Research shows that preemie babies do better when families are involved in care

Dr. Karel O’Brien, with mother, Amy, whose twins were born at 23 weeks, 5 days.

An international study led by Sinai Health System researchers shows that a Family Integrated Care model of treating the tiniest and most fragile babies helps improve the wellbeing of both children and parents.

Neonatal intensive care units (NICU) in Canada, Australia and New Zealand adopted the Family Integrated Care model, developed at Mount Sinai Hospital by Dr. Shoo Lee, and found that it improved the wellbeing of both preemie babies and their parents compared to standard care:

  • Improved weight gain among preterm infants
  • Better breastfeeding
  • Reduced parental stress and anxiety

When Amy, a new mother of twins found herself in the Mount Sinai NICU with babies born at 23 weeks and 5 days, she felt scared and overwhelmed by how fragile the babies were. Still in the NICU after almost three months, she has found comfort in being part of the Family Integrated Care model. “It really allowed me to feel like a mother. Being with my babies all day, I know instinctively if something is wrong or what they need, and can report that to the doctors and nurses. They are getting stronger and stronger every day, and this model of care has made me believe that when I bring them home, I’ll be able to confidently care for them.”

The study was led by Mount Sinai Hospital researchers Dr. Karel O’Brien, neonatologist, and Dr. Shoo Lee, Chief of Pediatrics. Recently published in the prestigious journal, The Lancet Child & Adolescent Health, it involved nearly 1,800 infants born at 33 weeks gestation or earlier across 26 NICU units.

What is Family Integrated Care?

Family Integrated Care actively involves parents in the care of their newborns, including giving oral medicine, feeding, taking their temperate and taking part in ward rounds.

Mount Sinai supports parents in spending six hours a day, at least five days a week with their babies by providing them with a rest space and sleeping room, comfortable reclining chairs at the bedside and nurses trained in family support.

“Parents are too often perceived as visitors to the intensive care unit. Our findings challenge this approach and show the benefits to both infants and their families of incorporating parents as key members of the infant’s health care team, and helping parents to assume the role of primary caregiver as soon as possible,” says Dr. Karel O’Brien, who leads the Family Integrated Care Program at Mount Sinai.

Real impact for preemies and parents

“How care is provided to the family, not just the infant, has a positive effect on the wellbeing of both infant and family,” says Dr O’Brien. “Weight gain, breastfeeding and reduced parental stress and anxiety are all associated with positive neurodevelopmental outcomes, suggesting that integrating parents into the care of infants at this early stage could potentially have longer-term benefits.”

At 21 days, infants in the Family Integrated Care group had put on more weight and had higher average daily weight gain (26.7g vs 24.8g), compared to the standard care group. Additionally, parents in the Family Integrated Care group had lower levels of stress and anxiety, compared to the standard care group. Once discharged, mothers were more likely to breastfeed frequently (more than 6 feeds a day), compared to the standard care group (70% vs 63% ).There were no differences in rates of mortality, duration of oxygen therapy or hospital stay.

“The results of this trial are encouraging indeed. Not only is this an example of innovative care developed here in our hospital, it is an exceptional example of how a good idea can be shared across the country and around the world,” says Dr. Lee.  “This was truly a collaborative effort with participating NICU’s, parents, and the whole care team.”

Read more about this story in the media.

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Sinai Health System is one of Ontario’s 23 research hospitals that contribute to a healthier, wealthier, smarter province. Look for other RESEARCH SPOTLIGHT posts on our Healthier, Wealthier, Smarter blog or join the conversation about why health research matters for Ontario on Twitter, using the hashtag #onHWS.

Making Healthcare Smarter: Seeing Medical Ethics Differently

Lisa Boivin is a member of the Deninu Kue First Nation in the Northwest Territories. She paints image-based stories that explore the gap between medical and land-based Dene ethics. She is a graduate student at the Rehabilitation Sciences Institute at U of T’s Faculty of Medicine.

Lisa recently presented her art and her story at the 12th Annual Bloorview Research Institute Symposium, including her image above, called Holding Thunderbird. She also sat down with BLOOM, the digital magazine of Holland Bloorview Kids Rehabilitation Hospital, to share her story. Read the complete, original interview: Lisa Boivin paints stories about medical ethics beyond words.

BLOOM: Why did you study bioethics as an undergrad?

Lisa Boivin: I fell in love with the element of story—that ethics are held in the story of clinical narratives. As a bioethics student, we have all of this academic rhetoric around ethics. But I learned that the ethics are anchored in the story of the patient.

