Izaak – Spring 2014 by SaltWire Network

Tune in & support tHe 30th IWK TELETHON ON CTV! May 31 – June 1 Page 46

sPrinG • suMMer 2014

A soft spot for Elianna

Collaborating IWK surgeons blend expertise to reshape a baby’s future.

Brain mapping IWK researchers use MEG technology to map the brain before epilepsy surgery.

Maternal immunization Groundbreaking studies explore benefits of vaccinations during pregnancy.

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Cover story

Features

A SOFT SPOT FOR ELIANNA 38

PuttinG breast HEALTH FORWARD 26

By Heather Laura Clarke

By Lindsey Bunin

Collaborating IWK surgeons blend expertise to reshape a baby’s future.

A new breast health centre provides consolidated, collaborative health care to patients during a terrifying time.

Research 06 Mapping the brain IWK researchers explore new technological frontiers in epilepsy treatment.

12 From mother to child Maternal vaccinology research uncovers the effectiveness and importance of prenatal immunizations.

15 Innovation to excellence TRIC grants translate research into better care.

18 And the study shows... Results are in from a number of research studies conducted at the IWK.

20 An appetite for science Dr. Younes Anini and his team explore hunger hormones and their impact on weight.

BRINGING CARE CLOSER to HoMe 32 By Christie Blotnicky Patients benefit from the IWK’s long reach.

CalM and CoMFort 34

The Garron Centre for Child & Adolescent Mental Health gives patients a space to focus on healing.

22 From the inside out IWK-Dalhousie study could transform the lives of patients with Crohn’s disease.

technology 37 Tapping into tech to help youth Apps transform mental heath care for patients.

Profiles 42 Interdisciplinary care IWK health care teams collaborate on every level of care for patients and families.

44 Leaving a legacy IWK President and CEO Anne McGuire prepares to say goodbye.

46 Celebrating 30 years of Telethon The iconic IWK fundraiser celebrates three decades of success.

Then and now The fourth issue of Izaak looks back at the 30-year history of Telethon, and to the future, as donor-funded research and redevelopment transforms the IWK.

The magic of the IWK Telethon is a part of the fabric of our Maritime community. I am so proud to have been involved from the very beginning with what has become an amazing tradition. In 1985, I was chair of the inaugural Telethon. I can vividly remember the moments after we went off the air that first year. My eyes welled with tears as I reflected on the phenomenal generosity of everyone involved — from those who made it happen to all those who made pledges. This year — 30 years later — it is an honour to represent this annual fundraiser once again, as honorary Telethon chair. In a special feature in this issue of Izaak, we look back at some of the people and personalities who have brought the Telethon into your home for all these years. While lots of time has passed since that first Telethon, one thing has not changed: the passion, commitment and giving spirit from all corners of the Maritimes. The IWK would truly not be what it is today without the support of its donors — support that contributed to the health centre’s global reputation for excellence in specialized care and research. This issue of Izaak highlights several ways donor contributions have had an immense impact on the transformation of care that has taken place at the IWK. The development of the new Breast Health Centre and The Garron Centre for Child & Adolescent Mental Health (the new inpatient mental health unit), are two shining examples of the power of philanthropy.

Other stories in this issue highlight some of the world-leading research happening at the IWK involving numerous collaborators. For example, you’ll read about a study investigating the effectiveness of vaccinations during pregnancy, and new brain-mapping techniques that are transforming treatment for epilepsy. Finally, this issue fittingly concludes with a special interview featuring the IWK’s president and CEO, Anne McGuire, as she prepares for retirement after ten years of leadership at the IWK Health Centre. I hope you enjoy this issue of Izaak and that it gives you, our Maritime community, a tremendous sense of pride in seeing what we’ve accomplished together for patients and families. Liz Crocker Honorary Telethon Chair

IWK Health Centre 5850/5980 University Avenue Halifax, N.S. B3K 6R8 iwkfoundation.org

The IWK Health Centre is the region’s leading health centre providing specialized, quality care to thousands of women, children, youth and families in the Maritimes and beyond. The mandate of Izaak is to uncover and showcase the world-class care and research of the IWK so all stakeholders know and are proud to speak of the IWK as a national leader in health care excellence. Izaak highlights the unique and critical role the IWK plays in the Maritimes and the importance of philanthropy to continue this mission. Published by Herald Custom and Community Publishing Department Chairman and Publisher: Sarah Dennis President and CEO: Mark Lever Director, Custom and Community Publishing: Jeff Nearing Editor and Project Manager: Lindsey Bunin Creative Lead: Brian Graham Graphic Designer: Julia Webb Director Sales: Nancy Cook Account Executive: Annie Langley Contributors: Lindsey Bunin, Melanie Jollymore, Heather Laura Clarke, Lezlie Lowe, Jane Doucet, Denise Surette, Christie Blotnicky Photographers: Scott Munn, Christian Laforce, Sue Siri, Ted Pritchard, 123RF, Keith Jollymore, Ingrid Bulmer, Jo-Anna Halfyard © The Chronicle Herald 2014 All rights reserved. No part of this book may be reproduced, stored in retrieval systems or transmitted in any form or by any means without prior written permission from the publisher. The Chronicle Herald 2717 Joseph Howe Drive PO Box 610, Halifax, N.S., B3J 2T2 902-426-2811 TheChronicleHerald.ca Printed by: Advocate Printing

Photo: Ted Pritchard/The Chronicle Herald

Izaak Spring - Summer 2014

R ya n

E r i c Wy n

pl in

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.

CHRISTIE BLOTNICKY Christie Blotnicky is a Halifax-based communications professional. When she’s not working, she enjoys volunteering for the IWK Foundation and indulging in her passions for photography and writing.

Jane douCet

lindsey bunin

Jane Doucet is a Halifaxbased health and medical writer. Her articles have appeared in the Canadian Medical Association Journal, Canadian Health and CrossCurrents, as well as in many other publications.

Lindsey Bunin is a custom content editor and blogger for The Chronicle Herald. When she isn’t putting pen to paper, she is a busy mum living in the suburbs with her husband and two sons.

Contributors

Behind the scenes of Izaak, our contributors immerse themselves in the lives of those featured in the stories at the IWK Health Centre. This labour of love allows the stories and pictures of patients, families and the world-class health care professionals to be brought to life for our readers.

Jo h n

Sh er lo

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.

Melanie JollyMore

HEATHER laura Clarke

DENISE surette

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.

Heather Laura Clarke is a Truro-based freelance journalist whose work appears in newspapers and magazines across Atlantic Canada, including The Chronicle Herald, Business Voice, Our Children, and East Coast Living.

Denise Surette is a Halifax-based freelance journalist. Her writing has been featured in The Chronicle Herald, Metro Canada, The Daily News and a variety of Atlantic Canadian magazines. Outside work, she loves to travel, and volunteer with animals.

CHRISTIAN LAFORCE

Christian Laforce has been a staff photographer at The Chronicle Herald in Halifax for nearly ten years, covering stories close to home and as far away as Afghanistan. He is the recipient of several regional and national awards for his work.

Research

Mapping the b IWK researchers explore new technological frontiers in epilepsy treatment

An epileptic seizure is like an electrical storm in the brain, with too many neurons firing and overloading the circuits. The faulty neurons that trigger seizures may be scattered throughout the brain â&#x20AC;&#x201D; or concentrated in a single area that, if located, can be surgically removed to resolve the seizures. To enter the brain and safely remove the source of the seizures requires precision mapping. Researchers at the IWK are world pioneers of just such technology. STORY Melanie Jollymore Izaak Spring - Summer 2014

Photos Scott Munn

For each Izaak app download from the Apple App Store or Google Play, The Chronicle Herald will give $1 to the IWK.

e brain E

PHOTOS:

very night, 15-year-old Ashton Adey of Truro, N.S., wakes up the same way. He feels his right eye starting to twitch. Then his eye blinks faster and faster, as the muscles on the right side of his face contract so intensely the corner of his eye and the corner of his mouth nearly meet. Then, out shoots his right arm — rigid and impossible to control. The seizure holds tight for half a minute, then gradually releases Ashton from its grip. He slides back into sleep, but wakes again and again to the same galvanizing experience, all through the night.

“He’s exhausted,” says Ashton’s mother, Linda. “He never gets a good night’s sleep and some days struggles to stay awake in class.” Even so, Ashton’s seizures are better than they used to be. Since being diagnosed with epilepsy by the IWK’s neurology team at the age of two, Ashton has been treated with almost every epilepsy medication available. His seizures haven’t always responded. “There were times when he was having 40 to 60 seizures a day,” Linda recalls. “He couldn’t go to school. Eventually, the doctors found a combination of drugs that keeps the daytime seizures away, but he still has them every night.” All Ashton wants is the chance to live a normal life — and he may get his wish. At the time of this writing, Ashton was preparing for the biggest event of his young life — brain surgery at the IWK to remove the part of his brain that is causing his seizures. Surgery had never been an option before last year, but new developments in brain-imaging technology have opened this door for Ashton. “Ashton’s first round of brain-imaging tests showed surgery is possible, because the seizures are coming from a defined area of his brain,” says Dr. Ismail Mohamed, an IWK neurologist who works closely with the brainimaging research team in the Biomedical Translational Imaging Centre (BIOTIC) at the IWK. “They also showed the seizures are coming from an area involved in motor control, so more detailed studies are needed before surgery to ensure his arm function is not compromised.” The research team at BIOTIC is advancing noninvasive ways of mapping the brain’s functions before surgery, using a technology known as MEG (short for magnetoencephalography). Because MEG can still

Far Left: The current pre-surgical mapping techniques involve opening the patient’s skull and placing electrodes directly on the brain. IWKDalhousie researchers are developing non-invasive techniques that don’t so much as touch a hair on the patient’s head. Left: 15-year-old Ashton Adey waits for brain surgery at the IWK Health Centre. Below: Surgeons use MEG technology to localize Ashton’s seizures.

only be used for locating critical brain functions in research studies, Ashton also had to go through the current pre-surgical mapping technique. This is a highly invasive test that involved opening his skull and placing electrodes directly on his brain for five days to precisely map the origin of his seizures and his motor functions.

No room for error “The surgeon needs to know precisely where to go, and precisely where NOT to go when it comes to epilepsy surgery,” explains Dr. Steven Beyea, scientific lead of BIOTIC and associate professor in the Department of Diagnostic Radiology at Dalhousie Medical School. “There’s no room for error when a misplaced incision could take out someone’s ability to control their arm or process speech, for example.” Beyea is leading BIOTIC’s team of physicists, computer scientists and technologists in their quest to develop the next generation of non-invasive brain-mapping technologies. This talented young group is working with a Scandinavian company, Elekta Neuromag, to create a suite of user-friendly, error-proof applications for MEG, one of the company’s flagship technologies. Atlantic Canada Opportunities Agency’s Atlantic Innovation Fund provided crucial funding to launch this collaborative venture.

