What is known — and not known — about heart muscle diseases in children

American Heart Association Scientific Statement

DALLAS, May 28, 2019 — Cardiomyopathies (heart muscle diseases) in children are the focus of a new scientific statement from the American Heart Association that provides insight into the diagnosis and treatment of the diseases as well as identifying future research priorities. It will be published in the American Heart Association’s journal Circulation.

When a child has certain types of cardiomyopathy, their heart is not able to pump blood efficiently. Symptoms may include difficulty breathing, heart rhythm abnormalities, dizziness, swollen hands and feet or other indications.

Although rare, cardiomyopathies in children can be life threatening and often result in either a child needing a heart transplant or premature death. There are many causes of cardiomyopathies including genetic variations that affect basic heart functions, systemic diseases, such as infections, treatments for medical conditions that injure the heart and many others, some of which are not yet understood.

According to the statement:

  • Nearly 40% of children who are diagnosed with cardiomyopathies that produce symptoms receive a heart transplant or die within the first two years after diagnosis.
  • The percentage of children with cardiomyopathy who received a heart transplant has not declined over the past 10 years.
  • Cardiomyopathy remains the leading cause of transplantation for children over one year of age.

“This statement is designed to give medical professionals an overview of what we currently know about cardiomyopathies in children. Although we are able to provide effective treatments in many cases, research is urgently needed to better understand the causes of the diseases so we can help children with cardiomyopathies live their best lives,” said Steven E. Lipshultz, M.D., the chair of the writing group and the A. Conger Goodyear Professor and chair of the Department of Pediatrics at the Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo.

Dr. Lipshultz is also the Chair of the Medical Advisory Board of the Children’s Cardiomyopathy Foundation, which partners with the American Heart Association on funding pediatric cardiomyopathy research grants.


Co-authors are Yuk M. Law, M.D.; Alfred Asante-Korang, M.D.; Eric D. Austin, M.D.; Anne I. Dipchand, M.D.; Melanie D. Everitt, M.D.; Daphne T. Hsu, M.D.; Kimberly Y. Lin, M.D.; Jack F. Price, M.D.; James D. Wilkinson, M.D. and Steven D. Colan, M.D.

Additional Resources:

After May 28, 2019, view the manuscript online.

Commonly Asked Questions About Children and Heart Disease

Congenital Heart Defects

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About the American Heart Association

The American Heart Association is a leading force for a world of longer, healthier lives. With nearly a century of lifesaving work, the Dallas-based association is dedicated to ensuring equitable health for all. We are a trustworthy source empowering people to improve their heart health, brain health and well-being. We collaborate with numerous organizations and millions of volunteers to fund innovative research, advocate for stronger public health policies, and share lifesaving resources and information. Connect with us on heart.org, Facebook, Twitter or by calling 1-800-AHA-USA1.

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