Not all that long ago, the outlook was bleak for most babies born with improperly formed hearts (aka congenital heart disease): in 1959, 80 per cent didn’t survive to reach age 18. (One in 100 to 150 babies in Canada are born with a congenital heart abnormality.)
Today, thanks to incredible advances in surgical techniques and other types of medical care, 98 per cent live well into adulthood.
But there’s a less cheerful side to that amazing success story. A single operation in infancy or childhood is typically only a temporary fix.
Because people with ACHD are at high risk of developing problems such as leaky valves, heart rhythm disorders, and heart failure (usually at much earlier ages than average), they require ongoing, highly specialized expert care throughout their lives. (Consequently, if they fall through the cracks after ‘graduating’ from a paediatric hospital, the consequences can be potentially deadly.)
Or, as one of the physicians with the ACHD program told me, while a baby with congenital heart disease remains under the care of specialists at SickKids for 18 years, the relationship he and his colleagues will have with that same individual will last 50 years and beyond.
In Canada, we’re fortunate enough to have a facility that has been at the forefront of not just prolonging the survival of people with adult congenital heart disease, but also helping them live healthy, fulfilling lives.
The Adult Congenital Heart Disease(ACHD) Program (part of the Peter Munk Cardiac Centre) is one of the oldest, and largest in the world. It’s also one of the top two centres on the planet for training physicians who specialize in managing the unique risks pregnancy and birth pose for women with ACHD.
I had the privilege of speaking with a young man who, in his early 20s, had to decide when to have surgery to repair a faulty valve that would otherwise irreversibly damage his heart, and shorten his life by many decades.
You can read his story, and learn more about the ACHD program in this piece I wrote for PMCC’s 2021 annual report: ‘A Patient for Life: Care Doesn’t Stop for People With Congenital Heart Disease.’
The entire report is available here.
My thanks to both interviewees, Michael Bannock and Dr. Rafael Alonso; and to Bryan Borzykowski at ALLCaps Content for the opportunity to participate in this fascinating project.