Simon Sudman was seven weeks old when he smiled his toothless grin for the first time. With a button nose, chubby cheeks and a double chin, he cooed up at his parents, who delighted in their new—seemingly healthy—son. But 47 days later, Simon was dead.
“He just…never woke up from his nap,” recalls Simon’s mother, Phyllis Sudman.
Initially, Simon’s death was blamed on Sudden Infant Death Syndrome. But at the urging of Simon’s pediatrician and coroner, Phyllis and her husband, Darren, had their hearts tested. Phyllis was diagnosed with Long QT Syndrome, a genetic arrhythmia that she passed on to Simon. The arrhythmia caused Simon’s heart to stop in his sleep.
“Our goal is to change standard of care in medicine so kids get their heart screened,” says Darren. “That’s not going to happen unless there’s data researchers can use to prove these screenings find heart conditions.”
Knowing what caused Simon’s death did not make losing him any easier—but it did inspire the Sudmans to try to spare other parents from the same pain. In 2005, they founded Simon’s Fund, a nonprofit dedicated to detection, education and innovation around the conditions that lead to sudden cardiac arrest and death in young athletes and children. So far, Simon’s Fund—created with $20,000 raised from family and friends—has screened 10,000 children, identifying 100 who had previously undiagnosed heart conditions.
The Sudmans have taken the issue to Harrisburg, as well. After Darren saw the success of a youth sports concussion law in Pennsylvania, he realized it could be simply modified to include information about sudden cardiac arrest. After 14 months of lobbying work, including a dinner in Harrisburg with 12 lawmakers, “we had a law,” Darren says.
The Sudden Cardiac Arrest Prevention Act requires parents of student athletes to sign a form at the beginning of each season indicating that they understand the symptoms of heart conditions, and requires coaches to watch a video about heart condition symptoms. Similar laws have passed in New Jersey, Indiana, Connecticut, Maryland and Delaware. Darren says he hopes to work with Tennessee, Georgia, North Carolina and Ohio on passing similar laws in the next year.
Now Simon’s Fund is developing HeartBytes, the first national cardiac registry to maintain electrocardiograms (EKGs) and other records so that medical researchers can begin to understand sudden cardiac arrest in youths. It will also provide scientific data to support the organization’s assertion that early and regular heart screenings should be standard care for infants and children. While each newborn undergoes tests after birth, a heart screening is not part of that roster of tests. The Sudmans want it to be.
“Our goal is to change standard of care in medicine so kids get their heart screened,” says Darren. “That’s not going to happen unless there’s data researchers can use to prove these screenings find heart conditions.”
Two years ago, Darren left a job in finance at MultiFunding, which advises small business owners on their loan options, to manage Simon’s Fund full-time. Phyllis, who is Director of Client Service for eBay Enterprise, this fall received the prestigious L’Oreal Woman of Worth award for her charitable efforts and perseverance in making a difference in her community. The award comes with $10,000, which she is investing in Simon’s Fund.
“It’s a great feeling to know that we’ve been able to do what we set out to do, which is to raise awareness so that other parents are smarter than we were,” Darren says.