“With Elekta, we have an incredible opportunity to help a leading medical imaging company develop new clinical uses for its technology and expand its market, while generating revenue that provides sustainable support for brain research,” notes Beyea, explaining that, in addition to Elekta’s direct foreign investment in BIOTIC, licensing fees for technologies the team develops will flow back to the IWK to support the research enterprise. “At the same time, our close collaboration with the IWK’s neurology and neurosurgery teams allows us to work with young epilepsy patients to learn how the disease impacts their brains and to develop more sophisticated, less risky ways to map their brains before surgery.” Ashton found MEG to be the easiest of all his pre-surgery tests, which included MRI and PET scans and a long-term EEG that kept him at the IWK for four Izaak Spring - Summer 2014

days with electrodes glued to his head. “Even young kids don’t mind sitting in the MEG machine,” says physicist Dr. Tim Bardouille who, as the MEG project’s technical lead, performs many MEG tests on children and teens. “It’s not noisy or confining, it doesn’t take long, they don’t have to get any needles and there are no side effects.” Bardouille and his team are even developing a motion-tracking system that will allow kids to move their heads in the MEG without throwing off the mapping process. A child-friendly and completely non-invasive technology, MEG simply detects and records what’s happening inside the brain. “We show the children pictures and engage them in simple intellectual and motor tasks to get their brains active,” explains Bardouille. “As their neurons fire in response, the MEG instantly locates and measures the

PHOTOS: Top Left: Dr. Tim Bardouille (left), as the MEG project’s technical lead, performs many MEG tests on children and teens. Dr. Steven Beyea is scientific lead of BIOTIC and an associate professor in the Department of Diagnostic Radiology at Dalhousie Medical School.

“We’ve been testing electromagnetic fields that are generated by this brain activity.” our language-mapping system at the IWK, Expanding horizons Along with motor functions, language is an area with excellent results.”

of keen interest for the BIOTIC, IWK and Elekta – dr. tim bardouille researchers. Over the past four years, Bardouille and his team have developed an algorithm for the MEG that enables them to map the brain’s language-processing centres. This spring, they’ve launched a clinical trial with Helsinki University Central Hospital in Finland to test the new technology. “We’ve been testing our language-mapping system at the IWK, with excellent results,” says Bardouille. “Now we’re working with Helsinki to fine tune the study’s logistics, so we can involve more international centres and enroll the large numbers of patients we

need to validate the technique.” Language mapping is tricky, because languageprocessing centres can be found on either side of the brain. Many health organizations, including Helsinki University Central Hospital, use the Wada test, named after the Japanese physician who first performed it. This involves putting one side of the brain to sleep — by injecting a drug into the brain through an artery in the neck — to see if this is the side that controls language. The IWK more commonly uses an intense series of task-based neuropsychological tests to help locate language centres. “We need to show that our MEG techniques are at least as accurate as current tests in locating language centres,” Bardouille says. “Our feeling is that it’s far more precise, on top of being easier on children and their families.” Brain mapping before epilepsy surgery is just part of

Research PHOTOS: Top: Surgeons attach electrodes to Ashton Adey’s brain in order to detect which areas control functions like speech or movement. Bottom: Members of the neurology team anxiously watch as brain activity appears on screen.

the picture for BIOTIC, the IWK and Elekta Neuromag. The partners are also working on MEG techniques for assessing concussions, traumatic brain injuries and even Alzheimerrelated brain changes. For its part, Elekta couldn’t be happier. “The research is progressing beyond all our expectations,” says Gordon Haid, Elekta Neuromag’s director of sales for North America. “It takes a rare combination of clinical, scientific and technical expertise to do this kind of work, but we’ve found that in Halifax.” In fact, the company has based its North American research and development arm in Halifax, at the IWK — not only for the expertise but also for the cooperative spirit it has found in the local research community. “We see strong collaborations between the doctors and scientists,” notes Haid. “This allows new technologies to be perfected, and patient care improved, sooner.” For Ashton, it was still necessary to go through a very uncomfortable procedure on his way to a chance of a better life. But he feels it will be worth it. “I thought I would have seizures all my life,” he says. “Now I’m just looking forward to seeing what I’m like when I don’t have them and I don’t have to take medications anymore.” BIOTIC, IWK and Elekta Neuromag foresee the day when children won’t need days of open-brain electrode monitoring, or WADA tests, before their epilepsy surgery. Instead, mapping their brains will be as pain- and risk-free as sitting in a chair.

EPILOGUE: At the time of printing this edition of Izaak, Ashton was recovering from a second surgery to remove the part of his brain suspected to be triggering his seizures. He will continue to be monitored by the neurology and neurosurgery teams at the IWK. Izaak Spring - Summer 2014

BRAIN TECHNOLOGIES bring economic payoffs to Nova Scotia New brain technologies being developed in Nova Scotia bring benefits to patients, but they also benefit the province as a whole. Brain-related research and development is a key part of a larger health-research enterprise that brings $80 million in grants and contracts to Nova Scotia each year. Brain research, and health research in general, creates hundreds of interesting, meaningful jobs — at the IWK, Capital Health, Dalhousie University and a growing number of spinoff companies — that attract and keep talented young people here. “There’s huge potential in this community to build a thriving economic sector around brain research,” notes brain-imaging scientist, Dr. Steven Beyea. “We have incredibly dedicated researchers, brilliant students and staff, and very supportive institutions in the hospitals and university. On top of this, we have the Brain Repair Centre as a catalyst to

bring us together in collaborative ventures.” In addition to brain-mapping technologies, neuroscience researchers in Halifax are pursuing new technologies for diagnosing Alzheimer’s disease, assessing consciousness after head injury, protecting the brain during surgery, repairing cognitive and motor functions after stroke, and enhancing language learning. “It’s an exciting time,” says Beyea, who recently received a Nova Scotia governmentfunded grant from the Brain Repair Centre to help him organize and host BIOMAG 2014, an international conference on magnetic medical-imaging technologies. Sponsored by Elekta Neuromag, BIOMAG 2014 will draw more than 700 delegates from 30 countries to Halifax this August. “Winning the bid to host a major conference like BIOMAG shows Halifax is emerging as a world-leading centre for brain research.”

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Research

From mother t

Maternal vaccinology research uncovers the effectiveness and im po STORY Jane doucet | PHOTOS scott Munn

Izaak Spring - Summer 2014

r to child

importance of prenatal immunizations

hen Halifax resident Keltie Fudge and her husband, Charlie, were expecting their first baby in 2009, she decided to enroll in a pertussis (whooping cough) study being conducted by the Canadian Center for Vaccinology at the IWK Health Centre. The purpose of the study was to see if vaccinating a mother near the end of her pregnancy would transfer enough protective antibodies to her baby through the placenta and breast milk to protect the newborn. The researchers were also investigating whether vaccinating the mother would affect the baby’s protection levels once the baby started receiving routine needles. At the time, Fudge was working as a radiation therapist at the Nova Scotia Cancer Centre; her sister-in-law, an IWK nurse who had participated in the study, told Fudge about it. “Because I was working in health care, I had a good understanding of the importance of these studies — this is how researchers learn, when people are willing to volunteer,” she says. “I also believed that if the researchers’ hypothesis was correct, the situation was win-win — I get vaccinated, and my baby reaps the benefit.” The pertussis study, which began in 2008 and will wrap up in 2016, is the first controlled, randomized trial of its kind in the world. Fifty healthy pregnant women were enrolled during the first phase, which was done to ensure the safety of the intervention, and another 250 are taking part to complete the full

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Research

study. “The results will provide the definitive answer as to whether giving the pertussis vaccine to pregnant women provides protection to their babies without interfering with the babies’ ability to develop their own pertussis-fighting antibodies,” says Dr. Scott Halperin, the director of the Canadian Center for Vaccinology and the study’s principal investigator. Additional groundbreaking maternalvaccination research is taking place at the IWK. Dr. Joanne Langley is the principal investigator of an RSV (respiratory syncytial virus) study that began in March 2014. Langley is an infectious disease specialist at the IWK and Dalhousie University’s Canadian Institutes of Health Research-GlaxoSmithKline Chair in Pediatric Vaccinology, the only chair of its kind in Canada. RSV is a common virus that affects almost every child by the age of three. While its symptoms start similar to a cold — runny nose and cough — it can move into airways and lungs, causing fast breathing and wheezing and even more severe symptoms for some. Every year in Canada, there’s an RSV outbreak during the winter that can last from six to eight weeks. The study will monitor pregnant women to learn how their RSV antibodies protect their babies. A blood sample will be taken from the baby’s umbilical cord upon delivery, then the baby will be monitored for 18 months. “If mom has a high RSV antibody, the baby may not get the virus,” says Langley. Currently, there is no RSV vaccine, but IWK researchers Izaak Spring - Summer 2014

hope to help develop one. Pregnancy and the influenza vaccine is another area of keen interest to IWK researchers. During the 2009 H1N1 pandemic, government data suggested that 64 per cent of pregnant women in Nova Scotia received the flu vaccine. At the time, pregnant women were one of the priority groups to be vaccinated. But then a January 2014 article in the Canadian Medical Association Journal that reported on flu-vaccination rates among 12,223 women in Nova Scotia who gave birth between 2010 and 2012 cited a decrease in the overall flu-immunization rate among pregnant women to 16 per cent. The report’s authors, Dalhousie medical student Alexandra Legge and IWK-Dalhousie epidemiologist Dr. Linda Dodds, noted that evidence of the benefits of the flu vaccine for both mothers and babies was compelling enough for Canadian advisory boards to recommend flu shots for all pregnant women. Key benefits include a reduced risk of both preterm birth and low birth weight. The Canadian Medical Association Journal article concludes with the assertion that attention must now turn toward efforts to improve influenza-vaccination rates among pregnant women. Thus far, evidence suggests that rates are highest among pregnant women whose prenatal health care providers recommend the flu vaccine and can administer it in the same setting. “We hope to improve rates by providing broad education to those providers and through public awareness campaigns about the dangers of influenza

in pregnancy and the benefits of maternal influenza vaccination,” says Dr. Shelly McNeil, an infectious disease specialist in Dalhousie’s Department of Medicine, Capital Health and the IWK, who was one of the Canadian Medical Association Journal study’s co-authors. With clinical evidence strongly pointing toward the benefits of vaccinating pregnant women against various illnesses, why aren’t more of them choosing to roll up their sleeves? Experts say that there are a few myths circulating that may be discouraging them from doing so. “Some don’t want any so-called ‘foreign substances’ going into them,” says Langley. “And in the case of influenza, some think the flu vaccine causes the flu, which isn’t the case because the vaccine given to pregnant women contains killed virus. Influenza is a serious disease and pregnant women are at a higher risk of developing complications from it. So it’s in their and their baby’s best interest to get the flu vaccine.” Keltie Fudge didn’t need to be convinced about the importance of maternal vaccinations, and she’s happy to have taken part in the pertussis study. “I really enjoyed being a part of the process while having the opportunity to increase my knowledge about whooping cough and infant vaccinations,” says Fudge, whose son, Cameron, is now four years old. “The IWK research team took very good care of us, were very accommodating and made the whole experience a positive one.”

