A treatable, genetic heart disorder has killed hundreds of young people across Canada because the warning signs often go unnoticed and the symptoms are misdiagnosed, experts say.
Sudden Cardiac Death (SCD) occurs when exercise, a sudden exertion or even a startling noise causes the heart to stop.
While the exact number of cases of SCD in North America are not known, conservative estimates range from 0.8 to 6.2 cases per 100,000 children and adolescents per year.
"It strikes them down with absolutely no warning and these are particularly tragic because no one saw them coming," Dr. Chris Simpson, medical director of the cardiac program at Kingston General Hospital, told Â鶹´«Ã½.
Experts estimate that as many as 50 per cent of young people afflicted with SCD exhibited symptoms of the condition prior to their death. Signs and symptoms include:
- fainting or seizure during physical activity
- fainting or seizure due to emotional excitement or distress, or from being startled
- a family history of unexpected sudden death during exercise or a seizure
- family history of unexplained sudden death of an otherwise healthy young person
Anyone with these symptoms should see a cardiologist for a cardiac assessment, Simpson said.
'Haunts me every day'
Sixteen-year-old Taylor Allan would get dizzy and have fainting spells during her soccer or basketball games. But her family didn't think they pointed to a severe medical problem until she suddenly collapsed and died.
Doctors later discovered that she had a genetic heart disorder.
"It haunts me every day to think I could have been able to do more had I been better educated," Taylor's father, Ken, told Â鶹´«Ã½.
The most common causes of sudden cardiac death include:
- hypertrophic cardiomyopathy (HMC), a progressive condition that eventually may cause a fatal arrhythmia
- congenital heart defects
- inherited cardiac rhythm disorders, such as Long QT Syndrome, ARVC, CPVT and Brugada Syndrome
A heart disorder went undetected in 19-year-old Mickey Renaud, a star hockey player with the Windsor Spitfires. He collapsed in his family's home and later died.
Pam Husband, executive director of the Canadian Sudden Arrhythmia Death Syndromes Foundation (SADS), said that because the signs are under-recognized, children are dying unnecessarily, like her 16-year-old son Greg.
Husband says Canada should follow Italy's example. There, young athletes are screened for heart problems, and rates of sudden deaths have dropped by nearly 90 per cent.
"Most of these disorders can be treated in a way that children can live a relatively normal life," Husband told Â鶹´«Ã½.
The heart disorders that cause SCD can be treated with medication or surgery if they are detected. However, experts said there aren't any plans for a widespread testing program.
SADS also advocates for defibrillators to be placed in elementary and high schools across the country to treat children who collapse at school from sudden cardiac arrest.
Simpson said that families and coaches also need to be better at spotting the warning signs so children can get assessed and treated.
"If you faint during exercise you should seek medical attention and not just dismiss it," Simpson said. "If everybody were to adhere to those rules we would save many lives of young kids and adults."
The Canadian SADS Foundation can be reached at 877-525-5995 or at the website on the right-hand side of the page.
With a report from CTV medical specialist Avis Favaro and senior producer Elizabeth St. Philip
