Beat as one
Dr. Luc Mertens, Heart & Stroke researcher
Congenital heart disease: easing life’s transitions
Life changes pose special challenges for people with congenital heart disease. Dr. Andrew Mackie wants to ease their way
We invest so much in our infants and children with congenital heart disease, that not setting them up for success in adulthood seems like a huge missed opportunity.
Dr. Andrew Mackie, Heart & Stroke researcher
This Heart Month, we’re shining a spotlight on congenital heart disease (CHD) – a condition that happens when there’s an abnormality in the structure of the heart before birth. Thanks to recent medical advances – 9 in 10 kids now survive to adulthood.
While medical innovations can correct heart defects, new problems can appear throughout life and most patients need specialized follow-ups. Navigating a complex system takes knowledge they may not have – and it can be harder for those living in remote areas or facing socioeconomic or cultural barriers. This can result in lapses in care, putting heart health at risk.
Dr. Andrew Mackie, professor of medicine at the University of Alberta and cardiologist at Stollery Children’s Hospital in Edmonton, wants to help. He’s leading a multi-disciplinary team in a research program called Optimizing Care Transitions Across the Lifespan in Congenital Heart Disease. He’s also one of three recipients of the Congenital Heart Disease Team Grants, co-funded by Heart & Stroke donors.
The program will gather data – age, sex, type of heart defect and life expectancy – to paint a picture of lifespan challenges, including transitions to adulthood, parenthood and end-of-life. “The goal is to improve the experience of patients and families, reduce anxiety and improve medical outcomes when it comes to going through care transitions.”
Baby Nora: growing up strong
November 3, 2016: Nora turned blue minutes after birth. When hospital staff said it was her heart, mother Aleasha, having just given birth to twins, could barely take it in.
Aleasha stayed behind with brother Koa as Nora was rushed to Toronto’s SickKids. Seeing her baby hooked up to a heart and lung machine took her breath away: “Her heart wasn’t kicking in.”
Diagnosed with a congenital heart disease leading to cardiomyopathy – her heart was unable to properly pump blood – Nora finally got her new heart five months later. Aleasha recalls, “She was a different baby immediately.”
Today, the happy, healthy eight-year-old is beating heart disease, dancing, swimming and receiving ongoing care from her cardiology team. She recently displayed her scar and “hero beads” to her classmates. Proud mother Aleasha: “I tell her to be proud of herself and never hide it.”
Your support helps us treat and care for children born with congenital heart disease – today and into the future!
Nora then. Nora now.
Improving lifelong outcomes
Dr. Luc Mertens wants to help patients with complex heart defects live better and longer
I
think the most important thing we do is deliver hope.
“ ”
Dr. Luc Mertens, Heart & Stroke researcher
A baby born with one pumping chamber (functional ventricle) in their heart instead of two has a univentricular heart – one of the most complex congenital heart defects.
Key to survival is a surgery called the Fontan procedure, usually performed in early childhood. But over time, people can develop Fontan associated circulatory failure (FCF). Simple tasks can leave them breathless. A heart transplant can be the only solution.
Why does FCF only affect some; how can it be prevented? These questions are driving a multidisciplinary research project led by Dr. Luc Mertens, medical director of echocardiography and co-director of the pulmonary hypertension programs at Toronto’s Hospital for Sick Children.
The project, PHUR4Life — Precision Health for patients with Univentricular HeaRts across the Lifespan – recently received one of three Congenital Heart Disease Team Grants, co-funded by Heart & Stroke donors.
“We hope to be able to better identify the early mechanisms leading to Fontan circulatory failure,” says Dr. Mertens.
He hopes that by detecting FCF earlier and identifying those at higher risk, the team can develop preventive strategies targeted to individual circumstances.
“When you see what the field has achieved over the last few decades, it’s remarkable,” Mertens says, a lot of work to do.”
Heart-healthy eating on a budget
A healthy diet shouldn’t drain your wallet. Make smart choices that work for your tastes, skills and budget and discover the joy in healthy eating!
To learn more about healthy eating on a budget, and to download a free guide, visit heartandstroke.ca/budget
The flu shot: there’s still time to protect yourself
Having the flu can increase the risk of another stroke or heart attack, says Heart & Stroke researcher and stroke neurologist Dr. Alexandre Poppe. “Studies have shown that the risk of stroke or heart attack increases shortly after a flu infection, but probably even more in someone predisposed to stroke.”
He stresses the importance of getting both a flu shot and COVID booster: “COVID and the flu are two different illnesses, so it’s important to get both vaccines.” To learn more, visit: heartandstroke.ca/flu
Learn more!
Gord and Angie: grateful for life-saving research
When he fell ill, avid birdwatchers Gord McNulty and wife Angie knew that his condition was serious enough to cancel a much-anticipated ornithologist’s convention.
Gord was in and out of hospitals for weeks as doctors searched for answers. “My condition deteriorated to the point where I couldn’t walk,” Gord recalls. Released with medication for suspected Parkinson’s, he returned four days later.
A journalist for nearly forty years, Gord knows that facts matter. It was second nature to push for answers.
Rather than the suspected Parkinson’s, Stiff Person Syndrome or cancer diagnoses, a high fever and brain bleed revealed endocarditis – a rare, potentially fatal infection of the inner lining (endocardium) of the heart’s chambers and valves.
Transferred to Hamilton General Hospital for life-saving surgery, the affected mitral valve was successfully replaced with a pig’s valve. Forty-seven days later, Gord returned home.
He and Angie are grateful for the research that saved his life: “Our monthly gift is a wonderful investment – leaving a gift to Heart & Stroke in our Wills will help ensure a sound future for the Foundation.”
A life-saving
gift, a legacy of hope
Your legacy gift will make an impact for generations to come. Together, we can build a future where everyone enjoys longer, healthier lives uninterrupted by heart disease or stroke.
Contact numbers are: Mary Goodfellow - ON 1-800-205-4438
Susan Deike - BC, YK, AB, NWT, SK, MB 1-403-451-3675
Angela Gresseau-Okalow QC, NS, PEI, NL 1-416-386-4517
To learn more about Legacy giving, visit: heartandstroke.ca/legacy
A gift of securities is one of the most cost-effective ways to support the cause that’s close to your heart. Learn more at: heartandstroke.ca/securities
When we beat as one, we achieve so much more together.
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Gord and Angie McNulty