When thinking of heart disease, older adults typically come to mind, but children also can have heart disease, often with more devastating outcomes. Pediatric cardiomyopathy is a potentially life-threatening disease and the leading cause of sudden cardiac arrest (SCA) in children.
What is Cardiomyopathy?
Cardiomyopathy is a chronic disease of the heart muscle that affects the heart’s ability to pump blood. Some children who have the disease can be symptom-free and are unknowingly at risk for SCA. Approximately 2,000 people under 25 die of SCA every year according to the Centers for Disease Control and Prevention, but there are preventative measures for families.
“In many cases, if cardiomyopathy is detected early and managed properly, sudden cardiac death can be prevented,” says Lisa Yue, a parent who lost two children to cardiomyopathy and founder of the Children’s Cardiomyopathy Foundation (CCF). The Foundation is launching the first Children’s Cardiomyopathy Awareness Month in September to call attention to the disease. “Knowing the symptoms and risk factors for cardiomyopathy can help save lives.”
Know the Symptoms
Currently there is no formal cardiac screening process for children. While pediatricians can respond to more obvious symptoms, identifying pediatric cardiomyopathy can be challenging because some affected children are symptom-free. It is not uncommon for cardiomyopathy to be missed or misdiagnosed as a cold, flu or asthma.
Symptoms include shortness of breath, rapid breathing, fainting, chest pain, dizziness, heart palpitations and fatigue. Infants may experience poor weight gain, difficulty breathing, excessive sweating or lethargy. It is important for parents to communicate concerns to the pediatrician.
Know the Risk Factors
“Cardiomyopathy can occur in any child and be inherited or acquired through a viral infection or from cancer chemotherapy,” explains Steven Lipshultz, M.D., pediatrician-in-chief of Children’s Hospital of Michigan and chair of CCF’s medical advisory board.
Since the majority of cardiomyopathies are inherited, understanding a family’s cardiac history is the best way to prevent premature death. Hereditary risk factors include having a family member who is disabled by heart disease, has died of heart disease before age 50, or was diagnosed with Long QT syndrome, cardiomyopathy, Marfan syndrome or a heart rhythm issue. Family members who exhibit symptoms such as chest pain, discomfort upon exertion, fatigue, fainting or high blood pressure should be evaluated by a cardiologist.
Protecting At-Risk Young Athletes
Adolescents with an underlying heart condition like cardiomyopathy are at a higher risk for SCA due to increased physical activity and certain body changes. SCA is the top cause of death on school property, and according to the American Heart Association these deaths occur most commonly in high-intensity sports.
To help keep young athletes safe, Senator Robert Menendez, Representatives Lois Capps and Bill Pascrell, Children’s Cardiomyopathy Foundation and the National Athletic Trainers’ Association introduced the ‘Supporting Athletes, Families, and Educators to Protect the Lives of Athletic Youth (SAFE PLAY) Act,’ with provisions to protect student athletes from SCA by having injury management action plans to respond to concussions and other injuries, including managing when a child may safety return to sports after sustaining an injury.
For more information about cardiomyopathy, visit www.childrenscardiomyopathy.org. Whether children are at home, in school or on the sports field, it is important for parents to understand the symptoms and risk factors of the disease.
