Pediatric cardiomyopathy is a complex disease with many causes. It can be challenging to treat because of its different forms and variability in symptoms. It is important to work with an experienced pediatric cardiologist from a medical center that evaluates and manages a large volume of children with cardiomyopathy.
Selecting a Doctor and Medical Center
Selecting your child’s physician and place of care is an important decision. Your child’s doctor should be knowledgeable about pediatric cardiomyopathy and be willing to talk with you openly. The CCF-Cardiomyopathy Center of Care Program recognizes medical centers offering the highest level of care for children with cardiomyopathy. Hospitals that meet CCF’s specialty center criteria are usually academic teaching hospitals conducting cardiomyopathy research and follow a comprehensive care approach to managing their patients. This approach involves a team of medical and healthcare professionals who coordinate the child’s evaluation and treatment. The team may include a pediatric cardiologist, geneticist, neurologist, pediatric surgeon, and, when necessary, an electrophysiologist and the heart transplant team. A social worker, child life specialist, nutritionist, physical or occupational therapist, and psychologist also may be involved to assist with specific needs. Centers will vary in size, patient volume, staff training, and special services so families should make their selection based on the following:
Once you have selected a medical center and doctor, you may have specific questions about your child’s diagnosis and treatment plan. For a list of suggested questions to ask click here.
CCF-Cardiomyopathy Centers of Care
CCF maintains a listing of more than 40 cardiomyopathy centers of care, which includes information submitted by top cardiomyopathy specialty centers. This listing is available to registered CCF members through our online community, CCF Connect. If you are not a registered CCF member, click here to register. Registered CCF members can download certain center information through CCF Connect under the “Share/File Cabinet” tab. For medical professionals or hospitals interested in applying for center recognition, please review CCF’s center requirements and application instructions on our Cardiomyopathy Center of Care Program page.
For families who are not near a cardiomyopathy specialty center, CCF recommends arranging a consultation once or twice a year with a pediatric cardiologist at a CCF-cardiomyopathy center of care. After your initial consult, test results and treatment recommendations can be discussed with your local cardiologist, who will continue to monitor your child.