Our Pediatric Cardiomyopathy Services

At Lucile Packard Children’s Hospital Stanford, we offer multidisciplinary services to diagnose and treat cardiomyopathy in children of all ages. Many families find us by way of their pediatrician or a specialist, who become aware of a family history of cardiomyopathy, are treating conditions that may include cardiomyopathy, or for concerning symptoms in their patient that might relate to the heart. Many of these providers and our patient families seek our care due to the accurate cardiomyopathy diagnosis and comprehensive management we offer. Still others come to us for a second opinion. However you find us, we are ready to support you and your child.

After diagnosing your child’s cardiomyopathy, we provide evidence-based treatments, including cardiac monitoring, heart medicine, and heart failure treatments. 

Advanced diagnostics for cardiomyopathy

During your child’s comprehensive evaluation, we use the latest cardiac imaging techniques and diagnostic tools to accurately identify the type of cardiomyopathy and the impact on your child’s heart function. We use sophisticated genetic testing to determine the cause of your child’s cardiomyopathy, partnering with other Stanford Children’s Health specialty teams if there is suspicion of related noncardiac disease, such as muscular dystrophy or a metabolic genetic disorder.

  • Diagnostic testing and cardiac imaging. Besides lab tests, your child may need an electrocardiogram (EKG), echocardiography, a cardiac MRI, an exercise stress test, or an evaluation for arrhythmia (an irregular heartbeat), including ambulatory heart rhythm monitoring.
  • Genetic testing and counseling. Cardiomyopathy can be inherited as a gene that is mutated or changed. Your child may undergo sophisticated cardiogenomics, or pediatric cardiac genetic testing, to determine whether there is a genetic risk for cardiomyopathy and if other family members are at risk. Sometimes, a child may show symptoms but a parent does not, or vice versa.

Cardiomyopathy care management

From the first time we see your child for an in-person diagnostic consultation, we map out a comprehensive care plan to ensure that he or she receives the very best care possible. We start by addressing any immediate needs, such as arrhythmia or heart failure symptoms, to help your child regain health. We then closely monitor your child’s cardiomyopathy with regular visits over time, adjusting the care plan as needed to preserve optimal health.

Virtual appointments

For our families who do not live in the area, we offer virtual appointments via telemedicine in order to assist monitoring your child’s disease throughout his or her lifetime.

Continued care for adolescents

Since cardiomyopathy is a lifelong chronic condition, we help your older child transition to adult care when the time comes. We collaborate with Stanford Health Care’s Center for Inherited Cardiovascular Disease to ensure a smooth transition of care, connecting young adults with their new providers at Stanford Health Care, as well as coordinate referrals to providers outside of our system.

Nutritional services

As part of our multidisciplinary offerings, your child will see a pediatric clinical nutritionist to help achieve a healthy weight. We help children with cardiomyopathy gain weight and receive optimal nutrition. Sometimes, children with cardiomyopathy can become overweight because of restrictions on exercise. We partner with our Center for Healthy Weight to support your child with resources, education, and treatment.

Sports participation counseling  

Hypertrophic cardiomyopathy symptoms can often worsen with exertion. In addition, cardiomyopathies with electrical conduction abnormalities are hard to predict and may have higher risks associated with sports activities. Maybe you’ve been told that your child cannot participate in sports. As physical activity is an important part of your child’s health, both physically and emotionally, sports participation counseling and testing is an important part of our Cardiomyopathy program. 

Patient and family support

We help you to cope with your child’s cardiomyopathy through ongoing counseling and education. We are here to answer all of your questions about how it will affect your child’s life, from sports and physical activity to school and social outings. 

When you are visiting our Betty Moore Children's Heart Center, we welcome you to take advantage of our hospital’s extensive patient and family services. If you have nonmedical needs, including emotional support, help with understanding your child’s condition, interpretation services, or help with finances and housing, our social workers are great resources. Our popular Child Life and Creative Arts department provides fun activities for all of your children during a hospital stay.

If your child needs an implantable cardioverter defibrillator (ICD), or experiences heart failure and requires advanced cardiac therapies such as a VAD or heart transplant, our specialized psychologist helps your family adjust, as part of our Pediatric Cardiac Psychology Program.   

Educational events

To help you understand cardiomyopathy and connect with other families, we offer a variety of educational events, including:

  • Affairs of the Heart. We partner with Stanford Health Care’s Center for Inherited Cardiovascular Disease to offer this family education event every two years.
  • Children’s Cardiomyopathy Foundation Webinar. The Children’s Cardiomyopathy Foundation (CCF) offers webinars to children and their families. Webinars are available at no cost and are open to parents, friends, relatives, and professionals registered with CCF. Beth Kaufman participates regularly in these events.
  • Duchenne Muscular Dystrophy (DMD) Patient Education Day. This informational day is for parents and caregivers to get updates on DMD research, clinical trials, and care considerations for DMD, to make sure you have the most up-to-date information on caring for your child.
  • MyHeart Counts. We invite young adults 18 and over to participate in this global cardiovascular research study using iPhones to monitor heart activity and health.

If interested, call or email us about our upcoming events.