure. Sometimes it’s just safer to wait.”

When the day finally came, it was a long one. The Pottles spent eight hours waiting

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Dr. Liane Johnson uses a ventilator in order to monitor Larkin Pottle’s airway. Larkin was born with a blocked airway and received airway reconstruction surgery last year.

Before

“

We had to get professional respite care at night so that we could get some sleep.”

Rhonda Pottle cuddles her daughter Larkin Pottle as they wait for Larkin’s appointment at the IWK.

– Rhonda Pottle

This picture was taken at the level of the vocal cords showing complete obstruction of the subglottic airway, just beyond the vocal cords.

After

This picture was taken just below the vocal cords showing a completely open subglottic airway following placement of rib grafts.

for Larkin’s surgery to end. Dr. Johnson constructed two rib grafts to expand the damaged airway, placing them carefully in the trachea below the little girl’s voice box. When it was over she was sedated and ventilated in the intensive care unit for nine days, but after stent removal she was soon breathing on her own. It was a success.

There have already been many milestones for the Pottle family. Larkin had a bout of the flu during the winter – a normal rite of passage for most four-year-olds, but one that would have brought on a serious medical crisis before the surgery. This time it was no big deal, says Rhonda. The family left for a Florida vacation in March, the first family trip since Larkin was born that didn’t centre around a medical appointment. Most importantly, Larkin is gaining a measure of independence that she didn’t have before.

She’s getting ready to attend preschool and is making friends her own age for the first time.

“She loves other kids,” says Rhonda.

“Finally she can be a kid herself.”

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Larkin looks at the plastic fish and bubbles.

Dr. Liane Johnson uses a scope to view Larkin’s airway.

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COSTCO WHOLESALE IS A PROUD SUPPORTER OF THE IWK As Costco Wholesale’s business has expanded, so has their support of Children’s Miracle Network. In the Maritimes, Costco Wholesale has cumulatively given over $1 million to the IWK Health Centre Foundation.

From April 29 to June 2, Costco’s warehouses will steadily fill with familiar red and yellow paper balloons. Proceeds from these balloons in the Maritimes will be donated to the IWK Telethon for Children that will be broadcasting live June 1 & 2 on CTV. Please give generously and support the hundreds of Maritime families who rely on the IWK each year.

Healing a heart A child’s journey through open heart surgery

By Lezlie Lowe

ime moves fast in the operating room (OR) at the IWK. And cardiac surgeon Dr. Stacy O’Blenes wastes none of it. At 8 a.m., Shyanne Bennett-Dubay lies on the table under an ocean of green sheets, an exposed square foot of her skin a beacon under the OR lights. Dr. O’Blenes carefully cuts a four-inch lateral hole down Shyanne’s chest and buzzes through her sternum. A retractor pulls the bones apart.

And there it is. Shyanne’s yellowish-brown, tennis ball heart. A flapping fish, powerful and rhythmic.

“With some of the stuff, it’s pretty high intensity,” says Dr. O’Blenes. “The best thing I can do is my job. Try to make smart decisions without being emotional.”

The OR is a collision of the otherworldly and the everyday. In one direction, expansive windows overlook Gorsebrook Hill, where this 12-year-old, in another life, might have spent the afternoon sledding.

Look the other way and there’s her thumping heart. The IWK is the only full-service children’s hospital in Atlantic Canada and

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Photos by Scott Munn

that’s why Shyanne is here, two plane rides away from her Stephenville Crossing, N.L., home. Today’s four-hour surgery will remove a buildup of tissue that’s blocking her aorta, the large tube that moves oxygen-rich blood from the heart to the body.

A second surgeon arrives. Dr. Camille Hancock-Friesen’s arms drip from the scrub sink. A nurse positions a metal stool on the floor opposite Dr. O’Blenes and Dr. Hancock-Friesen steps up to join in. The room pulses — nurses, anesthesiologists, fellows, residents. Doctors materialize then disappear or join in. There are about 20 surgeries a day in the hospital’s 10 operating suites.

A nurse places Shyanne’s thymus gland into containers for testing. Two perfusionists crew the Seussian heart-lung machine. The table talk is about Downton Abbey, carbs, the weather. There’s no music, only a ringing phone and the machines that go “Ping!”

By 9:18 a.m., it’s time to stop Shyanne’s heart.

