The parents of a teenage hockey player who collapsed and died last August are calling on parents to get their children screened.
Sixteen-year-old Jordan Boyd of Bedford, N.S., died after a cardiac arrest caused by an undiagnosed heart condition. Boyd collapsed on the ice at a training camp for the Acadie Bathurst Titan of the Quebec Major Junior Hockey League last August.
His parents say his death highlights the need for greater medical screening for young athletes.
Before joining the Titan, Jordan saw his family doctor for a mandatory physical and filled out a medical questionnaire provided by the league, which included questions about heart health and family history.
Steve Boyd, Jordan’s father, says that doesn't go far enough.
“You may want to consider getting some additional screening done other than the basic medical tests, because obviously they don’t pick up, they’re not a guarantee that everything is all right.”
The league says it’s sticking with the questionnaire.
“This method is approved by a North American consensus of doctors who specialize in this process and is standard practice in the QMJHL," it said in an email to CBC News.
Need for more research
Dr. Martin Gardner, a Halifax cardiologist, is part of a national study of arrhythmogenic right ventricular cardiomyopathy (ARVC), which is the condition Jordan had. Gardner says more research is needed on how best to screen athletes.
"I think we need to do those large studies and find out if there is a good way that we can test people and screen them and find the ones that might get into trouble and do something for them that will save lives," he says.
Most ARVC cases can be detected with an echocardiogram or magnetic resonance imaging (MRI), but not necessarily with the more basic electrocardiogram.
The Boyds say they'd like to see athletes in Canada get an electrocardiogram, at least, even if it means families paying for it themselves. It wouldn't have necessarily caught their son's condition, but if incorporated into sports across the country it would pick up conditions in some athletes.
“The part we’ve discovered is with some additional screening, probably we could have picked up on this and potentially the outcome might be different,” says Steve Boyd.
Hard to detect
Cardiologists are not sure of the prevalence of silent genetic cardiac conditions in Canada. ARVC alone could affect between one in 500 and one in 5,000 people. Some people may have the genetic makeup for it, but never realize they have the condition.
The Boyds did not know their genetic code contained the condition that affected Jordan. Their family history contains no stories of unexpected cardiac arrests. They say Jordan never experienced fainting or blackout spells, which are key warnings of heart problems.
Dr. Saul Isserow, medical director at the Vancouver General Hospital Centre for Cardiovascular Health, is also working on a study screening 2,000 young athletes in British Columbia.
“We are trying to predict exceedingly rare, but devastating, events,” he says. “We want the message to be that sport and exercise is healthy and low risk. The goal is to find out if we can screen and if we can, what the best modalities are to do it.”
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One other screening method to test for heart defects, in addition to the usual cardiac tests, may be genetic testing.
Dr. J. Philip Welch, a medical geneticist in Halifax says genetic screenings are becoming more and more affordable. Currently, genetic evaluations can be performed for between $1,000 and $1,500.
"If someone is carrying the gene, then they are at some risk [of a cardiac arrest] regardless of their age and regardless of their athletic activities. But the athletic activities seem to make it more likely, which is why you get this occurring with young vigorous athletes," he said.
Steve Boyd realizes the implications of pre-participation screening — that some kids may have to withdraw — but to him it's better than not knowing.
"This will identify some kids who are at risk and have cardiac issues that are undetected, and it will cause them to get treatment or withdraw from the sport. But at the end of the day, I think, save their life," he said.
The Boyds say if they had known that such conditions exist, they would have paid for a private screening. It's worth the cost, Debbie Boyd says.
“It doesn’t just have to happen to hockey players. It can be football players, it can be runners, it can be soccer players, it doesn’t matter," she says.
“Jordan really was a great young man. He had grown up so much in the last couple of years and was so focused and he was just a good, kind human being. He was a good person,” says Steve Boyd.
“I had never heard of ARVC before what happened to Jordan happened. It wasn’t even on my radar,” he says. “I think we should be doing all we can to protect our young athletes and our kids.”