BLOOM: You mean that the most important ethics are found in a patient perspective?

Lisa Boivin: Yes. Clinical and personal hardship helped me to see ethics differently—things like informed consent. I had to read a lot of patient narratives to have a fundamental understanding of the sacred ceremony of informed consent. That’s both parties coming together with complete understanding of one another’s situation, and a balance in decision-making. And that’s something that’s hard to accomplish, for basic reasons. The patient isn’t a clinician, and doesn’t have the expertise that a doctor has in terms of the biology of what’s happening. But there’s also such a tremendous power imbalance between the two parties.

BLOOM: Can you describe your art?

Lisa Boivin: I came to know image-based storytelling through an inability to articulate academic thought from an Indigenous perspective. I’m not a classically-trained artist. I’ve only painted for three years. I’m a ‘60’s scoop survivor from two generations of residential school survivors.

One of my professors asked me to write a paper on colonialism. I couldn’t do it. So I painted it. The paintings are born out of necessity, and are a way to communicate Indigenous perspectives to non-Indigenous colleagues. The one featured above is called Holding Thunderbird.

BLOOM: Can you describe what it means?

Lisa Boivin: From my teachings, Thunderbird is a very powerful being, the carrier of knowledge and the conduit between the creator and the people. Thunderbird is also the carrier of justice. With that responsibility comes great frustration.

I don’t feel knowledgeable, I simply carry a knowledge that is unfolding in images I’m creating. I find myself frustrated often. Holding Thunderbird relates to me as a person who struggles in the academy, where I’m constantly expected to fit my Dene knowledge into a colonial format. That’s extremely oppressive and harmful to me.

There are times when bioscience research clashes with Indigenous research methodologies. This painting was created to thank a professor who was helpful to me at a residency. The woman holding Thunderbird is the professor and all the flowers represent her knowledge. She’s keeping Thunderbird from flying away, and comforting Thunderbird.

She’s the first person that’s never asked me to change or do anything that would be harmful to the Indigenous knowledge in the images. That residency provided me with a healing, and a security I had never known.

For me, the painting represents the notion that we all have our own knowledge and our own knowledge systems. And for us to grow, we need support from people who have power in our lives. It can be a professor, a clinician, or a leader in our community. But the idea is someone holding space for us, as we are.

BLOOM: This reminds me of how difficult it can be to talk about disability in a culture that doesn’t value it. It’s almost like I don’t have the words, sometimes, or I feel like I’m put on the defensive, in trying to convince people that there is value in a different way of living.

Lisa Boivin: This is the kind of damage that the medical model does to people with differences. What I’ve learned from my family is that an Indigenous perspective of wellness is much larger than the narrow perspective of the medical model. The medical model measures wellness as the absence of disease. From my Dene perspective, the measure of wellness is the ability to interact with the land.

My father had polio as an infant, and during his childhood he was seen as someone who was disabled. But when my father came home from residential school, he got on a dog sled. He became a champion dog racer and was no longer disabled. He didn’t consider himself disabled in any way. He just navigated the world differently.

I’m someone who has been diagnosed with a learning difference or cognitive disability. I have a different way of translating knowledge. I’m an image-based storyteller. There’s a reason I can’t interact with certain academic theories. The images came to life and were born out of necessity. If I could translate knowledge in an academic way, I would never have learned how to paint.

BLOOM: You spoke about your dad’s physical disability, and how through dog sledding, he was able. How do Indigenous people view intellectual disability or other types of disability?

Lisa Boivin: Any Indigenous person would want people to embrace who they are, or to create their own idea of wellness. My dad walked with a limp and had varying degrees of mobility, but that never affected his understanding of his wellness.

My wellness comes from an ability to interact with the land—to understand where I am in the world, and how I fit in and what my duties are. My duty is to be an image-based storyteller.

In the Navaho literature, they don’t present an idea of correcting behaviour. You are who you are, and you contribute where you can.

You move differently, you speak differently. The eight-year-old boy in me says: ‘You have a difference, you do different stuff.’

BLOOM: What do you hope to do in the future?

Lisa Boivin: I want to share information about Canada’s colonial history and how that creates clinical barriers between a clinician or therapist and a patient.

There are centuries of failed relationships between what would become Canadian institutions and Indigenous people. For hundreds of years, there’s broken promises, institutional racism and mistrust. And this still takes place in medicine today. I am horrified when I read stories in the media about Indigenous patients who die in ERs because they’re seen as drunk or drug-seeking. When an Indigenous patient sees that in a media story, it influences how they interact with a doctor.

