Submitted by SCAFoundation on Sun, 10/27/2013 - 12:00am

PHILADELPHIA, PA--How many children drop dead every year of sudden cardiac arrest? One thousand? Three thousand?  

"We don't know," said Victoria Vetter, a pediatric cardiologist at Children's Hospital of Philadelphia. "The problem is we don't have a registry in the U.S."

The federal government last week said it will help develop a pediatric registry for sudden deaths. To better determine who is at risk of dying, from which cardiac disorder, a local group is also planning a database with results of electrocardiograms (EKGs) and other records for researchers.

When Vetter's team took histories and gave physicals and EKGs to thousands of city school athletes - athletes are at least twice as likely to die of sudden cardiac arrest - they found one in 150 with serious abnormalities, although she says she expects that early number to drop to between one in 250 and one in 500.

Many abnormalities are potentially fatal. Most are treatable. Some are genetic; when the extended family is then screened, several other cases are typically found.

At Abington Memorial Hospital, pediatrics chief Steven Shapiro is overseeing the screening of every baby. He is studying how to make EKGs reliable and cost-effective on a broad scale. But changing policy to make screening mandatory would require proof that the heart conditions are common enough to be worth the effort and that screening will improve outcomes.

So former AOL executive Darren Sudman is developing a database for records of voluntary screenings - both Vetter and Shapiro have worked with him - that researchers could use to better estimate rates of pediatric heart conditions.

It is the latest project of Simon's Fund, which Darren and Phyllis Sudman founded after their 14-month-old son died of sudden cardiac arrest in 2005. Searching for why, Phyllis learned from an EKG that she had undiagnosed long QT syndrome, an electrical disturbance that posed a risk to her life as well.

Winning support for mandatory screenings, which would cost millions of dollars just for athletes, would be an uphill battle. David Shipon, chief medical officer for Simon's Fund and a preventive cardiologist at Thomas Jefferson University Hospital, cites statistics from Italy, which in 1982 mandated screenings for athletes ages 12 to 35. Sudden cardiac deaths dropped 90 percent over two decades, ending up at half the rate of that for non-athletes, which was unchanged.

Barry Maron, chair of screening policymaking for the American Heart Association, countered: How many Italian athletes died before the mandate? The answer: Just five a year, a fraction of deaths from car crashes.

Darren Sudman, who created the first Simon's Fund 5-K on Sunday at Plymouth-Whitemarsh High School, is undeterred. "My dream would be to have the staunchest proponent and the staunchest opponent agree," he said.

Check Up: At Risk of Sudden Death?

A "yes" answer to any of these four questions may suggest an elevated risk of sudden cardiac arrest. The child should be seen by a pediatrician; the fourth may require a pediatric cardiologist.

  • Have you ever fainted, passed out, or had a seizure suddenly and without warning, especially during exercise or in response to auditory triggers such as doorbells, alarm clocks, and ringing telephones?
  • Have you ever had chest pain or shortness of breath from exercise?
  • Did any relative die suddenly, without explanation, before age 50?
  • Has any relative been found to have hypertrophic cardiomyopathy (HCM), long QT syndrome (LQTS), Brugada syndrome, or other heart conditions that raise the risk of sudden death?

Source: American Academy of Pediatrics' Sudden Cardiac Arrest policy statement