Johns Hopkins All Children's Heart Institute

Pediatric Heart Transplant Program

We provide comprehensive care for children with congenital heart defects or acquired heart disease who need a heart transplant.

When a heart transplant offers the best hope for a child with a life-threatening heart problem, our team has the experience to help. Our pediatric heart transplant program has performed more than 188 neonatal and pediatric heart transplants for patients with congenital heart defects or acquired heart disease. We provide expert follow-up care for patients who have received transplants, including outpatient and inpatient care, cardiac catheterization and biopsies. 

Our team can provide a range of cardiovascular support services, including full mechanical support of the heart with extracorporeal membrane oxygenation (ECMO) and ventricular assist devices. We're designated as an ECMO center of excellence by the Extracorporeal Life Support Organization, and we were the first pediatric center in Florida to use a ventricular assist device (VAD).

We offer ongoing patient and family education and support in the post-transplant years, including a patient/family support group. We help our post-transplant patients lead active and fulfilling lives as they prepare for their journey to adulthood. Because we know their unique medical and cardiac history, we continue to provide post-transplant cardiology and adult congenital heart disease services into adulthood. 

Why a Pediatric Heart Transplant?

Our team of pediatric heart surgeons and cardiologists specializes in treating complex cardiac problems. They work to avoid heart transplant whenever possible. Some children are born with congenital heart defects that can't be corrected by surgery, while other patients may develop life-threatening cardiomyopathy, a disease of the heart muscle. A heart transplant replaces the patient's diseased heart with a healthy donor heart.

Before Heart Transplant

Our team will evaluate your child to explore all medical and surgical treatment options, including heart transplantation. We will perform diagnostic procedures that may include cardiac catheterization, heart biopsies, CT scans and cardiac MRI. We will also evaluate your child's overall health and immune system.

If the evaluation shows that transplantation is the best option, we will place your child's name on a waiting list with the United Network for Organ Sharing (UNOS), which matches donor organs with children and adults in the United States who need a transplant. Some children can be at home while waiting for a transplant. Others stay in our cardiovascular intensive care unit (CVICU) and are cared for by the experts on our heart transplant and heart failure team until a donor heart becomes available.

Follow-Up Care After Heart Transplant

Most of our patients are able to leave the hospital within four weeks after transplant. We work closely with families to prepare for life at home after transplant.

The transplant coordinators arrange follow-up clinic visits, lab work and biopsies and help with other needs. We can also help coordinate temporary homeschooling for your child after you return home. We will help coordinate all of the medications your child will need to take once you are discharged from the hospital. We also help our patients' primary care physicians understand the special health care needs of post-transplant patients to ensure continuity of care

Our team helps the family and the patient become comfortable and confident with the medications and self-care that are needed after a heart transplant. Outpatient visits at Johns Hopkins All Children’s Hospital take place frequently at first and gradually transition to just a few visits per year. The goal is for our transplant patients to become healthy and independent adults. 

Heart transplant patients who are admitted to the hospital receive care in our 22-bed cardiovascular intensive care unit (CVICU) or the pediatric intensive care unit (PICU). The CVICU has individual patient rooms with sleeping accommodations for two parents.

Heart Transplant Follow-Up Clinic Location

We provide outpatient care in our Transplant Follow-up Clinic in the Outpatient Care Center located across the street from the hospital on the St. Petersburg campus.

Between clinic visits, lab testing and other diagnostic tests may be performed at several of our Outpatient Care locations.
 

Patient and Family Support

Learn more about how we work to support your child and family during all stages of your child’s treatment. 

Learn More

Meet Our Team

Meet the heart transplant specialists providing care to our patients.

Contact Us

For more information or to make an appointment, please call us.