For children with serious congenital heart defects or acquired heart disease who require a heart transplant, our expert team provides the comprehensive care they need to live active, fulfilling lives.
When a heart transplant offers the best hope for a child with a life-threatening heart problem, our team has the experience to help. The Johns Hopkins All Children’s Heart Transplant team includes cardiothoracic surgeons, pediatric cardiologists, nurse practitioners and nurses who work together to treat complex heart disease through heart transplantation.
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. Our expert 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 are designated as an ECMO center of excellence by the Extracorporeal Life Support Organization (ELSO), and we were the first pediatric center in Florida to use a ventricular assist device (VAD).
Our heart transplant program is approved by the United Network of Organ Sharing (UNOS), and our transplant team members participate in the Pediatric Heart Transplant Society and the International Society for Heart and Lung Transplantation.
Ongoing patient and family education and support in the post-transplant years is an important part of your child’s care, to help him or her lead an active and fulfilling life and prepare for the journey into adulthood. Because we know your child’s 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?
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.
Our team of pediatric heart surgeons and cardiologists specializes in treating complex cardiac problems. They work to avoid heart transplant whenever possible; however, children are eligible for a heart transplant if they have a heart problem that cannot be treated otherwise, and the survival expectancy is less than a year.
What to Expect Before and After Heart Transplant
Before Heart Transplant
Your child will receive an evaluation by our care team 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 also will 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.
Once your child is placed on the donor waiting list, the wait may be a few days to several months. Several factors are considered when matching a donor heart to a patient, and it is impossible to know how long a person may wait before being matched.
While your child is on the heart transplant list, our heart transplant coordinator will stay in touch with you between outpatient visits to provide updates, such as any changes in your child’s waiting list status or changes in their follow-up schedule. Your child will be seen for outpatient visits as needed depending on his or her condition, and may require additional treatments to support his or her heart while awaiting transplantation. These treatments could include anticoagulants, intravenous medications or mechanical circulatory support (ventricular assist devices), etc.
The heart transplant surgeon and/or transplant cardiologist will be notified if a donor heart becomes available for your child. They will decide if additional information or tests are needed on the donor heart and determine if the heart is suitable for your child.
The heart transplant coordinator will contact you if a donor heart becomes available for your child. The coordinator will inform you of next steps, which could include waiting for another call and either remaining at home or preparing to come to the hospital, or you could be asked to come to the hospital as soon as possible.
While every effort is made to determine as early in the process as possible whether the donor heart is suitable for your child, it is possible that the transplant team may ultimately determine the available heart is not suitable. We understand this can be very disappointing for a family; however, our team is committed to providing our patients with the highest standard of care, and will not proceed with a transplant if the donor heart is not the optimal heart for your child.
What to Expect After Transplant Surgery
First few days after heart transplantation
Immediately after surgery, your child will be transferred from the operating room to the cardiovascular intensive care unit (CVICU) to receive further care. The CVICU team includes pediatric cardiologists, heart surgeons, cardiac critical care physicians, respiratory therapists and other pediatric experts who care for our patients after surgery. In the CVICU, your child will recover from the surgery and begin treatment with any needed medications to prevent rejection of the donor heart. Your child will most likely remain in bed and will be able to eat or drink by mouth in the first few days after the transplant.
Preparing for Discharge from the Hospital
Most of our patients are able to leave the hospital within four weeks after transplant. Our team helps your child and family become comfortable and confident with the medications and self-care that are needed after a heart transplant.
Several days before your child is discharged, we will review your child’s medications with you, including dosage amounts, a schedule for giving the medications, and how to keep track of the medications after leaving the hospital. Prescriptions for your child’s medications may be filled by the Johns Hopkins All Children’s Retail Pharmacy or your local outside retail pharmacy a few days before discharge. This will provide you enough time to practice measuring doses and to become comfortable with giving your child his or her medications before leaving the hospital.
We will review complete information about your child’s follow-up visits and any signs of possible issues your child may experience after transplant that you should be aware of before discharge. The immediate risks of transplantation include any risks associated with open-heart surgery and may be increased based on your child's clinical condition before heart transplant.
Follow-Up Care After Heart Transplant
The transplant coordinators arrange follow-up clinic visits, lab work, echocardiograms and heart catheterization with biopsies, as well as assist with other needs. We can also help coordinate temporary homeschooling for your child after you return home. In addition to coordinating your child’s medications, we also help our patients' primary care physicians understand the special health care needs of post-transplant patients to ensure continuity of care.
Outpatient visits at Johns Hopkins All Children’s Hospital take place very frequently during the first year, and then gradually transition to just a few visits per year. The goal is for our transplant patients to become healthy and independent adults.
Heart Transplant Follow-Up Clinic Location
We provide outpatient care in our Transplant Follow-up Clinics in the Outpatient Care Center located across the street from the main 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.
Meet Our Team
Meet the heart transplant specialists providing care to our patients.
For more information or to make an appointment, please call us.
A heartwarming “first practice” for 15-year-old Wilfre.
14-year-old Wilfre arrived at the Emergency Center at Johns Hopkins All Children’s Hospital. His heart was failing him and time was of the essence.