Duke pediatric heart specialists are experts in caring for children with cardiomyopathy, a group of diseases that affect the heart muscle. Duke is a destination center for children who need evaluation and treatment for this rare heart disorder. Our patients include children who are newly diagnosed as well as those at high risk due to a family history of cardiomyopathy. We consider your entire family’s risk of developing cardiomyopathy and help reduce the potential for serious complications.

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About Pediatric Cardiomyopathy

Pediatric cardiomyopathy has a variety of causes, including genetic factors, viral infections like myocarditis, congenital heart disease, medication side effects, and more. Eventually, cardiomyopathy diminishes the heart’s ability to effectively pump blood throughout the body. In severe cases, cardiomyopathy can cause arrhythmias, heart failure, and sudden death.

Types of Cardiomyopathy
There are five main types:

  • Hypertrophic Cardiomyopathy: This common type of cardiomyopathy causes the heart muscle walls to thicken, forcing the heart to work harder and restricting the flow of blood leaving the heart. It can go undiagnosed because many people have no symptoms. Hypertrophic cardiomyopathy can cause sudden cardiac arrest, particularly in young and seemingly healthy athletes.
  • Dilated Cardiomyopathy: A defect in the heart muscle affects its ability to pump normally. The heart size is larger, but muscle walls are thinner and weaker than normal.
  • Arrhythmic Cardiomyopathy: Also known as arrhythmic right ventricular cardiomyopathy or dysplasia, this disorder causes the heart muscle to turn to fat, causing dangerous arrhythmias.
  • Non-Compaction Cardiomyopathy: The heart muscle develops abnormally, causing portions of the heart wall to remain spongy and to extend into the pumping chambers of the heart.
  • Restrictive Cardiomyopathy: The lower chambers of the heart become rigid and stiff, making it difficult for the heart to fill with blood during muscle relaxation. 
Our Locations

Duke Health offers locations throughout the Triangle. Find one near you.

Testing

If your child is being evaluated for cardiomyopathy due to family history, we often see the child and the affected family member, usually a parent, at the same time. In addition to evaluating your child, we will also ask questions about how the affected family member is doing and about your family’s heart health, including whether you have any relatives under the age of 50 who experienced an unexplained, sudden death.

Echocardiogram
Also known as an echo, this specialized ultrasound shows the structure of your child’s heart, including the thickness of the heart walls.

Genetic Testing
To identify cardiomyopathies that are heritable, meaning they can be inherited from family members, cardiovascular geneticists test blood or saliva samples to identify genetic mutations. For those with heritable arrhythmias that have a known genetic cause, family members can undergo risk-predictive genetic testing to determine who might else be at risk.

Electrocardiogram
Also known as an ECG or EKG, an electrocardiogram records the heart's electrical function through electrodes placed on your child’s chest.

Heart Rhythm Monitors
Portable, wearable heart monitors record heart function and abnormalities over time. 

MRI and Cardiac MRI
Magnetic resonance imaging (MRI) technology uses a powerful magnet and radio waves to produce detailed pictures of the heart. A specialized cardiac MRI produces images of the blood vessels surrounding the heart. Duke has one of the best cardiac MRI programs in the region thanks to our advanced technology and experienced personnel.

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Treatments

At Duke, a team of expert pediatric cardiologists, electrophysiologists, heart surgeons, and others work together to treat cardiomyopathy in children.

Promoting a Healthy Lifestyle / Considering Sports Participation
We will discuss the goals you and your child have regarding lifestyle and sports, and perform an individualized risk evaluation of your child. Through shared understanding and joint decision-making with the family, we seek to keep children active in sports and exercise as much as possible.

Observation
To monitor for signs of heritable cardiomyopathies, children without symptoms of the disease but who could develop them in the future should have regular -- usually yearly -- checkups. During these appointments, your child’s doctor may review changes in your family’s medical history, perform a physical exam, and re-evaluate your child’s previous genetic testing.

Medications
Medicines can help slow the progression of cardiomyopathy, improve heart function, and treat symptoms like high blood pressure.

Heart Surgery
During an open-heart surgical procedure called a myectomy, pediatric heart surgeons remove areas of thickened heart muscle that are obstructing blood flow. 

Ventricular Assist Device
A ventricular assist device or VAD is a mechanical heart pump that is surgically placed to help your child’s heart distribute blood throughout the body. VADs can be used as a “bridge” while your child waits for a heart transplant.

Heart Transplant
A heart transplant may be necessary if your child experiences severe heart failure.

Need a Second Opinion?

Our pediatric cardiomyopathy experts will review your child’s diagnostic scans performed elsewhere and contact you to discuss an effective treatment plan. 

Why Choose Duke

Cardiomyopathy Center of Care
Duke is the only center in North Carolina designated as a Cardiomyopathy Center of Care by the Children’s Cardiomyopathy Foundation. This recognizes our high-quality, expert care for children with cardiomyopathy.

We Treat Children Like Yours Every Day
Because pediatric cardiomyopathy is rare, you should seek care at a center like Duke where providers regularly treat this disorder. Our vast experience ensures that we quickly identify red flags and match your child with the best diagnostic and treatment options. We stay abreast of the latest advances in the field and bring those directly to your child.

Access to Related Specialists
We connect your child with the services and resources they need in addition to their cardiomyopathy care. As a Duke patient, your child will have access to high-quality care for related conditions like genetic heart disease, congenital heart disease, arrhythmias, and more. 

Team Approach to Care
Our team of pediatric cardiologists work with genetic experts, heart disease experts, and specialized surgeons to provide comprehensive care for patients and their families.

Clinical Trials 
As a Duke patient, your child may be eligible to participate in clinical trials or other research programs that are studying new approaches to treat pediatric heart disease.

#4 in Nation and #1 in NC for Pediatric Cardiology and Heart Surgery

Duke Children’s is ranked the #4 pediatric cardiology program in the nation and the best in North Carolina by U.S. News & World Report.

This page was medically reviewed on 09/23/2024 by