A four-year-old Winnipeg boy born with a congenital heart defect, whose parents feared he would never be able to be active, has defied the odds, lacing up his skates on weekends to play hockey.
James Burns had his first surgery just minutes after he was born with transposition of the great arteries — a potentially fatal condition, a pediatric cardiology expert said.
“It’s a condition where the two major tubes, or arteries, that come off of the heart are developed in a way that they’re switched around. So the tube that’s supposed to be taking blood to the body is actually taking blood to the lungs, and the tube that’s supposed to be taking blood to the lungs actually is sending blood out to the body,” said Dr. Reeni Soni, the Winnipeg Children’s Hospital’s head of pediatric cardiology.
“If that condition is not picked up before birth and the baby is born with it and nobody knows, typically what happens is over the first day or two the body’s oxygen levels drop to dangerously low levels and if undiagnosed and corrected then that is usually rapidly fatal, we’re talking within hours or days.”
That first surgery was just enough to stabilize him to fly to Edmonton for open-heart surgery, his mother Melissa Burns said.
It was in Edmonton at the hospital where James’ parents, Melissa and Chris, were told the devastating news.
“We were just waiting through rounds, and the doctors were coming by, and they always ask you if you have any questions and having an active lifestyle and participating in sports is a really big part of my husband’s and my life — so we asked them very honestly ‘is there a possibility he could play as he grows up?’” Burns said. “They gave us a very real answer of ‘it is very likely that he won’t be able to because of complications from his initial surgery, the tension in his pulmonary artery would likely cause him to not be able to live an active lifestyle.’”
That news shook the parents.
“It made us realize our version of reality may not look the way we had thought it would,” Burns said.
Soni noted with proper surgery and care, most kids born with transposition of the great arteries can lead active lives.
“It is possible, in James’ case in particular, after he had the corrective surgery the arteries to his lungs specifically developed some narrowing and he had to have further surgery for that. And so now that those arteries have been repaired we have to make sure they grow normally as the rest of his body grows,” Soni said, noting he will need to see cardiologists at least once a year as he ages.
But James, a happy kid whose first word was h’ockey,’ defied his parents’ fears, taking to the ice on a recent weekend at the Rink Hockey Academy along with a group of other four-and-five-year-olds, telling knock-knock jokes about his favourite Winnipeg Jets player Connor Hellebuyck.
“It’s the most incredible feeling ever, every time I dress him in his gear it feels like I’m living a dream, because this is something I wasn’t sure was going to be an option for him, and the fact that our care team has been so supportive of his interests, you put any sort of sports equipment in his hands and he instantly figures it out within a few minutes and he’s obsessed,” Burns said.
James hopes to be a goalie.