Cardiomyopathy in Children: What You Need to Know

Cardiomyopathy in Children: What You Need to Know

9/26/2022

Cardiomyopathy can be a devastating disease; it is a leading cause of sudden cardiac arrest in children, many of whom are student athletes. Cardiomyopathy in children (pediatric cardiomyopathy) continues to be one of the most challenging and difficult heart diseases to recognize and treat. 

Cardiomyopathy refers to a disease of the heart muscle, when the heart becomes enlarged, thickened, or rigid. This causes the heart to lose strength in pumping blood through the body and affect the heart’s normal electrical rhythm. Often, it is an inherited disease, but symptoms are not always obvious. Children with cardiomyopathy, who are not diagnosed, are at greater risk for sudden cardiac arrest when they exert themselves in sports.

In recognition of Children’s Cardiomyopathy Awareness Month, we spoke with Lisa Yue, Founder and President of the Children's Cardiomyopathy Foundation, to get her insights on this underdiagnosed disease and learn about the work her organization is doing to protect young athletes.

The following is Part Two of our conversation; check out Part One.

SPORTINGKID LIVE: Why did you start the Children's Cardiomyopathy Foundation?

YUE: My journey with cardiomyopathy began 23 years ago in 1999 when I lost my first son, Bryan, to a sudden cardiac arrest. There were no signs that he was harboring a deadly heart disease or that his heart was failing him. In 2001, we lost our second child, Kevin, as he waited for a heart transplant related to cardiomyopathy.

After losing two children to cardiomyopathy, we realized there was limited knowledge on the pediatric form of the disease and that we had to help other affected families find hope for the future. The Children’s Cardiomyopathy Foundation (CCF) was established in 2002 to call attention to this poorly understood disease and to take action on the lack of medical progress and low public awareness. Since its formation, CCF has grown into a global community of families, physicians, and scientists committed to improving diagnosis, treatment, and quality of life for children with cardiomyopathy.

Our goal is to get children with life-threatening cardiomyopathies diagnosed early and managed by a pediatric cardiologist so they don’t suffer a cardiac arrest while engaging in sports.

SPORTINGKID LIVE: How important is it to have accessible automated external defibrillators (AEDs) at youth sporting events?

YUE: An AED is a critical piece of equipment to have at a sporting event or school function. While we hope that one is never used, it should be included on the “equipment” checklist along with other protective sports gear like shin guards for soccer players, helmets for football players, and mouthguards for lacrosse players. Having an AED on site is a safety precaution that can save an adult or child when seconds are critical in a cardiac emergency. We only have 3-5 minutes to react when a cardiac arrest occurs. The timely delivery of an electric shock from an AED can double the chances of survival.

There is a common perception that AEDs are intimidating, but they are designed to be simple to use with commands detailing each step. Another point to remember is that anybody who uses an AED in a medical emergency is protected from liability by Good Samaritan laws and the Cardiac Arrest Survival Act.

Having AEDs on premise can protect those who are unaware that they have cardiomyopathy and are unknowingly at a higher risk for a cardiac arrest. Some states have passed laws requiring schools to have an AED available in an unlocked location that is accessible during the school day and at school-sponsored athletic events or team practices. However, not all states have this legislation, so it is up to coaches or staff to be trained in CPR and AED usage and to bring an AED to athletic events or team practice. The state of New Jersey, where I live, has an AED law. As a parent of school age children, this law is important to me. I hope that this life-saving legislation can be enacted in every state.

SPORTINGKID LIVE: What are you most proud of that your organization has accomplished?

YUE: Twenty years ago, there was hardly any research on pediatric cardiomyopathy. Since CCF’s establishment in 2002, more than 445 medical publications and presentations on pediatric cardiomyopathy have resulted from CCF-funded research studies and scientific conferences. These research and education initiatives have guided physicians in their care of children with cardiomyopathy and led to enhanced health outcomes. Seeing the data on this is extremely rewarding.

There have been many milestones for CCF over the years. We were the first to form an online community for those affected by pediatric cardiomyopathy, the first to host an international scientific conference on the disease, and the first to offer a research grant program on pediatric cardiomyopathy. The opportunity to bring doctors and researchers together to collaborate on multi-centers studies has been important to the field. On the advocacy front, we were able to get the first cardiomyopathy bill introduced in the U.S. House of Representatives and Senate, as well as secure additional federal funding in the millions from the Department of Defense Peer Reviewed Medical Research Program. This has all been possible from the support of our donors and sponsors.

Cardiomyopathy Health Safety

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