Johns Hopkins All Children's Heart Institute

Pediatric Cardiomyopathy

We treat cardiomyopathy in children in our program, which is recognized as a Center of Care by the Children’s Cardiomyopathy Foundation.

Children with cardiomyopathy receive comprehensive care from the team in the cardiomyopathy program in the Heart Institute at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida. The program is recognized as a Center of Care by the Children’s Cardiomyopathy Foundation.

The Children’s Cardiomyopathy Foundation’s Cardiomyopathy Centers of Care Program recognizes medical centers with expertise in pediatric cardiomyopathy. A hospital that is a recognized Center of Care provides high-quality cardiac care and specialized disease management to children with cardiomyopathy.

What is cardiomyopathy?

Cardiomyopathy is a disease of the heart muscle in which it becomes abnormally large, thick or stiff. This causes damage to the heart muscle cells and the tissue around the heart. Cardiomyopathy affects the heart’s ability to pump blood properly, which can lead to an irregular heartbeat (called arrhythmia) or in severe cases heart failure. Treatment for cardiomyopathy aims to improve heart function.

There are several types of cardiomyopathy, including:

Dilated cardiomyopathy (DCM): DCM is the most common type of cardiomyopathy. It occurs when the pumping chambers of the heart — called the ventricles — are enlarged and weakened. While some children with DCM may not show symptoms, in some more severe cases it may lead to heart failure. Signs of heart failure in children can include fast breathing, shortness of breath, needing to take frequent breaks, falling asleep while feeding, lack of appetite or poor growth.

Hypertrophic cardiomyopathy (HCM): HCM occurs when the muscle of one or more of the heart’s pumping chambers, or ventricles, is too thick. It usually affects the left ventricle of the heart, but it can also affect both the left and right ventricles. (The left ventricle pumps blood to the body, and the right ventricle pumps blood to the lungs.) HCM can cause the heart to have an abnormal rhythm and lead to heart failure.

Restrictive cardiomyopathy (RCM): RCM is a rare type of cardiomyopathy that causes the heart muscle to become stiff, making it difficult for the ventricles to fill with blood properly. RCM can also cause abnormal heart rhythms. Children with RCM will often need a heart transplant.

Why Choose Johns Hopkins All Children’s

The Cardiomyopathy Program at Johns Hopkins All Children’s is recognized as a Center of Care by the Children’s Cardiomyopathy Foundation for providing high-quality cardiac care and specialized disease management to children with cardiomyopathy.

We are also the only pediatric center in the region that provides options for ventricular assist devices, as part of our advanced cardiac therapy program.

What causes cardiomyopathy?

For children with cardiomyopathy, the cause is often not known. Cardiomyopathy may be genetic and run in families. For these patients, we work closely with the team in the Cardio-Genetics Clinic to provide genetic testing and treatment planning.

In rare cases, cardiomyopathy may be associated with other conditions such as a heart infection called myocarditis, metabolic disorders, or muscle disorders such as muscular dystrophy. Some children being treated with chemotherapy drugs may also develop cardiomyopathy.

How is cardiomyopathy diagnosed?

Your child will have a physical exam, and we will review family history to determine if your child’s cardiomyopathy may have a genetic component. Diagnosis will often involve several tests, which may include:

  • Echocardiogram (ECG)
  • Electrocardiogram (EKG)
  • Genetic testing, if there is a family history of cardiomyopathy or sudden cardiac death
  • Blood tests
  • Cardiac MRI
  • Cardiac catheterization and biopsy

Your child’s pediatric cardiologist will explain the tests needed to best meet your child’s individual needs.

How is cardiomyopathy treated?

Your child’s treatment for cardiomyopathy will depend on the type and severity of their condition. For many children with cardiomyopathy, it can be treated with medication to improve heart function.

In some rare cases, cardiomyopathy may cause a patient’s heart to become progressively weaker, leading to heart failure that requires transplantation. Our heart transplant team includes cardiothoracic surgeons, pediatric cardiologists, nurse practitioners, nurses and heart transplant coordinators who work together to treat complex heart disease through heart transplantation. Learn more about the heart transplant program.

We also work with the heart surgery team to treat children using ventricular assist devices that support heart function and improve quality of life for children whose cardiomyopathy leads to heart failure. For children who will need a heart transplant, a ventricular assist device can support the heart until transplant. Johns Hopkins All Children’s is the only pediatric center in the region for ventricular assist devices.

Some patients may also benefit from an implantable device called a biventricular pacemaker that resynchronizes the heart and corrects an irregular heart rhythm. This helps to improve heart function and the heart’s ability to pump blood. The team in our Pediatric Electrophysiology program provides this expertise for our patients.

Cardiomyopathy patients are seen by our team in our specialized clinic, so they can see their cardiologist and have any testing and blood work completed in the same location.
 

Contact Us

For more information or to make an appointment, please call 727-767-3333. We serve families throughout the greater Tampa Bay area and beyond.