By Greg Bach
Cardiomyopathy can be a devastating disease; it is a 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 Children’s Cardiomyopathy Awareness Month in September, we spoke with Yue to get her insights on this often underdiagnosed disease and learn about the work her organization is doing to 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 21 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 pediatric form of the disease and that we had to help other affected 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 $15 million 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 a sporting event or school function. 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 mouthguards for lacrosse players. An AED is a safety precaution and can protect an adult and child from dying when seconds are critical. We only have 3-5 minutes to save a life when a cardiac arrest occurs. The timely delivery of an electric shock from an AED can double the chances of survival.
Having AEDs on premise can protect those who are unaware that they have cardiomyopathy and are unknowingly at a higher risk for a sudden 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 be present at athletic events or team practices. The state of New Jersey has an AED law. As a parent of four children in middle and high school, this law is important to me, and I hope that it can eventually 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: Eighteen 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 388 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.
There have been many “firsts” for CCF - the first foundation to establish a blood and tissue repository on pediatric cardiomyopathy, host an 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 (D-NJ) and Representative Bill Pascrell, (D-NJ-09) to re-introduce the Supporting Athletes, Families, and Educators to Protect the Lives of Athletic Youth (SAFE PLAY) Act this February.
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. To learn more about the SAFEPLAY Act and to contact your representative to cosponsor them, click here.