Children's cardiomyopathy: What you need to know
By Greg Bach
Cardiomyopathy can be a devastating disease; it is the leading cause of sudden cardiac arrest in children under 18, many of whom are student athletes. It can also be an inherited disease, but symptoms are not always obvious.
Equally alarming, 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, where it becomes enlarged, thickened or rigid. This causes the heart to lose strength in pumping blood through the body and affects the heart’s normal electrical rhythm. Children with cardiomyopathy are at greater risk when they exert themselves in competitive sports.
“Until we find cures for cardiomyopathy, our more immediate goal is to get children with life-threatening cardiomyopathies diagnosed earlier and appropriately treated so they don’t suffer a sudden cardiac arrest while engaging in sports,” says Lisa Yue, Founding Executive Director of the Children's Cardiomyopathy Foundation.
In recognition of September being Children’s Cardiomyopathy Awareness Month, we spoke with Yue to get her insights on this often-missed disease and learn about the work her organization is doing to help protect the lives of 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 19 years ago in 1999 when my husband Eddie and I lost our first son, Bryan, to sudden cardiac arrest. There were no signs that he was harboring a deadly heart disease or that his heart was failing him. In 2000, we welcomed our second child, Kevin, but sadly we lost him as he waited for a heart transplant.
After losing two children to cardiomyopathy, we realized there was limited knowledge on the disease in children and that we had to help other cardiomyopathy families find hope for the future. We established the Children’s Cardiomyopathy Foundation (CCF) 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 raised more than $12 million for research and education initiatives, and grown into a global community of families, physicians and scientists focused on improving diagnosis, treatment and quality of life for children with cardiomyopathy.
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 sporting events. While we hope that one is never used, it should be included on the “equipment” checklist along with shin guards for soccer players, helmets for football players and mouth guards for lacrosse players. An AED can protect an adult and child from dying so an AED is a safety precaution when time is critical. When a cardiac arrest occurs, we only have 3-5 minutes to save a life. The timely delivery of an electric shock from an AED can increase their chances of survival.
Having AEDs at youth sporting events can protect those who are unaware that they have cardiomyopathy and are at a higher risk for a sudden cardiac arrest. Fortunately, New Jersey passed a law in 2015 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. It requires coaches or staff to be trained in CPR and AED usage and be present at athletic events or team practices. The bill also requires schools to establish and implement an emergency action plan for responding to a sudden cardiac event. As a parent of four children in elementary, middle and high school, this law is important to me, and I hope that it can be enacted in every state.
There is a common perception that AEDs are intimidating, but they are designed to be simple to use with automated commands detailing each step. Another point to remember is that lay people who use an AED to help others in a medical emergency are protected from any liability by Good Samaritan laws and the Cardiac Arrest Survival Act.
SPORTINGKID LIVE: What are you most proud of that your organization has accomplished?
YUE: Sixteen years ago, there was hardly any research on pediatric cardiomyopathy. Since CCF’s establishment in 2002, more than 60 research studies have been funded, resulting in more than 260 medical publications and presentations on the disease. These articles guide thousands of physicians caring for children with cardiomyopathy and have positively affected their health outcomes.
CCF was the first to establish a blood and tissue repository on pediatric cardiomyopathy, host the first international scientific conference on the disease and offer a research grant program on pediatric cardiomyopathy. We were also able to get the first cardiomyopathy bill introduced in the U.S. House of Representatives and Senate.
Before CCF became involved in advocacy, there was no legislation to help keep kids safe on the playing field. We worked with Senator Robert Menendez (NJ), Representatives Lois Capps and Bill Pascrell, and the National Athletic Trainers’ Association to introduce the Supporting Athletes, Families, and Educators to Protect the Lives of Athletic Youth (SAFE PLAY) Act.
The bill includes provisions to protect student athletes from SCA, and recommends developing and distributing educational resources to increase awareness of cardiomyopathy and other high-risk childhood cardiac conditions, providing grants for cardiac training and equipment in public schools, and setting guidelines for emergency action plans for athletics.
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