It’s a Rare Occurrence . . . Until

Following the death of Jeffrey Lee in the Philadelphia Marathon, we sent this Op Ed to the Inquirer.  You can read it below or see it on their website.

‘It’s a rare occurrence.” That’s a comforting notion until it happens to your child.

Our child, Simon, was 3 months old and taking a nap when he died suddenly. The Lees’ son, Jeffrey, was a University of Pennsylvania senior running the Philadelphia Marathon last weekend. Despite these differences, we now share a stark reality: We’ll always wonder what our boys would have been when they grew up.

Every year, thousands of children and young adults drop dead from sudden cardiac arrest. They are sleeping in their cribs. They are swimming with friends. They are driving a car. They are playing a sport.

Their deaths are often chalked up to sudden infant death syndrome, drowning, fatal auto accidents, or dehydration. Simon’s death was attributed to SIDS. But through independent research and education, we discovered that he actually died from long QT syndrome, a hereditary heart arrhythmia that is responsible for 30 percent of all unexplained sudden infant deaths, according to research by the Mayo Clinic.

Sudden cardiac arrest is a leading cause of death among American adults and student athletes. The conditions that lead to it are detectable and treatable, making these deaths very preventable. So why aren’t we checking young hearts and saving lives?

We screen our kids at birth – and often in utero – for dozens of rare genetic conditions. At school, they get their eyes examined and their hearing checked.

However, the heart, arguably the most important organ in the body, is never screened. Even though a painless electrocardiogram, or EKG – which takes about 30 seconds and costs about $15 – can detect up to 85 percent of the conditions that lead to sudden cardiac arrest and death, our children’s hearts go unchecked.

In the 1980s, Italy started screening the hearts of all school-aged children. As a result, it has reduced the incidence of death from sudden cardiac arrest among children by 89 percent.

Our organization, Simon’s Fund, and others around the United States are providing free heart screenings to tens of thousands of students every year. We are finding that one of every 100 students we screen has an undetected and potentially fatal heart condition. That’s not very rare.

Deaths during marathons may be unusual, but this isn’t just about marathon runners. It is about Akhir Frazier, a Philadelphia high school student who died suddenly while playing basketball last year. It is about Samuel Gitt, a high school football player who died suddenly at a football camp in central Pennsylvania a few months ago. It is about Aidan Silva, an elementary school student from Downingtown who died suddenly last year while playing with his brother. And it’s about thousands of other kids.

It’s time to stop pretending that sudden cardiac arrest in children is rare. It’s time to acknowledge that prevention is possible and cost-effective. And it’s time to start using our heads to protect our kids’ hearts.

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