Maximize healing, minimize stress
FALL 2014 • WINTER 2015
Reinvented NICU and PICU will keep children and families together in state-of-the-art environments
Pain beyond pregnancy IWK researchers explore links between childbirth and chronic pain
Seeing is believing World-class Clinical Vision Science team making a visible impact
THANK YOU The IWK Health Centre is a place of healing, care and growth. At Stewart McKelvey, we’ve all been touched one way or another by the kindness and expertise within the halls of the IWK. We thank all of the people who work so hard to create a soft place for families in our community.
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FALL 2014 • WINTER 2015
Cover Story SEEING IS BELIEVING 38
World-class Clinical Vision Science team making a visible impact
Features BIRTHING AT HOME 24
IWK midwives make it possible for more families to welcome babies to the world safely at home
MAXIMIZE HEALING, MINIMIZE STRESS 30
Reinvented NICU and PICU will keep children and families together in state-of-the-art environments
SHARING IWK EXPERTISE 34 Obstetrics and gynecology residents excel from a global perspective
Research 06 Pain beyond pregnancy
IWK researchers explore links between childbirth and chronic pain
12 World-leading advancements in genetic screening IWK’s Molecular Diagnostic Lab uses new high-tech equipment to provide families with more insight sooner and more safely
16 The truth about vaccinations
World-leading IWK immunization expert Dr. Noni MacDonald shares insights on a complex and timely topic
19 Establishing a lasting legacy
Newly appointed research chairs drive excellence in autism and epilepsy
22 Research News
Innovative studies and programs further IWK’s mandate for excellence
Technology 43 Waiting game
Innovative IWK emergency department app gathers real-time data about kids and their conditions
46 Mother’s milk
IWK is first in Atlantic Canada to safeguard a precious resource
PHOTO: Carter Riley is under the careful eye of the IWK’s Clinical Vision Science team.
Profiles 48 Specialized care
IWK eating disorder nurses receive nationally unique certification
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WELCOME to the fifth issue of Izaak magazine. Hello, I am Tracy Kitch, President and CEO of the IWK Health Centre and this is my very first Izaak. I am pleased to welcome you to this newest edition.
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Photo: Scott Munn
Since arriving at the IWK this past September, I have had the opportunity to meet many of the staff members, physicians and volunteers who are committed to providing the best care for our patients and families. Whether in the delivery of world-class health care, the discovery and dissemination of leading-edge research findings, or the commitment of countless volunteer hours to supporting our patients and families, I have witnessed a strong sense of pride and passion at the IWK. Similarly, our patients and families are some of the most inspiring, gracious and courageous people I have had the pleasure to meet. I believe that the stories in Izaak are meant to represent the delicate and intimate relationship of these two worlds coming together to deliver exceptional patient care. In this issue, you will read about some of the most transformative moments shared between staff members and patients. We capture the IWK’s midwifery program with a glimpse into a midwife-attended home birth; you will also meet two registered nurses who are sharing their specialty-certification training and expertise in eating disorders to care for some of our most vulnerable patients. This edition also highlights some exciting research developments — our Women’s Pain Group, and the introduction of two new research chairs in the areas of autism spectrum disorder and epilepsy — as well as our internationally recognized orthoptic education program, featured on the cover. And as we bring you our fifth issue, it is time to hear from you, the Izaak reader. We want to be sure we are providing our readers with content that is relevant and of interest, so I direct your attention to the reply card in the middle of the magazine. Please take a few minutes to provide your feedback. Your opinion is most valuable to us and will help us make Izaak all you want it to be. As I begin my journey with the IWK Health Centre, I look forward to getting to know even more of the staff members, physicians, researchers, patients, families, donors and volunteers who make up the IWK community. I am truly honoured to be part of such an outstanding organization. Please enjoy this issue of Izaak and, with your feedback, help us shape future issues.
Photo: Alex MacAulay
Photo: Scott Munn
Photo: Scott Munn
Izaak Fall 2014 • Winter 2015
CONTRIBUTORS IWK Health Centre 5850/5980 University Avenue Halifax, N.S. B3K 6R8
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.
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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. Izaak magazine is named after the IWK’s founding philantropist Izaak Walton Killam. 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
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 nonfiction. Lezlie has twice won gold for feature writing at the Atlantic Journalism Awards.
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. 5
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Jane Doucet is a Halifax-based 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.
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Katie Ingram is a freelance journalist based in Halifax. Her work has been featured in Halifax Magazine, The Chronicle Herald, Business Voice, Atlantic Business, J-source and The Coast. She has also freelanced for CBC Radio programs Mainstreet (PEI), Information Morning (NS) and Maritime Magazine.
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Chairman and Publisher: Sarah Dennis President and CEO: Mark Lever Vice President, Custom Content: Jeff Nearing Editor and Project Manager: Lindsey Bunin Creative Lead: Brian Graham
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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
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
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.
Sue Siri
Sue Siri is a Halifaxbased photographer with over 25 years’ experience. Sue started her career at The Chronicle Herald and has gone on to operate portrait studios in Vancouver and Halifax. Sue focuses much of her time doing corporate work in health care, banking and universities.
Research
Pain beyond pregnancy IWK researchers explore links between childbirth and chronic pain
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Whether it comes in the form of headaches, joint pain, stomach pain, fibromyalgia, or pain during sex, study after study has found that far more women than men suffer from chronic pain. Researchers at the IWK Health Centre suspect pregnancy and childbirth may play a significant role in raising women’s risk of chronic pain. They’ve formed the Women’s Pain Group to learn more about women’s pain and how they can help prevent and alleviate it.
STORY Melanie Jollymore Izaak Fall 2014 • Winter 2015
PHOTOS Scott Munn & 123RF
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he IWK Health Centre is home to some of the world’s leading experts in children’s pain — and, now, to one of the world’s first research groups dedicated to the study of women’s pain.
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Helping women cope with childbirth pain is a major focus for birth-unit staff on a daily basis at the IWK. Childbirth-related pain is also the primary focus of the Women’s Pain Group. “We are curious if the intense pain of labour — and how women experience and cope with that pain — could have a serious impact on their subsequent risk of developing chronic-pain conditions,” says Dr. Ron George, an anesthesiologist in the IWK Birth Unit and associate professor at Dalhousie Medical School who led the formation of the Women’s Pain Group. “So we need to learn more about what influences a woman’s experience of childbirth pain and how this affects her pain future.” As George explains, severe acute pain — such as a person might feel from a broken bone, serious infection, or major surgery — can change the nervous system, making it more sensitive to pain signals. There’s every reason to believe that childbirth pain —and even menstrual pain and the pain that develops in pregnancy — makes women more susceptible to developing chronic-pain conditions that may persist for years or throughout their lives. The role of pregnancy and childbirth pain in pre-disposing women to chronic pain has not been well studied to date, but George and his colleagues are changing that. In an effort to understand and address the complex factors that influence women’s pain, he’s joined forces with Dr. Erna Snelgrove-Clarke, a nurse researcher and clinician with many years of birth-unit experience, and two clinical psychologist-researchers — Dr. Jill Chorney, a specialist in surgery-related and chronic pain, and Dr. Natalie Rosen, an expert in women’s pelvic and genital pain. The involvement of psychologists in the Women’s Pain Group is key. “How people think and feel about pain has a huge impact on how they experience and recover from it,” says Chorney, who also provides psychological insight to a number of research projects involving children undergoing surgery at the IWK. “If someone sees pain as scary and overwhelming, the pain is going to be worse. If a woman goes into labour afraid of pain, her stress, tension and anxiety will not only increase her pain, it may make the birth itself more difficult, hinder her post-partum recovery and put her at risk of developing chronic pain.” Having helped hundreds of women deliver their babies over the years, Snelgrove-Clarke agrees that a woman’s attitude toward the pain of labour is crucial Izaak Fall 2014 • Winter 2015
to her ability to cope — but so are the attitudes of the health care providers around her. “Providers — mostly nurses in this case — can have a positive or a negative effect on a woman’s pain experience in labour,” says Snelgrove-Clarke. “A provider who is afraid of pain may transmit that sense of anxiety to the woman, which could make her pain worse, or urge her to seek pain relief at a threshold she could handle if she was more relaxed. A provider who sees pain as something that can be managed may help a women feel more confident and relaxed, which may make her experience less pain.” With her colleagues in the Women’s Pain Group, Snelgrove-Clarke is launching a study to learn more about how staff in the birth unit perceive labour pain, how this impacts what they say to women and how they support them during labour. “We’ll use our findings to develop training programs for staff, to teach them how to interact with women in the most supportive ways possible, to help minimize women’s anxiety — and therefore their pain — while maximizing their ability to cope and make the decisions that are right for them,” Snelgrove-Clarke explains. “Ultimately, we want women to feel as much in control of the pain as possible, because extreme, uncontrolled pain in labour can have lingering effects. It can slow down a woman’s post-partum recovery and take a toll on her mental and physical health, her ability to mother her infant, her relationship with her partner… it can even lead to post-traumatic stress disorder for some.” As an expert on women’s sexual pain, Rosen is particularly interested in how pain in pregnancy and childbirth contributes to pelvic and genital pain, and how this affects women’s day-to-day lives and their relationships with their intimate partners. In collaboration with the other members of the Women’s Pain Group, Rosen and Dalhousie PhD student Maria Glowacka have already published the results of a large pilot study in the Journal of Sexual Medicine (see sidebar page 11 for details about their findings). Based on the results of this study, which surveyed 150 women in late pregnancy and then two weeks and three months after birth, the researchers were able to secure $372,000 from the Nova Scotia Health Research Foundation (NSHRF) and Canadian Institutes of Health Research (CIHR) to conduct a much larger study, involving many more women over a longer period of time. “In our pilot study, we found that nearly half of the women experienced pelvic and/or genital pain during pregnancy,” notes Glowacka. “We were surprised, this was more than we were expecting. We were also intrigued to find that most of the women developed
PHOTO: Right: Dr. Ron George is an anesthesiologist in the IWK Birth Unit and associate professor at Dalhousie Medical School who led the formation of the Women’s Pain Group. He explains that severe acute pain — such as a person might feel from a broken bone, serious infection, or major surgery — can change the nervous system, making it more sensitive to pain signals. There’s every reason to believe that childbirth pain — and even menstrual pain and the pain that develops in pregnancy — makes women more susceptible to developing chronic pain conditions that persist for years or throughout their lives.
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the pain during pregnancy — very few had it start after the birth — and that whether or not they had a caesarean or vaginal delivery, with or without forceps or tearing, made no difference to their pain three months after delivery. This raises a lot of interesting questions about the underlying causes of the pain.” The researchers will explore these questions in the NSHRF-CIHR-funded study, which in early 2015 will begin enrolling firsttime moms entering their second trimester of pregnancy. “Our goal is to recruit 1,500 women, survey them during their pregnancy, and then follow-up with several email surveys,” says Rosen, the study’s lead investigator. “By comparing the women who develop persistent pain to those who don’t, we aim to identify what factors contribute most
Izaak Fall 2014 • Winter 2015
to the pain, and learn how this pain effects women’s sex lives, their relationships, their plans for more children, and their mental health.” It’s important to rule out physical factors, like infection, scarring, or skin conditions, which could contribute to pelvic or genital pain, so the pain researchers have brought IWK gynecologist, Dr. Marianne Pierce, into the project. She will conduct gynecological exams on some participants, to help identify causes of pain. Once direct physical causes are ruled out, the researchers will look to other factors to understand the source of the women’s post-partum pelvic and genital pain. “We expect that pre-existing pain conditions, previous bad experiences with pain, and uncontrolled pain during the birth will contribute to lingering pelvic and genital
PHOTO: The Women’s Pain Group seeks to understand what factors make some women more susceptible to continued pain long after pregnancy and childbirth are over. This work will lead to more effective ways of supporting women to manage their pain. The researchers include (from left) Dalhousie PhD student Maria Glowacka and IWKDalhousie researchers Dr. Natalie Rosen, Dr. Jill Chorney and Dr. Erna Snelgrove-Clarke.
pain,” Rosen says, “but even more influential may be women’s perceptions of pain and their ability to cope.” From the study, the researchers hope to develop a pain-risk profile that prenatal health care providers can use to identify women at risk of developing chronic pelvic and/or genital pain after pregnancy and childbirth. “Women who are more anxious about pain, or prone to thinking it means something worse than it does, are likely most vulnerable,” explains Rosen. “We want to develop and test interventions that will help these women re-frame their thinking and reduce their anxiety, to reduce their risk of this pain becoming a chronic problem that affects their relationships and quality of life.” The Women’s Pain Group researchers hope to secure funding to explore many more facets of women’s pain. “Through the Dalhousie Pain Group, we’re connecting with chronic pain researchers at the QEII Health Sciences Centre, exploring new research directions to help women who are suffering from pain,” says Ron George. “This is a huge and important area of research, as women carry by far the greatest burden of chronic pain. We’re really just getting started.”