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Shyanne recovers while her mom waits by her side in the Pediatric Intensive Care unit.

DEPARTMENT | SPRING - SUMMER 2013 t39

Knowing her limits Shyanne’s friends are up ahead. They’re sauntering to the playground near her family’s three-bedroom townhouse, like they do most days after their Grade 7 classes at St. Michael’s School. But Shyanne can’t keep up. It was the same last summer, just before she turned 12.

Shyanne got a pedal bike for grading. But every time she pushed off, she would get light-headed, feel pain in her chest and emptied of breath. She only used it three times.

“It all started when she was six months old,” her father, Michael Dubay, says. A doctor listened to Shyanne’s heart and heard a murmur. “We didn’t know what to think,” Michael remembers. Shyanne was seen every three months, and then once a year. “She can do regular gym,” her mother, Krystal Dubay, says, “but she knows her limits.

They always told us it wasn’t getting any better and it wasn’t getting any worse,” says Michael. Until now.

A plane ride to St. John’s in November confirmed what Shyanne’s worsening breathlessness was telling her. She would need to have the muscular ridge in her aorta removed. Open-heart surgery at the IWK. “Are you ready to have this surgery?” Krystal asked her daughter.

“Yes, mom.”

Pre-op Shyanne smiles from her railed bed in Room 7 of the pre-op ward. Surgery?

Whatever. She’s in Halifax for the first time.

The IWK alone employs three times more people than live in her two-doctor Western Newfoundland town. Shyanne’s biggest pre-op concern was hitting teen accessories Shangri-La Ardene for all the One Direction bric-a-brac she could get her painted nails on. (She scored a shirt, a pillow and a watch graced with the teen band’s likeness. Her nine-year-old sister, Isabella, will be jealous.

Her two-year-old brother, Nicholas, won’t.)

She bought red hair dye and put it in for the surgery. She almost convinced her mom to let her get her nose pierced. “She told me she wasn’t nervous,” Krystal says. “She was going to sleep and she wasn’t going to feel anything.”

Surgeon Stacy O’Blenes sees it all the time. “She was pretty stoic,” he says. “She didn’t seem to have too many concerns. Kids are funny. Sometimes they are not fazed by it at all.”

“Nice and still” An hour and a quarter later, Shyanne’s lungs lie dormant in her chest. Her heart is stock-still. Maureen Young and Steve Taylor keep her alive instead. “This is her heart right now,” Taylor says, pointing to the Los Angeles interchange of tubes and valves and clamps and bags circulating all three litres of Shyanne’s blood.

40 t SPRING - SUMMER 2013 | FEATURE

Taylor and Young are perfusionists.

This is their machine. Taylor pulls out a clear fluid-filled bag. Normosol. It’s mostly potassium; a high dose halts any beating heart. “We stopped it pretty good,” says Taylor. “Nice and still.”

Taylor tests Shyanne’s blood-oxygen levels and ensures the Heparin they’ve given her to slow clotting is working. If her blood clots normally — the way it might get sticky a few minutes after a knee scrape — it can gum up the heart-lung machine or, worse, clot her brain. Taylor finishes the tests and then starts them all over again. “We are kind of paranoid people.”

Perfusionist Maureen Young monitors Shyanne’s heartbeat — represented by a flatline at the moment, just like in the movies — and her blood pressure. She checks how full of blood the heart is and controls Shyanne’s temperature, which she can cool from 36.5ºC to a shivering 18ºC to protect her brain if the surgery runs long. With all this hustle, time flies.

“Other times,” Young says, “it stands still.”

O’Blenes’ focus is simple. He has a quiet, empty heart in front of him. He cuts into Shyanne’s aorta.

The waiting Michael and Krystal are in the Pediatric Intensive Care Unit waiting room, which fits one family, a phone for OR nurses to deliver updates, and a fish tank. They’re waiting for the surgery to be done. But, really, they’re waiting for a “normal life,” says Krystal. For a time when she won’t worry Shyanne will have a heart attack at the playground.

Krystal picks up her black purse and wanders to Tim Hortons. Then the gift shop, where she and Michael buy a stuffed animal for Nicholas. “A lot of times we didn’t know where we were going and one of the nurses would come up and ask us if we needed help,” Michael says. “We would tell them we were a little lost and they would show us the way to go. The way they talk makes you feel relaxed. It makes you feel welcome.”

