Cardiomyopathy, a rare and often overlooked condition, is a leading cause of sudden cardiac death in individuals under 18. Because it can be asymptomatic, early awareness is crucial—especially for families with a history of heart disease or sudden deaths before age 50.
Here’s what parents and caregivers need to know about this heart condition affecting children, teens, and young adults.
What is Cardiomyopathy?
Cardiomyopathy is a chronic condition where the heart muscle (myocardium) deteriorates, leading to abnormal thickening, stiffening, or enlargement. As the disease progresses, the heart struggles to pump blood effectively, which can lead to heart failure or sudden cardiac arrest in severe cases.
There are five main types of cardiomyopathy:
Dilated Cardiomyopathy (DCM)
Hypertrophic Cardiomyopathy (HCM)
Restrictive Cardiomyopathy (RCM)
Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC)
Left Ventricular Non-Compaction Cardiomyopathy (LVNC)
Who is at Risk?
While cardiomyopathy is more common in adults, children can also be affected. According to the North American Pediatric Cardiomyopathy Registry, 1 to 1.5 out of every 100,000 children are diagnosed annually in the U.S. This number may be underreported since not all forms are included. Cardiomyopathy can affect children of all ages, genders, and backgrounds.
Causes of Cardiomyopathy in Children
The causes of pediatric cardiomyopathy vary, and in many cases, the exact cause remains unknown. However, common causes include:
Genetic inheritance
Viral infections
Congenital or acquired heart conditions
Side effects of chemotherapy
Metabolic or mitochondrial diseases
Persistent arrhythmias (irregular heartbeats)
Exposure to toxins
Signs and Symptoms
Sometimes, the symptoms of cardiomyopathy in children are mistaken for common illnesses like a cold, flu, or asthma. Symptoms may vary, but some children experience:
Shortness of breath
Dizziness or fainting
Rapid or irregular heartbeats
Abdominal swelling
Chest pain
Extreme fatigue
Infants may also display poor weight gain, feeding difficulties, or excessive sweating.
Warning Signs of Sudden Cardiac Arrest
Early detection is critical. If your child shows any of the following symptoms, seek an evaluation from a pediatric cardiologist:
Chest pain during physical activity
Fainting or seizures during or after activity
Excessive fatigue during exercise
Rapid heart rate without a clear cause
Diagnosing Pediatric Cardiomyopathy
To diagnose cardiomyopathy, pediatric cardiologists typically use echocardiograms (echo) and electrocardiograms (EKG). In some cases, genetic testing may help identify underlying causes. Since this condition is rare, it’s best to seek care from a medical center experienced in pediatric cardiomyopathy.
Treatment Options
Although there is no cure for cardiomyopathy, treatment can manage symptoms and slow disease progression. Treatment plans vary based on the type and severity of cardiomyopathy and may include:
Medications to improve heart function.
Implantable Cardioverter Defibrillators (ICD) for managing irregular heart rhythms.
Surgery, such as myectomy, to relieve symptoms in children with hypertrophic cardiomyopathy.
Ventricular assist devices or heart transplants for severe cases.
Genetic Screening and Family Impact
Since cardiomyopathy is often hereditary, genetic screening is important for families. A pediatric cardiologist and geneticist can help assess the risk and create a screening plan for family members.
Living with Cardiomyopathy
While living with cardiomyopathy may require certain lifestyle changes, many children can lead relatively normal lives with the right medical care. Regular checkups, daily medication, and possible dietary changes may be needed. In some cases, children may need to avoid competitive sports, but this decision should be made in collaboration with a specialist to ensure the best quality of life.