Medicine has also been used as an instrument to remove Indigenous children from their homes, because it’s perceived that Indigenous parents can’t look after their children. This was certainly the case for my father, who had over a dozen surgeries to correct his mobility impairment.

I’d like to promote an understanding of a wider notion of wellness. As we spoke of earlier, the medical model is very simplistic. It’s the presence or absence of disease. There are wider models of wellness.

For many Indigenous people, the ability to interact with the land is a measure of wellness. An Indigenous worldview includes the land, animals, community and nature. An ability to contribute to community is central to wellness, and that can be any contribution.

I’m a health-care educator and I will continue using arts-based practice to educate about colonialism and how that exists in medicine.

 

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Holland Bloorview Kids Rehabilitation Hospital is one of Ontario’s 23 research hospitals that contribute to a healthier, wealthier, smarter province. Look for other RESEARCH SPOTLIGHT posts on our Healthier, Wealthier, Smarter blog or join the conversation about why health research matters for Ontario on Twitter, using the hashtag #onHWS.

Alzheimer’s drug one step closer to reality after Krembil team signs major development deal

A research team at the Krembil Research Institute has inked a deal with a multinational pharmaceutical company that could speed development of a potential disease-modifying drug for Alzheimer’s disease.

French drug company Servier has announced a new strategic research partnership agreement with Toronto-based Treventis Corp. – a biotech company founded by Krembil Director Dr. Donald Weaver – to co-develop a promising new therapeutic treatment already underway at UHN.

“This is a very big deal,” said Dr. Weaver, a medicinal chemist, University of Toronto Professor, Canada Research Chair and neurologist who treats dementia patients at Toronto Western Hospital.

“Drug discovery is a tremendously competitive field and this partnership demonstrates the ability of Krembil and UHN to achieve a level of excellence on the world stage. It also helps cement our place as one of the leading neuroscience research facilities in Canada.”

As part of the collaborative agreement, researchers in Paris and Toronto will jointly develop compounds that target two key proteins known to play a role in Alzheimer’s disease. Those proteins, called tau and beta-amyloid, are believed to have a deleterious effect on brain function when they misfold.

“We all have these proteins in our brains. When they misfold they become toxic to brain cells. They kill brains cells,” said Dr. Weaver. “We have identified a class of compounds that we believe prevent beta-amyloid and tau from doing this.”

Dr. Weaver’s team has spent nearly two decades searching for a therapeutic strategy to slow or stop the neurodegenerative disease that affects more than 500,000 Canadians.  There are currently no disease-modifying drugs for Alzheimer’s on the market.

In 2013, Treventis was awarded $4.7-million in funding from the prestigious Wellcome Trust to investigate compounds, with the goal of designing a drug that can safely and effectively treat people with chronic neurological dementias, such as Alzheimer’s. Funding from the Wellcome Trust, a British-based independent charity, is extremely competitive, difficult to obtain and is traditionally awarded to researchers in the U.K.

“The Wellcome Trust funding allowed us to get to the point where we have a molecule that works, but needs some fine-tuning,” said Dr. Weaver. “Partnering with a major pharmaceutical company like Servier is the next logical step.”

Dr. Weaver is quick to also credit other funding agencies that have played a significant role in advancing the fundamental research to its current stage of applied drug discovery. Among the most generous contributors, he said, are the Alzheimer’s Society of Canada, Canadian Institutes of Health Research, Toronto General & Western Hospital Foundation, The W. Garfield Weston Foundation, BrightFocus® Foundation and Krembil Foundation.

For its part, Servier has indicated it is excited to partner with Treventis in taking this research to the next level.

“We very much hope that this new collaboration will allow us to answer the huge unmet patient need for disease-modifying treatment of Alzheimer’s disease, thanks to Treventis’ unique and innovative technology,” Christian de Bodinat, the company’s Director of the Center of Therapeutic Innovation in Neuropsychiatry, said in a statement.

“We are very excited to be part of one of the first programs employing a dual approach in this field.”

As part of the agreement, Servier will fund all research costs and maintain worldwide rights to develop and commercialize drugs advanced during the partnership.

Dr. Weaver and his team are thrilled to partner with one of the most innovative pharmaceutical companies in the world.

“I think it says that Servier has faith that we have a sound approach, excellent molecules and that there is a good foundation already in place,” said Dr. Weaver. “This allows us to optimize and fine-tune the molecule and perform more elaborate biological evaluations.”