Pregnancy pain can linger after baby Just under half of the 150 women who took part in an IWKDalhousie pilot study of childbirth-related pain experienced pelvic and/or genital pain. Most started having the pain in pregnancy — only seven per cent had it start after the birth. The pain went away for 60 per cent of the women, but continued for 40 per cent. Recently published in the Journal of Sexual Medicine, these results show that this kind of pain affects far more women, for longer periods of time, than researchers had previously thought.
WOMEN’S PAIN GROUP Jill Chorney, PhD—IWK clinical psychologist and assistant professor, Dalhousie departments of Anesthesia, Pain Management & Perioperative Medicine, Psychology & Neuroscience Ronald George, MD, FRCPC—IWK anesthesiologist and associate professor, Dalhousie Department of Anesthesia, Pain Management & Perioperative Medicine Natalie Rosen, PhD—IWK clinical psychologist and assistant professor, Dalhousie departments of Psychology & Neuroscience, Obstetrics & Gynecology, Psychiatry Erna Snelgrove-Clarke, RN, PhD—IWK staff nurse and assistant professor, Dalhousie School of Nursing and Department of Obstetrics & Gynecology
Do you or your partner experience pain during sex? Learn about research taking place in the Couples and Sexual Health Research Laboratory
natalieorosen.com
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Izaak Fall 2014 • Winter 2015
Photo: Scott Munn
World-leading advancements in genetic screening
IWK’s Molecular Diagnostic Lab uses new high-tech equipment to provide families with more insight sooner and more safely STORY Jane Doucet
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echnology that makes it possible to detect illnesses and genetic abnormalities in babies before they are born has been available for some time, but the complexity of the testing, its precision and the turnaround time for results continues to improve. The IWK Health Centre offers excellence in care to pregnant women, including standard screening tests for birth defects, such as ultrasound and maternal serum screening, and diagnostic testing using amniocentesis and other procedures. “We’re the major referral centre for prenatal screening in Nova Scotia and P.E.I.,” says Dr. Jo-Ann Brock, a high-risk obstetrician in the Division of Maternal-Fetal Medicine and a molecular geneticist in the IWK’s Molecular Diagnostic Laboratory.
Clinician researchers join forces for better pre-natal screening
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Brock and her colleagues — Dr. Christie Riddell, the division head of the Molecular Diagnostics Laboratory, and Dr. Karen Harrison, the division head of the IWK’s Cytogenetic Laboratory — are forging a new collaboration to allow for even more precise screening than currently exists, and there’s an important need for it. Every year in Canada, roughly one in 25 babies is diagnosed with one or more
“congenital anomalies” — birth defects such as kidney or heart problems, spina bifida, cleft palate or club feet. If a woman is considered to be at high risk of having a baby with a genetic disorder or birth defect, ultrasound evaluations are usually performed during the pregnancy at 12 to 13 weeks and then again at 18 to 20 weeks by subspecialist high-risk obstetricians in the IWK’s Fetal Assessment and Treatment Centre. Maternal serum screening, a blood test that provides more information about certain genetic disorders, is also routinely offered to pregnant women in the first and second trimester. If the ultrasound or maternal serum screening indicates a high risk of birth defects, the patient is offered additional diagnostic tests to rule out or confirm a possible genetic condition. Genetic diagnostic testing requires a sample of fetal DNA, usually obtained by amniocentesis. For this procedure, a needle is inserted into the uterus through the mother’s abdomen, with ultrasound guidance, and a small amount of amniotic fluid is removed. There is a small risk of miscarriage (less than one per cent) after amniocentesis. Laboratory tests performed on fetal cells and DNA found in the amniotic fluid sample can identify certain genetic disorders, helping parents make important decisions about early treatment and intervention. The amniotic fluid sample is routinely sent to the Cytogenetic Laboratory, where the cells are cultured and the chromosomes analyzed. It may take two to four weeks for patients to learn the results — an agonizingly long wait. Working together, Brock and Riddell introduced a molecular test to the IWK to get quicker results for certain genetic conditions. This targeted molecular test can diagnose specific genetic conditions directly from the DNA of amniotic fluid. “The advantage is that we no longer have to culture cells, and we can usually get a result within two to three days,” says Brock. While this significantly reduces the amount of time that parents have to wait for results, this test still requires amniocentesis, so the small risk of pregnancy loss remains.
Collecting babies’ DNA from moms’ blood Over the past several years, new technology has been developed to examine the baby’s genetic material from fetal DNA that can be found in the mother’s bloodstream. “A sample of the mother’s blood can be sent to a specialized lab for testing,” says Brock. “It’s a simple blood test that then involves some very complex lab work.”
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Photo: Sue Siri
Using this new technology, scientists are now able to detect and analyze fetal DNA in the mother’s blood to screen for certain genetic conditions as early as 10 weeks into a pregnancy. Although this test is almost as accurate as diagnostic testing from amniotic fluid, it’s still a screening test, and rare false positive and negative results can be encountered. In 2011, using the technology, a targeted prenatal-screening blood test was introduced in the United States. Researchers at the IWK were involved in the first multi-centre clinical trial to develop this test. With the support of the many pregnant women who chose to participate in the study, the IWK was one of the largest Canadian contributors of blood samples. This test, referred to as NIPT (non-invasive prenatal testing), screens for abnormalities of chromosome 21 (Down syndrome), as well as chromosomes 13 and 18, which are three common genetic conditions associated with fetal abnormalities in pregnancy. Since the first clinical trial was completed, researchers at the IWK have continued to invite high-risk patients who have chosen to have amniocentesis for diagnosis to
Izaak Fall 2014 • Winter 2015
participate in additional trials to improve performance of NIPT. While the blood test is not yet covered or conducted in Nova Scotia, women who have a high-risk screening result — either from the routine maternal serum screening tests or ultrasound findings — are counselled about NIPT as an alternative to amniocentesis. If a woman wishes to pursue and pay for this testing option, her blood sample is collected and sent to specialized labs. Ultimately, the hope is that NIPT will become part of routine care offered to women with high-risk pregnancies at the IWK.
Unique partnership takes genetic testing to a new level Cytogenetics is the branch of genetics that studies the structure and function of chromosomes. Traditional chromosome analysis has recently benefited from the introduction of a high-resolution molecular technique called chromosomal microarray. This technique can identify changes in genetic material that are too small to be de-
PHOTO: A state-of-the-art microarray instrument becoming available to the IWK genetics testing service. The instrument was provided by Dalhousie Medical School researcher, Dr. George Robertson, but is operated and maintained in the Molecular Diagnostic Laboratory at the IWK. This set the stage for a microarray testing service to be developed that truly bridges the gap between molecular and cytogenetic science.
“Microarray resolution is 25 to 50 times higher than cytogenetic testing can provide, which means we’re learning so much more about the chromosomes and getting very accurate information. It’s an exciting field with lots of technological advances.” — Dr. Karen Harrison, division head of the IWK’s Cytogenetic Laboratory
Photo: Sue Siri
PHOTO: The IWK’s molecular-genetic sleuths (from left), Dr. Jo-Ann Brock, a high-risk obstetrician in the Division of Maternal-Fetal Medicine and molecular geneticist in the IWK’s Molecular Diagnostic Laboratory, Dr. Karen Harrison, division head of the IWK’s Cytogenetic Laboratory, and Dr. Christie Riddell, division head of the Molecular Diagnostics Laboratory.
Community contributes to prenatal and newborn screening Thanks to the generosity of donors, the IWK Foundation was able to help the IWK replace an aging piece of equipment used for Maritime-wide maternal serum testing in early pregnancy, to screen for serious chromosomal abnormalities. The new donor-funded equipment, called the Autodelfia, is also used every day at the IWK to screen newborns for thyroid deficiency which, if diagnosed late, can affect the child’s intelligence.
tected by traditional chromosome analysis. While a microarray facility is expensive to develop, a unique partnership between clinical and research ventures resulted in a state-of-the-art microarray instrument becoming available to the IWK genetics testing service. The instrument was provided by Dalhousie Medical School researcher, Dr. George Robertson, but is operated and maintained in the Molecular Diagnostic Laboratory. This set the stage for a microarray testing service to be developed that truly bridges the gap between molecular and cytogenetic science. Riddell and Harrison set up the microarray testing service, which has been available for post-natal genetic testing since December of 2012. Although the Molecular Diagnostic Laboratory and the Cytogenetic Laboratory operate separately, they work closely together as part of the IWK’s Microarray Team. “We’re combining the technical and clinical expertise of the two labs for test interpretation, which has been very beneficial,” says Harrison. Microarray testing is usually only performed to detect certain birth defects. In infants who are born with obvious birth defects, microarray can be helpful in making a clinical diagnosis. It has also been shown to provide better diagnoses in children when there are concerns with development
and growth, including delayed speech, vision or hearing problems; delayed motor skills such as sitting, crawling or walking; and behavioural issues that could be related to autism spectrum disorder. Microarray testing can be done at any age as symptoms present themselves, even into adulthood. This high-resolution test has other future applications, such as the potential to test cancer genes in children with leukemia. “Microarray resolution is 25 to 50 times higher than cytogenetic testing can provide, which means we’re learning so much more about the chromosomes and getting very accurate information,” says Harrison. “It’s an exciting field with lots of technological advances.” Recent research has also shown that microarray can provide more prenatal information than traditional chromosome analysis. While for now the IWK is only offering post-natal microarray testing, Harrison believes that microarray for pregnant woman isn’t far away and will hopefully be available for IWK patients within the next year. “We want to give families the best information we can,” she says. “With prenatal screening, quicker answers and improved diagnostic testing means that women with high-risk pregnancies can get accurate information earlier in their pregnancies and benefit from various infant programs at the IWK after their babies are born.”
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Research
The truth about vaccinations World-leading IWK immunization expert, Dr. Noni MacDonald, shares insight on a complex and timely topic STORY Lindsey Bunin
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he digital age in which we live has greatly changed the way we gather and process information. If we have a question these days, most of us just “Google it!”
While the convenience of immediate information can suit our desire for instant gratification, it’s not necessarily the most accurate approach. This is especially true when it comes to the often-controversial topic of vaccines. Dr. Noni MacDonald is a professor of pediatrics at Dalhousie Medical School with an appointment in Pediatric Infectious Diseases at the IWK Health Centre, and her expertise has afforded her opportunities to teach and practice in countries around the world. One of MacDonald’s major research interests is vaccines, particularly in the areas of safety, hesitancy, pain mitigation and policy issues. She is a key member of the research team at the Canadian Center for Vaccinology at the IWK, has published more than 300 papers on such topics and has long been recognized in Canada as an advocate for child and youth health and as a leader in pediatric infectious disease. In an effort to help clarify vaccination information for families, MacDonald has provided insight into some commonly asked questions.
