Conditions & Treatments
- A to Z Guide

Cardiomyopathy

Disease Information

Overview

Children may come in so sick, but I know that by the time they leave, many of them will be 'fixed.' Their families are so grateful and the children are so happy. It's very rewarding.

--Michelle Martin Hurtig, RN, BSN, Cardiology nurse manager, Boston Children's Hospital

As adults, we tend to think of heart disease as something our parents and grandparents might face … not our children. Unfortunately, the reality is that heart conditions do affect babies, infants, children and adolescents, as well as adults and older people.

One of the most common forms of pediatric heart disease is cardiomyopathy, an umbrella term used to describe several different problems that affect the muscle of the heart.

Cardiomyopathy can cause either dilation or “stretching” of the heart muscle, or a thickening of the muscle tissue.
Less often, cardiomyopathy can involve a buildup of scar tissue or fat within the heart muscle.
Rarely, the heart muscle loses the ability to relax and blood cannot fill the heart properly.
Some forms of cardiomyopathy run in families.
Other times, cardiomyopathy develops because of another medical condition (like undergoing chemotherapy for certain childhood cancers).
In many cases, however, there is no clear cause for a child’s cardiomyopathy.
Some children with cardiomyopathy display few to no signs of illness at first, while others may be seriously affected by shortness of breath, dizziness and other symptoms from the beginning.
Sometimes, children need a heart transplant to manage their cardiomyopathy.

The detailed information on the following pages will help you, your child and your family gain a better understanding of cardiomyopathy and a clearer picture of what to expect in the weeks and months ahead.

Setting the standard for ventricular assist device use in children
In 2007, Boston Children’s Hospital cardiac surgeon Francis Fynn-Thompson, MD, received special permission from the United States Food and Drug Administration (FDA) to implant a Berlin Heart—a mechanical device that temporarily takes over the heart’s pumping functions—in a 9-year-old boy on the waiting list for a donor heart. This groundbreaking procedure saved the patient’s life, and made pediatric medical history. Learn more.

Setting the standard for ventricular assist device use in children

In 2007, Boston Children’s Hospital cardiac surgeon Francis Fynn-Thompson, MD, received special permission from the United States Food and Drug Administration (FDA) to implant a Berlin Heart—a mechanical device that temporarily takes over the heart’s pumping functions—in a 9-year-old boy on the waiting list for a donor heart. This groundbreaking procedure saved the patient’s life, and made pediatric medical history. Learn more.

How Children’s Hospital Boston approaches cardiomyopathy

The cardiologists, cardiac surgeons and nurses, cardiovascular imaging professionals and other clinicians in the Children’s Hospital Boston Cardiomyopathy Program have extensive experience with cardiomyopathy. Each year, we treat hundreds of children, adolescents and adults with all forms of the condition.

Our specialized training in pediatric cardiology means that we understand the unique challenges, circumstances and intricacies of working with young people with cardiomyopathy and other heart diseases and disorders. In addition to our medical expertise, we provide patient-centered care that always recognizes your child as an individual—and we offer resources to meet the needs of your entire family.

With more than 80 cardiac experts on our staff, Children’s operates the largest pediatric heart program in the nation. We treat thousands of children, adolescents and adults who are living with a broad spectrum of cardiac problems—ranging from cardiomyopathy and congenital heart defects to blood vessel disorders, heart and lung disease and congestive heart failure.

We use the most sophisticated diagnostic and imaging procedures, including interventional catheterization, and offer dozens of specialized services in such areas as heart valve replacement, cardiac anesthesia, robotic surgery and fetal cardiology.

Our Department of Cardiology and Department of Cardiac Surgery clinicians will work closely with you to determine the right treatment plan for your child’s cardiomyopathy. We consider you an invaluable member of the treatment team, and always welcome your input and questions.