Next steps for the research team include ramping up work in the laboratories at the Krembil Discovery Tower and JLabs, and attempting to identify a candidate for a Phase 1 clinical trial.

*Story originally published on UHN website here.

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University Health Network is one of Ontario’s 23 research hospitals that contribute to a healthier, wealthier, smarter province. Look for other RESEARCH SPOTLIGHT posts on our Healthier, Wealthier, Smarter blog or join the conversation about why health research matters for Ontario on Twitter, using the hashtag #onHWS.

Patients + Research: Pamela Parker

Research and care at Canada’s first cardio-rheumatology clinic

Meet Pamela

Two years ago, Pamela Parker’s hands became cracked and sore, and she learned she had developed severe psoriasis and eczema.

Pamela Parker Women's College Hospital

After seeing a specialist, she learned the psoriasis was also in her joints, a condition known as psoriatic arthritis. She was referred to Dr. Lihi Eder, a rheumatologist and a scientist at Women’s College Hospital (WCH) who runs the psoriatic arthritis program at WCH. After sharing her family’s history of heart disease, Dr. Eder referred Pamela to the WCH cardio-rheumatology clinic, the first of its kind in Canada.

Research has shown that patients with rheumatic conditions, such as psoriatic arthritis and rheumatoid arthritis, are at a higher risk for heart disease and other cardiovascular complications. The new clinic is helping patients like Pamela manage their heart health, and ideally, prevent a serious cardiac event. Dr. Eder and Dr. Paula Harvey, the head of cardiology at WCH, jointly run the clinic and collaborate on research studies about the connections between joint health and heart health.

Pamela shared why she is grateful for her care and why she gives back by participating in research.

Could you tell us about your health story?

All of a sudden, it was May 2015, when my skin just went berserk and my joints just went berserk. I was getting married as well, and you are focused on your nails and hands. I thought — why would my hands go from normal to this, and my joints? That’s when I was referred to Dr. Eder. She is very thorough and very caring. She actually takes her time out of her day to call me personally, which does not usually happen with specialists. I found out I do have psoriatic arthritis on top of psoriasis and eczema. She said we need to treat this aggressively or I could end up being crippled.

How were you referred to the cardio-rheumatology clinic?

Dr. Eder said there was a correlation between psoriatic arthritis and heart disease. She asked if I had a family history. I do, my father passed away of a massive coronary and my sister has had a triple bypass. I was referred to the cardio-rheumatology clinic and they did tests, and I have elevated cholesterol, nothing major at this point. For me, it was so amazing to have access to a cardiologist at a stage where if there is an issue they will be on top of it, knowing my family history. Dr. Eder then asked if I wanted to join a combined study and I was happy to participate in their research.

Why did you decide to participate in research?

It is so important. Participating is minor compared to having a crippling disease that no one knows anything about. My kids, my grandkids, my great grandkids could end up with these conditions, and if studies could figure out the ins and outs and shortcuts to detect issues early, I am all for it!

 

Approximately 30% of the people with psoriasis will develop an inflammatory arthritis known as psoriatic arthritis. Learn more about the psoriatic arthritis rapid access clinic at Women’s College Hospital and discover patient resources.

 

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Add Your Voice

Want to add your voice to the Patients + Research blog series? Email or call Elise Johnson at ejohnson@caho-hospitals.com, 416-205-1469, or direct message or tweet at us on Twitter at @CAHOhospitals.

Read more Patients + Research posts and share your own insights on Twitter with the hashtag #onHWS. To learn more about how health research makes Ontario healthier, wealthier and smarter, visit our impact page, and check out our other blog posts and videos.

The Next Generation of Top Research Talent

Ontario Research Hospitals make our province and our health system smarter by attracting, training and retaining the next generation of health care professionals. Carley Richards, a trainee at The Royal, shares her experience diving into mental health research.

Meet Carley Richards

Throughout her teenage years, Carley Richards struggled with feeling depressed.

It wasn’t until her second year of university that she was actually diagnosed with depression and attention deficit hyperactivity disorder (ADHD). She finally had a piece of paper, with a diagnosis, that proved it wasn’t just “in her head.”

It was a change that would have a huge impact on her academic career.

“The brain is like a big unknown body of water that we’re only just dipping our toes into,” says Richards. “I realized the more we learn about and understand the brain, the more we’ll be able to help people like me.”

The Gut and the Brain

Now working toward a master’s degree in neuroscience at Carleton University, Richards is a research trainee under the supervision of Dr. Marie-Claude Audet, a researcher at The Royal’s Institute of Mental Health Research (IMHR). She recently won a Graduate Student Research Award from the IMHR.