Research: TRIC grants

Innovation to excellence STORY Melanie Jollymore

Research is an integral part of the specialized care delivered at the IWK every single day. With hundreds of researchers on staff, close ties to Dalhousie University, and countless projects on the go, innovation thrives in every corner of the health centre. The end result: the best care and healthier women, children, youth and families in the Maritimes.

TRIC grants translate research into better care Photo: Contributed

The IWK is part of a new research initiative unlike any other. Called “Translating Research into Care,” or TRIC, the grant program funds researcher-administrator collaborations seeking practical solutions to problems on the frontlines of care. The program is also being implemented in Nova Scotia’s Capital Health district. By combining research skills with administrative know-how, TRIC-funded projects will lead to: safer, more efficient care • better, shorter wait times • better access under-served populations • healthier, moreforsatisfied patients • lower costs for patients, families and • taxpayers.

The IWK Foundation raises money to support TRIC-funded projects at the IWK, while the QEII Foundation raises money to support TRIC-funded projects at Capital Health. The first round of TRIC grants was awarded in February 2014. On the following pages, read about the eight IWK projects that received funding. PHOTO Researcher Dr. Erna SnelgroveClarke (R) and birth unit manager Jennifer West (L) are leading a project to identify what factors influence best-care practices and what steps can be taken to ensure all women receive the best possible care at the second stage of labour.

Research: TRIC grants

Earlier help for kids with autism

easing surgery distress for kids with autism

The earlier that children with autism spectrum disorders are assessed and begin treatment, the better they’ll do in their school and social lives. IWK autism specialist Dr. Isabel Smith and program managers Heather Osborne-Vincent and Barbara Casey are exploring the possibility of partnering with educators to identify and assess schoolaged children and youth who may have an autism spectrum disorder. Their aim is to improve outcomes for kids through early diagnosis and treatment.

Surgery can be stressful for any child, but even more so for children with autism. As staff in the IWK day surgery unit have found, kids can get very upset and be very hard to soothe, which can disrupt their care. And, as research shows, distress at the time of surgery can lead to more pain and slower healing afterward. IWK psychologist and researcher Dr. Jill Chorney and pediatric surgery services manager Colleen d’Entremont are leading a team that’s exploring what steps can be taken in the IWK day surgery unit to reduce distress for children with autism.

A smoother transition from hospital to home

Caring for kids in their community In January 2012, the IWK opened the Spryfield Pediatric Community Clinic in collaboration with Dalhousie Family Medicine and Capital Health. The clinic aims to improve the health of children and youth by providing specialist care in the community. The clinic’s pediatrician, Dr. Tara Chobotuk, is forging valuable relationships with family doctors, schools, family resource centres and others in the community, to the benefit of the children. Senior leaders in community pediatrics and primary health are now investigating what methods and measures will be most useful for evaluating the success of the clinic. This will help in planning collaborative clinics in other communities.

It’s not always an easy transition when children with complex medical issues leave the IWK — for children, their families or their health care providers at home. Researcher Dr. Janet Curran has teamed up with Jocelyn Vine, VP Patient Care at the IWK, Tricia Cochrane, VP Community in the Annapolis Valley District Health Authority, and Cathy Blades, VP Clinical Care at the Southwest Nova District Health Authority, to learn how these transitions can be eased. This is their first step toward an action plan for ensuring that children with complex needs continue to receive top-quality care after they leave the IWK.

PHOTO Dr. Tara Chobotuk, pediatrician at the Spryfield Pediatric Community Clinic with a family who attends the clinic.

Managing the second stage of labour for better birth outcomes How health care providers support a woman when she reaches the second stage of labour — when she’s fully dilated and may be ready to push — has a major impact on the rest of her birth experience. For example, improper management can lead to complications or surgical intervention that could have been avoided. IWK researcher Dr. Erna Snelgrove-Clarke and birth unit manager Jennifer West are leading a project to identify what factors influence care practices and what steps can be taken to ensure all women receive the best care at this crucial point in the birthing process. Izaak Spring - Summer 2014

Photo: Contributed/siri Photography

testing the new and improved system for emergency mental health The IWK is launching a new emergency mental health and addictions service. To make sure the new system really is improving care, Dr. Kathleen Pajer, Chief of Psychiatry at the IWK, has teamed up with Mary-Ann Hiltz, VP Strategy and Organizational Performance, to conduct a comprehensive evaluation. Their TRIC grant will enable them to lay the groundwork for an effective study.

Mission is remission: online help for kids with IBD Crohn’s disease and ulcerative colitis — together known as inflammatory bowel disease (IBD) — can take a heavy toll. Pain, frequent visits to the doctor, surgery, growth problems and social stigma are just some of the challenges. Dr. Tony Otley, head of gastroenterology at the IWK, has developed a self-management and social-support website called Mission is Remission®. He’s teamed up with Karen Carter, manager of ambulatory medical care, to see how well this online tool helps kids and their families reduce stress and improve symptoms and quality of life. They also want to see if this way of helping kids manage their own condition will reduce demands on the health care system.

An easier transition to the adult health care system When teens with complex medical issues reach the age of 16, they often face a difficult transition as they move from child-centred health care provided by pediatric specialists. Senior leaders in pediatrics and patient care at the IWK, including hematologist-oncologist Dr. Mark Bernstein and VP of Patient Care, Jocelyn Vine, are teaming up with Capital Health to create a new system for sharing care between pediatric specialists and family doctors that will smooth the transition when older teens with complex conditions leave pediatric care.

Wait times? There’s an app for that.

Dr. Michael Dunbar believes Nova Scotia can lead the country in medical innovation. He’s developed a mobile app that aims to reduce wait times, improve access to the right treatment and increase satisfaction for orthopaedic patients in the Maritimes. Dr. Michael Dunbar Orthopaedic Surgeon, Halifax, NS

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Research

And the study shows… Results are in from a number of research studies conducted at the IWK. These results will influence care not just at the IWK but across Canada and around the world.

test therapy boosts deadly cancer’s survival by 15% The IWK pediatric cancer care team is part of an international clinical trials network — the Children’s Oncology Group — which has found that a new immune therapy for advanced neuroblastoma improves survival of this deadly cancer by 15 per cent. A rare cancer that arises in immature nerve cells, neuroblastoma most often strikes children who are less than five years old. Early results of the trial are so encouraging that all children with neuroblastoma will now receive the new treatment.

Family-based therapy gives best results for those with anorexia The IWK eating disorders team has shown that supporting parents to take charge of feeding their child with anorexia is more effective than traditional treatments. Comparing results from before and after family-based therapy was introduced at the IWK in 2002, they found that more teens who received family-based therapy returned to a healthy weight than those who received typical care — such as group or individual therapy. Teens who received family-based therapy were far less likely to be hospitalized for weight restoration and had far shorter hospital stays and lower rates of tube feeding than those who’d received standard care.

Photo: itsmejust/123rF

Distraction, hypnosis best bet for numbing needle pain

Photo: Cathy yeulet/123rF

Izaak Spring - Summer 2014

After collecting and analyzing every published study on how children cope with the pain and distress of getting needles, Dr. Lindsay Uman and Dr. Christine Chambers in the Centre for Pediatric Pain Research have found that distraction and hypnosis are the most effective ways to help your child. Simply reading a story, watching a video, listening to music, or talking about something besides the needle can be enough. Hypnosis also works, but children and parents may need help from a trained professional to learn the techniques.

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Research

An appetite for science Dr. Younes Anini and his team explore hunger hormones and their impact on weight

STORY Melanie Jollymore

here’s a reason why losing weight becomes harder and harder as you gain weight. “It’s a snowball effect to do with our hormones,” says IWK research scientist Dr. Younes Anini. He studies a hormone called ghrelin, which interacts with insulin to regulate how hungry we feel and how much fat tissue accumulates in our bodies.

“Ghrelin is produced in the stomach and sends hunger signals to the brain to tell it when we need more energy,” says Anini, an associate professor in the departments of Obstetrics & Gynecology and Physiology & Biophysics at Dalhousie Medical School. “When we eat, ghrelin levels go down and we feel full.” Unless we are overweight, that is. As Anini explains, people who are overweight are usually also resistant to insulin, and insulin and ghrelin interfere with each other. “The end result is that your ghrelin levels don’t drop enough when you eat, so you

Photo: keith Jollymore

don’t get that full feeling. So you keep eating, which triggers more insulin, which interferes with ghrelin some more, so you gain more weight and it’s harder to lose.” Anini and his team of undergraduate and graduate students are exploring potential ways of interrupting this vicious circle. They’ve developed a gene therapy that mimics the receptors that bind ghrelin in cells. The researchers’ experiments show that these false receptors are able to take up the excess ghrelin and stop appetite from continually increasing. “It keeps the hunger signals at bay,” he says. Anini is also interested in seeing if such a ghrelin-absorbing therapy could help infertile couples conceive. “High ghrelin is associated with poor fertility, which makes perfect sense,” he says. “Ghrelin makes us hungry, so when its levels are not dropping, our bodies think we’re in a famine situation. This is an ancient mechanism that signalled our bodies to conserve energy in times of scarcity, so it naturally

prevented women from getting pregnant.” Of course, we’re not facing food shortages in developed countries today, so ghrelin’s energyconserving effect only adds to the cycle of hormonally driven weight gain. This effect can be even more pronounced during pregnancy, when a whole lot of other hormones are also being produced at very high levels. “Appetite regulation during pregnancy is very complex,” notes Anini, who is collaborating with Dr. Christy Woolcott in the Perinatal Epidemiology Unit at the IWK to learn more about excess weight gain in pregnancy and how this might also affect a woman’s offspring. He’s also collaborating with researchers in Dalhousie’s Department of Psychiatry, to explore how stress hormones like cortisol may affect weight gain in pregnancy. “Pregnancy can be a very stressful time… and stress increases ghrelin, which increases appetite, and also triggers cravings for highsugar, high-fat foods,” Anini says. “This chain reaction increases the risk of unhealthy weight gain in pregnancy.” Dieting by cutting calories is also very stressful, Anini says, and usually leads to a rebound weight gain. Snacking on high-protein foods, on the other hand, helps suppress appetite and keep ghrelin, insulin and a host of other hormones in better balance. “It’s a very complex set of mechanisms that we’re gradually coming to understand.” PHOTOS

Photo: keith Jollymore

Izaak Spring - Summer 2014

Dr. Younes Anini joined the Department of Obstetrics & Gynecology’s growing group of obesity researchers in 2010. He supervises five trainees in his lab at the IWK. (L-R) Stephanie Pelletier, Brandon Gheller, William Gendron, Sophie Hamr and Kyungsoo Shin perform essential work on Anini’s experiments, on their way to earning their degrees and pursuing careers in science. Training positions like these provide important opportunities for young people in the Maritimes.

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Research

From the inside out IWK-Dalhousie study could transform the lives of patients with Crohnâ&#x20AC;&#x2122;s disease

STORY Lezlie Lowe | PHOTOS Scott Munn Izaak Spring - Summer 2014

PHOTO Ashlyn Ross (centre) and her mom, Vicki (right), consult with pediatric gastroenterologist Dr. Tony Otley at the IWKâ&#x20AC;&#x2122;s gastroenterology clinic.

