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, I think it’s tragic that we have lost another child to cardiomyopathy when 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 undiagnosed 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 weaker 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 September being Children’s Cardiomyopathy Awareness Month, 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 their child’s risk of sudden cardiac arrest. Being familiar with your family’s cardiac history is an important first 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 you do not know the birth parent’s medical history, I would suggest talking to your child’s pediatrician and, if recommended, a cardiologist and/or geneticist. 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. Only 5 percent of sudden cardiac arrest victims survive, and the outcome often depends on whether there is a medical emergency response plan in place and whether there are CPR trained staff and an automatic external defibrillator (AED) on site. On average, it takes 8-12 minutes for emergency crews to arrive. This is why these prerequisites are vital in protecting the lives of young athletes.
SPORTINGKID LIVE: Just how serious is this condition?
YUE: Sudden cardiac arrest (SCA) is the number one cause of death on school property with cardiomyopathy as the leading cause of SCA in children. It has been reported that as many as 7,000 children die of SCA every year. Even with these statistics, cardiomyopathy is not a well-known disease.
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 though. Last year, the National College Athletic Association (NCAA) hired Dr. Brian Hainline as their first chief medical officer. He discovered that sudden cardiac arrest is a serious concern in college athletics. Hainline is now proposing more comprehensive cardiac screening to be part of the pre-sports checkup and instituting cardiac emergency plans for the NCAA. Currently, electrocardiogram screening is required for many professional athletes, but not for those playing in high school and college sports. I hope the focus on preventing SCA goes beyond college athletics and extends to all young student athletes.
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