SUPPORT SERVICES

How can I find the best doctor for my child?

Since pediatric cardiomyopathy is relatively rare, not every physician has experience treating children with the disease. Cardiomyopathy is complex in that there are several forms of the disease and with each form, a variety of possible causes with different degrees of manifestations. Unlike diseases like children's cancer, there is no standardized treatment protocol. These reasons explain why it is essential to find a physician at a medical center that regularly evaluates and manages a large number of children with cardiomyopathy.

Scattered around the United States are a handful of specialized pediatric cardiomyopathy clinics or cardiovascular genetics programs. These comprehensive care centers vary slightly from institution to institution but are usually located at leading transplant hospitals with expertise in heart failure. These specialized centers are unique in that they take on a coordinated team approach to evaluating and managing a child with cardiomyopathy. Often this multi-disciplinary approach brings together the expertise of a pediatric cardiologist, geneticist, neurologist, pediatric surgeon and when necessary the heart transplant team. Some programs also include a social worker and psychologist to address the unique needs and challenges that cardiomyopathy families face. All of CCF's medical advisors are affiliated with a pediatric cardiomyopathy comprehensive care center. CCF also maintains a list of 500 physicians in the U.S. and Canada who have a clinical or research interest in pediatric cardiomyopathy. This list was developed based on CCF's research of top children's hospitals, self-designation by medical centers and physicians specifying an interest in the disease.

If you would like a listing of physicians in your area, please contact the Foundation with your criteria and background information. Please note that the Children's Cardiomyopathy Foundation (CCF) provides this information as a courtesy only and does not certify, recommend or warrant the quality of care provided by any of the institutions listed.

Families can evaluate these centers by making a personal inquiry into the nature and scope of services provided, the number of similar cases handled in the past, the availability of different specialists, the coordination of care across the various specialist departments, and all related cost and insurance issues.

What should I do if I cannot get to one of the specialty clinics?

If you need a diagnostic evaluation or would like a second opinion on treatment but cannot obtain a consultation at any of the specialized centers, you can contact the cardiology and genetics department of any major medical center or children's hospital affiliated with a medical school. While a full evaluation (echocardiogram, EKG and if necessary Holter Test) with a pediatric cardiologist is usually the first step, a geneticist familiar with disorders related to pediatric cardiomyopathy should also be included in the diagnostic evaluation. Together, the cardiologist and geneticist will be able to advise you on family screenings, genetic research and clinical genetic testing to investigate the cause of cardiomyopathy, to evaluate family risk factors and to develop a targeted treatment plan.

You can also interview doctors on your insurance plan to assess their knowledge of pediatric cardiomyopathy and find out how many patients their center or practice treats annually. CCF can help put you in touch with other CCF families in your area who can provide input on their doctors and treatment experience. The goal should be to find a doctor who is knowledgeable, willing to talk with you, accept recommendations for care from specialty consultations you obtain, and review any information about the disease you gather from other sources.

Another option is to get a one-time distant consultation with a doctor at a specialty center and bring the recommendation to your local doctor. The consultation can be done either in person or by phone after mailing your child's medical records. Even if you travel for a consultation, you will still need to maintain a relationship with a local doctor for monitoring.

Diagnosing and caring for a child with cardiomyopathy can be an involved process. More information can be found on our website under the About the Disease and Coping and Healing sections.