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Research

shlyn Ross opens a cupboard. “I try to drink lots of water,” the 15-year-old Fall River resident says. “And my mom bought me these Powerade squirt things that I’m allowed.” An entire shelf in her family’s pantry is dedicated to mints, gum and Werther’s Originals — the closest things to food Ashlyn will consume over three months of tube-feeding therapy to bring her Crohn’s disease into remission. In many places in North America, the go-to treatment for Crohn’s, which, together with ulcerative colitis, makes up the umbrella condition called inflammatory bowel disease (IBD), is steroids.

Izaak Spring - Summer 2014

Steroids are easy — pills each day. But they only dampen inflammation, treating the symptom rather than the underlying issue. Side effects include decreased growth, a suppressed immune system, weight gain, and acne on the face and upper back. The 20-hour-a-day tube feeding that Ashlyn’s taken on can be a long haul, but it’s drug- and side-effect free, even long term. Before her December 2013 diagnosis, Ashlyn was a competitive swimmer training 12 hours a week. A photo on the kitchen bulletin board shows her old team in handmade Wonder Woman suits. “In terms of drugs versus tube feeding,” says Ashlyn’s mom, Vicki, “it was all about being healthy and being good to her body.”

The IWK Health Centre is a leader in tube feeding — 60 to 70 per cent of new patients choose the tube. A new two-year, $150,000 IWK-Dalhousie University study is looking at how the treatment works and how it can be adapted to best benefit patients (see page 15 for related IBD research news). Dr. Tony Otley is a pediatric gastroenterologist at the IWK and Dalhousie Medical School who sits down with families like Ashlyn’s multiple times a week during busy GI clinics. IBD affects about 1 in 250 Canadians. Twenty-five per cent of cases occur in people 18 and younger. The IWK’s high uptake for tube feeding is thanks in large part to Otley’s years of IBD research, his clinical support for the therapy and the work of the nurses and dietitians who educate and encourage patients. Dr. Johan Van Limbergen is a leading pediatric gastroenterologist originally from Belgium, who joined the IWK and Dalhousie Medical School in the fall of 2013. He sees patients, including Ashlyn, but 80 per cent of his job is research. He’s heading the new IBD study — funded by the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition and the Crohn’s and Colitis Foundation of America. The study is all about intestinal bacteria — the bugs in your gut. (“Our bodies have more bacterial cells than human cells,” Otley says. “I think that is so cool!”) Van Limbergen studies patient’s genetics and the ecology of their gut-bug populations — what ones are there at different points during tube feeding, what they’re up to and how they change the gut environment.

25 PHOTOS Far Left: Fall River teen Ashlyn Ross is receiving three months of tube-feeding therapy to bring her Crohn’s disease into remission. Left: Dr. Johan Van Limbergen is a leading pediatric gastroenterologist.

“Scientists who were studying ocean water and soil microbes before, are now applying that knowledge to the human gut,” says Van Limbergen. Van Limbergen’s research, still in its infancy, will help IBD sufferers in the future by enabling more personalized treatments. The goal is to suss out the complex relationships between a patient’s genes, gut bugs and inflammation levels, to pinpoint the most effective IBD treatment. Back in the kitchen, Ashlyn yanks a small black backpack from her shoulders and unzips it to reveal her feed bag and pump. She points to the flow control. “If you’re too hungry, you put it up. If you’re too full, you lower it.” She runs her fingers along the thin, flexible tube that exits her nose and is cupped behind her ear. The other end is in her stomach —about 60 centimetres to reach the right spot. Ashlyn can glide it down herself. “She’s taking the lead and managing it,” says her dad, Rick. “I guess that’s like anything she does. She has always been that kind of person.” Ashlyn feels better already. “My energy level is a lot higher,” she says. But tube feeding’s challenges remain. Top among them is watching TV commercials where cheese oozes from hot pizzas and baked goods waft succulent steam. “It’s not so much that I’m hungry,” she says. “(But) you know when you’re sitting on the couch and you just want to eat something?” Going to school with a tube hanging out of her nose has turned out to be no big deal for Ashlyn.

The IWK Health Centre is a leader in tube feeding — 60 to 70 per cent of new patients choose the tube. A special formula that provides all of the energy, protein, vitamins and minerals normally found in a balanced diet — but broken down to an elemental level to ease strain on the digestive system — is used in this type of nutrition therapy. “I mean, people stare all the time. But, I kind of understand that. I would stare, too... I just explain it.” Once Ashlyn’s three-month therapy is finished (first meal, oven-baked salmon or cinnamon rolls), she’ll be in remission. But she’ll still have Crohn’s. Many patients continue tube feeding at night, eating regularly over the day. Ashlyn isn’t sure what she’ll go with. But she’s planning a return to competitive swimming. For now, she’s in the moment. “I’m just kind of happy that I get a treatment and I can move on a little bit. I am taking it in stride, I guess.”

Feature

PHOTO Breast cancer survivor, Patsy MacDonald, sits in one of the examining rooms at the new breast health centre at the IWK. Photo: Ingrid Bulmer/The Chronicle Herald

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Putting

breast health forward

A new breast health centre at the IWK provides consolidated, collaborative health care to patients during a terrifying time

STORY Lindsey Bunin

Photo: sue siri/siri Photography

f you ask Patsy MacDonald, 47, about her experience, she’d say that being transported through a hospital and into a parking lot dressed in a johnny shirt “sucked.” As a breast cancer patient, MacDonald was terrified of what was happening to her, and she says the old facility and process offered little in the way of comfort or privacy. When the Halifax mom had her first lumpectomy at the Dickson Building, a part of the Victoria General site of the QEII Health Sciences Centre in Halifax, she underwent a wire localization. “They basically insert a wire at the location of the tumor to help pinpoint it for surgery,” MacDonald says. “Then I had to go to the IWK for my lumpectomy, dressed in a Johnny shirt, with a cup covering the wire that was sticking out of my breast.” “I was pushed in a wheelchair to wait for a patient transportation vehicle and I was scared to death, but I didn’t want the others in the waiting room to know I was afraid. At a time when you’re already highly stressed, there was little dignity.”

Izaak Spring - Summer 2014

Photo: sue siri/siri Photography

That’s why the idea for the Breast Health Centre was born as a partnership between the IWK Health Centre and the Capital District Health Authority. In March 2008, breast surgery and supporting services moved from Capital Health to the IWK Health Centre. This joint effort and coordinated approach to care means reduced wait times and a more comprehensive approach to breast cancer care — and will further facilitate breast cancer research and advocacy. “The care you feel at the Breast Health Centre is great,” MacDonald says. “From the moment you take a number in the waiting area, they all make you feel special and that they care about you. They all understand that this really sucks.”

Feature

Finding the new

Photo: James ingram/Jive Photography

normal

Approximately 3,000 visits and 500 breast surgeries are now performed annually at the breast health clinic. The breast health surgical program provides a comprehensive, patient- and familycentred, interdisciplinary program of clinical care and support for patients suspected of, or diagnosed with, breast cancer, as well as benign breast disease. The Breast Health Centre was funded in large part by donors, such as the Canadian Breast Cancer Foundation and a joint effort by the IWK Foundation and the QEII Foundation. That partnership focused on the creation of Bust a Move — an annual, community fitness-based fundraising event. The fifth and final Bust a Move was held in March 2014, bringing the event’s overall fundraising total to more than $5 million. Funds raised from hundreds of Bust a Move 2014 participants, donors and sponsors will support the addition of dedicated patient care clinic rooms at the Breast Health Centre. These rooms are flexible, meaning that any breast health services team, which includes breast health surgeons, plastic surgeons, geneticists, nurses and more, can use the space to support their patients’ care. The scope of care expanded when two nurse coordinator roles were created to help facilitate a more comfortable and confident experience for patients. Theirs is a role of navigation, coordination of care, support, education, communication and hands-on care. Margaret Devries, whose office bulletin board is layered with colourful notes of thanks, is one of those nurse coordinators. “My time with patients and families, working with them through their journey, is the most rewarding aspect of what I do. I enjoy the teaching part of my role probably most, but also the satisfaction when I am able to help things come together. “Patients are very appreciative of the care and education they are provided, including the time we spend with them so they understand all aspects of their care and treatment plan. They like the approach of working with one surgeon and one nurse. They like the ability to call their nurse and get the answers to their questions. We have guidelines so that patients are seen and have surgery in a timely manner.” It’s a role Devries was destined to fill. “I think my whole career was brought into this role — my work as staff nurse on surgical units, home care, nurse examiner in the Ontario breast-screening program, cervical-screening pilot-project coordinator, educator, perioperative nursing, as well as specializing with a certificate in oncology nursing. All of my past experiences have been put to good use in this role.” The nurse coordinators are the experts, Tracy Dryden says. As the manager of ambulatory, perioperative and breast-health services, she sees the crucial connection between nurses and patients every day.

PHOTOS Left: An image shows a growth in a patient’s breast. Right: The Breast Health Centre, including new technology like this digital mammography machine, was funded in large part by donors, such as the Canadian Breast Cancer Foundation and Bust a Move, a joint effort by the IWK Foundation and the QEII Foundation.

“Most women want to go back to ‘normal,’” breast cancer survivor Patsy MacDonald says. After a double mastectomy, MacDonald opted for immediate reconstruction. While some patients have nipples reattached or rebuilt surgically, others look to tattoo artists to recreate nipples as realistically as possible. MacDonald had another plan. With the help of Amber Thorpe at Adept Tattoo in Halifax, she treated her new breasts as a blank canvas waiting to blossom. “I saw this as an opportunity to do something fun, something pretty. This obviously wasn’t what I was before, but I saw it as a great canvass for a lovely garden. It’s a celebration, really,” she says. “When I was first diagnosed, I felt like my breasts had turned against me. With the tattoos, I wasn’t trying to hide my scars. I wanted to highlight the fact that I love my body again.” MacDonald goes back to the Breast Health Centre at the IWK every year for a checkup. Her surgical oncologist, Dr. Geoff Porter, said he’d never seen anything like MacDonald’s tattoos before. MacDonald explains, “It’s a personal journey. For me, I’ve always tried not to dwell on the negative. My mom died early of another type of cancer, when I was in high school, so I am definitely more proactive about my health. That puts it in perspective. But some days, I do ‘ugly cry’. It’s really about learning to ask for help and accept it when it’s given.” Now it’s time for MacDonald to give back. With the help of Egg Films, Swell and other supporters, MacDonald launched a crowdfunding campaign, Breast Cancer BadAss, to support other breast cancer patients, as well as breast cancer research. You can visit her campaign through the Izaak app, or at breastcancerbadass.helloswell.com.

