Cardiomyopathy Program | Frequently Asked Questions

Cardiomyopathy is very often a “time-will-tell” disease. It can have many causes, signs, and symptoms, and in each case, the progression of the disease can be unpredictable. Your child’s course of treatment and long-term outlook will depend greatly upon:

• Her age
• The type of cardiomyopathy
• The underlying cause of the disease
• The severity of the disease at the time of diagnosis
• Her tolerance for specific medications or procedures
• Your family’s preferences for treatment

Whether your child needs to cut back significantly on activities — or cut back at all — depends greatly on her type of cardiomyopathy and her symptoms. Symptoms may dictate a child’s ability to participate in physical activities. Your child’s treating clinician should make the determination about what type and level of physical exertion is appropriate.

While diet changes should not be considered substitutes for more involved medical care, children with cardiomyopathy — particularly the restrictive form — can benefit from maintaining a healthy weight and restricting their fluids, salt, and caffeine intake. Your treating clinician can give you more specific recommendations.

It is known that some of the chemotherapy agents that are so beneficial in treating childhood cancers have long-term side effects. Certain chemotherapy drugs — particularly a class of drugs called anthracyclines — as well as exposure to radiation, have been linked to later development of cardiomyopathy. Echocardiograms and cardiac follow-up should be part of the long-term care of all survivors of childhood cancers.

Parents of children with cardiomyopathy should always be watchful of changes in behavior, appearance, appetite, activity level, and respiration.

You should seek medical help immediately if your child experiences any of the following:

• Chest pain
• Clammy skin or the feeling of a “cold sweat”
• Dizziness
• Fainting
• Heart palpitations
• Irregular heartbeat
• Pale, ashen color in the face
• Racing heartbeat
• Rapid breathing
• Shallow breathing
• Shortness of breath
• Swollen feet, ankles, or legs

Yes, Boston Children’s Center for Cardiovascular Genetics works closely with Boston Children’s Cardiomyopathy Program to provide several clinical services to test for genetic causes of heart conditions including cardiomyopathy. The program also offers genetic counseling.

Cardiomyopathy is a chronic and sometimes progressive disease. Heart transplant can provide a life-sustaining treatment option for children in which cardiomyopathy worsens.

No, there is no cure. There is no treatment that can cure the disease in any of its forms, nor guarantee long-term recovery.

Depending upon how advanced the disease is at the time of diagnosis, some degree of heart function may be irreversibly lost. When diagnosed early, some forms of cardiomyopathy respond well to long-term medication use, or pacemaker or defibrillator implantation.

Research in the understanding of how heart muscle cells work is helping us work towards a potential cure for this disease.