“Recent research has shown that people with depression have different bacteria in their digestive system than people without depression,” says Richards.

The goal of her research is to look at the microbiome of two different groups of people — those who have depressive symptoms and those who do not. She’s hoping to link trauma in a person’s life to changes in gut bacteria, and explore whether changes in gut bacteria are associated with depressive symptoms.

Life as a Young Researcher

“As a young researcher paying for my own education, I need funding to conduct my research, which means I need to apply for grants and scholarships,” she says.

“It can take a lot of time, and unfortunately for young researchers, there’s a lot of competition and rejection. It can be really tough to stay in research.”

The funding from the IMHR Graduate Student Research Award is helping Richards push her research project forward.

“When you’re stressed, your body releases certain chemicals,” she says. “I’m using this funding to purchase a lab kit that measures a specific binding agent that connects those stress chemicals to the bacteria in the gut.” By using this lab kit, it will be possible for Richards to measure those connections.

“We’re a long way from understanding the brain, but imagine if we could treat symptoms of depression by treating specific bacteria in your gut,” says Richards. “We’re not there yet, but it’s exciting to know I’m contributing to that possibility.”

The Graduate Student Research Awards are funded by The Royal’s Foundation. They fund research and education experiences for young researchers as they work to make a difference in the lives of people living with mental illness.

 

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The Royal Ottawa Health Care Group is one of Ontario’s 24 research hospitals that contribute to a healthier, wealthier, smarter province. Look for other RESEARCH SPOTLIGHT posts on our Healthier, Wealthier, Smarter blog or join the conversation about why health research matters for Ontario on Twitter, using the hashtag #onHWS.

Research Spotlight: Health Sciences North

Dr. Janet McElhaney and her team at Health Sciences North Research Institute (HSNRI) are working with Indigenous communities to promote healthy aging of Indigenous People in Canada.

On December 4th, 2017, MP Paul Lefebvre announced on behalf of Health Minister Ginette Petitpas Taylor and CIHR-IAPH, a $1.4 million funding investment for improving the health of Indigenous seniors.

This funding will support a project titled “Aging in Place: Promoting Healthy Aging for Indigenous People with Multiple Chronic Conditions”, led by HSNRI’S Dr. Janet McElhaney, Vice President of Research & Scientific Director and Dr. Jennifer Walker, Canada Research Chair of Indigenous Health at Laurentian University. Using Indigenous research methods, the project will explore caregiving experiences and patterns to better understand how communities can support Indigenous families living with multiple chronic conditions.

“The funding from CIHR will provide an opportunity for collaborative community-based research that will identify the needs of Indigenous older persons and develop interventions to address the health issues and barriers to care for older adults. It will allow us to work with communities and find innovative solutions while working to develop the next generation of researchers,” says Dr. Janet McElhaney, HSNRI’s Vice President of Research and Scientific Director.

This project is funded in partnership with First Nation communities in Northern Ontario and Saskatchewan to identify the needs of Indigenous older persons living with multi-morbidity; develop interventions to address health issues and barriers to caring for older adults; and evaluate the effectiveness of community-specific interventions to enhance “holistic health”.

The goal is to create a legacy of sustained partnerships that promote true reconciliation and together cultivate a way forward from colonization and intergenerational trauma to healthier aging.

 

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Health Sciences North is one of Ontario’s 23 research hospitals that contribute to a healthier, wealthier, smarter province. Look for other RESEARCH SPOTLIGHT posts on our Healthier, Wealthier, Smarter blog or join the conversation about why health research matters for Ontario on Twitter, using the hashtag #onHWS.

 

 

 

Hamilton Health Sciences: We Are Explorers

Redefining “Research”

By Ted Scott, Acting Vice President Research & Chief Innovation Officer, @Chief_Innovator 

The dictionary definition of “researcher” is painfully self-explanatory: “someone who conducts research.” Based on my experience at Hamilton Health Sciences over the last few years, this description does no justice.

The word “research” itself has attracted a certain connotation that invokes images of anonymous individuals in lab coats analyzing samples in whitewashed, sterile rooms in the pursuit of some far-off, seemingly impossible discovery. Sure, some discovery happens that way. But, so often, it’s so much more than that.

