When Lightning Strikes Twice: One Mom Takes Action to Educate Others about a Silent Killer

When my 11-month-old son, Bryan, wouldn’t eat and was lethargic, I knew something was wrong. Our pediatrician thought Bryan had a common cold and wasn’t concerned, but I knew in my heart that something was terribly wrong. A few days later, Bryan had a sudden cardiac arrest and died just weeks before his first birthday.

The autopsy revealed that Bryan had hypertrophic cardiomyopathy (HCM), a heart condition that affects the ability of the heart muscle to pump blood through the body. Following Bryan’s death, we searched for answers and were told by doctors that his situation was extremely rare and that cardiomyopathy typically does not affect children so early in life.

Little did we know that this would be the exception for our family. A year later, our second child child, Kevin, was diagnosed with HCM shortly after birth. Although we tried to save him from the same fate as his brother, we lost Kevin at nine months while he waited for a heart transplant.

Losing my two boys was devastating, and in our journey we discovered that there was very limited knowledge on the disease among physicians and no support for families affected by cardiomyopathy. With this realization, my husband and I knew we had to do something to address the unmet needs of the disease. In 2002, we established the Children’s Cardiomyopathy Foundation (CCF) to accelerate research into finding cures and provide informational and emotional support to families.

According to the Pediatric Cardiomyopathy Registry, nearly 40 percent of diagnosed children receive a heart transplant or die. Cardiomyopathy is an extremely variable disease with different presentation and outcomes. Identifying a child with cardiomyopathy can be challenging because a child may by symptom free and appear healthy. It is not uncommon for symptoms of cardiomyopathy to be mistaken for a common cold, flu, asthma, or a stomachache.

Parents should be aware of the warning signs and symptoms of cardiomyopathy and communicate any concerns to their child’s pediatrician. Common symptoms include shortness of breath, rapid breathing, fainting, chest pain, dizziness, heart palpitations, and extreme fatigue. Babies may have poor weight gain, have difficulty feeding and show excessive sweating.

Cardiomyopathy is also the number one cause of sudden cardiac arrest (SCA) in children under 18, and SCA is the number one cause of death on school property. However, premature death can be prevented if cardiomyopathy is diagnosed early and appropriately managed. Last year, CCF launched Children’s Cardiomyopathy Awareness Month in September to raise awareness of this potentially life threatening disease and to help identify more undiagnosed, at-risk children. We felt that September would be an ideal time to focus on heart health in children with afterschool sports and activities gearing up. Knowing the signs, symptoms and risk factors associated with cardiomyopathy is the first step to protecting your child from sudden cardiac arrest.

Although cardiomyopathy can strike any child, the stress of athletic competition poses higher risks to those who have a genetic predisposition to cardiomyopathy. Since August 1, there have been more than a dozen news stories about a child collapsing during athletics — a prep school football player in Philadelphia, a Wayne State star softball player, a high school junior soccer player in South Carolina — just to name a few.

To help keep young athletes safe, last year CCF 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 includes providing educational resources to increase awareness of cardiomyopathy and other high-risk childhood cardiac conditions, providing grants for cardiac training and equipment and setting guidelines for emergency action plans for athletics.

Parents can also protect their children by making sure there is an automated external defibrillator (AED) in their children’s school and at all school sporting events and practices. In addition, school staff should be trained in cardiopulmonary resuscitation (CPR) and the use of an AED, and have a cardiac emergency response plan in place.

While my husband and I can’t bring back Bryan and Kevin, we will continue to do all we can for the children living with cardiomyopathy. We have learned that as a parent, you are your child’s greatest health advocate, and knowing your family’s cardiac history is the best way to prevent premature death from heart disease.  A month dedicated to raising awareness of pediatric cardiomyopathy can identify more children at risk of sudden cardiac arrest and save lives. We don’t want another family to endure the pain of losing their child to a heart disease.

By Lisa Yue, Founding Executive Director of the Children’s Cardiomyopathy Foundation (CCF)

For more information about pediatric cardiomyopathy, visit www.childrenscardiomyopathy.org.

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