“

It all started when she was six months old.”

– Michael Dubay, father

Shyanne’s parents wait with her before the surgery.

“Still amazing” “Ok, re-warming,” says perfusionist Maureen Young. The aortic blockage has been cut out and it’s time to get Shyanne off by-pass. Her heart hasn’t stirred for the better part of half an hour. Young and Taylor bring up Shyanne’s temperature and start re-filling her heart with blood. “I’ll slowly do less and less,” Young says, “and the heart will do more and more. Like letting the clutch out.”

And then, it just happens. The flatline becomes an even mountain range. Shyanne’s heart is back. A rhythmic flapping fish. “We’ve been doing this for quite a number of years,” Young says, “and it is still amazing.”

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Large monitor displays close-up view of Shyanne’s procedure.

Surgery in progress.

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FEATURE | SPRING - SUMMER 2013 t41

Drs. Stacy O’Blenes (left) and Camille Hancock-Friesen perform open-heart surgery on Shyanne Bennett-Dubay to remove a buildup of tissue blocking her aorta.

“

The best thing I can do is my job. Try to make smart decisions without being emotional.”

– Dr. Stacy O’Blenes

Recovery Krystal takes the call in the waiting room. Shyanne’s surgery is done, faster than planned. All that’s left is for Dr. O’Blenes to wire shut her sternum and close the incision.

The pinging monitors have followed Shyanne into the Pediatric Intensive Care unit. Krystal has bought a magazine with One Direction on it, but it stays in the bag. Even in the netherworld of half-consciousness, Shyanne’s brow furrows in pain. She moans for Krystal, and makes a barely decipherable plea for her mom to crawl into the bed with her. Krystal looks up at the two intensive care nurses, 42 t SPRING - SUMMER 2013 | FEATURE

helpless. The only one here who doesn’t understand that her mom can’t navigate the tubes and wires, can’t touch her chest, can’t possibly snuggle, is Shyanne.

Good to go She gets her phone out the next day and logs onto Facebook. There, Shyanne finds her classmates and confidantes. “She’ll be able to keep up with them now, without getting pains in the chest and light-headed,” Michael says. Soon enough, she is up walking with her mom to the hospital Tim Hortons. And five days after her heart was

stopped and repaired, Shyanne is discharged.

Her heart will have to be monitored annually, O’Blenes says, to make sure the blockage doesn’t redevelop. But for now, Shyanne’s good to go.

“Everything is all doin’ good,” says Michael, one day after her release. “Her chest is still tender, and when she coughs it still hurts a little. She says she’s not feeling any pain.

The Tylenol, she doesn’t hardly have to take it.” Best of all, she’ll be able to use her bike once it’s warm.

But summer’s a little ways off. And time moves slowly when you’re 12.

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Shyanne gets her phone out and logs on to share her news.

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Partners in parenting How the Strongest Families program is bringing hope and help to families around the world

By Jon Tattrie

shley Todd was just 19 when she had her first child, so raising him as a friend came more naturally than raising him as a parent.

“I never really had a relationship with my mom, and I wanted to have that with Sean.

Instead of being a disciplinarian, the one who made the rules and followed through with those rules, I became a friend,” says Todd.

That approach was easy in the shortterm, but hard long-term. “We used to argue like we were brother and sister, and that’s bad,” she explains. “I was looking for Sean and I to have a better relationship with each other. I wanted to fix that so he knew I was

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Photos: Scott Munn

the parent and he was the child.”

Her son Sean says it was a tough transition. “I didn’t like it. Every time I asked for something, she was like, ‘Here, take it.’ And now when she’s a parent, she’s like, ‘Nope, you can’t have it,’” says Sean, now 11.

Sean was also diagnosed with attention-deficit disorder and his grades were slipping, so Todd sought professional advice. Todd is a phlebotomist at the Queen Elizabeth II Health Sciences Centre and a single mother to Sean and nine-month-old Bree; the thought of waiting months to see a psychologist and then trying to coordi-

nate everyone’s schedules to make a clinic appointment was daunting.

She asked her family doctor if there were other solutions. Her doctor suggested the Strongest Families Institute. The Halifax-based organization is a not-for-profit corporation providing evidence-based services to children and families seeking help for mental health and other issues impacting health and well-being.