At HHS, our researchers are so much more than people in lab coats. They are innovative, strategic, highly creative minds who translate complex data into new knowledge. Many of our researchers are also healthcare providers. Every day, they work alongside the patients who are the inspiration for their research pursuits. Their “labs” are patients’ rooms, clinics, and operating theatres. Every day, they’re on the front lines of our healthcare system, asking questions and solving problems. Their roles span the entire spectrum of healthcare professions: they’re surgeons, pediatricians, physiotherapists, nurses, students. They’re also our neighbours, friends, family members and, sometimes, they’re patients, too.

In my short time at HHS, I’ve learned that our researchers are also some of our community’s top innovators and collaborators. They’re forming networks across our city and region that are aimed at improving the way we provide healthcare, applying technology and expertise to make our healthcare system better. And, most importantly, their work has immense, tangible impact. Beyond the lab and the computer database, our nearly 2,000 researchers and research staff are discovering and implementing new knowledge that’s changing the way we care for people, in real-time.

For example, they’re testing in-home technology that our nurses and doctors can use to monitor patients once they go home after heart surgery. They’re working with tech innovators to find better ways of predicting outcomes for cancer therapies, so patients can make better decisions around their treatment options. They’re trialling the latest therapies to help make life easier for kids with chronic diseases, like IBD.

This is just a sampling of the research happening at our hospitals, right now. It wouldn’t be possible without our researchers and research staff who are unwavering in their pursuit of making life better for people in our community, across our country, and around the world.

I admire their persistence, their patience, and their will to keep exploring, even when the answers aren’t clear. And especially when competing commitments – of being doctors, nurses, allied health professionals, students – are as demanding as they are in our very busy health system.

It’s this insatiable drive to know the unknown that I believe better defines a researcher, no matter how big or small the issue at hand.

At HHS, we’re redefining what “research” means to our community, and to the world.

We’re not just researchers. We are explorers. It’s in our DNA.

Read about Explorers at Hamilton Health Sciences:

BLOG: Creating a new treatment option

 

BLOG: The stubborn pursuit of “Why”

      

For more, visit WeAreExplorers.ca 

#WeAreExplorers #onHWS

 

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Hamilton Health Sciences is one of Ontario’s 23 research hospitals that contribute to a healthier, wealthier, smarter province. Look for other RESEARCH SPOTLIGHT posts on our Healthier, Wealthier, Smarter blog or join the conversation about why health research matters for Ontario on Twitter, using the hashtag #onHWS.

 

 

Canadian First: SickKids and Sinai Health System repair spina bifida in-utero

In a Canadian first, a team from Mount Sinai Hospital and The Hospital for Sick Children (SickKids) has repaired a form of spina bifida in a fetus at 25 weeks gestation. The baby’s mother, Romeila Son, recovered very well from surgery, and a bouncing baby girl, Eiko, weighing 2.45 kg, was born on August 19 at 36 weeks gestation at Mount Sinai Hospital. Since her birth, Eiko has needed no further intervention for this usually debilitating condition. This is the first case in Canada where the mother has not had to travel to the United States for this specialized surgery.

Dr. Greg Ryan heads Canada’s largest and most experienced fetal therapy program at Mount Sinai Hospital and Dr. James Drake heads Canada’s largest and most established neurosurgical centre for the postnatal repair of spina bifida at SickKids. Working in collaboration with colleagues from Vanderbilt University in Nashville who pioneered the procedure, a team of 24 clinicians led by Drs. Ryan and Drake successfully carried out the 2.5 hour in-utero procedure at Mount Sinai on June 4, 2017.


From left: Dr. Michael Apkon, President & Chief Executive Officer, SickKids; Dr. Paige Church, Head of spina bifida clinic at Holland Bloorview Kids Rehabilitation Hospital; Dr. James Drake, Head of Neurosurgery, SickKids;  Premier of Ontario, Kathleen Wynne; Dr. Greg Ryan, Head of Fetal Medicine program, Mount Sinai Hospital; Romeo Crisostomo, Eiko’s dad; Romeila Son, Eiko’s mom; baby Eiko Crisostomo; Dr. Mathew Sermer, Obstetrician and Gynaecologist-in-Chief, Sinai Health System; Dr. Gary Newton, President and Chief Executive Officer, Sinai Health System.

What is spina bifida?

Myelomeningocele is a form of spina bifida, affecting approximately 120-150 babies in Canada each year. It is caused when the spinal column fails to close early in fetal development, causing permanent damage to the baby’s spinal cord and nervous system.

