Courtesy Darren and Phyllis Sudman
Phyllis and Darren Sudman brought their second child, Simon, home from the hospital in the fall of 2004. Everything was going along as smoothly as is possible with a newborn and a two-year-old—their daughter Sally. Like all new parents, the Philadelphia couple was busy trying to get Simon on a regular sleep schedule and encouraging Sally to bond with her new brother. Everything was going well—until the unimaginable happened.
“It was an exciting time,” Phyllis recalls. Simon was a healthy baby boy who scored high on the APGAR scale. (APGAR stands for “Appearance, Pulse, Grimace, Activity, and Respiration” and is used to assess newborn health. The higher the APGAR score, the better the baby is doing.) “There were really no issues.”
And then, at four months, Simon died in his sleep. Doctors believed the cause to be SIDS (sudden infant death syndrome), but the couple’s pediatrician told them to get their hearts checked. That’s when Phyllis learned she had long QT syndrome, a genetic heart condition marked by fast, chaotic heartbeats; it has been linked to up to 15 percent of all sudden infant deaths. Phyllis had no idea she had the condition because she had never experienced any symptoms. Research suggests that having your baby sleep like this can reduce the risk of SIDS.
“Once I was diagnosed, we knew we needed to do something more to make sure no other family had to go through what we did,” she says. The Sudman’s did something incredible: They founded Simon’s Heart, an organization that has since saved countless lives by raising awareness of sudden cardiac death, funding close to 19,000 free heart screenings (and counting) and providing 100 automatic external defibrillators (AEDs) in places where kids learn and play. AEDs can save someone in cardiac arrest by resetting the chaotic electrical activity in the heart—that’s why it’s crucial to know where the AED is at your gym. Basketball gyms may have the greatest need for these devices: A recent study found that the majority of sudden deaths in youth sports were heart-related and occurred most often in middle-school basketball players.
Courtesy Darren and Phyllis Sudman
The group has been behind the passage of legislation known as Sudden Cardiac Arrest Prevention Act in 14 states—it encourages education on sudden cardiac arrest for students, athletes, parents, and coaches. Simon’s Heart also created Heartbytes, the first-ever youth heart digital registry of kids—their heart screenings, medical screenings, family history, and more—which researchers can tap for study data. So far, this data has been the basis of four studies presented at major medical conferences, and it’s helping change the standard of care. The Sudmans also created a crowd-funding platform to help youth facilities get AED devices.
The Sudmans and Simon’s Heart have even bigger goals: They’re hoping to change the standard of care for diagnosing newborns and young adults with conditions that can lead to sudden cardiac arrest and death. In the United States, children get a pulse oximetry exam at birth to check their blood oxygen level. This can reveal a congenital heart defect. After that, the doctor will listen to a newborn’s heart with a stethoscope, but research shows that a fuller heart screening—family history, physical exam, and a non-invasive measure of the heart’s electrical activity (ECG)—is much more effective at detecting heart conditions and preventing sudden cardiac arrest than just listening to the heart.
Steven A. Shapiro, DO, the Chair of Pediatrics at Abington Hospital-Jefferson Health in Abington, PA. has been involved with Simon’s Heart since the Sudman’s launched it. “If a baby dies of SIDS then mom, dad, and siblings should all get their hearts checked,” he says. There aren’t always warning signs, he says. The two most common risk factors are fainting during or after exercise and the sudden death of family member under the age of 50.
“The Sudmans could have crawled under a rock after Simon died and nobody would have blamed them, but instead they wanted Simon’s legacy to be that no other family goes through what they went through,” he says. “The legacy of Simon is to lessen the likelihood of a sudden cardiac event in childhood or young adulthood.” Just in case there isn’t an AED available, make sure you know how to perform CPR to help keep someone alive.