Izaak Fall 2014 • Winter 2015
Aren’t my children safe if everyone else’s children are vaccinated? “Some vaccines work better when everyone is vaccinated,” MacDonald says. “This is called ‘herd’ or ‘community’ immunity. If everyone is vaccinated for measles, for example, the virus will stop circulating. However, herd immunity doesn’t work for other diseases, such as tetanus, because the tetanus bacteria are in the environment, in soil and dust. “Besides, you don’t know if everyone around you is vaccinated, and people travel far and wide in our mobile society. You’re taking a huge risk if you’re depending on everyone else to be vaccinated to protect you or your child from measles, for example.”
Aren’t vaccines only for infants and children? “Most vaccines are for infants and children because there is no natural protection from many serious vaccine-preventable diseases such as pertussis, tetanus, diphtheria, measles, some strains of influenza, meningitis, etc. While a mother transfers some of her antibodies to the infant during pregnancy, these do not last very long after the baby is born. Similarly, the antibodies in breast milk are not enough to protect the infant from many of these diseases. “An increasing number of vaccines are being developed for adults so they will be protected into old age, the shingles vaccine is one example. It’s also been proven that immunizing adults can help protect infants and children. For example, re-immunizing adults (a booster) for whooping cough prevents infected adults from passing this terrible disease to infants: parents and grandparents take note!”
Wouldn’t natural immunity be better? “Immunity induced by vaccines is effective and much safer than natural infection. Vaccination is a better choice because it avoids the risk of getting some terrible disease complications, like brain damage with measles, deafness with mumps, death with tetanus and pertussis, and more,” MacDonald explains. “We’re also learning more about boosting childhood vaccinations with repeat vaccinations later in life, to ensure immunity doesn’t wane as we get older.”
Now that major illnesses have largely disappeared, we really don’t need vaccines anymore, do we? “The success of vaccines makes it appear that many infectious diseases have disappeared, but sadly that’s not true,” she clarifies. “There are outbreaks of measles and whooping cough throughout North America, and a resurgence of polio in Asia, Africa and the Middle East. Vaccination rates must be very high (over 90 per cent) to stop the spread of these viruses and bacteria, so when not enough people are vaccinated outbreaks can occur. Today, people travel far and wide and may not be aware that they’re not just bringing luggage with them.”
Do vaccines cause autism and other disorders? “Vaccines do not cause autism. The increased rates of autism are in part the result of changes in the way the condition is assessed or recognized. Autism is known to be a genetic disorder with other contributing factors, but vaccines are not a factor. There is no proof that vaccines cause autism or any other diseases, like multiple sclerosis, but there’s plenty of proof that vaccines prevent very serious infectious diseases.”
Is it true that vaccines have damaging and long-term side effects that are yet unknown? “Vaccines have been used over many decades in millions of people around the world. Extensive global networks track reactions to vaccines known as ‘adverse events following immunization,’ to find out which events are due to vaccine, and which are just coincidence (not caused by vaccine). “There are now many years of data that prove the safety of vaccines. The global networks alert health professionals to any new concerns about a vaccine. The most commonly reported reaction is a sore arm.
The risks of serious complications from contracting diseases like measles, whooping cough and hepatitis are much more common and can be far more serious than any adverse event from a vaccine.”
Why don’t we consider vaccinepreventable childhood illnesses as just an unfortunate fact of life? “They used to be, and millions of children died from diseases that are now prevented with vaccination,” MacDonald says. “Thousands of children still suffer from these diseases because they don’t have access to the range of vaccines we have in North America. We’re privileged to live in a country where so much serious illness, disability and death can be prevented with a few doses of vaccine.”
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Research Can’t the flu vaccine give you the flu or make you sick?
Do you think the flu vaccine is really effective?
“The flu vaccine cannot give you the flu. The flu virus used in the vaccine is killed or broken when the vaccine is manufactured. The flu vaccine is given when many flu-like illnesses are already circulating in the population so, if you get sick following your flu shot, it isn’t from one of the influenza strains contained in the vaccine. The ‘real’ influenza is a very serious illness and not to be confused with a cold or stomach illness.”
“Influenza is a very sneaky virus that changes its outer coat every year. This is why a new version of influenza vaccine has to be made and given each year. Sometimes the experts are able to make the vaccine match well to the new influenza strain, other times the match is not so good. When the match is spot on, the vaccine is very effective; when it is less well matched, it is less effective BUT still far better protection than if no influenza vaccine is taken.
“Antivirals and other off-the-shelf medications are not very effective against influenza, so the treatment for influenza is simply bed rest and lots of fluids. Influenza is quite contagious. If you’re not protected by vaccine when exposed to someone incubating or having influenza, you easily become infected and then spread it to others who are not immunized in your family, at work, at school, etc. For many people, the extreme fatigue from influenza is very debilitating and disruptive to their lives, even if they do not get one of the more serious complications. It’s so much easier to just get a flu shot.”
Going viral with virus-prevention messages With flu season just around the corner, parents and kids can fearlessly face needles with tips from IWK’s pediatric pain researchers STORY Lindsey Bunin
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As a mother of four young children, child psychologist Dr. Christine Chambers is intimately familiar with pediatric pain. With two decades of experience with, and research in, children’s pain, she can confidently say that almost all patients with needle phobia can trace it back to one poorly managed procedure as a child. Many parents and children also avoid getting the flu shot because of the pain and fear they associate with needles. Now, she’s endeavouring to put qualified research into easy-to-understand packages to better educate parents. “As a parent I have realized that good information about pain management isn’t out in the public. Most parents think that everything possible is already being done to help kids with pain, but sadly pain in children doesn’t always get the discussion it deserves.” Through a fellowship in media and advocacy, Chambers developed a platform to reach parents directly about children’s pain. She earned a grant through the Nova Scotia Health Research Foundation — the Knowledge Sharing Support Award — to assist in producing a video for parents called “It Doesn’t Have to Hurt.” Released in November 2013, the campaign was developed with the help of a team, including another IWK pediatric pain expert, Dr. Marsha Campbell Yeo, the IWK’s head of infectious diseases, Dr. Scott Halperin, researchers from Sick Kids in Toronto, and Dalhousie trainees. Boiling the information down into a 2-minute, 19-second video was a challenge for Chambers and her team who, by the very nature of their jobs, are accustomed to qualifying every last detail. They had to focus only on the critical points. “Our research has shown us that poorly managed pain early in life does have a long-term impact on children’s brains and bodies — making them more likely to feel pain,” she says. “No one likes getting a needle, but 1 in 10 children develop some kind of severe needle phobia. Individuals with needle fears tend to avoid going to the doctor, and that can negatively impact their medical care for the rest of their life.” The video’s strategies have evolved from research-supported interventions — Chambers and her team have written practice guidelines that were published in the Canadian Medical Association Journal. It is the tip of the iceberg in Chambers’ greater goal of
Izaak Fall 2014 • Winter 2015
Watch “It Doesn’t Have to Hurt” at www.bit.ly/1zRvCwj
educating parents about children’s pain using social media. “Our goal is to empower parents and let them know that there are things they can do to make their kids’ pain better.” More than 40,000 views later, “It Doesn’t Have to Hurt” continues to circulate as a valuable teaching tool for parents around the world, with the video having been viewed in more than 100 countries so far. At press time, a French translation of the video was being developed and Chambers’ team is exploring more opportunities for videos and evolving it into a series. “With flu shot season in full swing, we’re hoping to see more shares to build momentum around this important message,” Chambers says. “Getting your children vaccinated doesn’t have to hurt!” Dr. Christine Chambers is part of a team of leading children’s pain researchers in the Centre for Pediatric Pain Research at the IWK. She and her colleagues are transforming our understanding of children’s experiences of pain — both in hospital and during everyday life — and sharing their proven methods of alleviating children’s pain.
Establishing a lasting legacy Newly appointed research chairs drive excellence in autism and epilepsy
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STORY Melanie Jollymore | PHOTOS Scott Munn
Research
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Dr. Isabel Smith he IWK Health Centre welcomes two new research chairs to its community this year, both in the area of brain health. Dr. Isabel Smith, recently named Joan & Jack Craig Chair in Autism Research, is leading the way to better outcomes for children and families living with autism spectrum disorder. Dr. Alon Friedman, the new William Dennis Chair in Epilepsy Research, seeks to prevent brain diseases, like epilepsy, that can be triggered when blood vessels are damaged in the brain. Both of these research chair positions are supported by endowment funds that generate funding to support leading researchers in the fields of autism and epilepsy, in perpetuity. This is good news for Maritime families, who will benefit from the results of this research for many years to come.
Izaak Fall 2014 • Winter 2015
Joan & Jack Craig Chair in Autism Research For Dr. Isabel Smith, a long-time clinician and researcher on the IWK Autism Team and an associate professor at Dalhousie University, it is important to advocate on behalf of her patients: “Becoming a research chair has given me an opportunity to be a voice — to take what research tells us to the government, to the autism care community, to the public — and be heard.” Smith’s big focus is to ensure that autism treatment programs in the Maritimes are organized and delivered to provide the most help to the most kids. Since 2005, she and her research team have been studying the impact of Nova Scotia’s early-intervention program for preschoolers with autism spectrum disorder. More recently, an expanded team has begun comparing the cost-effectiveness of the Nova Scotia and New Brunswick early-intervention programs, to identify what kinds of interventions — delivered in what ways, in what settings and at what cost — result in the greatest gains for children with autism
spectrum disorders. “It’s fundamentally about seeing how we can make the best use of scarce resources to help as many children as possible grow up to be independent, productive and happy,” says Smith. “We’re also hoping to learn to predict which children will benefit most from which kinds of interventions, at what age, so we can fine tune our approach and maximize the success of the programs.” Smith and her team are working in partnership with the governments of Nova Scotia and New Brunswick so, as she says, “we ask the right questions and the answers are applied.” Smith and IWK collaborators recently received a Translating Research into Care (TRIC) grant, funded by IWK Foundation donors, to explore what steps can be taken in the IWK day surgery unit to reduce distress for children with autism who are in for surgery.
What is a research chair? A “research chair” is a special academic appointment that recognizes a researcher as a leader in his or her field. Being named as a research chair raises a researcher’s profile on the world stage and increases the influence of his or her work. But chairs are more than just titles —they come with a stable base of permanent funding that enables researchers to attract more funding and talented trainees. As a result, research chairs are able to build highly successful research programs that make a lasting impact.
A visionary gift Endowed research chairs are made possible by generous donors who have a long-term vision to support an area of research that’s important to them. By giving a significant gift to be endowed through a university or foundation, donors make a lasting impact far into the future. Endowed gifts are carefully managed to protect the principal — only the income earned each year is used to support the research.
Dr. Alon Friedman William Dennis Chair in Epilepsy Research For Dr. Alon Friedman, the offer of a research chair at Dalhousie University was a big part of the opportunity that attracted him to Halifax and the IWK Health Centre from Ben-Gurion University in Israel. “The William Dennis Chair provides me with a stable base of funding to run my research program,” says Friedman, who arrived in Halifax this July. “I’m very happy to be here, there are a lot of clinicians and researchers who want to collaborate, this is an excellent place for translating basic science findings to patient care. “It was also appealing to me that the Dennis family cares so much about epilepsy research, they would fund a research chair. It’s important to me that people in the community are promoting and supporting research.” Friedman’s goal is to prevent epilepsy, or to diagnose and treat it so early that the disease can be cured. He plans to do this by developing new technology for detecting damaged
blood vessels in the brain, along with new treatments for repairing them. “When blood vessels are damaged in the brain, proteins are able to move from the bloodstream into the brain, where they harm the neurons,” Friedman explains. “This can lead to epilepsy, and also to cognitive impairment, chronic traumatic encephalopathy, and other brain diseases.” Friedman plans to launch North American clinical trials of a blood-pressure medication called Losartan, to see how well it prevents seizures after head injury. He says stress, infections, strokes — and even seizures — can also compromise blood vessels in the brain and pre-dispose a person to epilepsy. He’s searching for new agents to protect the blood-brain-barrier from this damage, to effectively treat and prevent epilepsy.
