Lifelong care, from pediatric to adult congenital heart disease

Living with a condition like heart disease can be difficult for anyone. When you’re a child transitioning to adolescence, it can be even harder. That’s why Penn State Health has a congenital heart disease Transition of Care Program. It’s a complete source of wellness education for patients and families about the child’s specific congenital heart disease.

We recommend a gradual transition to adult care:

• Ages 12 to 15 - Help your child learn about their medical needs and how to manage their care. 
• Age 16 - Make an appointment to meet with members of the Transition of Care Program team.
• Age 18 or older - Fully transfer care to adult congenital heart disease (ACHD) providers.

The Transition of Care Program actively engages patients in activities and services that promote lifelong cardiovascular well-being. The program emphasizes education and:

• Helps children understand what to expect 
• Reviews their plans for necessary lifelong cardiac follow-up in the adult setting
• Provides supportive services to parents, guardians and family members

Making the transition to adult CHD care

Transitioning to adult CHD care begins with a mailer introducing the Transition of Care Program to pediatric patients aged 16 to 18. Patients aged 17 to 18 will then receive a call from our nurse navigator to schedule an official transition visit. During this visit, your child will meet the Transition of Care team and gain access to specialized services, such as consultations with a social worker.

Why is the transition from pediatric to adult congenital heart disease care important?

Many parents become used to managing their children’s doctor visits, medication administration, and specialized health needs and may not ensure their children are engaged in their own care. By the teenage years, many young adults with congenital heart disease (CHD) are not ready to advocate for themselves or fully understand their condition. This lack of knowledge and follow-up poses significant health risks. The Transition of Care Program addresses this by helping adolescents develop the skills needed to manage and understand their CHD independently:

• Understand insurance, including resources available.
• Navigate daily living challenges as they become independent, such as making sure they have a pharmacy and know the medicines they take.
• Be aware of preventive care because lifelong heart patients need to know how to check for related medical problems. Patients with cardiac issues sometimes suffer from depression, so they need to monitor their emotional well-being along with routine physical care, such as getting regular bloodwork for other related conditions.
• Make a smoother transition from a pediatrician to an adult doctor. Leaving the care of a trusted childhood doctor can be difficult for many.

Why choose Penn State Health for transitional congenital heart disease care

A patient’s best chance of living a long and healthy life with CHD is to maintain long-term, follow-up care with a specialized and experienced ACHD care team. The team at Penn State Health has this expertise. There are less than 500 board-certified ACHD cardiologists in the United States. We are proud to have six board-eligible/board-certified ACHD cardiologists at Penn State Health Milton S. Hershey Medical Center.

Everything ACHD patients may need for advanced care is under one roof at the Congenital Heart Center at Milton S. Hershey Medical Center, including:

• Congenital heart surgery
• Cardiac catheterization
• Electrophysiology procedures
• Complex imaging, such as cardiac computed tomography (CT), magnetic resonance imaging (MRI) and transesophageal echocardiogram.

Nationally recognized adult congenital heart disease care

The Penn State Health ACHD program has earned and maintained the Adult Congenital Heart Association’s Comprehensive Care Center accreditation, ensuring patients that they are receiving the highest level of care that aligns with national guidelines and standards. 

In the most complex surgical cases, our patients achieve the highest outcomes, exceeding the national average as reported by the Society of Thoracic Surgeons.

A camp for kids with special hearts

Camp Lionheart is a summer camp held annually for children 12 through 18 years of age with heart disease. Boys and girls with repaired congenital heart defects or cardiomyopathies have an opportunity to learn about their hearts and physical abilities in the company of other children with heart disease. The camp is held at Camp Kirchenwald, located about 10 miles southeast of Penn State Health Children’s Hospital, each year during the last week of July.