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New Strategy Saving Those With Genetic Heart Disease

BOSTON (CBS) - We've all heard the tragic tales of teens and young adults collapsing while playing sports from a rare heart condition. Now, a father-son team in Boston has developed a strategy to save those patients most at risk.

"It was devastating."  Kevin Whelan recalled the moment he learned his oldest brother, Kyle, collapsed and died. He was only 26 years old.

Kyle had hypertrophic cardiomyopathy, or HCM, a genetic disease of the heart and the most common cause of sudden death in otherwise healthy young people.

But Kyle wasn't the only one in the family with it.  His father and all three sons had HCM, including Kevin. "After Kyle died, I was wondering when was my event," remembered

Dr. Martin Maron checks Kyle Whelan. (WBZ-TV)

Searching for answers, the Whelan family found doctors Barry and Martin Maron, a father-son team of cardiologists at Tufts Medical Center in Boston who had developed the "sudden cardiac death prevention strategy."

"The best way to attack this problem of sudden death is to pick out the patients who are most likely to have sudden death and use the defibrillator selectively in those patients," explained Dr. Barry Maron.

Using a patient's history, physical exam and special imaging, they can now determine with near certainty who needs a defibrillator and who does not.

"We really have been able to reduce sudden death in this disease to almost zero," said Dr. Martin Maron.

In a new study in JAMA Cardiology, over a 17-year period, 82 patients with HCM who received defibrillators based on the strategy experienced a lethal heart rhythm and were shocked back to life.

"Had the device not been in place for those 82 patients they may have suffered a catastrophic death event," Dr. Martin Maron said.

Based on the doctors' recommendation, Kevin received a defibrillator.  Then, several years ago, at the age of 24, while jogging on Cape Cod, Kevin started to feel lightheaded and he collapsed.

"Within 40 secs of being passed out, it delivered therapy and saved my life," said Kevin.

Kevin, his surviving brother, and his father all have defibrillators now, but Kevin often thinks his brother Kyle could have been saved had he gotten the same advice.

"I just go through life and try and carry on a life that my brother otherwise cannot anymore," said Kevin.

The Marons say this strategy can also be applied to children and teens with HCM and hope it will be adopted by other medical centers in an effort to save lives all over the world.

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