Deadly Disease: Pediatric Cardiomyopathy

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 Sergie Zholtok (hockey), Flo Hyman (volleyball), Thomas Herrion (football), and Reggie Lewis (basketball). Each year, cardiomyopathy is responsible for taking the lives of boys and girls competing in organized sports programs around the country. These deaths are not publicized and have not gotten the attention that they deserve.

“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 and proper care,” says Lisa Yue, Founder and President 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 to SCA because his cardiomyopathy was not diagnosed.”

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 this 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 and school staff to be familiar with the signs of cardiomyopathy and review their family’s cardiac history to determine if their child is at risk. Being aware of your family’s cardiac history is an important step to keeping your child protected from sudden cardiac arrest. If you have a family member who died suddenly or unexpectedly before the age of 50, if your child complains of chest pain or unexplained fatigue when exercising, or if your child is adopted and his/her medical history is unknown, it is best to talk  to speak to a pediatrician, 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 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. Usually symptoms include fatigue with exercise, light-headedness or dizziness, unexplained fainting, chest pain, shortness of breath, rapid heartbeat, and/or nausea. With some children, there may be no warning signs, and the first symptom is a cardiac arrest. 90% of sudden cardiac arrest cases are fatal, and the chance of survival depends on several factors. This includes the availability of CPR and AED 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 can lead to SCA. According to the North American Pediatric Cardiomyopathy Registry, 1 out of 100,000 children are affected, although some view this as a conservative estimate.

Unnecessary deaths can be prevented if we implement 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. Through our federal advocacy work, we are making strides in getting legislators to recognize cardiomyopathy. 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 Senate. Both legislations focus on the components needed to improve survival for children with cardiomyopathy. There is more work to be done in this area, but we are getting the attention of congressional members and federal agencies.

Follow the Children's Cardiomyopathy Foundation on Instagram @ccfheartkkids and Twitter @CCFheartkids.

Health Safety Cardiomyopathy Youth Disease Children's Cardiomyopathy Foundation

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