Pediatric Cardiomyopathy Frequently Asked Questions

What can we expect on our first visit?

When you come to us to determine if your child has cardiomyopathy, we consider ourselves detectives who are looking for clues to what is causing your child’s particular disease and how it is affecting him or her. Your child will receive a full diagnostic evaluation, including a comprehensive family history and physical exam, and typically an electrocardiogram (ECG) and detailed echocardiogram. We will coordinate any additional imaging and testing for the same day if possible, including genetic testing and counseling if indicated. You and your child will meet with our multidisciplinary team of experts to gain a holistic view of your child’s needs. At the end, we will discuss our findings with you and outline a care plan. Expect to spend two to three hours with us, including time for an echocardiogram, varying depending on what tests and consultations are required.

What can we expect at follow-up visits?

Cardiomyopathy demands lifestyle adjustments and a lot of counseling and education. Your child may not need treatment right away, but we help you navigate life with this chronic disease, including determining strategies for exercise and nutrition. We like to see your child regularly to provide cardiac monitoring so we can detect any signs that the disease is progressing and act quickly.

Is there a cure for cardiomyopathy?

While there is currently no cure for cardiomyopathy, our physician-scientists are continually performing novel research to discover new treatments for the disease. By catching it early, living a heart-healthy lifestyle, and following a care plan, your child can live a full life. Advanced heart failure therapies, including ventricular assist devices and heart transplantation, are established therapies that continue to improve outcomes for children with advanced cardiomyopathy.

How do you work with us when we live far away?

We are happy to partner with your child’s local cardiologist to provide ongoing care for your child. After you see us for an initial visit, we will set up an individualized follow-up plan, including your local team and telehealth resources, to answer any questions and make sure that your child’s care is up to date and on track.