It provides timely care to families by teaching skills through its unique distance coaching approach — supporting families over the phone and Internet in the comfort

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Ashley Todd and her children, 11-year-old Sean (left) and nine-month-old Bree (right).

and privacy of their own home.

It was the perfect solution for the Todds.

Ashley Todd began weekly phone calls with her coach, Katie, and quickly learned skills to better parent Sean. “I wanted to have a functioning family so that Sean didn’t have to be medicated,” she explains.

Todd and her coach set a time that works for both of them. It’s as flexible as the two want it to be and if Todd takes an extra shift at work, she can usually reschedule. Coaches and parents work through the Strongest Families resource book and discuss specific concerns.

“What do I do when he’s slamming the bloody

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doors?” Todd laughs. “It’s one of those things that drive me crazy.”

Her coach offered a neutral take: if he’s not hurting anything but the door, let it slide.

It’s hard advice to heed when the door is smashing shut, but hearing her coach’s voice helps her take a deep breath and focus on more important issues, like managing Sean’s Attention Deficit Disorder (ADD).

“He’s a typical boy. He has rocket fuel,” Todd says. When he’s playing sports or running around, he’s fine, but he struggles to relax and that makes it hard to get to sleep.

Her coach suggested avoiding TV and video

games at night and instead reading a book for 30 minutes or having a bath.

Sean says it has been helping him fall asleep and stay asleep.

Todd says the phone-based coaching means she doesn’t have to travel to a clinic, doesn’t miss appointments when the weather is bad, and can take the calls in her pajamas at home. “For the working single parent — even a working family — this is so much more convenient,” she says.

Strongest Families also has a group option, where several parents talk together and to a coach to share strategies.

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The Strongest Families Institute offers four programs: Parenting the Active Child Behaviour Difficulties Program (3 -12 years of age): This program helps parents learn to deal with common childhood behaviour problems such as temper outbursts, not listening, verbal and physical aggression and difficulties paying attention. The program provides parents with a manual, DVD, behaviour chart for home, daily report card for the school and weekly telephone support from a coach.

Chase Worries Away Anxiety Program (6 -12 years of age): This program educates parents and children about anxiety and guides them as they learn relaxation skills and how to face worry in real life. The program typically deals with difficulties separating from loved ones, worry about performance, and specific fears. This program provides parents and children with manuals, a DVD, relaxation audio clips, daily worry diary and weekly telephone support from a coach.

Dry Nights Ahead Nighttime Bedwetting (5 -12 years of age): This program helps children overcome bedwetting with the use of a urine alarm, reward system, and weekly telephone support from a coach.

Chase Pain Away Recurrent Headache/ Abdominal Pain (9 -16 years of age): This program focuses on teaching stress management, avoidance of triggers, dietary modifications, appropriate use of over-the-counter medication, and with weekly telephone support from a coach.

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that’s the goal of Strongest Families: to help Todd says the 12-week course will also parents find ways to manage behavioural help her with Bree, her bright-eyed, curious challenges so that they cease to be probbaby girl. “If I don’t know what to do or how lems. It’s working. Research shows families to deal with it, there’s always someone I can using Strongest Families have a dropout rate call who can help me through that and calm of 10 per cent, compared to 40-to-50 per myself down,” she says. “It’s that nice, relaxcent in clinic-based programs. It also sees a ing moment. I just love it when she calls.” higher success rate. He attributes that to the That’s exactly what Dr. Patrick McGrath convenience of how the program is offered, wants to hear. He’s the CEO of the Stronand the type of staff who offer the program. gest Families institute and Vice President, “The overwhelming thing is the proResearch and Innovation, IWK Health Centre gram is designed to be very family-centred, and Capital District Health Authority. The rather than provider-centred,” he explains.

Strongest Families programs and modules The appointments are made at a time began as a research program by the Centre convenient for the family, rather than a family for Research in Family Health at the IWK. being given an appointment and having to The programs offered today are the result of make everything else fit around that. The a six-year research period to develop effective course is offered over the phone, so families programming for children and families. It has don’t have to travel or take extra time off its own office today, although the research school and work to travel. branch is still based in the hospital.

