When the Rhythm Goes Wrong
From Maclean's Magazine
Issue: July 7, 2008
by: Cathy Gulli
When the rythym goes wrong,
A genetic heart disorder is killing young people — and going undetected
"I'm zooming," said Taylor Allan, getting into the hot tub, using the slang word for dizzy. It was a Saturday night in late April, and she and her friends were hanging out in the backyard of a parent's house just outside of Kingston, Ont. Taylor, a tall, strawberry-blond 16-year-old, suggested that in between dips they jump on the trampoline. She wanted to warm up in the water first, though. But as soon as Taylor started to step into the tub, she became light-headed. Seconds later, she collapsed onto the ground.
At first her friends thought she was joking, but they quickly realized this was serious. They carried Taylor inside, onto a couch and called 911. They couldn't feel a pulse. Frantic, her friends and then paramedics tried to resuscitate her. She was sped to emergency, where doctors and nurses pumped her chest but only got a few flutters. They ushered Taylor's father, Ken Allan, who had been called to the hospital, into the operating room to see if the sound of his voice would make any difference. "Taylor, it's Dad. I know you can hear me. Breathe, honey, breathe," he yelled at her. The medical team, in tears by now, worked for over an hour, but Ken only lasted 20 minutes in there. "I didn't have to be a coroner to know that she was already gone."
Ken Allan, a straight-talking senior officer with the Correctional Service of Canada, in charge of the drug detector dog program, was stunned and desperate for an explanation. "Brain aneurysm, that's what I was thinking," he says now. The family were notified within a day or so that a cause of death couldn't be found. The coroner reported he had to assume foul play. Taylor's body was then taken by police escort to Toronto's Hospital for Sick Children for analysis. "I was numb," Allan says of the ordeal. "I wanted to go with them," but he couldn't. "This is a police investigation. We prefer you not to come," he recalls the cops telling him.
Within the day, the Allans got a call from the head of cardiology in Kingston, Dr. Chris Simpson, saying that foul play was not, in fact, the cause of death. So what, then? Taylor, it was discovered, had arrhythmogenic right ventricular cardiomyopathy. Ken Allan was even more confused. "When I learned it was ARVC I felt pretty much [like], 'What the hell is that?' "
He isn't the first grieving parent with that question. More than 1,400 families across the country affected by genetic heart rhythm disorders such as ARVC are listed with the Canadian Sudden Arrhythmia Death Syndromes (SADS) Foundation, which promotes awareness. Heart arrhythmias aren't uncommon. At least one in 300 people may have some type of heart rhythm disorder, says Dr. Joel Kirsh, a pediatric cardiologist at Sick Kids. As many as one in 2,000 people have ARVC, which causes muscle cells in the heart to deteriorate. Eventually, the heart becomes fatty, fibrous, weak and scarred, especially on the right side.
Like most genetic heart rhythm problems, the irony of ARVC is that it often affects otherwise healthy, young athletes. Taylor played just about every sport. "One of the most compelling things about this story is that it's not unique," says Pam Husband, director of SADS, which is based in Mississauga, Ont. "Unfortunately, situations like that of the Allan family go on regularly. Kids are slipping through the cracks."
One of the biggest reasons, experts say, is because disorders such as ARVC go undetected. The symptoms — fainting when experiencing physical activity, emotional distress when startled, or seizures and heart palpitations — are often ignored or misdiagnosed.