Donor gifts are often augmented by additional gifts — secured by such charitable organizations as the IWK Foundation, Dalhousie Medical Research Foundation and the QEII Foundation, as well as Dalhousie University — to build a fund large enough to generate substantial income every year, in the primary donor’s name. Working together and with donors, these partners have established numerous endowed chairs in health research at the IWK, Dalhousie and the QEII, in such crucial areas as autism, epilepsy, adolescent mental health, psychotic disorders, vision, and Alzheimer’s disease. The current chair holders are leading the way to health care advances to make life better for children and families in the Maritimes and beyond.
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Research: News
Organized curiosity New blog explores how curiosity fuels research and leads to better care
PHOTO: Above: (L to R) Keynote speaker, Dr. Danielle Martin, shares her ideas at the inaugural Now or Never innovation forum in Halifax while panellists — Dr. Kathleen MacMillan (Dalhousie School of Nursing), Laura Fraser (The Chronicle Herald), Dr. John Sullivan (QEII, Doctors Nova Scotia) and Gerry Post (patient/community advocate) — listen carefully.
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Now or Never “3 big ideas” innovation forum draws crowd of 600
More than 600 Nova Scotians with a passion for preserving and improving our health care system packed the Spatz Theatre at Citadel High School in Halifax on September 30. They were all there to hear Dr. Danielle Martin — the Ontario physician who inspired us with her defence of Canada’s health care system at a U.S. Senate sub-committee last spring — share her “three big ideas” on how to improve the health care system for every Canadian. Martin explained how public coverage of all medically necessary drugs, knowing when “less is more” in medical care, and a basic guaranteed income would result in better health and safer, more efficient, equitable health care for Canadians. She also noted that ongoing research and knowledge translation is essential for evaluating new approaches and ensuring the best models are adopted nationwide. Another 300 participants watched livestreaming video of the event on The Chronicle Herald’s website. Audience members played an active role, offering their views in a lively discussion following Martin’s and the panellists’ remarks. Dr. Martin was the first speaker in a planned series of public forums titled Now or Never: Innovation in Health Care. The series is a joint initiative of the IWK Health Centre, Capital Health, the IWK Foundation and the QEII Foundation, to engage the public and health care decision makers in conversations about the need to consider research evidence in health care systems and decision making. “Having a speaker with the ideas, experience and profile of Dr. Martin to begin our series is very exciting,” says Dr. Patrick McGrath, Integrated Vice President Research and Innovation at the IWK Health Centre and Capital Health, who initiated the series of public forums. “Her transformative ideas have set the tone for future events as we engage in a dialogue about health care with Nova Scotians.” McGrath adds, “One of my values is that the public should be involved in health care decisions. There is, in my opinion, an inherent wisdom in the population that can only be liberated if values are discussed and research shared.” The next Now or Never innovation forum will take place in the spring of 2015.
What is research, really, but organized curiosity? It all starts with people who want to satisfy their curiosity and answer their burning questions — how does this work? What goes wrong? How can we make it better? As a long-time researcher in children’s pain and mental health, Dr. Patrick McGrath knows all about curiosity and how the desire to know lead scientists and health professionals to discoveries, big and small, with transformative potential. He explores many facets of research in his new blog, Organized Curiosity: Improving health care through research. Recent blog titles include, “I want my health care standardized AND I want it personalized, too,” “The one time my mom was wrong,” and “Chronic pain patients shunned by family doctors?” In addition to his own thoughts about how health care can be improved by using research data, rather than just opinion, McGrath invites comments from readers and contributions from guest bloggers. To satisfy your curiosity, visit organizedcuriosity. wordpress.com/ PHOTO: Below: As a researcher, Dr. Patrick McGrath asks lots of questions. As a child psychologist, he answers them. Visit his “Ask Dr. Pat” parenting-advice column, www.iwk.nshealth.ca (click “Ask Dr. Pat”).
Photo: John Sherlock
Izaak Fall 2014 • Winter 2015
Magnetic attraction
New TRIC grants target patient safety and wellbeing
BioMag 2014 draws hundreds to Halifax Researchers in the Biomedical Translational Imaging Centre (BIOTIC) at the IWK organized and co-hosted BioMag, the world’s leading scientific conference on biomagnetism, in Halifax this August. More than 500 delegates, many accompanied by family members, converged on the city for the week-long event. The focus of this year’s BioMag meeting was on how to apply the latest findings in biomagnetic science — which measures and studies human magnetic fields — to creating superior technologies for clinical imaging of the body and brain. IWK researchers in BIOTIC’s Magnetoencephalography (MEG) lab forged new connections with potential international research partners that will further the already-groundbreaking advances taking place in this facility.
Photo: John Sherlock
PHOTO: Above: Newborns in neonatal intensive care units fare better when their surroundings are quiet and peaceful. 23
The last issue of Izaak introduced a truly unique research grant program designed to get researchers and health administrators working together to address important issues on the frontlines of care. “Translating Research into Care,” or TRIC, grants are awarded two times a year to researcher-administrator teams with a solid research plan that will give them the evidence they need to make the right changes to improve the quality of care. The most recent round of TRIC grants, awarded earlier this fall, will address such issues as:
PHOTO: Above: Researchers in the MEG lab at the IWK are pioneering child-friendly, non-invasive ways to map the brain before surgery. They are learning how to locate the brain centres for languagelearning and motor control, for example, so brain surgeons can avoid these to safely remove tumours and lesions that cause epileptic seizures.
Excellence is in your hands. Make a gift at iwkfoundation.org.
Safer cancer treatment for kids Many kids with cancer require a “central line,” which is a piece of tubing inserted into a large vein via catheter to deliver cancer medications and take blood samples without having to make a new puncture every time. While life-saving, these catheters can lead to blood clots, infections and other problems in as many as half of the children who have them. The researchers want to learn if there are ways to identify which kids are at risk of these complications, so they can be better managed (i.e., with clot-busting drugs) to prevent problems. Better flu protection for patients This study aims to protect the public by improving uptake of flu vaccinations among health care providers in acute and long-term care facilities. Influenza causes more deaths in Canada than any other vaccine-preventable disease, and patients in hospital are among those most at risk of dying from the flu. The researchers aim to cut the chances of patients picking up the virus from a care provider, by using their findings to develop a plan for increasing flu-vaccination rates among these health care providers. More peaceful environments for healing The researchers behind this study want to support the wellbeing of babies and children in the IWK’s neonatal and pediatric critical care units by ensuring the most quiet and peaceful environments possible. They know that noise has been directly linked to outcomes for babies and children in critical care. They are looking for clinically feasible, evidence-based ways to reduce sound levels in these units, so that upcoming renovations incorporate these measures in their plans.
Feature
Birthing at home
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IWK midwives make it possible for more families to welcome babies to the world safely at home
STORY Lezlie Lowe | PHOTOS Contributed
Izaak Fall 2014 • Winter 2015
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Excellence is in your hands. Make a gift at iwkfoundation.org.
Feature
“We don’t get the outcomes we get because we have ‘registered midwife’ after our names. We get the outcomes we get because we spend so much time with women.
We develop a trust.”
— Kelly Chisholm, IWK midwife
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helly Juurlink sits in her Fall River living room, pointing left, pointing right. There’s the spot on the floor where she laboured for eight hours in a birthing pool. There’s the spot the futon was set up, where her seven-pound, five-ounce boy slid out, under the care of Shelly’s husband, Perry Sankarsingh, and the couple’s doula and two IWK midwives. “We christened this place,” Shelly says, laughing. “We were really happy we were able to do it here.” After their son Lennon was born, Perry cooked breakfast for the whole team — coffee, eggs, toast and fresh mango. Shelly rested, ate and nursed the baby while everyone hung out for a few hours, talking about the birth and debating what name this new little baby, who was not arriving home, but being home for the first time, would be called. “They helped make it a celebration,” says Perry of the midwives and doula. This isn’t a birth the way many Nova Scotians picture it, and it’s one the IWK is happy that women in HRM are able to access. Midwife-attended births became a core part of IWK care when midwives were first registered by the province five years ago. IWK midwives’ scope of practice includes hospital births and home births, both with a focus on low-intervention and relationships. “We don’t get the outcomes we get because we have ‘registered midwife’ after our names,” says Shelly’s midwife, Kelly Chisholm. “We get the outcomes we get because we spend so much time with women. We develop a trust.” Chisholm and her colleagues remain in contact with some clients for years. (Almost on cue, a mom and new baby walk into the café where Chisholm and I are meeting. They hug, and coo over the baby, Izaak Fall 2014 • Winter 2015
who’s nursing inside a Snugli. The scene is repeated with a different mom a few minutes later. Another former client walks by the window and waves enthusiastically). “There’s barely a coffee shop I can go to without running into somebody,” says Chisholm, who has attended between 400 and 500 births. “It’s really nice.” The 41-year-old’s story of deciding to go into midwifery has an unlikely setting indeed: she watched a mother sea turtle lay her eggs on a Guyanese beach as part of an overseas youth outreach trip during university. “They cry these big jelly tears and they moan. It’s beautiful. It’s amazing. I walked away from that and I was, like, I want to do that with human beings.” IWK midwives conduct prenatal visits off site at a Dartmouth clinic that isn’t much like a clinic at all. “It’s set up so that women feel like they’re more in their living room,” Chisholm says. There are chaises instead of exam tables and space for soon-to-besiblings to play. (A big bonus for Shelly, who needed to bring her twoyear-old daughter, Lilah, with her to her check-ups). Prenatal appointments last about 30 minutes. Some postnatal visits are conducted in the family home. “In terms of a service experience,” says Perry, “it’s great for the family. We never had to pack up a little baby and go to the hospital for check-ups when he was two or three weeks old. They came there.” Perry says home birth wasn’t even on his radar before he met Shelly. With their first baby, he says, it took some convincing. Now he’s a convert. “Going to bed as a family two hours after you have given birth is a pretty great feeling.”
PHOTOS: Left: Registered midwife, Erin Bleasdale, checks on baby Lennon just moments after he is born in his Fall River home. Midwife-attended births became a core part of IWK care when midwives were first registered by the province five years ago. IWK midwives’ scope of practice includes hospital births and home births, both with a focus on lowintervention and relationships.
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Another difference with the midwifery model is exceptional continuity of care, says IWK VP Patient Care, Jocelyn Vine. In a family practice care model, women may have good continuity throughout their prenatal care, but when the day (or night) of delivery arrives, that woman’s physician may not be on call. “Midwives are on call for one another,” says Vine, “but they work hard to ensure that the woman knows that other midwife in the case of her primary practitioner being busy. It’s partly the relationship you are able to form throughout the journey.” Shelly was lucky to get into the IWK midwives’ care. She and Perry had moved to Nova Scotia from Ontario mid-pregnancy and were first with a midwife in Antigonish. They moved again to Halifax and happily made it onto Chisholm’s roster only a month before Lennon’s birth. A little fewer than 10,000 babies a year are born in Nova Scotia, half of them at the IWK. Only one per cent are midwife-attended. “It’s a very small subset,” says Vine, “but it could be bigger. Because the number of women who have normal, low-risk births is a fairly large group.” The small number of midwife-attended births isn’t because the practice — which is a registered medical profession and thousands of years old — is an outlier. In fact, demand for midwifery services in HRM far outstrips the IWK’s resources. Chisholm is one of six midwives (four full time and two part time) in a practice that takes in 16 to 20 women a month. Protocol requires a midwife and a second birth attendant at all births, so the program just hired five birth-unit nurses to act as home-birth attendants. Izaak Fall 2014 • Winter 2015
PHOTOS: Left: Registered midwives Erin Bleasdale (L) and Kelly Chisholm (R) weigh baby Lennon. Right: Erin Bleasdale (L) and Kelly Chisholm (R) join mom Shelly Juurlink and doula Wanda Cox in welcoming baby Lennon in the family’s Fall River home.