“The goal has always been for this to be a holistic centre for breast health care for women,” Dryden says. “The services were disjointed in the past. To have everything in one place makes it easier and much more pleasant for the patients in what is already a difficult time. “The patient feedback is very positive. The staff we have here is extremely dedicated to providing excellent and compassionate care.” Katie Maskell is familiar with the centre. She is a survivor, though she doesn’t like to typically refer to herself as such. “I am not someone who openly celebrates their number of years as a survivor,” the 31-year-old Timberlea woman says. “I admire those that do — sometimes I wish I could — but I don’t tell a lot of people. If it comes up, I am happy to share my story, though, especially if it educates people.” That’s why she is choosing to share her experience now. She’s learned that with the right treatment, anything is possible. She was only 27 when she noticed a lump in her right breast. “My doctor didn’t seem too concerned — primarily because of my age. It was expected to be a cyst or something. Nonetheless, I was sent in for a mammogram. I was told that they couldn’t get a clear reading because of my dense breast tissue, which is common for younger women. They wanted me to have a core biopsy to find out exactly what the lump Izaak Spring - Summer 2014

was. It was within a day or so that I got a call from my doctor and found out that I had cancer. “I was given the choice of a mastectomy or lumpectomy and removal of all my lymph nodes or a sentinel node. I chose the lumpectomy and the sentinel node because they both had the least drastic measures associated with them.” During chemotherapy, she learned she is a carrier for the BRCA1 gene mutation, which puts her at a high risk for both breast and ovarian cancer. This led to the decision to have a double mastectomy. From there, she started to explore her options for ovarian cancer prevention. It was recommended to Maskell that she have a total hysterectomy by age 35. “As much as I absolutely don’t want to do it, I know that I have to do it,” she says. “With a significantly increased risk of ovarian cancer, it would be irresponsible of me not to. I am going to do what I have to do to give me the best chances possible to escape any more cancer.” For Maskell, there was still light at the end of the breast-cancer tunnel. After being told she would not be able to conceive children, she was in for a surprise. “Months after treatment and starting to feel like my old self again, I began having stomach problems. I visited my doctor a number of times and was sent for various

tests, but nobody could figure out what was wrong with me. My doctor was starting to get worried that I might have ovarian cancer — remember, it was believed that I couldn’t have children. “Then my doctor wondered if I could be pregnant. Absolute shock! There are no words for how crazy that moment was — I either had cancer or I was pregnant. I wasn’t prepared for either. I had no symptoms of being pregnant — the double mastectomy took away the breast tenderness, I never had morning sickness and my period never returned after chemotherapy. But, to everyone’s surprise, I was, in fact, pregnant. My doctor even called her a miracle.” There is a 50 per cent chance that Maskell’s daughter will have the BRCA1 gene mutation, which is something the family will deal with head-on when the time comes. “When word of my pregnancy got out to all of my doctors, Margaret, my breast health nurse at the IWK, called me to congratulate me,” Maskell says. “When I brought my daughter with me when I went in for my annual checkup, my breast surgeon, Dr. Virginia Calverley, was so excited and happy to meet her. “Even today — three and a half years after my diagnosis — I know that I can still call up the Breast Health Centre for any support I might need.”

Feature

Breast cancer

research From measles to blood thinners: researchers explore new ways to beat breast cancer STORY Melanie Jollymore

PHOTO Left to right: Susan Roberts, RN and breast health coordinator, Velma Thompson, RN and breast health nurse, and Margaret Devries, RN and breast health coordinator were recruited to the care team at the improved Breast Health Centre at the IWK in an effort to emphasize patient-focused care.

A virus that made some of us sick when we were kids, and drugs that are used to prevent blood clots, don’t seem to have much in common. At the IWK, however, both are being explored for their potential to beat breast cancer, with funding support from the Canadian Breast Cancer Foundation, Atlantic Region (CBCF Atlantic). Measles expert Dr. Chris Richardson is a global pioneer in the science of targetting the measles virus to attack and kill cancer cells. Richardson is using his CBCF funding to ramp up the viral therapy, by creating a fast-spreading cancer-killing measles hybrid. “The hybrid virus is easier to purify and grows faster than measles,” he explains. “This makes it both more practical and more effective.” At the same time, Richardson is turning his discovery of a measles receptor on breast cancer cells into a potentially powerful diagnostic test for HER2-positive and triple-negative breast cancers. Plastic surgeon Dr. Michael Bezuhly, meanwhile, is working with IWK and Dalhousie scientists Dr. Rob Liwski and Dr. Brent Johnston to see if blood-thinning medications can prevent breast cancers from spreading. “There’s a lot of evidence that cancer cells cloak themselves in platelets so they can move around the bloodstream undetected and then stick themselves to tissues they want to invade,” explains Bezuhly, who has a longstanding interest in breast-reconstruction outcomes in addition to his basic science research. “That got us to wondering if drugs that prevent platelets from sticking to each other could also prevent metastasis by stripping cancer cells of their cloaks and exposing them to the immune system.” The researchers’ CBCF-funded lab studies show promising results. “We’re excited about this, because the drugs we’re exploring are already on the market,” says Bezuhly. “That means it’s not much of a stretch from proving our principle in the lab to approving the drugs for use in preventing breast cancer metastasis.”

Dr. Chris Richardson and his team have engineered the measles virus to express a jellyfish protein that glows green under ultraviolet light as the virus infects and kills cancer cells. These breast cancer cells are well on their way to dying within 48 hours of being infected

Feature

Care closer to home Patients benefit from the IWK’s long reach STORY Christie blotnicky | illustration Julia Webb

he IWK cares for patients hailing from regions far beyond Halifax. Many families make the journey out of necessity to benefit from state-of-the-art equipment or to see sub-specialists.

However, travelling to and from Halifax can be time consuming and costly for families who have children with long-term medical needs. For this reason, the IWK offers travelling clinics, which visit different centres in the Maritimes year round, offering 105 clinic days each year. Dr. Kenny Wong is one of three IWK pediatric cardiologists who travel with a full team around the region. He says the opportunity to reach out to patients in their own communities is both fulfilling and humbling. “It’s beneficial for us as well as for the families,” says Wong. “It gives me an opportunity to meet the physicians [at local hospitals] who I talk to on the phone, who share in the care of these children. Creating that personal relationship improves our ability to coordinate care for all of the children we see.” Coordinating care for patients is exactly what the travelling clinic is designed to do. Hundreds of children are seen through the clinics every year, and while many are well enough to stay in their hometowns and see their family doctors, some are referred to the IWK for additional treatment. For the cardiology team, one of the key pieces of the travelling clinic is a mobile echocardiogram, a machine that allows cardiologists to see how a patient’s heart is beating and pumping blood. This machine is used to diagnose a variety of heart defects Izaak Spring - Summer 2014

that can cause serious health problems if left untreated. In 2013, 626 children were served in the cardiology travelling clinic using the mobile echocardiogram, up from 514 the year before. “The mobile echocardiogram was generously donated to us by a family whom we cared for,” says Wong. “Prior to having the echocardiogram, we had to use the machines in the host hospitals and clinics, which took up valuable resources for the time that we were there.” It was with the mobile echocardiogram that Wong was able to detect a heart defect known as congenitally corrected transposition of the great arteries in two-week-old Sawyer Rice. When Sawyer was born, his family doctor detected a heart murmur. After a visit to his pediatrician, Sawyer and his parents, Kourtney and Daniel, were referred to the hospital in Moncton. It just happened to be on the same day the IWK travelling clinic was visiting. “The ultrasound technician didn’t hesitate to call Wong in to see Sawyer. They acted quickly and showed genuine care for his health,” says Kourtney. “I feel the professionals were very thorough and concerned about the welfare of our child. If not for people taking the next steps to diagnose him properly, things may not have ended as positively.” Following his visit to the clinic, Sawyer was immediately sent to the IWK Health Centre for further tests and, at just five months old, underwent his first open-heart surgery. He will need to have one more procedure at age three in order to fully resolve his heart defect. Now that Sawyer is home, he must have routine check-ups with his pediatrician in Miramichi, as well as his cardiologist and nephrologist at the IWK.

“Some families have children who have already had a few procedures and have spent weeks with us early in life,” says Wong. “Being able to do follow-up exams closer to home is great for them, rather than travelling to Halifax for all check-ups. It’s important to see them no matter what, but being able to do so closer to home is one less stress for families.” Kourtney couldn’t agree more. For her family, making the trip to Halifax includes coordinating work schedules with Daniel, as well as travelling with two young children and staying the night. “We would just recover from one trip only to prepare for the next,” she says. The convenience of the travelling clinic, as well as the support of its doctors, has been immensely reassuring for Sawyer’s family as it goes through the necessary journey to ensure his health for years to come. For Wong, the benefits of the clinic are just as poignant. “Families are always very grateful; it’s very rewarding for us. We also often get to meet other members of the family, like grandparents, and build a stronger relationship,” he says. Wong cites other benefits of the clinic, including less strain on nursing, EKG and administrative resources at the IWK, and the opportunity to see many patients sooner, rather than having them wait for an appointment at the IWK. But to see the greatest benefit, one must only look at Sawyer and so many other children like him. Their lives have been changed, and in some cases saved, by the travelling clinic teams and those at collaborating centres who help make accessible, mobile care a reality in the Maritimes.

Wood

IWK Travelling Clinics

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Miramichi

PRINCE EDWARD ISLAND

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Saint John Kentville

NOVA SCOTIA Halifax

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Clinics

Children’s Heart Centre

Sydney Yarmouth Bathurst Fredericton Moncton Saint John Charlottetown

Yarmouth

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Sydney

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Saint John

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Fredericton Saint John Charlottetown

Gastroenterology

Saint John Summerside Sydney

Respiratory Medicine

Bathurst Charlottetown St. John’s, NL

Orthopedics

Moncton Sydney Charlottetown Fredericton

Maritime Medical Genetics

Nephrology

Fredericton Moncton Woodstock St. John’s, NL

Charlottetown Summerside Fredericton Saint John Miramichi

Perinatal Follow-up

Kentville Yarmouth Antigonish New Glasgow Charlottetown Summerside Sydney Amherst

Psychiatry

Kentville

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New Glasgow Yarmouth Sydney

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Charlottetown

Specialty Seating

Kentville Sydney

Photo: siri Photography

Feature

Calm and comfort The new Garron Centre for Child & Adolescent Mental Health gives patients a space to focus on healing

izaak Spring - Summer 2014

Photo: siri Photography

he electric fireplace in the common area of the IWK’s acute inpatient mental health unit emits a calming flicker. The brightly coloured gathering space is visible from a welcoming, open nursing station where staff and physicians can keep a close eye on things. Sunlight pours in. This space, and the other new, calming and comfortable sleeping, cooking and recreational spaces that have been created here are conducive to group interactions, quiet reflection and a feeling of home for the young people seeking treatment at the IWK for severe mental illness. But it wasn’t always this way. When 18-year-old Jessica* woke up in the inpatient mental health unit (4-South) last year, she was terrified. She’d been sedated, as a result of severe anxiety and depression, so had no idea where she was. The room was safe — empty of furniture and secure — but “cold” and not comforting in the least. “There was nothing in the room, and so much noise,” she says. Jessica’s mother, Carol*, was surprised when she walked onto the floor, “I’d been to other parts of the IWK, and I gave birth to Jessica there, but this was like an old institution, nothing like the rest of the hospital.” Jessica and Carol spent six weeks on 4-South while Jessica received treatment and support for her illness, and Carol says that staying in a family room outside of the unit and having her nearby made a big difference. At the same time, she says her daughter needed to feel at home, and the unit lacked a feeling of warmth and comfort that is so important for healing. Despite the less-than-inviting surroundings, Jessica says the specialized team that cared for her was amazing: “They took really good care of me and comforted

me in times when I just didn’t think I was going to make it through.” Once the acute mental health inpatient unit was identified as a priority for renovation, a series of donors stepped forward to help. Construction began in spring 2013 and, in the spring of 2014, an entirely new unit on the 5th floor of the IWK was unveiled — a brighter, more comfortable space where young people can focus on treatment and healing.

