The Kids Are All Right
It’s easy to detect a common heart defect in children—if you know how to pass along critical information.
Every few years, a story will emerge that leaves parents with an aching pit in their stomachs. You’ve likely heard it too, about the athletic kid on a football field (or baseball field, or at a waterpark …) who dies suddenly; only after the tragedy is it discovered that the child had an undetected heart condition. In many cases, that condition is revealed to be hypertrophic cardiomyopathy (HCM), the most common of all genetic heart defects, and the leading cause of cardiac death in adolescents and young adults. Its main feature is an excessive thickening of the heart muscle that occurs without an obvious cause.
Steven Sheris, MD, FACC, chief of Cardiology at Overlook Hospital and a member of Associates in Cardiovascular Disease, has heard the story too many times and hopes that no parent ever has to hear it again. He and his colleagues, as well as other members of the healthcare community, are spreading a different story instead—about simple screenings that can shed light on heart defects, and save lives in the process. “When a community loses a child, the loss is devastating,” says Sheris. “But many of these losses can be prevented.”
In this case, prevention begins with attention to detail. “When teenagers have screenings for sports physicals, the focus is orthopedic,” says Sheris. “But as with orthopedics, it’s important to make sure the proper questions are asked about heart health. Kids are going to their pediatrician anyway, and parents should be empowered to ask pediatricians the right questions and provide the correct information.” In fact, a pediatrician should always be alerted to issues in family health history, including inheritable heart conditions, unexplained loss of consciousness, or an unexplained death in family (particularly at a young age).
New Jersey native Lisa Salberg understands firsthand the importance of sharing critical health information. In fact, she has spent her lifetime managing, coping with, and crusading against HCM. She herself was diagnosed with the disease at age 12 after a heart murmur was detected during a school physical. At age 21, she suffered a stroke secondary to HCM; a few years later, she received her first implantable cardiac defibrillator—the only true protection against cardiac arrest. And she has watched as one family member after another—a grandfather, a great aunt, an uncle, and even her sister—died from complications owing to HCM. Salberg’s father, niece, daughter, and other family members continue to cope with the disease, as she does.
For the past 14 years, Salberg has headed up the Hypertrophic Cardiomyopathy Association (www.4hcm.org), a not-for-profit 501(c)(3) organization that provides information, support, and advocacy to patients, their families, and medical providers. Salberg explains that HCM is a complicated disease process. There is no particular symptom or complaint unique to HCM, and symptoms may occur at any stage in a person’s life even though the condition may have been present for some time. Many people don’t even realize they are experiencing symptoms, which may include shortness of breath, chest pain, heart palpitations, lightheadedness, and blackouts.
“If you’re in a family with someone diagnosed with HCM, make sure all relatives are screened for HCM,” she says. “Even if a child looks healthy, the child should be checked out.” And it’s not screening and diagnostic testing alone that are crucial, but who interprets these things. That’s why it’s important to consult a physician well versed in the nuances of HCM, and that’s why Salberg says it’s further important for her organization to continue educating doctors and patients. “I look totally healthy,” she says. “I don’t consider myself sick. I have a chronic illness that I manage. The only problem with my disease is that it could kill you—literally, heartbeat to heartbeat.”