Babies with spina bifida can have varying degrees of paralysis of their lower limbs and many will need mobility supports such as leg braces, crutches or wheelchairs. Over 80 per cent of children with spina bifida will require a shunt to be inserted to relieve pressure on their brain, which must remain in place for their entire life, and some affected children will have a negative neurocognitive outcome. Between 15-30 per cent of children with spina bifida do not survive into adulthood and less than 50 per cent live independently as adults. A third of adults with spina bifida require substantial lifelong daily support. The emotional, social and financial impact for these affected individuals, their families and society as a whole, is enormous.

Better treatment option for babies

The Management of Myelomeningocele Study (MOMS), a groundbreaking trial published by Vanderbilt University, Children’s Hospital of Philadelphia and the University of California, San Francisco, in the New England Journal of Medicine in 2011, showed that, in babies who underwent the in-utero procedure:

  • Brain malformations were reversed by one-third
  • The need for walking aids or a wheelchair was halved
  • Their need for brain shunts was reduced by half

Consequently, the Society of Obstetrics and Gynaecologists of Canada (SOGC) now mandates that any pregnant woman whose fetus has spina bifida must be counselled about this treatment option.

“Although fetal surgery will not be appropriate for all fetuses with spina bifida, it is extremely encouraging that, for some, it may preserve neuromotor function, reverse brain herniation and reduce their need for a brain shunt,” said Dr. Greg Ryan, head of the fetal medicine program at Mount Sinai Hospital, part of the Frances Bloomberg Centre for Women’s and Infants’ Health. “However, it also entails some maternal and fetal risks, particularly that of premature labour, which must be carefully balanced.”

“We regularly see children who have been affected by spina bifida at SickKids,” said Dr. James Drake, head of the division of neurosurgery and senior associate scientist at SickKids. “It is my hope that our capacity to perform this in-utero surgery here in Toronto will mean that we can optimize their clinical outcomes, and reduce the degree of medical challenges these children will face.”

Collaboration counts

“I am extremely proud of the collaboration between Mount Sinai Hospital and SickKids – which has resulted in a terrific outcome for this baby girl,” said Dr. Ryan.”Having this kind of clinical capacity here in Ontario will really change the range of options available to parents who have been given a diagnosis of spina bifida during pregnancy.”

“I would like to congratulate everyone at Mount Sinai Hospital and SickKids who teamed up to perform Canada’s first in-utero spina bifida surgery,” said the Honourable Kathleen Wynne, Premier of Ontario. “The incredible story of baby Eiko’s journey into this world shines a bright light on our world-class health care professionals. They’re talented, innovative, and making life better for people in this province — starting even before they’re born. Congratulations to little Eiko and her family. I wish them a healthy, happy future.”

Mount Sinai Hospital and SickKids recently collaborated on another in-utero surgical first, repairing a congenital heart defect called transposition of the great arteries, in May, 2017. The team from SickKids and Mount Sinai Hospital is Canada’s only provider of fetal surgery.

Read the original press release of this Canadian First here.

*Feature photo: From left: Premier of Ontario, Kathleen Wynne; Dr. James Drake, Head of Neurosurgery, SickKids; Romeo Crisostomo, Eiko’s dad; baby Eiko Crisostomo; Romeila Son, Eiko’s mom; ; Dr. Greg Ryan, Head of Fetal Medicine program, Mount Sinai Hospital.

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SickKids and Sinai Health System are two of Ontario’s 23 research hospitals that contribute to a healthier, wealthier, smarter province. Look for other RESEARCH SPOTLIGHT posts on our Healthier, Wealthier, Smarter blog or join the conversation about why health research matters for Ontario on Twitter, using the hashtag #onHWS.

HIV care that’s made for women

Women are one of the fastest growing populations at risk for HIV infection and they have worse clinical outcomes than men do.

Dr. Mona Loutfy, a senior scientist at Women’s College Research Institute, is developing HIV care designed especially for women’s needs to close the health gaps they experience.

Dr. Loutfy leads the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS), a national study funded by the Canadian Institutes of Health Research. The study’s goal is to help women with HIV be as healthy as they can be in every way.

Study findings have shown that women in Canada receive good treatment for their HIV but their overall women’s health needs — including pregnancy planning, Pap testing, mammograms and mental health care — are often overlooked. To find and address these gaps, Dr. Loutfy engages women with HIV and their communities to ensure their concerns drive her research questions.

“When we set out to look at what we thought as researchers, were the most important topics, we thought it was going to be all about delivery of HIV care. What came out was actually a bit different.”

The study found that 64 per cent of the women had experienced violence in childhood and 80 per cent had experienced violence in adulthood. Half of the women had depressive symptoms. Isolation and poverty were also significant issues in the community.

