Sept. 4, 2010, began like any weekday for Christy Silva. As she went about her daily routine, her sons rode their bikes and played in the backyard of their Downingtown home, tagging along with her later when she ran errands.
That afternoon, without warning, 7-year-old Aidan collapsed in the hallway upstairs. Silva had been helping 5-year-old Devin change his clothes while Aidan worked on a puzzle. By the time she got to her son, he was lying unresponsive on the floor. Her attempts to revive him with CPR proved futile. The ambulance arrived 10 minutes later, but Aidan couldn’t be saved.
“A neighbor came over as we were waiting for the EMTs to come, and she said, ‘He’s probably having a seizure,’” says Silva. “I wanted to hold on to that possibility, because I knew seizures weren’t life-threatening.”
Aidan was a victim of sudden cardiac arrest. But children’s young hearts aren’t supposed to just stop beating. Five weeks prior, Aidan’s pediatrician had given him a clean bill of health, and Silva had no reason to doubt that he was right.
Insidiously abrupt, SCA strikes without warning, killing more than 2,000 kids annually. It happens when the heart muscle doesn’t get enough oxygen, triggering a lethal arrhythmia. It may involve structural abnormalities in the heart. Genetics could also play a role.
The Silvas have no history of heart disease in their family, and an autopsy revealed that Aidan’s heart was structurally fine. Months later, they also learned there were no genetic links. One theory was that Aidan had contracted a virus that damaged his heart cells, making them less elastic. “For whatever reason, on that day at that time, Aidan’s heart rhythm got crazy,” says Silva.
It seems so baffling, so unfair. “We heard from more than one doctor who said, ‘Unfortunately, sometimes this just happens. We don’t know why, but it does,’” says Silva. “The hearts of kids thought to be perfectly healthy suddenly stop. It’s rare, but it happens.’”
Such explanations bring little comfort to parents who’ve just lost a child to SCA. As for the Silvas, they’ve turned proactive, getting involved with Parent Heart Watch, a national network of families dedicated to reducing the incidence of SCA in kids.
Through PHW, the Silvas met other families who’d endured the same tragedy. Many lost teenagers or even young adults. “Through talking to them, we came to realize how the heart health of children is so underserved in our country,” says Silva. “And there’s no good reason why that’s so. We check their ears, we check their eyes, but we don’t check their hearts.”
And that’s also not good enough for Darren and Phyllis Sudman, the Plymouth Meeting couple behind Simon’s Fund, an organization started in 2005 to raise awareness about SCA and other causes of sudden death in children. Their 3-month-old son, Simon, died from SCA while he was taking a nap. Unbeknownst to them, Simon had a heart defect known as Long QT syndrome that went undetected. The Sudmans’ goal: Make heart screenings standard for kids. Until that happens, their foundation provides free screenings throughout the region.
Since Simon’s Fund was founded, more than 4,700 young hearts have been screened, 43 of which had potentially life-threatening abnormalities. Radnor’s Drew Harrington was among those. At the screening, it was determined that he had a condition called Wolff-Parkinson-White syndrome, caused by an additional electrical pathway in the heart that prompts excessive heartbeats. A procedure corrected the abnormality. “Our research has shown that one in about 100 children we screen will have something that could potentially be lethal,” says Darren. “Screenings are crucial to the lives and health of our children.”
This past spring, Simon’s Fund experienced a major breakthrough with the passing of the Sudden Cardiac Arrest Prevention Act (Act 59). “I saw the advancement that concussion legislation in athletes was making, and I hoped that, if lawmakers were willing to protect heads, they’d be willing to protect hearts,” says Darren.
After meeting with 12 lawmakers in Harrisburg, Norristown-based state Rep. Mike Vereb introduced the bill. A little more than a year later, it was signed into law, making Pennsylvania the first state to require that coaches, athletes and their families be educated about the warning signs of SCA. As part of the law, coaches must remove any player with SCA symptoms from competition, and the young athlete can’t return until cleared by a licensed medical professional. “I want to see a version of the SCA Prevention Act passed in every state,” Darren says.
For babies, young children and non-athletes, there’s still debate over whether or not screenings and electrocardiograms should be part of standard care. Some medical professionals contend that it could lead to overtesting, plus a high rate of false positives and false negatives. Others support screenings and EKGs, as long as they’re performed by specialists in pediatric cardiology. “Darren is going about saving lives in the right way,” says Dr. David Shipon, a cardiologist at the Heart Center of Philadelphia who’s also on the board of directors at Simon’s Fund. “They’re performing the screenings the right way, with experts in the field. At a lot of these screenings, we also bring in an ultrasound of the heart—an echocardiogram—if the doctor sees something that could be a potential problem. I’d want my child to have access to these screenings.”
Right now, the Sudmans have a waiting list of schools requesting screenings at their locations. Since Aidan’s death, the Silvas now have an automated external defibrillator in their home, and they’re working to ensure that AEDs are available in sports facilities and schools. (In Pennsylvania, you’ll only find them is in nursing homes.)
The Silvas are making serious progress in East Brandywine Township. “Our community has been great,” says Christy Silva. “Everyone sees how critical it is that we’re prepared.”
But the technology is no good unless parents and teachers are trained in its use. They also need to know how to administer CPR and be well versed in the warning signs of SCA. “If your child has excessive shortness of breath, or fluttering or heart palpitations, or chest pain that comes on with exercise—these are all signs,” says Shipon. “If, with exercise, they feel dizzy—like they’re going to pass out—or if they ever do pass out, they should be screened.”
In June 2013, the Silva family will honor Aidan in the same way they have for the past two years since his death—with the 5K for Aidan J. Money raised goes to organizations like Simon’s Fund. “This is a life-or-death situation,” says Christy. “And we don’t want other children to be lost.”
To learn more, visit simonsfund.org.