Sudden Infant Death Syndrome (SIDS) takes the life of more than 2,000 babies in the United States every year. The diagnosis is synonymous with not only unfathomable tragedy, but mystery too; it’s given for any death of a child under 12 months of age for which there is no known cause.
Sudden Cardiac Arrest (SCA) is a leading cause of death among people under 25. It’s also the number one killer of student athletes, mainly basketball players and track stars. Both of these syndromes stop the hearts of young people in the blink of an eye, with seemingly no warning.
When Darren and Phyllis Sudman lost their 7-week-old son Simon, the initial diagnosis was SIDS. But their family physician also insisted the couple have their own hearts checked as soon as possible.
That’s when Phyllis was diagnosed with Long Q-T Syndrome, an arrhythmia. Studies by the Mayo Clinic have shown that Long Q-T is linked to at least 15 percent of SIDS cases, and it’s one of ten conditions that cause SCA in young people. The fact that SCA causes about the same number of deaths annually as SIDS caught the Sudman’s attention.
In the wake of their baby’s death, the couple started Simon’s Heart Foundation. But rather than focus their efforts on newborns, where there’s already a lot of public education and attention on sleep positioning as a way to avoid SIDS, the Sudmans decided to bring focus to older children who die from SCA.
“We decided to enlarge the conversation,” says Darren Sudman, CEO and founder of Simon’s Heart Foundation. He explains they decided to “try to change the policy around the standard of care - getting hearts screened as part of the regular physical exam.”
Simon’s Heart Foundation is dedicated to screening young athletes prior to their participation in sports to search for the structural and electrical abnormalities that might lead to a cardiac event.
Since its establishment in 2005, Simon’s Heart Foundation has raised more than $2 million, and screened more than 17,000 kids across the country.
Until recently, these screenings have been done on weekends, with labor donated by more than 75 cardiologists and dozens of ultrasound technicians. The screenings are done using EKGs and the volunteers’ own stethoscopes.
The organization is now seeking to scale its services to see more kids in urban areas. They will rely less on volunteers and more on school nurses who will record and send heart sounds to cardiologists to analyze later. The Foundation recently reached out to Thinklabs for a digital stethoscope with which to do the recordings so they can do more heart exams and screen more students.
Using the Thinklabs One will add value to the screenings because the doctor will be able to evaluate the sounds while looking at the ECG, along with the student’s chart. “If the nurse hears a problem, the doctor can confirm, and order further tests for the athletes who need an echocardiogram,” Sudman explains.
Of the thousands of teens the Foundation has screened over the past 13 years, 118 have been identified as having one of the ten conditions that can lead to a cardiac event. The Foundation has an ongoing relationship with each of these young people, some of whom have had ablations or surgeries, some of whom have gone on drug therapy to address their condition. All of them are still healthy.
Screening student athletes is just one of the many initiatives of Simon’s Heart Foundation, which also include advocacy, research, education and outreach. Another goal is to educate people about the importance of automated external defibrillators, or AED devices. The Foundation focuses on getting them installed in as many places as possible where they can help kids. The organization has installed more than 85 devices so far, thanks to corporate sponsors such as L’Oreal Paris, GE Healthcare and InfinitiTT North America.
Another major initiative is a national cardiac registry called Heartbytes, which the Foundation created four years ago “to fill the void of cardiac data on children,” Sudman says.
The registry is a rich research archive with thousands of heart sounds - data taken from the kids’ electronic health records, de-identified, and stored in the Cloud. The Heartbytes data are available to qualified researchers around the world via the American Heart Association and American College of Cardiology. Heartbytes have already served as the data source for two major research projects and, according to Sudman, at least two more have been requested.
Another goal of Simon’s Heart Foundation is to advocate for legislation that will help prevent SCA; specifically, the Sudden Cardiac Arrest Prevention Act. Similar to football’s Concussion Safety Act, which requires coaches to watch for signs of brain injury and impairment after impacts to the head and to pull athletes from the field if they exhibit warning signs of concussion, this bill’s objective is to raise awareness among coaches, parents and athletes about SCA and its warning signs. The bill has already passed in 12 states.
Simon Sudman’s heart continues to beat―as his parents’ efforts, and the activities of the Foundation they started in his name, keep other hearts going strong.