But that doesn’t change the demand for the service. “We could keep at least one or two more full-time midwives busy, starting tomorrow,” Chisholm says. Chisholm, who’s in her 14th year of “baby catching”, was self employed for a decade in B.C. and New Zealand before coming home to join the IWK. But she feels strongly about hospital affiliation. “We needed to be a part of the IWK when we became registered, because that was how buy-in was going to take place in terms of all the other professions. The public has a huge amount of respect for the IWK, so it gave us the credibility instantly.” Sanction, it turns out, has been a two-way street. Births at the IWK run the gamut from those following the most healthy low-risk pregnancies, to the most complicated highrisk situations. Jocelyn Vine says the IWK has a strong record when it comes to low-intervention birthing for low-risk pregnancies. But the midwives, she says, “have helped ground us in that practice. I think we were good before. But we are better now.” Low intervention was exactly what Shelly wanted and midwifery was her chosen road to get there. Her daughter, Lilah, was born at home with the assistance of a midwife in Guelph. Even with her first pregnancy, she didn’t have any reservations about delivering at home. Trust in the home-birth process, Shelly says, stems from trust in the midwives. Perry admits he was concerned about the what-ifs, more with this birth than with their first. In Guelph, the couple were three minutes by car from the hospital. Here, the IWK
is half an hour away on Hwy. 118. The midwives reassured him that signs of trouble emerge early enough that they can do a transfer of care in time from anywhere in HRM if that’s what’s needed (up to 30 minutes from the IWK). Also, Chisholm and her colleagues don’t take women into their practice whose pregnancies are likely to need hospital care, based on a specific list of medical exclusions. Shelly was a healthy 35-year-old on her second low-risk pregnancy. Chisholm had no reservations. “We have this general feeling,” Perry says, “that science will save us. So, it’s very natural for people, when they are having children, to want to have the best care available. So they look to hospitals. But I think that we have made pregnancy into an illness as opposed to a natural process.” Perry doesn’t discount the need for hightech care in complicated pregnancies. But when it’s appropriate, he says, midwifery should be available. “I realize that we were lucky to have had the experience we had,” he says. “Not everybody has that experience. Shelly’s labour was pretty routine, uneventful. So we felt pretty safe.” Chisholm, for her part, is eternally sanguine. “I get to be with people during one of the best times of their lives,” she says more than once, almost amazed at the truth of it. “And I get paid to do it.”
Creating a shared vision for women’s and newborn health Midwifery is part of the new women’s and newborn health strategy that the IWK Health Centre is developing in consultation with women and communities across the Maritimes. The IWK obtained feedback from more than 1,500 individuals to shape this strategy. The IWK Foundation was pleased to host an event that brought donors, partners and friends together to share their ideas, hopes and dreams for developing a truly innovative and responsive women’s and newborn health program at the IWK.
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Feature
Maximize healing, minimize stress
Reinvented NICU and PICU will keep families together in state-of-the-art environments STORY Heather Laura Clarke
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ome is wherever a family is together. The IWK Health Centre is about to undergo a major renovation to make it easier for children to remain with their parents at all times during their stay in the health centre. The Neonatal Intensive Care Unit (NICU) and Pediatric Intensive Care Unit (PICU) are going to be redeveloped in accordance with a brand-new philosophy of care. “We know it’s incredibly important for babies to be with their families when they are ill,” says Dr. Krista Jangaard, division head of Neonatal-Perinatal Medicine. “Parents and their babies should be apart as little as possible in order to get the best outcome.” In the redesigned NICU, every family will have their own room, with dedicated space for their baby and the medical equipment they need — as well as space for the parents, including a double sofabed, clothing storage, and their own three-piece washroom. The key is a removable wall that will separate the baby’s area from the parents’ area. When a baby is very ill, the door to the room can be left open to make the baby’s bed more accessible for nurses and physicians — and the parents can close their own door to get some much-needed rest. But when the baby is doing better, the door to the health care providers can be closed, and the door to the parents’ area can be opened — allowing parents to care for their baby privately. “It’s adaptable for babies as they go through the stages of care here,” says JanIzaak Fall 2014 • Winter 2015
gaard. “If you are able to control your own room’s environment, it can help support your baby’s growth and development.” Jangaard says the roles of health care providers will also change slightly, as they move towards supporting parents in caring for their children — rather than doing everything for them. “In the beginning, when a child is very ill, much of the care will still be done by us, of course,” says Jangaard. “But as they get less intensively ill, we’ll transition from being the task-doers to being the teachers, and then to being the supporters.” In the new unit, there will also be a large family support space — a lounge area where parents can make a cup of coffee, prepare something to eat, take a shower, or spend time with their older children. “If you’re going to be here for 12 weeks, you need this living space — because no one lives in their bedroom for that long,” says Jangaard. “We want to make this into a home away from home.” When the current NICU opened in 1992, it was ground breaking to have the babies separated into smaller pods, rather than all being in one large room. While there are currently six parent sleep rooms in the unit, they quickly fill up. “Parents are more than welcome to pull up a chair and sleep at the bedside, but it’s quite tight for them and there’s very limited privacy,” says Darlene Inglis, manager of the NICU. “We’re always saying to the parents
PHOTO: Opposite: The IWK’s Neonatal Intensive Care Unit (NICU) and Pediatric Intensive Care Unit (PICU) are going to be redeveloped in accordance with a brandnew philosophy of care.
CONCEPTUAL DESIGN
‘We want you here,’ yet they tell us they often feel as though they are in the way. So we’re trying to build the structure to help us really enact the philosophy.” The close quarters also make it difficult for families to have confidential discussions with their baby’s health care team, or to bond privately with their baby. “You’re with four or five other babies — and their families — and so you can’t help but experience their ups and downs,” says Jangaard. “One mother told me ‘I was part of intimate moments that I shouldn’t have been, both good and bad.’” Before planning the redesign, Jangaard and her team travelled to Sweden, Norway and Estonia to see the most innovative family-centred care models in action. Michelle LeDrew, director of Women’s & Newborn Health, found it fascinating to see the different styles of care delivery within the Scandinavian NICUs — where the families are the foremost care providers for their babies. “I found it very striking how highly they valued the need for parental care, and that immediately refuelled our passion for ‘Moms and babies always together,’” says LeDrew. “Even the tiniest, most premature babies need their parents, and we are going to be supporting families by keeping them together.” While the IWK already delivers world-class care, LeDrew says ramping up the family support will provide even better outcomes
for these babies. She was particularly impressed by one hospital that asked parents to use a colour-coded chart to assess their confidence each day — and their readiness to care for their baby on their own. “When babies are first admitted to the NICU, parents tend to be in the red stage because they’re so overwhelmed,” says LeDrew. “But as they move into the yellow stage, the nurses begin transferring their knowledge, and the parents take on more of a hands-on role. “By the time they get to the green zone, the parents are basically providing all of the baby’s care, and they feel comfortable being discharged and going home as a family.” Inglis knows the babies will benefit immeasurably from the calming skin-to-skin contact with their mom or dad. Studies show that babies have less stress, improved growth, and fewer infections when they’re being embraced by their parents. “This is a vulnerable time in a child and parent’s life, but it’s also a time to get to know each other,” says Inglis. “The privacy will make it easier for parents to hold their baby in skin-to-skin contact, which means the babies will do better, they’ll get well faster, and they’ll need less monitoring and laboratory testing.” “They will also have the potential to go home sooner, and that’s a benefit to everybody.” “The people of the Maritimes have made this happen for these babies and their families, and that’s so powerful,” says Jangaard.
Donor generosity transforms critical care To date, the re-development of the IWK’s neonatal and pediatric intensive care units has relied entirely upon the generosity of our donors. As we head toward completion, there are many opportunities for donors to help bring these critical-care facilities to the world-class standards our patients and families deserve. Over the years, donors have shown their willingness to contribute to the comfort and wellbeing of our most vulnerable patients, with gifts that have purchased essential pieces of equipment for the NICU and PICU. These include “cosy cots” to regulate neonates’ delicate body-temperature balance, “smart pumps” to ensure infants and children receive medications at precisely the right dose and rate, and a warming unit to keep medications, fluids and blankets at just the right temperature for critically ill children.
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CONCEPTUAL DESIGN
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CONCEPTUAL DESIGN
PHOTOS: In the redesigned NICU, every family will have their own room, with dedicated space for their baby and the medical equipment they need – as well as space for the parents, including a double sofa bed, clothing storage, and their own three-piece washroom.
Izaak Fall 2014 • Winter 2015
She says everyone at the IWK is looking to the future with excitement, and can’t wait to see the new “homey, welcoming” units. “Having their own private space will help to normalize something that’s a very abnormal situation for families,” says Jangaard. “There will still be beeps and pings, but it will also be a place where they can say ‘This is our home for now. This is our family’s personal space.’” During the renovations, both units will need to relocate, but will remain intact and fully functional while construction is underway. NICU renovations will be done in two stages — beginning in the spring — and PICU will be tackled last, with everything completed by the summer of 2018. “The most challenging factor is how we keep all the adjacent spaces operational while we’re doing the renovations,” says Steve Skinner, manager of Facility Redevelopment. “It’s really about managing the whole building so that we can sever off the space we’re trying to work in, while still keeping everything else functional and making sure we don’t create any hardships for our neighbours.” Big changes are coming for the IWK’s Pediatric Intensive Care Unit (PICU) as well. The PICU is currently an eight-bed unit — where five beds are open-bay concept — but the new design will reconfigure the space into
a 10-bed unit with all single-room care. “Eight of the rooms will be along the windows, so there will be natural daylight coming in — which encourages healing and helps critically ill children transition out of intensive care,” says PICU manager, Stacy Burgess. The single-room model of care will enhance patient confidentiality. The new space design in the PICU also allows for an alcove outside each patient room for nurses, offering families some privacy. The biggest improvement will be how much easier it becomes for parents to spend time with their child — and assist with their care. “There’s so much literature out there now on health care professionals and families working together to achieve the best care,” says Burgess. “We haven’t been able to provide that to the standard we want, because we’ve been limited by our space and its design. Now we will be able to apply a new standard of care in intensive care.”
BUILDING A BRIGHTER FUTURE Last year, the construction industry united to create the ‘CANS Campaign for the IWK’ and the result was incredible. Thank you to the members of the Construction Association of Nova Scotia for their recent gift of $1.58 million. These funds will support a significant redevelopment project that will transform the IWK’s neonatal intensive care unit (NICU).
CONSTRUCTION ASSOCIATION OF NOVA SCOTIA Building with Skill and Integrity Since 1862
The new NICU will include private single and twin rooms where families can be together during the hospitalization of their premature or critically ill infants. The design will be one of the first in North America. On behalf of Maritime families and the IWK’s tiniest and most critically ill babies, thank you.
Excellence is in your hands. Donate today.