“I feel that the care needs to be a little bit different,” Dr. Loutfy says.

She is working to create a new model of care that is women-centred, meaning focused on optimizing the overall health of women with HIV in Canada, particularly those at a higher risk, such as Indigenous women and trans women.

For women like Evana Ortigoza, a Community Advocate with Dr. Loutfy’s Trans Women HIV Research Initiative, the effort is very important. Evana is a trans woman who has lived with HIV for 17 years.

“The research they’re doing here is for trans and women, women with kids and women in all their diversity; it’s amazing. We are not alone,” she says. “Everywhere I go, Women’s College is there to make sure that women are protected.”

Watch the video above to learn more about Evana and Dr. Loutfy’s research, and visit report2017.womensresearch.ca to learn more about research at Women’s College Research Institute at Women’s College Hospital.

 

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Women’s College Hospital is one of Ontario’s 23 research hospitals that contribute to a healthier, wealthier, smarter province. Look for other RESEARCH SPOTLIGHT posts on our Healthier, Wealthier, Smarter blog or join the conversation about why health research matters for Ontario on Twitter, using the hashtag #onHWS.

Celebrating Science and Innovation across CAHO Hospitals

On October 25th, the Council of Academic Hospitals of Ontario (CAHO) held its 3rd Healthier, Wealthier, Smarter Health Research Showcase at Queen’s Park to demonstrate and celebrate the breadth and depth of health research underway across Ontario’s 23 research hospitals.

“Today’s slogan is that health research makes Ontario healthier, wealthier and smarter. I believe that’s true, but I would add that health research also gives us the opportunity to be better,” said Bill Bishop, who spoke at our showcase about his experience participating in a metabolic syndrome research study with Dr. Amer Johri at Kingston Health Science Centre. Read more about that research in a previous blog post.


Bill Bishop, metabolic syndrome research volunteer from Kingston Health Sciences Centre, shares his experience and thoughts on the value of research for Ontario.  

“Investing and participating in health research is not an opportunity to give back, but an opportunity to give forward, to future generations,” Bill continued. “It often happens that, while doing the research on one specific thing, new and different things are discovered. By investing and participating in research, we are better citizens.”

An inspiring morning, our showcase welcomed nearly 30 Ministers, MPPs, Government Officials and Queen’s Park staff into a room full of science and innovation to meet the amazing researchers who make it happen.

“It really takes a special kind of person to do research,” said CAHO Chair, Kevin Smith. “Today we celebrate not only the product, but the people. In partnership with our University and College partners, research-intensive hospitals are here to help scientists drive research that really matters to the people of Ontario, Canada and the world.”


Dr. Martin Osmond, Vice President of Research at Children’s Hospital of Eastern Ontario (CHEO), tests out Botley’s Bootle Blast, a mixed reality rehabilitation therapy game developed by researchers at Holland Bloorview Kids Rehabilitation Hospital.  


Our showcase was a meeting of the minds – literally! Researchers at Sunnybrook Health Sciences Centre are using focused ultrasound technology to open the blood-brain barrier in people with Alzheimer’s disease to get therapies safely and directly into the brain.


Can we generate a kidney for human transplant by replacing cells in a pig’s kidney with a patient’s own cells? Dr. Ian Rogers and Tonya Bongolan from Sinai Health System share their research with Minister Reza Moridi. 

Part of the celebration also included remarks from Minister of Research, Science and Innovation, Reza Moridi, who has been a strong champion of health research in Ontario. Minister Moridi described how some cancer diagnoses that would likely have been fatal 25 years ago are treatable today and, in some cases, are even curable thanks to discovery and the dedication of researchers. This is the real impact that health research has on the daily lives of people in this province.


Minister Reza Moridi speaks to the audience at CAHO’s 3rd Healthier, Wealthier, Smarter Health Research Showcase 

The showcase was buzzing with over 100 representatives from CAHO member hospitals in the room, and over 230 voices engaging on our #onHWS hashtag, which trended at number one in Canada throughout the morning.

DOWNLOAD the summary of research on display.

SCROLL through our live tweet summary.

LEARN more about CAHO hospitals.

Read more blog posts on our Healthier, Wealthier, Smarter site and share your insights on Twitter with the hashtag, #onHWS. To learn more about how health research makes Ontario healthier, wealthier, and smarter, check out our website and our other blog posts and videos.

*Feature Photo: Drs. Gianluigi Bisleri and Ben Glover form Kingston Health Sciences Centre showcase their innovative 3D cardiac ablation procedure – a Canadian first.

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