The Congenital Heart Center at C.S. Mott Children’s Hospital has developed a team-based approach to care for patients and families affected by HCM and other inherited cardiomyopathies. The team includes cardiologists who specialize in cardiomyopathy, heart failure and rhythm disorders among other subspecialties. The team also includes a nurse practitioner, genetic counselor, social worker and child life specialist. Counselors familiar with the challenges of an HCM diagnosis are also available for support.

Mott is a Children’s Cardiomyopathy Foundation (CCF) accredited center of care. CCF recognizes centers that manage a high volume of pediatric cardiomyopathy patients, offer a variety of pediatric patient services, specialize in the treatment and management of cardiomyopathy in children, and are affiliated with an academic research institution. 

We participate in a variety of research projects aimed toward improving the health outcomes and quality of life for children and families with cardiomyopathy.

Transition to Adult Care

HCM is a progressive condition that is more common in adults. For this reason, we work very closely with our colleagues in adult cardiology at the Frankel Cardiovascular Center’s Inherited Cardiomyopathies & Arrhythmias Program to create consistency for patients and families as patients transition from childhood to adulthood. We meet monthly to discuss patient care issues, to update research activities and to identify opportunities to enhance or improve care practices. In addition, both the adult and pediatric teams are assisted by the same genetic counselor who provides care for the whole family, coordinates family screenings and facilitates follow-up.

To make an appointment with our team, or to learn more about the Congenital Heart Center, please call 734-764-5176.

While many children with HCM have no symptoms, some may experience symptoms with exercise which may include: 

• Lightheadedness
• Difficulty breathing
• Chest pain

HCM has been linked to life-threatening abnormal heart rhythms that result in syncope (passing out or loss of consciousness) or sudden death. It is a common cause of sudden death in young athletes. HCM is a progressive condition (meaning it can get more severe with time) and your child will need to be monitored regularly as they get older.

There are a few factors that trigger an initial HCM evaluation. These include: 

• Family History: HCM is quite commonly an inherited condition and many children with HCM are identified during family screenings after another family member has been identified with the condition. Even children who have no previous family history of HCM can pass it on to their children (as the condition may be due to a new genetic mutation that can now be passed on).
• Symptoms: Possible symptoms include palpitations ("heart-racing" or "skipping heartbeat"), chest pain and shortness of breath with physical activity, and fainting (syncope).
• Physical Findings: The exam is usually normal other than a heart murmur.

There are several ways HCM can be treated, including:

While HCM can be a serious problem, most children have no symptoms and are at low risk of a dangerous heart arrhythmia leading to sudden death. They should be monitored regularly depending on their age, symptoms and degree of heart thickening. 

HCM is a progressive condition, meaning that it will get worse as a person gets older. However, the rate, timing and degree of progression can vary from one person to the next. Perhaps the greatest rate of change occurs when children become teens (adolescence). They should be followed more closely during this time so that their exercise guidelines and risk assessments can be updated appropriately.