PHOTOS: The Garron Centre for Child & Adolescent Mental Health elicits a strong, positive response.

A fresh start for all Operations manager for the acute mental health inpatient unit, Glenna Rose-Williams, is the first to admit that the old space was less than ideal. She says that, during the fundraising process, she gave many tours to people who were often shocked by the condition of the unit. “People couldn’t believe that our space was so depressing,” she says. “The walls were marked, all the furniture was mismatched. This was next to a brand new mental health and addictions therapeutic room, which was funded and the work already done, so you’ve got a bright beautiful space sitting beside this space that was just so sad.” When staff, families, patients and donors see the new unit, named The Garron Centre for Child & Adolescent Mental Health in honour of its primary funders, Myron and Berna Garron, it elicits a strong, positive emotional response. Styled like modern dorms in a university, patient rooms are casual and inviting. Bright blues and greens throughout the unit help it look and feel the way young people would appreciate. This has a lot to do with the fact that the youth who use the unit were consulted at every stage of the redesign, with their opinions sought on everything from layout and paint colours to tile patterns and furniture.

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*Patient and family names have been changed to protect privacy.

Photo: siri Photography

Feature

Eighteen-year-old Cassady Mason spent four months on the old unit in 2013, getting help with an eating disorder, and says that she just stayed in her room the whole time because being on the rest of the unit was unappealing. She was really excited to be asked to consult on the colour scheme for the new unit, and happy to find out that her paint selections were the ones eventually chosen. Jessica was also one of the teens asked to give input on the new unit, and says that it felt really good to be consulted. “It made me feel like my opinion mattered. Because I went through that experience, and if I contributed in some way maybe I could help other kids have a better experience when they went through a similar situation.” Jessica raised issues about the lack of visibility for staff in common areas, and the noise levels on the unit. “I suggested that there should be more of a quiet area, because when I was going through my stuff, I needed quiet and it really wasn’t there all the time.” Unit staff consulted with youth at every opportunity. “Our team was really good at always asking, ‘What do you want, what do you think should be here?’ says Rose-Williams, who admits that her ideas of what would look good were sometimes completely different than the youths’. “I fell in love with a set of colours right away, and the teenagers told us, ‘No, those aren’t bright enough,’” she says, “and ultimately it’s not our unit, it belongs to the youth.”

A brighter future Besides being cheerier and more welcoming, the new centre offers several improvements that will help with the day-to-day function of the unit. Nursing stations are designed so that every common area is now visible, an important factor given the population on the unit. “The open desk area looks out over the living and dining areas, so that you’re right there,” explains Izaak Spring - Summer 2014

Photo: siri Photography

Consulting patients and families

Rose-Williams. “We don’t want the youth to stay in their rooms, we want them to interact when appropriate because that’s part of what they need to do to get better.” And thanks to input from patients like Jessica, there are two new calming/relaxation rooms where youth can go when they need a break. The impact that this new unit will have on staff, patients, and all other stakeholders is huge. “People are afraid to come to a psychiatric unit because of stigma anyway, but the new space is quite beautiful, and there are big windows that let in lots of natural light, and that will allow the youth to feel more comfortable in their space,” says Rose-Williams. It was with stigma in mind that donors stepped up to privately fund the $9.6 million state-of-the-art space. In addition to the Garrons, donors like Marjorie Lindsey, RBC, the Windsor Foundation and others provided significant contributions to help give critically ill patients a comforting and healing environment. “The opening of The Garron Centre for Child & Adolescent Mental Health was one of the more memorable moments in my career,” says Rose-Williams. “I cannot thank the donors enough for their incredible generosity. I’m not sure they will ever know just how significant their contributions are to the mental health team and the youth and families who come here. Although, I know it’s why they were motivated to give. That’s what the new centre is all about — the patients.”

PHOTOS Top left: Berna and Myron Garron beam with pride after seeing the centre bearing their names for the first time. Top right: Olivia Burke, a former mental health patient, cuts a purple ribbon representing stigma at the opening of the Garron Centre on May 2, 2014 while donors, mental health professionals and supporters look on. Bottom: The Garron Centre represents a monumental step in reducing stigma for youth with mental illness.

Technology

Tapping into tech to help youth

Apps transform mental health care for patients

Photo: sergejs rahunoks/123rF

If you want to be effective when rolling out any kind of program with young people, you need to make it relevant to who they are and how they live their lives. Thatâ&#x20AC;&#x2122;s exactly what Dr. Stan Kutcher, Sun Life Financial Chair in Adolescent Mental Health at the IWK, has done through the development of two computer applications (apps) designed to help young people take control of their mental health. The Transitions app, which is also available as a print resource (both in its original form as well as a pocket resource) and an eBook, provides first-year, post-secondary students with information on topics and situations that they might have trouble navigating, such as relationships, mental health, sexual activity, suicide, and addictions. It has received endorsements from various organizations, including the Mental Health Commission of Canada, Kids Help Phone and Nova

Scotia Department of Education, and requests to be rolled out nationally and internationally. The imTEEN app empowers youth to manage their own mental health through journaling and assessing their own mental and physical health. The assessment tool advises youth on when to seek help by calling the Kids Help Phone. At press time, the app was awaiting official release, but Kutcher reports that there have already been requests to make it available in Chinese, Portuguese and Spanish. The app provides youth with control over who they would like to share their health information with, be it with their family, friends, loved ones, or more publicly. It is currently being vetted to integrate with an electronic personal health record app, under development, to provide real-time data to health care providers â&#x20AC;&#x201D; including alerts to facilitate intervention should there be a cause for concern.

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A soft spot f Collaborating IWK surgeons blend expertise to reshape a baby’s future STORY Heather Laura Clarke | PHOTOS Contributed

hen their daughter was born Jo-Anna Halfyard and her husband, Eddie, didn’t consider that anything could be wrong with their beautiful baby girl. She was thriving and happy, and meeting all of her milestones. However, during her one-month check-up, their family doctor, Dr. Cindy Marshall, noticed that Elianna’s head shape wasn’t rounding out the way it should after her natural birth. Izaak Spring - Summer 2014

“We noticed her forehead and back of her head bulging, and hard raised ridges on her skull,” recalls Halfyard. “Most noticeable was that her head appeared to be growing longer, but not wider — very similar to a boat shape.” At the following month’s check-up, Marshall said she suspected Elianna had sagittal craniosynostosis and would need to see a specialist. Sagittal craniosynostosis is a condition in which the joint, or suture, between the plates of the bone that make up a baby’s skull fuse too soon. As the brain continues to grow, it pushes out parts of the skull that have not yet fused. Elianna

PHOTO Above: Elianna Halfyard was born with sagittal craniosynostosis, a condition in which the joint, or suture, between the plates of the bone that make up a baby’s skull fuse too soon.

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“We wanted a more certain outcome so that we could look forward to her life ahead without worry.” — Jo-anna Halfyard

For each Izaak app download from the Apple App Store or Google Play, The Chronicle Herald will give $1 to the IWK.

underwent an ultrasound and an X-ray and Dr. Daniel McNeely, Chief of Pediatric Neurosurgery at the IWK Health Centre, immediately confirmed the diagnosis. The family was presented with two surgical options: a minimally invasive procedure that would require Elianna to wear a moulding helmet 23 hours a day for a full year, with the potential for future surgeries down the road, or an ear-to-ear incision for a full cranial vault remodel that would correct the head shape in one procedure — without a helmet. “We looked at a lot of pictures online and the major surgery looked so invasive. It was heartbreaking to see some of the images of what these children have to go through,” says Halfyard. “But the thought of having to force her to wear a helmet for that long was extremely hard to bear.” The family’s decision came down to Elianna’s quality of life during her recovery and their desire for her to be able to move forward and heal — without having to worry about more surgeries down the road. “We wanted a more certain outcome so that we could look forward to her life ahead without worry,” says Halfyard. The Halfyards opted for the cranial vault remodelling. Elianna’s case would be the first time McNeely would collaborate with a new plastic surgery colleague, Dr. Michael Bezuhly. “Although we’re quite accustomed to doing skull

surgery on our own, a plastic surgeon brings a different viewpoint that I’ve found refreshing,” says McNeely. Bezuhly, a plastic and craniofacial surgeon who joined the IWK in 2012, says there are many advantages to having two experienced surgeons from different backgrounds in the room. “We’re able to anticipate what the other will do,” says Bezuhly. “There’s an important aesthetic concern to these surgeries, and since beauty is in the eye of the beholder, having two beholders can really help.” During the three weeks between Elianna’s diagnosis and her cranial vault remodel, Halfyard remained in close contact with McNeely. “We really appreciated that he was so calm and confident and he always made himself available to us — whether by phone or email,” says Halfyard. “On numerous occasions, he answered many multi-page emails full of questions — often responding the same day.” Three weeks after her diagnosis, at just three months of age, Elianna underwent the three-hour cranial vault remodelling surgery. McNeely and Bezuhly removed sections of her skull to open up the fused joint allowing her brain room to grow and her head shape to round out. The surgery is ideally performed on infants between three and six months old, so McNeely says early recognition is key.

t for Elianna PHOTOS Right: Dr. Daniel McNeely, Chief of Pediatric Neurosurgery at the IWK Health Centre, confirmed Elianna’s diagnosis and performed her surgery with Dr. Michael Bezuhly (not pictured). Far Right: The Halfyard family is grateful for the care their daughter received at the IWK from nurses like Elianna’s favourite, Hailey.

Profile PHOTOS Left: Elianna’s skull pre-surgery (above) and her skull postsurgery (centre). Bottom Left: Eddie and Jo-Anna Halfyard, with their daughters Elianna (left) and Molly.