Clinic appointments often mean kids McGrath says one in five children have missing school and falling further behind. a mental health issue. Strongest Families The cost and time of travel adds to the burfocuses on disruptive behaviour disorders, den and increases the dropout rate. Stigma including ADD, oppositional defiance disoralso plays a role, especially in small comder (ODD) and anxiety disorders. munities where everyone will spot your car He says while you may mostly hear parked outside the mental health clinic. about such conditions in childhood, without McGrath thinks effective coping we should all work strategies, they conto decrease stigma tinue under another If I don’t know what to do so that having a child name in adulthood. with a mental health ODD expresses or how to deal with it, there’s problem is not differitself in children always someone I can call ent than having a child as not doing what who can help me through with a physical health you’re told. As an that and calm myself down.” problem. “We’ve adult, it can become overcome that by the a conduct disorder, – Ashley Todd way we’ve designed with “more serious” the program,” he says. rule breaking and law “We treat our families breaking. “They may as valued partners in this effort and we call even go onto a criminal career,” he says. people working with them coaches, not ADD can morph into an adult with therapists. attention difficulties that could limit career They’re the expert on their families; options. we’re teaching them some skills.”

“These disorders are not disorders you Coaches are trained by Strongest Famcan have a blood test for. What you do is deilies and work for decent compensation, but termined by whether or not you still have the at lower rates than psychologists. They can symptom, and you manage the symptoms,” also see more clients, reducing the overall McGrath says. “If you manage something well cost of the program. The program is purenough, you’ve pretty much overcome it.” chased by local health districts at no direct He points to anxiety, which stems cost to the families. from a natural and healthy ability to detect The program is now offered across danger. It becomes a problem when a child is Canada. There has been interest in Europe, overwhelmed by non-existent, but perceived, too. Strongest Families is involved in large danger. “If you have a child that at four is very trials in Finland testing its efficacy at preafraid of having his or her parents going out venting behavioural disorders and is also and being left alone with a babysitter — if being adapted to help kids with fetal alcohol the parents can then go out and the kid can syndrome. manage with a babysitter, then they no longer McGrath says the benefits spread to show the symptoms of an anxiety disorder, the entire family. “Having a child with a beeven if they’re still somewhat anxious,” haviour problem is very hard on the parent,” McGrath says. he says. “It’s actually a good anti-depressant McGrath, who founded the institute to learn how to deal with your child.” with Dr. Patricia Lingley-Pottie, president and CEO, Strongest Families Institute, says

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A day in the life: Inside the IWK’s trauma program #Z -JOETFZ #VOJO t 1IPUPT CZ $IBSMB +POFT njuries take the lives of more children than all other causes of death combined. This frightening statistic hits home for Heather Pinkham. The Guysborough area mother received a call that can only be described as every parent’s nightmare — her 12-yearold son, Dylan, was involved in a serious accident. Before knowing the extent of what had happened, Pinkham says she hoped for the best.

“I figured he needed a few stitches,” she says. “There was no way I could prepare myself for how bad it really was.”

Her son was riding an ATV and his grandfather was operating an excavator when an untimely collision badly injured Dylan’s leg. Dylan was quickly airlifted to the IWK where the trauma team was standing by.

Before Pinkham could reach the hospital by car, her son was already in surgery.

“Of course I was in a panic when I arrived and had no idea where to go,” Pinkham

I

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recalled. “I was taken to a private room where I could wait and the staff were available for all of my questions. I was able to stay there with Dylan throughout his stay, which made a huge difference.”

“

Although he probably won’t get the full bend in his knee, the IWK certainly saved my little boy’s life.”

– Heather Pinkham

From that day, Dylan spent seven weeks at the IWK and underwent a total of eight surgeries for a broken femur and extensive skin and tissue damage. He spent an additional three weeks there in January for four more surgeries, and he will have one more in the coming months to remove his central line.

What the Pinkhams didn’t know before

Dr. Natalie Yanchar (second from right) leads the trauma team through a mock emergency exercise at the IWK.

last August is that the IWK is the only certified level one pediatric trauma centre, as accredited through the Trauma Association of Canada, east of Montreal. The trauma program provides a targeted level of care that is unique to the region. Level one trauma centres have specialty trauma response teams, specialty physicians and highly sophisticated medical equipment on hand.

