Lisa Salberg has lost eight family members to sudden cardiac arrest (SCA) and other heart ailments—and now works to save the lives of others. The New Jersey mom’s advocacy has led to a new law in her state to help identify student athletes at risk for SCA, which kills more than 350,000 Americans a year, according to the Heart Rhythm Society.
Salberg was only 12 when she learned her own life was in danger. “A cardiologist diagnosed me with a heart murmur and said I could drop dead at any moment,” she recalls. The doctor’s grim prediction almost came true: Salberg suffered a near-fatal stroke when she was 21, shortly after her honeymoon.
Tragedy struck again when she was 26 and pregnant with her first child. “Soon after giving me a baby shower, my 36-year-old sister died from sudden cardiac arrest,” recalls Salberg, who ended up with custody of her sister’s kids, then ages 13 and 10, then gave birth to a daughter.
“I was devastated at losing my sister, but I thought, ‘I need to be there for those kids,’” says the young mom, who had been told by the cardiologist that there was nothing she could do about the inherited condition that had also killed her grandfather, uncle and great aunt: hypertrophic cardiomyopathy (HCM).
Salberg made it her mission to learn all she could about sudden cardiac arrest and how to prevent it. In 1996, she founded the Hypertrophic Cardiomyopathy Association, which offers the latest science, patient resources, advocacy, and a free survey to help tell if you or your child might be at risk for sudden cardiac arrest.
Salberg’s group has worked with more than 5,000 families affected by HCM, in 45 countries. She also testified for a 2007 task force report, which led to New Jersey legislation passed in 2012 called “Janet’s Law,” named after an 11-year-old girl who collapsed and died from SCA.
The law mandates that schools have an emergency action plan for responding to sudden cardiac arrests and that school officials and coaches be trained on how to use an automated external defibrillator. Earlier this year, the state also passed a law requiring pre-participation cardiac assessment exams for all student athletes.
However, the mom warns that sports safety isn’t the only concern hazard. “It’s a myth that only athletes are at risk for sudden cardiac arrest. About 80 percent of kids who die under age 24 are not athletes. Per 100 million people, 19 die in fires, 137 from gun violence, 345 from SCA. Yet we have fire drills and armed invader drills in schools, but no sudden cardiac arrest drills.”
New Jersey now has legislation pending to include cardiac arrest risk assessments in all well-child checkups for kids ages one to 19.
HCM, which affects up to 1.5 million Americans, is a disease that causes the heart muscles (particularly in the ventricles) to become abnormally thick (hypertrophic), which can create narrowing that blocks or reduces blood flow to aorta.
Several genetic defects can trigger it, but it can also occur for unknown reasons, says Harry Lever, MD, medical director of the Cleveland Clinic’s Hypertrophic Cardiomyopathy Clinic. “Typically people with these genetic mutations are healthy at birth and in some of them, the disease never manifests. In most cases, when it does, the disease develops during or after puberty.”
HCM ranks as the leading cause of sudden cardiac death in people under 30, according to the Cleveland Clinic. Tragically, a common initial symptom of HCM can be sudden collapse that is often fatal without immediate treatment, such as hands-only CPR or a shock from a defibrillator.
Overall, an estimated 95 percent of people who go into sudden cardiac arrest die before they reach a hospital or another source of emergency help, reports the Heart Rhythm Society. SCA kills more Americans each year than do breast cancer, lung cancer, stroke or AIDS.
HCM can be a stealthy foe because it lacks unique warning signs. Consult your medical provider if you or your kids have any of these potential red flags, advises Dr. Lever:
“In Italy, the law requires that all student athletes be screened with an electrocardiogram (EKG0 before they’re allowed to participate in sports, but in the US, this screening is very controversial, due to cost,” says Dr. Lever. And in some cases, the test may yield false positive results (findings that look like heart abnormality in someone who is actually healthy.)
However, given that EKGs can save lives, by identifying kids at risk for sudden cardiac arrest, Dr. Lever recommends the test. If abnormalities are found, additional heart tests, including an echocardiogram, are typically ordered.
For people with a terrifying family history of early heart-related deaths, such as Salberg, there are also genetic tests to check for mutations linked to HCM. (A genetic cause is found in about 60 percent of cases, says Dr. Lever.) The mom, now 45, and her daughter, Rebecca, carry the defect, as do her niece and nephew.
Once detected, HCM is highly treatable with medications and in some cases, surgery. For people at high risk for SCA, such as Salberg and Rebecca, treatment may also include an implantable defibrillator to give their hearts a jolt back to its normal rhythms if dangerously irregular beats are detected.
The device may have saved 18-year-old Rebecca’s life, since the young woman—now in college—received a shock from the defibrillator while galloping on her horse. If so, the right care may have finally broken the cycle of tragedy that has haunted the family for generations.
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