According to a new report by the Heart and Stroke Foundation, more people are living with congenital heart disease (CHD) as care and diagnosis continue to improve.
CHD, a life-long heart defect, is used as an umbrella term to describe abnormalities in the structure of the heart like holes in the heart's walls or valve leaks and can have a large range of symptoms according to Katie White, director of health systems for the foundation.
"It can create a higher risk of other conditions, so things like stroke, particularly in youth or young adults, and things like heart failure for people with more severe forms of CHD. It can increase the risk of cardiac arrest, but it also could increase your blood pressure, so increased rates of hypertension," said White.
Victoria's Will Wey, 9, was diagnosed in utero with transposition of the great arteries, a hole in his heart, and later found to have poorly formed aortic and mitral valves.
"I found out during that routine 18-week ultrasound when I was pregnant. And then I was informed that I would have to give birth in Vancouver," said Melody Wey, Will's mom. "I had to be there, I think four weeks in advance of my due date because in case Will came early, they wanted to make sure that I was close to the hospital in Vancouver."
By the time he was in Grade 1, Will had undergone six surgeries, including the implementation of a pacemaker. In 2021, the summer before he started kindergarten, he underwent a successful aortic valve replacement which Melody says left him "super healthy and strong ever since."
"He actually outruns his friends now. He's super on his bike. He'll zip around our neighbourhood and while [people are] walking their dogs, they'll actually stop because he's going so fast," she said. "I mean, as a parent, I'm just so proud of him."
On Feb. 4, the foundation released their first-ever report on CHD which found that as many as one in four CHD cases are critical and require medical intervention in the first year of life, but nine in 10 babies born with congenital heart defects now survive until adulthood.
"Progress in congenital heart disease care has really advanced in the last several decades, which means we now have more people living with congenital heart disease than before," said White, adding that the increase in adults with CHD has presented new challenges for researchers.
As those with CHD transition from pediatric to adult care, they can experience anxiety around leaving a familiar setting and health team to take on their own management, according to the report.
Melody seconded those concerns, mentioning that the "platinum service" Will gets as a child could change when he reaches adulthood. She said the report didn't have any surprises, and it validated her own experiences, and she hopes to see more research about the subject in the future.
A national strategy is currently being developed with a focus on six priority areas: specialized care, evidence-based care, optimal transitions, integrated health systems, community integration and whole person care.
As Will gets older and moves towards his first years in middle school, like any parent, Melody says she's a bit nervous as he may get introduced to bad habits, but overall they have a good support system and she's excited to watch him continue to develop.
"A lot of it happened when he was really, really little, so I think it's just really being open with him about what are the risks and why this might not be a good choice for you," she said. "But he's got a super great little group of friends, and we all live in the same neighborhood. Us parents all talk together and I think just having a good friendship circle around is going to help him."
According to the latest published data in 2010, 257,000 people in Canada were living with CHD, but experts agree that the current number is likely over 300,000 now according to the foundation.