1.800.595.2266 | iwkfoundation.org
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Sharing IWK expertise with the world
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Obstetrics and gynecology residents excel from a global perspective STORY Heather Laura Clarke | PHOTOS Dr. Ron George
Izaak Fall 2014 • Winter 2015
t’s no longer reasonable for medical residents to focus strictly on gaining clinical experience when working in a developing country, says Dr. Heather Scott, a maternal-fetal medicine specialist at the IWK and associate professor in the Department of Obstetrics & Gynecology at Dalhousie Medical School. “If you help out in an operating room or deliver a few babies, that’s good — but it’s just a drop in the bucket,” says Scott. “This kind of work is also about learning what the health care providers in that country are dealing with, and trying to improve the future health of those women and children.” “They need to be teachers themselves, rather than going there solely to learn and improve their own skills.” Scott is the medical director of Obstetrics & Gynecology’s new Global Health Unit, launched in 2013 to enhance residents’ understanding of global health issues. Residents are encouraged, through a structured curriculum, to explore and address health inequities, overseas and in communities much closer to home. Scott is currently on a six-month sabbatical in South Africa, working as an external evaluator of the South African Confidential Enquiry into Maternal Deaths. Many women die in their health care facilities, but many also die before reaching a facility. This type of audit process — and efforts to improve it — will ultimately reduce maternal mortality. Scott says often residents think it’s too difficult to pull up their roots and leave the country for six months or a year, but she’s living proof it can be done. Her family moved with her to South Africa, and her three children are happily enrolled in school there for the term. Her husband
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PHOTO: Cesarean Operating Theatre (Sevan, Armenia) - The provision of safe obstetric anesthesia for cesarean delivery is critical to reducing maternal mortality in low-middle income countries. IWK Anesthesia resident Amelie Pelland exams the anesthetic circuit prior to a cesarean.
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Izaak Fall 2014 • Winter 2015
PHOTOS: Opposite Top: Cesarean Operating Theatre (Sevan, Armenia) - The provision of safe obstetric surgical care is critical to reducing maternal mortality in low middle income countries
Opposite Bottom: Through IWK Obstetrics & Gynecology’s new Global Health Unit, residents are encouraged to explore and address health inequities, overseas and in communities much closer to home.
— also on sabbatical — is now a visiting professor at the University of the Witwatersrand in Johannesburg. “We’re a global community — we shouldn’t be functioning just within isolated cities or provinces or countries,” says Scott. “We, as physicians, have to be advocates so things improve.” “Doing volunteer work in the community is not part of most residency programs, but we want young physicians to see there is a different way to help beyond providing basic medical care.” Before she left for South Africa, Scott organized an information session at Phoenix House and brought two residents to meet with teens and young adults and answer their questions about sexual and reproductive health. “Some of these young people are sexually active, some are pregnant, some have young babies, and sometimes they feel more comfortable in a place that is not a hospital,” says Scott. “The IWK is a very welcoming hospital, of course, but some of these teens just don’t feel they can walk through the doors to get information.” Anita Smith, a fifth-year resident in Obstetrics & Gynecology, says accompanying Scott to Phoenix Youth opened her eyes to the kind of doctor she wants to be. “There was a lot of talk about contraception, so we were able to provide information on getting it affordably,” says Smith. “Now that we know that’s such a big issue, we could perhaps lobby to make it more readily available, and work to change things.” “We find that a lot of adolescents don’t have a lot of experience with hospitals or physicians, so they’re more hesitant to seek care — even during pregnancy, when they need to be seen regularly,” says Smith. “People think global health is just travelling to help other vulnerable populations, but there’s a lot that needs to be done at home.” Smith and Hemsworth are working with Phoenix Youth to make the information sessions a regular event, and have met with various Aboriginal and global health educators — revealing another population here at home that could benefit from outreach and improved understanding. Scott says she’s seen an increased interest in global-health involvement over the last few years, even among students still pursuing undergraduate degrees. Elizabeth Randle, a fourth-year resident in Obstetrics & Gynecology, recently finished collecting data for a study assessing the feasibility
Above: Heather and Ron with members of the Tamale Teaching Hospital Maternal & Newborn Health Quality Improvement Committee they helped to initiate.
of making global health education a mandatory part of postgraduate residency training — rather than remaining “just a sidebar” for people interested in that aspect of care. “I want to broaden people’s perspective of what global health means, because it’s not just delivering babies in Africa,” says Randle. “It’s more accessible than people think it is, and there are so many opportunities to get involved locally.” Smith says her alma mater, Dalhousie University, has been making huge strides in improving its global health curriculum. “There’s a definite energy and focus surrounding global health — better awareness about what it is, and what the role of a physician can be,” says Smith. “You don’t have to travel overseas to make an impact on global health. It starts right here, in these under-resourced populations that face more barriers in accessing health care.” Scott agrees that accessing health care is a problem here at home. “It can be difficult for people in remote communities to get into the IWK, and we are not immune to poverty,” says Scott. “We are still dealing with vulnerable populations. Not everyone is literate. Not everyone has access to clean water. There are people with substance abuse problems. In some remote communities in Canada, tuberculosis is still an issue.” Scott says health care providers are well aware of the inequalities in health care, and — overseas and at home — it’s all about making a difference at the community level. When she worked in Ghana, she discovered it was challenging for the local physicians and midwives to listen to fetal heartbeats. They were limited to using fetoscopes, but it’s much more effective to use modern handheld Doppler machines. Scott came home and told her son what they needed, and he excitedly planned a fundraiser at his school. A few nurses at the IWK got involved with their children, too — selling homemade bracelets and baked goods, and organizing a book sale. Scott says they’ve raised more than $2,000 — which should pay for five new Dopplers. “Everyone was so excited about the idea, because they work with mothers and babies every day and they know the difference a Doppler makes,” says Scott. “I think it helped that they were working towards something tangible, and that they knew I’d be delivering them in person. It made it more immediate.”
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Seeing is believing World-class Clinical Vision Science team making a visible impact STORY Heather Laura Clarke | PHOTOS Scott Munn
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t’s the largest orthoptic program in North America, offering a unique blend of programming that isn’t found anywhere else on the continent, and it’s right here in Halifax. Darren Oystreck is chief of orthoptics at the IWK Health Centre and chair of the Clinical Vision Science (CVS) program at Dalhousie University. He joined the team last September, and says it’s not surprising to see just how many people are behind the program’s huge success. “A lot of people went to a lot of effort for such a small profession — there are not many facilities in the world that would have made this happen,” says Oystreck. “Although our program is based out of Dalhousie University’s Faculty of Health Professions, our students and teaching faculty operate from the IWK.”
Izaak Fall 2014 • Winter 2015
Clinical immersion is paramount to this program, and Oystreck says it’s the unique relationship between Dalhousie and the IWK that makes it possible for students to access the best of many worlds — whether it’s having access to thesis supervisors from other Dalhousie programs such as Ophthalmology, Psychology or Kinesiology, participating in vision research at the Tupper Medical Building, or receiving clinical training at the IWK or the adult eye clinic at the QEII Health Sciences Centre. The reputation of the IWK and Dalhousie has also opened doors for students to gain additional clinical experience in the most reputable tertiary care facilities around North America. Oystreck says the CVS program is a perfect example of meeting the goals of the Model of Care Initiative in Nova Scotia (MOCINS), which is about creating a patient-focused system that incorporates interdisciplinary
PHOTO: Left: In Carter Riley’s case, Dr. Johane Robitaille and the IWK Eye Care Team have employed non-surgical interventions to help correct the misalignment of his eyes (called strabismus).
care teams backed by the supports they need. This also allows the graduates to work at their full scope of practice in a holistic vision-care environment. The field of orthoptics focuses on disorders of binocular vision and ocular motility, such as lazy eye (amblyopia), misaligned eyes (strabismus) and double vision (diplopia). Orthoptists do the clinical testing to assess vision conditions, as well as recommend and monitor therapy. They both enhance the specialized eye care patients need, and make it more accessible. “We work very closely with our pediatric ophthalmology team at the IWK as well as outside ophthalmologists. This relationship enables an increased capacity to follow more,” says Oystreck. “Our eye care team approach ensures a higher quality of care.” For many pediatric eye conditions, Oystreck says there can often be a limited window during which treatments result in the best outcomes, and this often tends to be at a young age. Because the students of the CVS program work directly with patients, enrollment is limited. Six students are accepted into the clinical component of the two-year program each year. Upon completion of their training, and successfully passing the national board exams, students can choose to complete a Masters of Science (MSc degree) in Clinical Vision Science. This option is unique to the Halifax program and stems from the program’s foundation in evidence-based practice. Outside of their program, Oystreck says there are very few orthoptic students in the other two Canadian programs. “The training is heavily weighted to Halifax,” he says. “We’re a critical program to the profession in Canada.” By June of 2015, this small but mighty program will graduate its 100th student. “CVS is a small and highly-specialized program taught predominantly by members of the IWK staff that all have adjunct appointments with the university and the faculty,” explains Dr. William Webster, Dean of Dalhousie’s Faculty of Health Professions. “It’s never going to be a huge program like nursing, because it’s so highly specialized.
You’re not going to need a large number of orthoptists in any one community, but you’re going to need them everywhere — across the country, and around the world.” A high number of the program’s graduates remain in Atlantic Canada to live and work, compared to other professions. A staggering 75 per cent of orthoptists currently employed in Atlantic Canada are graduates of the IWK program and many of the orthoptists working in Canada were trained here. Almost every hospital-based pediatric ophthalmology clinic in Canada employs orthoptist graduates from this program, and 40 per cent of all members of The Canadian Orthoptic Society graduated from the IWK/ Dalhousie program. Oystreck says industry jobs have been cut in Vancouver, as well as in training programs in places like Toronto, because of a lack of support. The IWK/Dalhousie partnership, however, has been able to put the right people in the right places. He is grateful to the IWK Health Centre and to Dalhousie University for “taking a chance” on the program. And he remains optimistic, as more jobs are being created across North America. “We’re dubbed the ‘smallest big program,’ because although we’re the tiniest graduate program at Dalhousie, by professional standards we’re a big hitter in North America,” says Oystreck. “We have an exceptional team that has worked hard to strike the right balance between patient care, teaching, and research.” Oystreck left Canada 10 years ago to work overseas, and witnessed many countries with the right doctors in place but without access to a well-trained support team. That type of patient-care environment doesn’t work very well. The missing factor in these places was the lack of high-level training programs to build a complete team. “Orthoptists can work in hospitals, universities, or the private sector — and the opportunities for work are right here, as well as around the world,” says Oystreck. He constantly fields calls from people worldwide who have read about the CVS program online, and want to find out how to apply. “We’re striking a chord with the interna-
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PHOTOS: The field of orthoptics focuses on disorders of binocular vision and ocular motility, such as lazy eye (amblyopia), misaligned eyes (strabismus) and double vision (diplopia). Orthoptists do the clinical testing to assess vision conditions, as well as recommend and monitor therapy. They both enhance the specialized eye care patients need, and make it more accessible.
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PHOTO: Keeping an eye on quality, (from left), Darren Oystreck, chief of orthoptics at the IWK Health Centre and chair of the Clinical Vision Science (CVS) program at Dalhousie University, Dr. William Webster, Dean of Dalhousie’s Faculty of Health Professions, and Dr. Robert LaRoche, chief of pediatric ophthalmology at the IWK Health Centre.
tional community, and that’s an area where we’d like to grow,” says Oystreck. “There’s huge potential for us in that market.” Dr. Robert LaRoche, chief of pediatric ophthalmology at the IWK Health Centre, says the program has evolved differently than others because it has formalized the educational component and become a solid, university-based program. It also gives patients and their families the opportunity to participate in groundbreaking research, which can provide them with valuable benefits. “The patients in a research study may have access to treatment that won’t be available to non-participating patients for quite a while,” says LaRoche. “Some of the research equipment is of the highest quality — and we have it much sooner.”
