Adult Congenital Heart Program

Thanks to advances in medical and surgical care, children born with congenital heart defects are now surviving long into adulthood. The future is promising for people with congenital heart disease (CHD), but there are medical problems that can arise years later. People with CHD need continued care throughout their lives and are best served by clinicians who understand and are trained to care for their unique and complex needs.

Some adults with CHD may think that their heart condition was treated or repaired when they were younger. If they don't have symptoms, they may feel that they don’t need to see a cardiologist anymore. Depending on the heart defect, problems can arise as time goes on. Adults may need a specialist trained in adult congenital heart disease (ACHD) to monitor potential medical problems in the future.

Expert care for people of all ages with CHD

At Children’s Mercy, the medical providers in our Adult Congenital Heart Disease Program are experts at treating and monitoring both children and adults with CHD. They also specialize in helping teens transition smoothly from child to adult care of congenital heart defects.

Our team of experts treats children and adults with all forms of congenital heart disease. We specialize in the most complex cases, including:

We partner with Saint Luke’s Hospital and The University of Kansas Medical Center to provide a seamless transition from pediatric to adult care. The specially trained ACHD providers at Children’s Mercy also see patients at both adult hospitals to assist in the transfer of care and follow-up. We are dedicated to the process and the success of people of all ages with CHD.

CHD transition program for young adults

Our transition program works with cardiac patients ages 15 years and older who currently see a Children’s Mercy provider. If you are a CHD patient between the ages of 18 and 22, we will help you start the transfer process to an ACHD provider.

Beginning the process

• A transition nurse, with experience in cardiology and special training in the teen transition process, works with the ACHD team at one of the collaborative hospitals to begin the transfer process.
• At your routine CHD clinic visits, your care team will provide education about the transition process to help you gradually get ready. They will provide resources like health education, diagnosis-specific information, medication education and management, and support groups for both you and your caregivers.

Transferring to an adult provider

• Once you and your team feel you are ready to transfer care, we will set up a telehealth appointment with a Children's Mercy ACHD provider, our ACHD nurse coordinator, and the adult hospital ACHD coordinator. This meeting helps to make sure everyone is on the same page and understands your unique needs.
• We develop a plan with you that is specific to your needs and based on your personal learning needs and transition goals. Your caregiver is an important part of the transition process and we offer support to them as well.
• We aim to make sure you have a good knowledge of your medical condition, including any corrective surgery, ongoing medical management, lifestyle choices and health care. Our ACHD nurse coordinator is also available to assist you at your first appointment with your adult provider if needed.