THE BLOG

Taking Action to Educate Others About a Silent Killer

Losing my two boys at such a young age was devastating, and in our journey for answers we discovered that there was very limited understanding on cardiomyopathy in children and no support services for families affected by the disease. With this realization, my husband and I knew something had to be done to address the unmet needs of the disease.
09/25/2015 10:38am ET | Updated September 25, 2016
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My 11-month-old son, Bryan, wasn't his normal active self; he wouldn't eat and was lethargic. I was concerned, but the pediatrician thought Bryan had a common cold or flu. I had a nagging feeling that something was terribly wrong. A day later, Bryan had a sudden cardiac arrest and died on the emergency room table just weeks short of his first birthday.

In the confusing days that followed, we learned from his autopsy that Bryan had hypertrophic cardiomyopathy (HCM), a heart condition that affects the ability of the heart muscle to pump blood through the body. Bryan seemed like such a healthy boy; no one suspected that his heart was failing. Following Bryan's death, we were reassured by cardiologists that his situation was "extremely rare" and that "cardiomyopathy typically does not affect children so early in life."

Little did we know that what was common medical knowledge in 1999 would not apply to our family's situation. A year later, our second child child, Kevin, was diagnosed with HCM. Although we tried to save him from the same fate as his brother, we sadly lost Kevin at 9 months old while he waited for a heart transplant. He had been in and out of the hospital for the last three months of this life.

Losing my two boys at such a young age was devastating, and in our journey for answers we discovered that there was very limited understanding on cardiomyopathy in children and no support services for families affected by the disease. With this realization, my husband and I knew something had to be done to address the unmet needs of the disease. In 2002, we established the Children's Cardiomyopathy Foundation (CCF) to accelerate research, increase awareness of the disease, and provide information and emotional support to families.

Pediatric cardiomyopathy is a serious and complex heart disease that is often overlooked or misdiagnosed. According to the Pediatric Cardiomyopathy Registry, nearly 40 percent of diagnosed children either receive a heart transplant or die. Because cardiomyopathy is an extremely variable disease with different presentation and outcomes, identifying a child with the disease can be challenging. A child may appear healthy and be symptom free in some cases. It is not uncommon for symptoms of cardiomyopathy to be mistaken for a common cold, flu, asthma, or a stomachache.

After the heartbreak of losing Bryan and Kevin, the health of my current four children is of paramount concern to me. My advice to parents is that they 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.

Unknown to many, cardiomyopathy is the number one cause of sudden cardiac arrest (SCA) in children under 18, and SCA is the leading cause of death on school property. Premature death can be prevented if heart abnormalities like cardiomyopathy are detected early and managed properly. Although cardiomyopathy can affect any child, the stress of athletic competition poses higher risks to those who have a genetic predisposition to cardiomyopathy. Since August, 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.

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. With afterschool sports and activities starting, September is an ideal time to focus on heart health in children. Knowing the signs, symptoms and risk factors associated with cardiomyopathy is the first step that a parent can take to protecting their child from sudden cardiac arrest.

Parents can also make 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.

To help keep young athletes safe, CCF worked with Senator Robert Menendez (NJ), Representatives Lois Capps and Bill Pascrell, and the National Athletic Trainers' Association to introduce in 2014 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.

While my husband and I can't bring back Bryan and Kevin, we will continue to do all we can for children living with cardiomyopathy and to prevent more unnecessary deaths. Through our experience, we have learned that an informed and involved parent is a child's greatest health advocate. 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 heart disease.

For more information about pediatric cardiomyopathy and Children's Cardiomyopathy Awareness Month, visit www.childrenscardiomyopathy.org.