Izaak Fall 2014 • Winter 2015
All students enter the program with a science background, and LaRoche says there are other interests that come into play. “We’re dealing with the movement of the eyes, and the way they move together, so there are literally mechanics involved,” says LaRoche. “It’s also a field with a lot of technology and ‘toys,’ and a specialty where someone comes in with a problem and goes out with a solution — you’re solving real problems, all the time.” LaRoche also highlights that what sets the program apart from other graduate studies is the daily hands-on training. “Our students don’t sit at a desk very long before we’re putting tools in their hands and they are seeing patients and truly making a difference,” says LaRoche.
Donors help IWK Eye Care Team take a closer look Through Telethon and other IWK fundraising events, the Maritime community came together to equip the IWK Eye Care Team with two sophisticated cameras – the Retcam and Visucam – for capturing high-resolution, full-colour images of the retina and optic nerve. These images are essential for detecting eye problems in premature infants and diagnosing cancers of the eye. The cameras replaced unreliable equipment to provide patients with excellent, accurate results.
PHOTO: Carter Riley (left) has been under the care of one of the IWK’s pediatric ophthalmologists, Dr. Johane Robitaille (bottom right), since he was two years old.
All eyes on proactive interventions STORY Lindsey Bunin
Carter Riley’s wide smile is infectious. With his hand full of Cars stickers, the four-yearold can’t help but beam. His mom, Robin Hollett, is smiling too. Following an appointment with her son’s ophthalmology team at the IWK Health Centre’s Eye Clinic, she’s pleased, and relieved, by his progress. “As soon as we put the glasses on him, he was happy to wear them — he could actually see,” she says. “He always asks, ‘Do I get to go to the eye doctor today?’ It’s been so positive for him.” Carter has been under the care of one of the IWK’s pediatric ophthalmologists, Dr. Johane Robitaille, since he was two years old. “Usually it’s the family who first notices that there’s an eye issue — they notice that the eyes look different,” Robitaille says. “It’s important to have it screened. Prevention is critical. Once the screening examination confirms the presence of an eye problem,
that’s when we step in.” “Screenings can detect problems and prevent blinding complications. Since children are going to have their two eyes for the rest of their lives, it is important to address potential issues early on. The window of opportunity is narrow, especially for children who are in the earliest stages of visual development, which starts at birth and ends when they reach about 9 to 11 years of age.” In Carter’s case, Robitaille and the IWK Eye Care Team have employed non-surgical interventions to help correct the misalignment of his eyes (called strabismus). “Our goal has been to help him realign his eyes so that he can tap into that visual development potential,” Robitaille says. “When we try to focus on something far away, our eyes are straight, or parallel, and as the object gets closer and closer, there’s a certain amount of in-turning that needs to occur to keep the eyes aligned
on the same target. That mild in-turning is normally matched to the amount of focusing effort. When there’s a mismatch, like in Carter’s case, the eyes turn in too much for the amount of focusing effort he needs to do. In these situations, glasses assist with the focusing so the eyes can relax and remain aligned.” Orthoptists in the IWK’s Eye Care Team work in conjunction with the pediatric ophthalmologists to monitor and treat patients with various vision-development and eye-health issues. With its strong teaching component, the orthoptic program is an ever-adapting environment full of individuals who consistently go the extra mile to ensure patients reach their best possible outcome, Robitaille says. “I think what makes it so special is that everyone has the same purpose — it’s all centred on the children and their outcomes. Because there’s teaching, there’s always a buzz — it keeps us on our toes and it makes it a pleasure to come to work. The combination of teaching and research allows us to provide a better level of care and strive for excellence through interaction and collaboration.” “The orthoptists are always thinking outside the box to improve outcomes,” she adds. “They constantly question what we do to ensure we are attaining that gold standard of care. Having the orthoptists and the orthoptic students as part of that process is critical.”
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Waiting game
Technology
Innovative IWK emergency department app gathers real-time data about kids and their conditions STORY Katie Ingram | PHOTO Scott Munn
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ospital waiting rooms often have a stigma of being exactly what their name suggests: a place to wait. Children don’t do well with waiting and, especially in an emergency department, waiting can be stressful for them and their families. A new iPad application (app) being developed at the IWK Health Centre aims to turn this situation into an educational and even fun experience for children. The app is tentatively called iCare Adventure. According to Dr. Brett Taylor, physician representative and research lead for the project, “Emergency-room conditions are less than ideal for children. There is not much control over the many variables that can affect waiting, including the number of patients that need to be seen or the types of injuries or illnesses they have.” “Patients and families are sometimes waiting four or even six hours in the winter season and the triage nurse may not have the time to keep parents as informed as he or she would like about what is happening,” Taylor says. Taylor says the idea for iCare Adventure came up a couple years ago, through the Centre for Therapeutic Technology. The centre is a collaboration between IWK staff, community members and outside partners.
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PHOTO: Once a child enters the emergency department they will be given an iPad. They then create a personalized avatar and can use it to travel to 15 different landmarks using a flying carpet. These landmarks include London Bridge, the Eiffel Tower and the pyramids in Giza, all of which are introduced in a video message from Buddington, the hospital’s therapeutic clown.
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Taylor was introduced by Donna Thompson, a patient advocate with the centre, to Andy Wilcox and Cliff Gibb, co-founders of EverAge Consulting, a Bedford, N.S.-based information-management firm. Within a few hours of meeting, the three had developed the initial idea for the app. “In addition to entertaining the kids, the app teaches them the skills they need to get comfortably through their visit to the emergency department, and guides them through the initial treatment for dehydration and pain control,” says Taylor. Kate Morrison, child life specialist in the IWK Emergency Department and clinical lead for iCare Adventure, says that when a child is in pain or feeling sick, it can add to their parents’ stress and anxiety levels. “As a kid, it’s a very negative thing to be bored. You’re less engaged, you don’t want to be there, you don’t want to try and cope with what’s going on and you’re fed up with everything,” she says, noting that if a child is happy and contented, so are the parents. Once a child enters the emergency department they will be given an iPad. They then create a personalized avatar and can use it to travel to 15 different landmarks using a flying carpet. These landmarks include London Bridge, the Eiffel Tower and the pyramids in Giza, all of which are introduced in a video message from Buddington, the hospital’s therapeutic clown. “The idea of having different landmarks is based upon the coping technique of mental imagery and the benefit of being able to mentally escape the waiting room,” says Wilcox, who helped designed the app’s game play. He adds that the game board is constantly changing to keep the child’s attention. “The [map] grid is always shuffling around; it’s always changing how the players travel from one place to another.” Along with this, children can play virtual versions of such games as Would You Rather? and Guess Where? with other children who are at the same landmark. They can also talk to each other via a chat function and send hearts or good karma to each other. There are a number of hidden tools that will help the IWK’s staff monitor how the waiting patient is doing. For example, during game play a child can be given reminders and asked questions about their medical state. If they are dehydrated, the app will remind them they Izaak Fall 2014 • Winter 2015
need to drink Pedialyte and it can ask them to rate their pain level. If the level goes up, then the triage nurse is notified. “We’re seeing the value of the app in that it can help us extend our roles,” says Morrison. “The triage nurse can extend her role and use iCare Adventure as a tool and I use it to extend my presence to the waiting room as well, by appearing in videos that provide coping ideas and distractions.” Other videos feature Buddington and Taylor talking about the human body. One other feature that is being added to the experience is Reeti the Robot. He will sit in the waiting room and at random times pick one child to talk to through the iPad. “He’s an alien who has come to earth to explore some of the landmarks that the kids are exploring, but is lost,” says Wilcox. “The kids have to help him find his way, as well as make him feel better [about being lost] by practising deep breathing and mental imagery.” As of right now, the app is still being developed, but anecdotal feedback has been positive. A research trial to test the app in the emergency department is expected to begin in December. If successful, the app will be introduced in the IWK’s emergency department in the spring of 2015. Eventually, those who worked on the project would like to see iCareAdventure used in other IWK departments and children’s hospitals in other parts of the world. “Right now, we just want to get to the point where it’s fun and engaging and helps kids out,” says Taylor. “We just want to do everything we can to make the patient and parents more satisfied with their experience and hopefully make care a whole lot better.”
More than a game iCareAdventure is being designed not only to support children and families while they wait for medical attention, but also as a research tool. The app will help collect valuable information about patients’ health condition and their experience and satisfaction with care. This will be used to inform further improvements to patient care.
Meet Reeti STORY Lindsey Bunin Most kids wouldn’t expect an encounter with a robot in the emergency room — but at the IWK Health Centre, the experience is designed to enhance care. Reeti the Robot will be used in the waiting-room environment to reinforce coping skills that are introduced to children who are playing the iCare Adventure game. Reeti will serve as a bridge between the virtual world of the game and the reality of the waiting room. Mounted on the wall beside one of the large screen TVs in the emergency department waiting room, Reeti is part of the interactive game. As they wait, every child gets a chance to interact with the in-house robot — upon their turn, Reeti sends a message to the child’s iPad asking them to come and meet him. “Reeti explores the various landmarks introduced to the children in the game,” explains creator Andy Wilcox. “Unfortunately, Reeti is not a very good explorer and regularly runs into trouble for which he needs the child’s assistance. Reeti can ask the child questions, to which they respond via iPad. “For example, in one scenario, Reeti gets lost on his way to explore the Acropolis, and gets worried. The child is able to help Reeti by practising deep breathing with him, thus reinforcing that coping skill, and allowing the child to show compassion. “Reeti was selected from hundreds of robot options for his head and facial controls, which allow him to show both emotions and demonstrate coping skills such deep breathing. He does not have arms or legs, but rather expresses himself by moving his head, ears, eyes and mouth.” At the end of each interaction, Reeti reports to his commander what he has discovered, including reinforcing the skill in which the child just participated, helping patients, families and physicians ensure emergency department success.
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Technology
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Mother’s milk IWK is first in Atlantic Canada to safeguard a precious resource
STORY Heather Laura Clarke | PHOTOS Scott Munn
Izaak Fall 2014 • Winter 2015
hoever coined the expression, “Don’t cry over spilt milk,” certainly never dropped a bottle of freshly-pumped breast milk. Thanks to a brand-new tracking system and milk room at the IWK Health Centre, there’s a much lower chance of breast milk being misplaced or wasted. This summer, the IWK Health Centre became the first hospital in Atlantic Canada to implement a milk room and a barcode tracking system — improving patient safety and ensuring every baby in the Neonatal Intensive Care Unit (NICU) gets their own mother’s breast milk. Now, before a mother in the NICU pumps, she gets an empty container labelled with her own unique barcode. Once she’s finished pumping, she writes the date and time on the label, and it’s received into the tracking system as inventory. Because breast milk is only safe for 24 hours once it’s thawed, the milk-room technicians must store it and freeze it in small quantities to prevent waste. The plastic bottles vary in size, from 45 millilitres to eight ounces. “Breast milk is like liquid gold, and we want to save every drop,” says Brenda Lee MacDonald, manager of food services at the IWK. “The technicians are very precise with how much milk they’re thawing, so nothing is ever wasted.” Dietary technician Danica Pion started on the milk-room project as an intern, and took on a leadership role after graduating from Mount Saint Vincent University and coming aboard full time.