“The IWK’s trauma accreditation is a marker of the dedication of the institution to trauma care,” says Dr. Natalie Yanchar, medical director of trauma care at the IWK. “I became interested in the prevention of injuries when I was doing my fellowship in pediatric surgery. I was struck by the number of devastating cases of trauma we see, where children are killed or severely disabled, that could have been prevented in the first place.”

With a long list of work and research that speaks for itself, Dr. Yanchar is the Nova Scotia representative for the Atlantic Collab-

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Dr. Natalie Yanchar (centre) and RN Janet Lake (right), trauma team co-ordinator, lead the trauma team through a mock emergency exercise at the IWK. orative for Injury Prevention, the president of Injury Free Nova Scotia and the chair of the Injury Prevention Committee for the Canadian Pediatric Society. She has been influential in the adoption of legislation to protect children and youth from injuries.

There are three ways, Dr. Yanchar explained, to guard against injury. Firstly, prevent an accident from happening in the first place with the help of education, engineering and regulations. Secondly, if an injury is going to occur, do what is possible to keep injuries to a minimum with the use of proper safety equipment, such as helmets and booster seats. Thirdly, when an injury does occur, keep control so the situation does not get worse.

“That’s where the trauma program comes in,” Dr. Yanchar says. “The team uses a series of interventions to prevent the injuries from getting any worse.

“As a trauma team leader, I get a call and I’m provided with the information from EHS about what has happened. I assess the situation and determine what we will need — equipment, tests, staff. The patient comes in and we employ a systematic approach, ensuring blood is getting to the heart and the brain and making sure the patient doesn’t get worse.”

When a trauma patient is on their way, Dr. Yanchar and the multidisciplinary group of trauma team members are quickly brought in to the emergency department to ensure the patient receives the most efficient care possible. The on-call trauma team leader 50 t SPRING - SUMMER 2013 | FEATURE

determines where to start and how to prioritize in a systematic way.

“We have so many great team members who keep the big picture in mind, even under intense pressure.”

The success of the program and its members is especially evident to Janet Lake, an emergency department nurse for 23 years, who also wears the hat of Trauma Coordinator. Lake has maintained the role since its creation six years ago.

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The IWK’s trauma accreditation is a marker of the dedication of the institution to trauma care.”

– Dr. Natalie Yanchar, medical director of trauma care at the IWK

“We receive the reports from the paramedics and consider a list of trauma team activation criteria before calling the switchboard to call the team in,” Lake explained. “Trauma team members range from residents and in-house X-ray and lab technicians, to neurosurgeons and orthopedic surgeons. They are on-call at all times and are expected to be within 20 to 30 minutes of the hospital in case the trauma team is activated. Everyone converges in the resuscitation room to determine a plan and collaborate.

“Time is of the essence and it’s very

stressful, but the more times we activate the trauma team, the better we get.”

Approximately 28,000 patients are cared for in the IWK’s emergency department each year. Over the past few years, the trauma team has been activated about 30 times annually, with 36 cases occurring since April 2012.

As part of the ever-improving process, Lake reviews all trauma team activations to assess the progress and build on efficiency.

There are opportunities for learning from each trauma. Special debriefing sessions are sometimes organized in order to give the team an opportunity to discuss their role in these often high-acuity cases. In addition to learning from experience, the extended trauma staff use the most up-to-date evidence to guide their work.

“We want all of our systems to function in the best possible way, so we look at what worked well and what didn’t,” Lake says. “Our emergency department is very supportive of continuing education and training for our staff, which includes full-day trauma orientation for all nurses.”

It is with a well-trained staff that the IWK emergency department and its trauma program members are able to work together to prevent traumatic incidents from turning tragic, like in the case of Dylan Pinkham.

“Although he probably won’t get the full bend in his knee,” Pinkham says of her son’s ordeal, “the IWK certainly saved my little boy’s life.”

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Too many Maritime children are injured

at playgrounds

at home

in sports

en route

In fact, unintentional injuries are the leading

For more information on these topics for

cause of death among children in Atlantic

babies and children of all ages and stages,

Canada. Since 2002, the mission of Child

visit our website at www.childsafetylink.ca

Safety Link has been to help reduce the

and check out our downloadable resources,

incidence and severity of injuries to Maritime

helpful links, instructional videos and more!

children and youth. Located at the IWK Health Centre in Halifax, we offer a wide range of information resources for parents and professionals on the following:

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