“The brain is growing very rapidly at such a young age, so there can be harm to the brain if it doesn’t have the room it needs,” says McNeely. “The optic nerves in particular are sensitive to pressure build-up, so vision loss is a potential problem.” Developmental issues aside, McNeely says an untreated sagittal craniosynostosis patient can experience significant self-esteem issues from their misshapen head. “In other parts of the world, this is not as quickly recognized, so it’s not always addressed at a young age,” says McNeely. “Patients may get stigmatized and society might make assumptions, because it’s an obvious malformation.” Neurosurgery staff told the Halfyards the surgery would be harder on them than Elianna, because children are so resilient — and Elianna surpassed everyone’s expectations as soon as she was wheeled out of the recovery room. “They couldn’t believe how successful the technique was, because they hadn’t seen someone recover so quickly,” says Halfyard. “She didn’t require a blood transfusion, her facial swelling was limited to one eye, bruising was minimal and her temperament was amazing.” “Dr. Bezuhly had said to us ‘I cannot believe this is the same child we operated on.’” Elianna stayed in the hospital for four days after her surgery. The Halfyards took the advice of other parents whose children received the same surgery and made a cheerful poster with photos of Elianna, to hang over her hospital bed during her stay. “We were told that sometimes the babies can look unrecognizable after their surgery, because of substantial swelling and bruising. But we were fortunate she didn’t have much of either,” says Halfyard. “Still we really felt that it helped the staff develop a more personal connection with her.” Elianna had her bandages removed a

Izaak Spring - Summer 2014

week after her surgery, revealing a zig-zag scar stretching from ear to ear. She now had multiple soft spots — instead of a completely fused skull with no soft spots, as before the surgery — because close to one-third of her skull had been removed to reshape it. She didn’t require any extra care at home, other than keeping her scar protected from the sun. Elianna visited McNeely every six months at first and now she goes once a year until she turns five. The sunny two-and-a-half year-old will be starting a French preschool program in the fall, just before her third birthday. Halfyard says she’s an “extraordinary yet typical” little girl. “I always joke around with my husband that the removal of parts of her skull allowed extra room for her brain to grow quicker and that is why she is doing so well,” says Halfyard. “She is a superb reader and she has a wild imagination. Her personality makes it so easy to forget what she went through, so shortly after coming into the world.” Today, all of the soft spots have filled in and the Halfyards are only reminded of the surgery when they brush their daughter’s hair and catch a glimpse of the silvery zig-zag scar — an intentional shape to prevent her hair from having a horizontal part. “When we see it, we are reminded of her incredible strength and of how fortunate we were to have the team that took care of her.” Halfyard herself works at the IWK Health Centre as an occupational therapist in the Children’s Rehabilitation Program and describes it as a “second home.” She feels privileged to have been able to experience the IWK’s care from both sides and says Elianna’s surgery has changed how she practices. “In the care-recipient role, there was nothing more important to us than having our care team continuously check in with us and re-evaluate what our unique needs were as a family — and being able to see the service delivery change based on those needs,” says Halfyard. “Parents are the experts on their own children.” “I’m so thankful and proud to work here. There’s no place I’d rather be.” Many children aren’t diagnosed until they’re 10 or 11 months old, so Halfyard is grateful Elianna was diagnosed and treated so quickly. Elianna is now a big sister to fourmonth-old Molly, who does not have sagittal craniosynostosis. Craniosynostosis is not considered to be hereditary. Halfyard says the experience has made her family even more aware of treasuring each moment with their daughters. “We have a new appreciation for health, and for the time we have with our little ones.”

Providing comfort at a stressful time Her daughter underwent neurosurgery when she was just three-months old, and mom Jo-Anna Halfyard says a few special items help them to remember the experience. It started when the IWK Auxiliary offered Elianna a handmade blanket before her surgery. Halfyard initially thanked them and explained they had brought plenty of blankets from home, but the volunteer encouraged her to accept it — and it remains Elianna’s favourite snuggle blanket today. “It’s very comforting to her, when she has a boo-boo or she’s upset,” says Halfyard. “We wrap her up in it, and it’s a reminder of what she’s gone through — and how strong she is.”

Halfyard also made a memory book for Elianna with photos and details from her surgery. They included a letter they wrote to her the night prior to her surgery — explaining the many emotions they were experiencing, why they made the choices that they did and how much they loved her. “We wanted to create the book to help teach Elianna about her journey through the condition when she is old enough to understand it,” says Halfyard. “We knew that the details would fade over time, and we wanted to be able to answer any of the questions she may have as accurately as possible.”

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It takes a village 42

Interdisciplinary collaboration makes care more complete for IWK patients and families STORY Lindsey Bunin | PHOTO Christian Laforce

f you tried to name every health care discipline involved in 16-year-old Spencer MacKay’s care, you would likely miss one or two. From the day he was born and began what would be an 18-month stay in the Neonatal Intensive Care Unit (NICU) at the IWK Health Centre, Spencer has been cared for and treated throughout much of the hospital. His story reflects the daily collaboration and interdisciplinary approach that is critical to the exceptional care provided by the IWK. Well known to many across the Maritimes thanks to his regular appearances on the annual IWK Telethon, Spencer was born with a form of dwarfism. With staff from many disciplines working at the health centre, Spencer was able to be treated for a number of health issues in one location, which was a significant convenience for his family, says his mom, Rebecca. Dozens of specialized health care professionals, with unique scopes of practice, have been a part of Spencer’s life in countless ways. Now, the Halifax teen is thriving and even recently started his first job at a local movie theatre, which Spencer says is in large part due to the professionals at the IWK. “Everything I do and say in my life I owe to the IWK because they were the ones that gave me the chance to live.”

* Other units and departments that influenced Spencer’s extraordinary care include specialty seating, clinical nutrition, Child Life, and hearing and speech. Izaak Spring - Summer 2014

NICU

Dentistry

When Spencer was born, he was in the Neonatal Intensive Care Unit (NICU) for almost 18 months. “Living in this unit for 18 months wasn’t ideal, but we all (our family and the IWK professionals) made the most of it. They tried to make sure Spencer was exposed to ‘life’ and helped him not be ‘institutionalized’ in this very sterile environment. The nurses became trusted confidantes. I trusted them when I had to be away from Spencer, and they even allowed me to bring in a TV and chair so I could rock Spencer to sleep at night like other parents at home. The most memorable thing for me now was the diary the nurses wrote in every night while Spencer was sleeping, talking about his day and his adventures.”

Orthopedics When he was six years old, Spencer had surgery fusing certain vertebrae to stabilize his neck, which was an operation done in conjunction with neurosurgery. Spencer was in a halo and body cast for multiple months. “Ortho continues to support Spencer in many other ways because his disability is bone related

and affects areas such as his spine and hips,” Rebecca says. “He loves going there; they are so warm and welcoming to him. Spencer has grown up with this family of professionals.” Spencer agrees. “Dr. (Lorne) Leahey always stands out for me because he was always happy to be there,” which Spencer says made him happier, too.

Neurosurgery

The IWK’s dentistry team provides dentistry care in often complex situations. Spencer underwent multiple dentistry day surgeries, in part because his mouth is too small for his teeth and because his tracheostomy tube required a special level of care. “While he hates getting his teeth looked at or cleaned, the dentistry team at the IWK always makes him feel comfortable and safe,” Rebecca says.

Neurosurgery performed the vertebrae fusion surgery on Spencer’s neck and followed him for years after the surgery to make sure all things had healed and his neck was stable. Neurosurgery also evaluated and provided support regarding Spencer’s craniosynostosis while he was in the NICU.

Plastic Surgery (cleft palate team)

ENT

Physiotherapy

The ear, nose and throat (ENT) team works with the Nova Scotia Hearing and Speech Clinic, whose audiologists and speech language pathologists they consult regularly. Spencer had a tracheostomy tube for the first three years of his life. He had ear tubes for most of his life as well, and speech difficulties because of his tracheostomy and cleft palate.

Ophthalmology Because the type of dwarfism Spencer has can be associated with retinal detachment, he has also been monitored by the ophthalmology team. “We feel like Spencer has grown up with this family of professionals,” Rebecca says. Today, Spencer is still monitored by the team in ophthalmology and there have been no signs of retinal detachment.

The IWK cleft palate team repaired Spencer’s cleft palate and monitored him for a number of years. “Spencer probably doesn’t remember the surgeries, but the professionals in plastics were great.”

IWK physiotherapists helped get Spencer moving, which was especially challenging in his earliest years as he was attached to a ventilator from birth to age two. They also helped him build muscular strength so he could sit up and ideally walk (he can walk but requires a walker for balance). “Spencer might say this wasn’t his favourite place, but actually he really enjoyed working with this team. I can honestly say if it wasn’t for this group we might not have picked up the neck instability either, which resulted in the fusion surgery, and Spencer might not have had the ability to walk today.”

Respiratory therapy Spencer had a tracheostomy and required a ventilator, and later a continuous positive airway pressure (CPAP) machine with oxygen to help him breathe. “This team was always respectful and accommodating, but never lost its professionalism. I had faith in this group, especially since without them Spencer wouldn’t have made it for as long as he did on the ventilator.”

Occupational therapy

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Due to his small stature and difficulty walking, Spencer has received assistance from occupational therapists (OTs) for several years. Because of his limited strength and dexterity, OTs have been able to help him eat independently, write and hold things. “The people I’ve encountered at the IWK care about the children just as much as their families do,” Spencer says.

Leaving a legacy IWK President and CEO Anne McGuire prepares to say goodbye STORY Lezlie Lowe

PHOTO anne McGuire’s graduation photo from nursing school.

nne McGuire was finishing up her last day as CEO at the Annapolis Valley District Health Authority when the phone rang. It was her son, with the news that her daughter-in-law was in labour. McGuire’s first grandchild was about to arrive at the IWK Health Centre. And so was Anne McGuire. McGuire buzzed in to town and arrived for the birth of her grandson — just a regular excited grandmother-to-be, attending the event. Except, that is, for the newsletter flung on the table in the birthing room with McGuire’s photo and an announcement about her new job as president and CEO of the IWK. During the birth, McGuire saw the nurse peek at the newsletter and then at her, eyebrows raised. Izaak Spring - Summer 2014

Photo: scott Munn

“How symbolic was that?” she says, a decade later in her homey IWK office. “Amazing.” McGuire, who turns 67 this year, is a symbol herself. She led the current wave of women hospital administrators in Nova Scotia. Five of the province’s 10 hospital CEOs are women, a balance McGuire credits simply to the “natural evolution of women taking their place in the workforce.” All five of those current women CEOs are, like McGuire, former nurses. And that’s no shock to her. “Nurses have a real affinity for the care process and how that all happens,” she says. McGuire says nurses, like other hands-on practitioners, have a “profound understanding” of what she calls “the contract” — the unspoken partnership between patients and caregivers and families. “(It’s) that intimate relationship with someone you are caring for. To me that’s a huge asset.”

Of course, it’s different when you’re the boss. CEOs don’t run around changing dressings and managing medication. The trick, McGuire says, is melding “the contract” with the 50,000-foot view. “What you try to do,” she says, “is make a difference for a whole lot more people.” Sometimes McGuire finds herself much closer to Earth than 50,000 feet. She heard such an earful, often in person, about bad food at the IWK that she and her team re-wrote the menu on food service. Patients, as well as families and staff, can now use the centre’s 24-hour Dial for Dining service, which works just like hotel room service. Rickety wheelchairs were another inbox- and voicemailfiller. The chairs were replaced. “They were pretty bad,” she concedes. McGuire started at the Nova Scotia Hospital in 1982 as a casual nurse on the night shift. In a decade, she was CEO, and the first woman to hold that title in the province.

