DEADLY DISEASE: Pediatric Cardiomyopathy
By Greg Bach
It happens every year across the youth sports landscape: athletes collapsing and dying from a heart ailment that was never detected.
Through the years, cardiomyopathy has claimed the lives of several well-known athletes like Hank Gathers, Flo Hyman and Reggie Lewis, and each year it is responsible for taking the lives of boys and girls competing on fields and courts in organized sports programs around the country.
“Every time I hear of a child collapsing on the field and dying unexpectedly of a heart condition like cardiomyopathy, it’s tragic because he or she could have been saved with earlier detection,” says Lisa Yue, Founding Executive Director of the Children's Cardiomyopathy Foundation. “It is an issue that I care deeply about because cardiomyopathy is a leading cause of sudden cardiac arrest (SCA) in the young, and I lost my first son from SCA due to cardiomyopathy.”
Cardiomyopathy is a chronic heart condition that involves the deterioration of the heart muscle where it becomes abnormally enlarged, thickened, and/or stiffened. Eventually the heart becomes weak and is unable to pump enough blood through the body and maintain a normal electrical rhythm. This can lead to heart failure or irregular heartbeats.
In recognition of Children’s Cardiomyopathy Awareness Month in September, we checked in with Yue to review important points about the disease. Here is Part One of our conversation:
SPORTINGKID LIVE: What’s the message that parents of young athletes need to know?
YUE: Protecting kids’ hearts should be more of a national priority, especially as children head back to school and begin their sports practice. This is the time for parents to learn about the signs of cardiomyopathy and review their family’s cardiac history to determine if their child is at risk for sudden cardiac arrest. Being familiar with your family’s cardiac history is an important step to keeping your child’s heart safe. If you have a family member who died suddenly and unexpectedly before the age of 50, if your child complains of chest pain or unexplained fatigue associated with exercise, or if your child is adopted and his/her medical history is unknown, I would suggest talking to your child’s pediatrician or a cardiologist and geneticist if recommended. The Children’s Cardiomyopathy Foundation (CCF) has a sudden cardiac risk factor sheet that parents may want to review.
SPORTINGKID LIVE: What are the signs and symptoms that volunteer coaches should be aware of and on the lookout for when it comes to their young athletes?
YUE: Cardiomyopathy is an extremely variable disease, and symptoms can range from none to severe. In more common cases, symptoms may include fatigue with exercise, light-headedness or dizziness, unexplained fainting, chest pain, shortness of breath, rapid heartbeat, or nausea. With some children, there may be no warning signs, and the first unfortunate symptom is a cardiac arrest. 90% of sudden cardiac arrest cases are fatal, and chance of survival depends on the availability of CPR trained staff, an automated external defibrillator (AED) on site, and whether there is a medical emergency response plan in place.
SPORTINGKID LIVE: Just how serious is this condition?
YUE: Sudden cardiac arrest (SCA) is the number one cause of death on school property, and it has been reported that as many as 7,000 children die of SCA every year. Cardiomyopathy in children is a serious and rare heart condition that affects 1 out of 100,000 children. Cardiomyopathy is a leading cause of SCA in children.
To prevent unnecessary deaths, we need better pre-participation screening and SCA prevention guidelines to educate school staff, coaches, and parents. Also, medical emergency plans need to be in place at schools and on the athletic fields. We are making strides in this area through our advocacy work in Washington D.C. The Cardiomyopathy HEARTS Act was introduced by the U.S. House of Representatives and the SAFEPLAY Act was introduced in the U.S. House and U.S. Senate. Both legislations focus on the necessary components to improve survival for children with cardiomyopathy. There is more work to be done in this area, but we are getting the attention of key legislators and federal agencies.
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