Nurses and physicians place breast-milk “orders” for the babies through MediTech, and the dietary technicians do two rounds of preparation each day — one for an 18-hour period, and one for a six-hour period. If a baby’s milk needs to be fortified, the dietary tech looks after this in the sterile milk room. Some of the babies are fed every two hours, so Pion says they prepare as many as 300 feeds for up to 25 infants in a single day. NICU registered nurse Tara Hatfield played a key role in implementing the breastmilk tracking system. She says it was difficult to fortify a baby’s milk at the bedside — this can be done much more safely in the milk room. “A lot of babies need more nutrition, but they can’t handle a higher volume of milk, so we add fortifiers to increase the milk’s caloric density,” explains Hatfield. “If a mother’s milk has 0.68 calories per ml, we might increase it to 0.81 calories per ml — but it all depends on what the baby needs.” Each container of milk is labelled with a barcode that’s unique to the mother, so the right milk is always delivered to the right baby. Each bottle is scanned and checked against the baby’s barcode before he or she is fed, and the temperatures of the refrigerators and freezers are checked daily to ensure the milk stays fresh. “All of the milk is inventoried, so we know at any given point exactly how much milk a mother has in the freezer — and when it expires,” says neonatal dietitian, Joyce Ledwidge. “When the mother is ready to go home, we can make sure she has every drop of her milk to take with her — there’s no longer a chance that some gets left behind.” Many health care providers consider a mother’s colostrum — the rich first drops of breast milk — to be a baby’s first immunization, because they contain antibodies that protect the baby against disease. Ledwidge says she is often “humbled” by how hard NICU mothers work to pump breast milk — especially since many of them never planned to breastfeed in the first place. “A mother may not be able to hold her preterm baby for weeks, but she pumps because it’s the one thing she can do for her baby,” says Ledwidge. “When you feel like you have no control over your baby’s health, pumping is the one thing you can hold onto — and these mothers are just amazing.” Ledwidge says the milk room is just one of the steps the IWK Health Centre has taken towards earning the World Health Organization’s “Baby-Friendly Hospital” designation — along with having babies rooming-in with
“A mother may not be able to hold her preterm baby for weeks, but she pumps because it’s the one thing she can do for her baby. When you feel like you have no control over your baby’s health, pumping is the one thing you can hold onto – and these mothers are just amazing.” — IWK neonatal dietitian Joyce Ledwidge
their mothers, educating the staff on breastfeeding best practices, and encouraging skin-to-skin contact. “It puts us in good standing that we hold breast milk and breastfeeding in such high esteem,” says Ledwidge. “It truly is a priority for us.” In the past, nurses had been responsible for locating a mother’s frozen milk, thawing it, and fortifying it at a workstation in the middle of the unit. There were minimal sterilizing techniques, and there was a risk that milk could be mixed up, contaminated, or improperly fortified. “The milk is now stored in a central location, so it’s much easier than back when everything was stored in different freezers across the unit,” says Pion. “And everything is prepared under a laminar flow hood to prevent contamination.” The milk room is divided into two sections: an anteroom — which holds the tracking equipment, computers, and dishwashers — and a prep room, the sterile space where milk is thawed and prepared. “It’s so empowering to have been able to take on such a large role in the project, it’s been a really wonderful experience,” says Pion. “I’m part of something huge that’s making a difference.” The milk room also allows the IWK Health Centre to participate in exciting new research projects — and, in turn, to use state-of-theart equipment. They’re currently involved in the multi-centre OptiMoM study of milk fortifiers. The milk room also contains a centrifuge to prepare skimmed breast milk for babies who require it. Although the milk room is not a milk bank — which exist in cities like Toronto and Calgary — the IWK does purchase and store pasteurized donor milk for babies who need it. “There are strict guidelines for donor milk, so we’re now able to electronically track which baby gets which donor’s milk,” says Ledwidge. “We used to have to do that manually, and now we have a much better system for tracking the details.” It’s understandably stressful to have your
baby in the NICU, but now there’s no need for a mom to try to remember how much milk she’s pumped. “If a mother has less than 10 bottles left in the system, we get a notification. Then we’re able to chat with the mom about how the pumping is going,” says Ledwidge. “Sometimes the moms are pumping at home, too, and this lets us remind them to bring in a few more bottles — rather than suddenly not being able to find any more of her milk.” MacDonald says moms of NICU babies really appreciate that their breast milk is being scanned and inventoried so carefully. Some mothers have 40 litres by the time she and her baby are discharged! “It really emphasizes the fact that their babies’ safety is what’s most important,” says MacDonald. “When it’s time to leave, we notify the milk room and all of their milk is packed up for them, and they’re able to have peace of mind that this is strictly their own breast milk.” If a mother chooses to stop pumping after several months and her baby is still at the IWK, the system is able to report how much milk they have remaining and ration it with formula to wean the baby gradually. In many hospitals, the milk room is located inside of the food-services area — which is often three or floors down from that facility’s NICU. MacDonald says the IWK is lucky to have the milk room so close to its NICU, because it ensures solid communication between nurses and dietary technicians. “They’re able to talk about how a particular baby is doing, and if anything needs to be changed for their next feed,” says MacDonald. “The nurses and dietary techs are able to learn about each other’s roles, as they work together to help the babies.” Hatfield says the tracking system has allowed her to support moms who are labouring over their pumps, trying to produce as much as they can for their baby. “It’s very encouraging for a mother who started out with a limited supply to be able to hear us say ‘Wow! Last week you only pumped 30 mls, but this week you’ve pumped 180 mls. Good job!”
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PHOTO: IWK registered nurses Jessica Wournell (L) and Tracy Bourdages are the first two nurses in the country to earn eating disorder specialization. Their expanded experience provides a unique standard of care for these patients in the Garron Centre for Child and Adolescent Mental Health.
Izaak Fall 2014 • Winter 2015
Specialized care
IWK eating disorder nurses receive nationally unique certification STORY Lindsey Bunin | PHOTOS Scott Munn
Eating disorders are potentially life threatening. When a patient’s eating patterns become severely disrupted, interventions are always complex. Armed with a new and unique certification, two IWK Health Centre nurses are establishing new guidelines and resources, and leading the way to healthier eating and better lives for their patients.
effectively help patients heal their relationship to food. Team members may include physicians (pediatricians or psychiatrists), therapists (such as psychologists or social workers), dietitians, nurses, and of course, the families. “The mental health care context can be very complex. There’s always other aspects to consider and learn about, such as family dynamics or medication issues. I am a support and a resource to help other nurses find solutions to the complex challenges they face daily.” “Everything we do is based on the familycentred care model. Not only do we have the patient, but we have to incorporate the people who will be the support for that child when they’re back home.”
DRAWN TO PATIENT CARE Tracy Bourdages wasn’t originally a nurse. But her love for the IWK and the call of one-onone patient care there drew her back to school, to re-train after her support role in youth mental health care at the IWK was phased out as the program shifted to a different care model. “I love the IWK and I knew I had to stay here, so I went back to Dalhousie University when I was 30 to do my nursing degree,” she says of her transition into mental health nursing at the IWK. “I found myself gravitating toward patients who are living with eating disorders.” In her current role, in addition to nursing, Bourdages serves as a mentor on the unit. Because of the complexity of these disorders, it takes a multidisciplinary approach to
FINDING HER NICHE Jessica Wournell knew she’d be a nurse before her first day of university. “I went straight into nursing school from high school — I had a huge passion for it,” she says. “I especially wanted to care for kids. I came to the IWK for a clinical placement and absolutely fell in love with the mental health unit. The staff and management are supportive and I loved connecting with the patients.” “As a young nurse — I’ve only been out of school for three years — I’ve found that the leadership and growth opportunities on this unit are far beyond what I had ever expected.” “Connecting with the patients and building rapport has come so easily to me, so I guess that’s why I feel so lucky to do what I do. When a patient comes in, we want to figure out what
hen they arrive at the Garron Centre for Child and Adolescent Mental Health, some eating-disorder patients haven’t eaten solid food in a year or more. Their fear of food is so real and intense, they often can’t comfortably stand in a kitchen.
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their triggers are and we want to re-normalize eating. We use the Maudsley-based family approach, which means we educate the families and, with support from nursing, the family can take the lead.” Because of meal support, nurses spend a great deal of their 12-hour shifts working oneon-one with the patients, who are required to eat six times per day. “With eating disorders, the patients have been able to control their food, sometimes when there’s a lack of control in other areas of their life,” Wournell says. “What they’ve been able to do to this point is manage what they eat and when they eat and how they exercise and what their body looks like — and we’re taking that away. That can be very distressing for the patients and their families, so our focus is to support them through that.” Wournell adds, “We often have to remind the patients, this really isn’t about the food, it’s about what emotions are behind the food, and I think that’s where people can be intolerant and say, ‘Just eat; it’s not that hard.’ But there are all kinds of reasons that eating disorders happen and it’s usually beyond the food.” 50
JOINING FORCES AND RESOURCES A year after Bourdages started nursing in the IWK’s mental health unit, Wournell joined the team and the two immediately recognized a common passion for caring for children with eating disorders. On shared shifts, the two would put their heads together on strategies surrounding these patients. “We thought that we needed to create more guidelines for working with eating-disorder patients, so we sat down and came up with a set of new procedures,” Wournell says. “We wanted to add more structure, which is so important when you’re dealing with something like eating disorders — consistency is key.” Bourdages and Wournell worked with their manager, Kristi Kempton, to accommodate the time necessary to not only develop the new standards, but also to focus their work entirely on eating-disorder patients, so they could become the unit’s subject-matter experts in this area. “We wanted to become visible as completely invested in the role and to become the resources for the unit,” Bourdages says. Regarding the guidelines, she notes, “We were able to lay it out so that all nurses, not just myself and Jessica, are able to make confident decisions that are backed by evidence-based practice,” Bourdages says. A physician follows care on both an in-patient and out-patient basis, and this improved
Izaak Fall 2014 • Winter 2015
set of guidelines helps nursing staff to make decisions at times when the doctor isn’t on the unit. ON THE ROAD TO A NEW CERTIFICATION When the mental health unit acquired funding to send staff to an eating-disorders conference, Bourdages and Wournell jumped at the opportunity to go. Hosted by the International Association of Eating Disorders Professionals (iaedp), the multidisciplinary conference included several days of intensive training in treating eating disorders, to serve as the initiation phase of field-specific certification. The iaedp established a stringent certification process to promote standards of excellence within the field of eating disorders. Professionals who demonstrate clinical expertise through education, experience and a rigorous examination are eligible for certification as a Certified Eating Disorders Specialist (CEDS) in mental health, Certified Eating Disorders Registered Dietitian (CEDRD), or Certified Eating Disorders Registered Nurse (CEDRN). In addition to the classroom training, the certification process required Bourdages and Wournell to complete 2,000 direct working hours with eating-disorder patients. To fulfill the requirements of the certification, they each completed a case study on a particular patient’s interventions plan and outcome, developed a complete reference guide on a book about the medical management of eating disorders, and wrote an exam. Only four other nurses have received this certification — none of them in Canada. “To have this certification and these educational opportunities is very rewarding,” Wournell says. Bourdages and Wournell are already seeing results by way of their patients’ progress. “They can come into the unit not having eaten in a year — only having formula — or having eaten very minimally. By the time they leave, some are eating full meals without much prompting,” Wournell says. “When their family says, ‘I recognize my child again,’ that’s the ultimate reward. You can see the transition, you can hear the transition, and that’s what it’s all about.”
Generous donors step up to create a healing environment
It’s not uncommon for eating-disorder patients to be at the IWK for up to two months at a time. For this reason, among so many others, certified eating-disorder nurses Tracy Bourdages and Jessie Wournell agree that the new Garron Centre for Child and Adolescent Mental Health is an optimal healing environment for their patients. “When families walk through the door, they sometimes carry stigma about mental health. This new centre, with natural light and bright colours, helps everyone feel more at ease,” Bourdages says.
The Garron Centre opened in spring 2014 thanks to the generosity of donors to the IWK Foundation, like Berna and Myron Garron, Marjorie Lindsey, RBC, the Windsor Foundation, and many others. Designed with the specialized needs of young patients in mind, the layout of the Garron Centre allows for focused mini-units, such as the one that helps patients struggling with eating disorders.
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