Profile Her time at the Nova Scotia Hospital continued to fuel McGuire’s passion for mental health and wellness. It’s a drum she’s beaten throughout her career. McGuire was part of the team that led the move of child and adolescent mental health services from the Nova Scotia Hospital to the IWK. After taking the reigns at the IWK in 2004, she made it a mission to improve the experience for patients in the IWK’s acute inpatient mental health unit, 4 South. The most recent redevelopment, supported by a $1-million gift from Marjorie Lindsay, and part of a $10-million gift from Myron and Berna Garron (the largest-ever private donation to the IWK) and numerous other private donations, has created a brand new acute care mental health inpatient unit (see page 34 for details on the state-of-the art Garron Centre for Child & Adolescent Mental Health). McGuire’s tenure has seen other improvements in the IWK’s child and adolescent mental health services, including the completion of an IWK mental health strategic plan, the introduction of the international Choice and Partnership Approach (CAPA) model to improve patient care, and the creation of a new state-of-the-art addictions treatment centre for CHOICES, at the IWK’s Craigmore site. “We are far from perfect and we still have a lot of work to do, but it is night and day,” McGuire says of the strides since she took the reins. “I can retire a happy woman because of the inpatient mental health unit alone.”

McGuire’s accomplishments (which she takes pains to point out are by no means hers alone) also span the new Breast Health Centre, a project in partnership with the Capital District Health Authority and Canadian Breast Cancer Foundation, and the IWK’s five-year-old family-focused pediatric inpatient units, which have showers, sleeping areas and more space for families that often move in with their children for months. Is there anything left to do? McGuire leans back in her office chair. “Always. My successor will help the IWK Foundation reach some other significant fundraising goals. The redevelopment of the rehabilitation services unit, for example, is just starting. We’re going to do renovations to the NICU (Neonatal Intensive Care Unit) and the PICU (Pediatric Intensive Care Unit) and make some changes to the women’s operating suite and Early Labour & Assessment Unit.” McGuire isn’t planning a retirement day quite so splashy as her auspicious birthing-room arrival. For now, she’s making quiet plans for a fall departure, once her office has someone else’s art on the walls. “I have developed a huge respect for this place and the people who provide the care here,” she says. “There is a commitment to patients and families that goes above and beyond.”

“I can retire a happy woman because of the inpatient mental health unit alone.” – anne McGuire

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30 terrific y Profile

The IWK Telethon celebrates three decades of memories, success STORY Denise Surette | PHOTOS Contributed

Izaak Spring - Summer 2014

c years

For each Izaak app download from the Apple App Store or Google Play, The Chronicle Herald will give $1 to the IWK. PHOTOS Left: Don Tremaine hosts Telethon Top: Bill Carr and patient co-host

he IWK Health Centre’s annual Telethon has been on the air for 30 years, sharing stories of Maritime families and their experiences — some are familiar, many are extraordinary, and over three decades, all have made an impact that transcends time. Since 1985, Maritimers have come to know and love the many faces of the Telethon, including the hosts who help families share their stories. And these familiar faces have stories of their own — from memories of their work with the IWK Telethon, to their own children receiving care at the IWK. The health centre has touched all of their lives. The IWK Telethon began after the Osmond family, of entertainment fame, started the Children’s Miracle Network Telethon in the United States. Carol Young, a former member of the board of directors for the IWK, and some of her colleagues, saw this as an opportunity to help bring in donations for much-needed equipment. After discussing it with the CBC locally, the IWK Telethon was born, as a part of the Children’s Miracle Network Telethon. “People just dug in,” says Young. “They took off and did what they could to make this happen. Three months later, I think it was $649,000 we raised, and that happened because of the total commitment of Maritimers. Of 167 pediatric hospitals across North America that participated in this, for the first several years of the Telethon, Nova Scotia had the highest per capita total. Within the Maritime region, the most donations per capita came from Cape Breton.” Young’s work with the IWK led her and her husband to adopt their son Michael, a very ill newborn with a host of health concerns, including severe kidney problems. Her commitment to the IWK deepened with her love for her son during many of the tough

Bottom: Starr Dobson and patient

days he was in the hospital. “The care that our son Michael received, and the support that was given to me, was second to none. It takes very special people to look after sick children,” says Young. In the early days of the IWK Telethon, when Young was helping behind the scenes, the show ran all night, from Saturday evening at 7 p.m. to Sunday evening at 7 p.m. The phone lines were open all night, and in the wee hours of the morning, live entertainment from musicians and storytellers, along with interviews by the hosts, kept the show going. Don Tremaine, the first IWK Telethon host, remembers his days with the Telethon as ground-breaking. No one in the Maritimes had ever taken on such an enormous television fundraiser. When asked to host, he didn’t hesitate. “Never having done anything quite like that around here, I said, ‘sure why not!’ But there was an awful lot of work involved because it was a very big production — there were three cameras in the CBC studio, where I was the host, while Frank Cameron was with a crew and a camera over at the IWK,” says Tremaine. Bill Carr, local comedian and actor, remembers the very first time he took part in the IWK Telethon, the first year it was on air. “I was invited to participate on air, and I sat down beside Don Tremaine. He was really tired and when I said I was done for the night he said, ‘No, I need somebody to keep me awake.’ So I sat with him and we talked all night, I was the honorary co-host by mistake. We had a good time and I helped keep the phone bank people awake. It was amazing, it was my first experience and that was when I learned how many stories there are that come out of the IWK — there was no end to the stories,” says Carr. Carr has a commitment to the IWK that runs deeper than his annual work as co-host. “The IWK saved my son’s life, no question.

“Spencer was born with a rare form of dwarfism and he’s in a wheelchair. When he walked for the first time on the Telethon, we had the cameras on him, and he got out of his chair and he took a few steps, it was just amazing.” — Starr Dobson, CTV

Alex actually had a variation of a flesh-eating disease, nobody even knew what it was at that time — except Dr. Joe Hyndman, who recognized it instantly. Normally they would have waited 48 hours to see what happens, but because he knew what it was, he knew we couldn’t wait even 15 minutes. They caught it in time and saved a limb, if not his life. If anybody asks why I do it, I say ‘they gave me my son back, no discussion.’” Tremaine remembers when, after a decade, CTV took over the Telethon reins from the CBC: “I’ll give them full marks, they did a

terrific job. We only helped with supplying a few tapes, they did what they could, but I was amazed what they could do with such short notice, it was very well done.” From that day, CTV News anchor Steve Murphy took over as the primary host for the IWK Telethon for Children. Seeing the importance of the task, he and the rest of the CTV team took on the show. “We stepped in because we felt the Telethon and the IWK were too important not to have this mechanism for fundraising. I was pressed into service because I was one of the principal hosts of a program at CTV and we all wanted to pitch in and help. Since that time it has grown into the partnership it is now,” says Murphy. “The CBC did a great job getting it launched and Don was a magnificent founding host. To be honest, one of my early concerns was trying to fill his boots. Not only is he a giant concerning the IWK, but he is also one of the giants in Maritime and Canadian broadcasting.” Murphy, as a partner in the IWK Telethon and as a parent, was well aware what the IWK provided for the Maritimes, but he says it was during one Telethon more than 12 years ago his commitment was sealed. The incident was one of the most memorable during his 20 years on air.

PHOTOS Above Left: Spencer MacKay and mom, Rebecca. (See Spencer’s story on page 42.) Above Right: Steve Murphy Left (L-R): Steve Smith (Red Green) and Dr. Richard Goldbloom. Izaak Spring - Summer 2014

PHOTOS Left: Carol Young and Paul Dyer Below: Butch the Cat

“I went to host the Telethon and my own son Brendan was quite ill. He was only a little boy at the time — he couldn’t have been more than three or four years old. I arrived at the Telethon and as Saturday evening wore on, Brendan became more ill. The next thing you know, he was at the IWK. He had a very serious problem with dehydration and diarrhea — some sort of unnamed virus. I had to leave my hosting duties to be the parent of a sick child. It was an interesting collision of my role and my relationship with the IWK. That sort of welded the role of the IWK to my own life and solidified my commitment to the Telethon.” Another familiar face from CTV, Starr Dobson, recalls her 18 years as a reporter and co-host of the Telethon with Murphy as very humbling, and says she was honoured to be part of something that directly affected her life and the lives of the people she served during her years at CTV. During her first year as a young reporter on the IWK Telethon for Children, she was expecting her first child — a child who is now 19 years old. “Having a child changed my perspective completely and gave me a whole new appreciation for what happens there. It also made it difficult for me to not feel connected to the stories. I found whenever I would meet a family who had a child around the same age, I had such a connection with them. I found the stories that affected me the most were the stories where I walked into the pediatric intensive care unit to find an 18-month-old baby at the same time I had an 18-month-old Izaak Spring - Summer 2014

baby at home. Those were the stories that really had an impact on me.” Starr remembers a moment on the Telethon with patient Spencer MacKay as one of the most remarkable of her career. She met Spencer when he was a newborn at the IWK and has followed his progress over the last 16 years. “Spencer was born with a rare form of dwarfism and he’s in a wheelchair. When he walked for the first time on the Telethon, we had the cameras on him, and he got out of his chair and he took a few steps, it was just amazing.” When asked, each and every person involved with the IWK Telethon said the most astounding thing was the family stories and the relentless generosity of Maritimers. Many people have stories of generosity, including Carol Young, who remembers a phone call in the early days of the IWK Telethon. “I remember someone taking a call on Sunday afternoon, it was a woman calling from Port Hawkesbury. She said ‘my husband and I normally give $40 to the Telethon.’ She said they had both been laid off from their jobs, but would like to give $10 because that was all they could afford, and that is the true Maritime spirit.” Bill Carr says the spirit of giving in the Maritimes has led to what he believes is the opportunity for the IWK to become what it really is — a place not just for children, but for families, a place where children, women and youth receive world-class care close to home. A place for the whole Maritime community.

“I can become cynical about the whole world but I can’t be cynical about what is happening at the IWK. I say this at the Telethon every year, I can wake up the next day and say I participated in hope. I participated in real tangible benefits to my community, to children and families. It’s not a pie-in-thesky idea, it’s a reality. It lives and breathes at the IWK.” Although over the years the IWK Telethon has switched to a high-tech format, with social media outreach and all of the benefits of modern television programming, the heart of the Telethon is still the same. Murphy says it is this consistency that makes the IWK Telethon so special. “The show has changed in terms of the production values. It is now in HD and we actually anchor the show from inside the IWK auditorium. We also have many additional remote locations, but the core of the Telethon hasn’t changed and that’s why it works. The show shares with the people of the Maritime provinces the stories that happen at the health centre every day. The sheer beauty and magic of those stories are what compels people to support the IWK. So that part of it really hasn’t changed and that’s the part I think really makes it work.” Last year the IWK Telethon for Children brought in a record-breaking $5.8 million to help fund numerous programs, research projects and the purchase of priority equipment. The funds help make the IWK one of the best hospitals in the world.