NEWSWORKS TONIGHT

Sudden cardiac arrest is responsible for about one in five sudden deaths in kids, and the percentage grows as children enter adolescence.

Those statistics took on a painfully personal meaning for Phyllis Sudman six years ago when her infant son, Simon, died.

"We were putting him down for a nap and he simply never woke up," Sudman said.

After getting her heart tested, the Plymouth Meeting mother discovered she has a rare congenital heart condition called long QT syndrome.

"Had we known that I had long QT then Simon probably would be with us today," Sudman said. "As you can imagine, it's a parent's worst nightmare. And we don't want another family to go through what we've been through."

Now, Sudman and her husband, Darren, are on a crusade to reduce deaths from sudden cardiac arrest. In 2005, propelled by their grief, the couple established Simon's Fund, a nonprofit that organizes free heart screenings for students in the Philadelphia area.

At one of those screenings in Radnor, Sudman acted as field marshal in a high school gym, directing parents and school-aged kids to curtained-off areas where medical assistants ran electrocardiograms or EKGs that record the heart's electrical activity. On-site cardiologists looked for abnormalities in the heart beat that may be an indication of defects.

Since the foundation's inception, Sudman said it has screened more than 3,000 kids and caught more than 30 potentially fatal heart defects.

Andrew Kalan said bringing his two sons to the event was a no-brainer.

"It's 15 minutes, it's free," Kalan said. "If there's a possibility of catching something that might have gone completely undetected, why not? Knowledge is better than just being ignorant."

Widespread screening controversial

Many doctors say these local, voluntary screening efforts may be beneficial, if conducted properly, but a national EKG screening program is a controversial matter.  Routine screenings are not recommended by the American Heart Association or the American College of Cardiology, even for student athletes, who are more at risk. The debate is brought up anew whenever a young athlete dies on the field.

"There's nothing that grabs the attention of the layperson more than when somebody sees an athlete, who our society would view the healthiest segment of society, drop dead during sports," said Dr. Martin Maron, a Boston cardiologist who helped write the American Heart Association's guidelines on pre-participation screening for athletes back in 2007.

Cost-benefit analyses are at the center of any screening debate, from prostate cancer to heart disease. Maron said in this case, the science just isn't there to recommend it for something that kills between 60 and 80 young athletes per year.

"We're not being insensitive to the fact that each one of those lives is obviously a tremendous loss," Maron said, "although relatively speaking, as a public health problem, it's a low event-rate issue."

There are also worries of false-positives and of false-negatives--Maron said the second most common cause of exercise-related sudden cardiac death in young athletes is anatomical, not electrical, so it does not show up on EKGs. Hearts also change throughout childhood and adolescence, so one test would not be enough for a clean bill of health through adulthood.

Those pushing for across-the-board EKGs point to successful programs in Europe, as well as a recent study showing that, at about $90 a test, screening athletes may be within the accepted range of cost-effectiveness for screening programs.

Their wish: Get kids tested

Local doctors are using data gathered at Sudman's screenings to build the case for making them more widespread. But for now, Phyllis Sudman will continue to encourage parents to get their kids tested on their own.

"If we had one wish, that's what we're trying to do," Sudman said. "We want to really raise awareness and help parents understand the importance of getting your kid's heart checked."

Sudman and her husband are also behind a bill that would require any student athlete in Pennsylvania who showed symptoms of sudden cardiac arrest to be cleared by a doctor before being allowed back in a game or practice.

The bill unanimously passed in the Pennsylvania House this month.