Darren and Phyllis Sudman channeled love and grief for the son they lost into a children’s health crusade, but when they reflect on how quickly they raised $1 million and passed the nation’s first law to protect youth athletes’ hearts, the Plymouth Meeting couple credit business know-how honed during years at corporations like AOL.
After the couple’s 12-week-old, Simon, died in his sleep in 2005, the Sudmans discovered that both mother and son suffered from a heart defect called Long QT Syndrome. Medical experts suspect that up to 30 percent of all infant deaths classified as SIDS actually stem from cardiac conditions easily detectable with an inexpensive, noninvasive test like an EKG.
"Others react emotionally," Darren says, "but we took a strategic approach" to establishing the nonprofit, Simon’s Fund. "We did due diligence, we set up a medical advisory board."
In short order, the group donated $12,000 EKG machines and funded research at Children’s Hospital of Philadelphia. Free heart screenings held in schools across the region have tested 3,800 kids, saving 38 lives. As the Sudmans contemplated how best to direct money and momentum, they learned sudden cardiac arrest is the No. 1 killer of student athletes.
"At AOL, we used to talk about low-hanging fruit," explains Darren. "Thirty-five hundred babies die a year of SIDS, but student athletes is what gets people talking, got us traction."
And so, 13 months ago, the Sudmans began visiting legislators with a bipartisan, cost-neutral, hard-to-oppose, kid-friendly pitch:
"If you’re willing to protect their heads, you should be willing to protect their hearts."
A silent killer
Norwegian Olympic swimming hopeful Dale Oen died in May of sudden cardiac arrest. In the fall, two Philadelphia Marathon runners — one an experienced triathlete — collapsed near the finish line. A half-dozen Pennsylvania teenage jocks suffered the same fate.
State Rep. Tim Briggs (D., Montgomery) sponsored the 2011 Safety in Youth Sports Act, which requires students suffering a concussion to be sidelined until cleared by a doctor. Inspired, the Sudmans drafted a nearly identical bill — "we just changed nouns" from brains to hearts. Then they began lobbying politicians.
"We have no real idea how many kids are dying of [sudden cardiac arrest]," Phyllis recalls telling officials as she showed a PowerPoint presentation about how spotting the symptoms could spare more families suffering.
Thinking like business execs who knew their client, the commonwealth, was basically broke, the couple played up the bill’s main selling point: It’s essentially free.
Changing the conversation
State Rep. Mike Vereb (R., Montgomery) played football and ran track at Bishop Kenrick. A father of three, he has teenage athletes he worries about every time they take the field.
Vereb eagerly championed the Sudmans’ cause with a bill that requires training in the signs of cardiac distress — fainting, chest pain, dizziness, shortness of breath — and coaches to pull players from a game or practice.
"Gatorade and smelling salts," he insists, "are not medical answers."
Now that Pennsylvania finds itself in the rare position of leading the nation on sudden cardiac arrest — "usually," Vereb jokes, "we’re first to screw something up" — the legislator will join the Sudmans in urging pols in other states to follow suit.
"We need to make [sudden cardiac arrest] a household conversation," he says. "With a concussion, there’s always a ‘Wow’ or an ‘Oh!’ when a child gets hit. When [sudden cardiac arrest] shows up, it’s often fatal and the field is awfully silent."
The Sudmans savored last week’s success with their 9-year-old daughter, Sally (who will be monitored through her teens), and Jaden, 5, who got tested the moment they adopted him in Guatemala. They feel relief every time a heart test reveals a hidden killer lurking inside a child but must contend with guilt when medical knowledge derails a family’s plans.
"We had one wrestler with a college scholarship get disqualified from sports after being diagnosed at one of our screenings," Darren recalls. The young man’s mother was furious. "Here we were, thinking we were doing good and making parents happy. We felt awful."
Get information about sudden cardiac arrest at simonsfund.org.
Watch a video of the founders of Simon’s Fund talk about Sudden Cardiac Arrest (SCA) with Pennsylvania Rep. Mike Vereb, http://www.philly.com/philly/video/156355715.html.