Heart Transplant: What to Expect

What is a heart transplant? Why might my child need one? What is the process for heart transplantation?

Heart transplantation replaces a poorly functioning heart with a healthy heart from a human donor. Heart transplantation may be required when a child’s heart cannot undergo surgical palliation (single ventricle or other congenital heart disease) or when the heart muscle itself is abnormal (cardiomyopathy). 

The road to pediatric heart transplantation can be a long journey for some families, while for others the need may arise quickly and unexpectedly. 

Initial Evaluation

Every patient needs an initial evaluation to ensure heart transplant is the right treatment. Your child will have a visit with our Pediatric and Adult Advanced Cardiac Therapies (PAACT) team to confirm their diagnosis and obtain any necessary imaging or blood work.

Pre-Transplant Evaluation

Once our team of specialists determines that a heart transplant is an option for your child, the Pre-Transplant Evaluation will start. During this time, our team of multidisciplinary specialists will monitor your child’s condition and manage their care in the appropriate setting. In some cases, it may be possible to have your child at home during the evaluation, but if your child requires inpatient care, the evaluation will continue while they are in the hospital.

You will also speak with our team about your child’s health and illness, the transplant process, risks and benefits of transplantation. We will also share what to expect before, during and after surgery. In an emergent case, the evaluation will take place in 24-48 hours. The evaluation process is designed to thoroughly discern a patient’s need and suitability for transplantation. In some cases, the evaluation process may reveal some additional tests that need to be done before listing.

Committee Meeting

Once the evaluation is completed, our multidisciplinary committee will meet and review your child’s case in detail. The purpose of the committee meeting is to determine that transplant is the best option for your child and to identify any further testing or data that may help inform the transplant evaluation. Once this process is completed and the committee agrees that heart transplantation is the best treatment option, your child will be listed for a heart transplant. Once your child is listed, our team will be in frequent contact with your family to ensure your child remains ready for heart transplant. It will be important for you to report any changes in your child’s health, keep all appointments with our providers and keep all lab work up to date so we can ensure the best and most timely heart transplant possible for your child. This can be an uneasy, unpredictable time, and our team will be there to support you.

Transplant Episode

In some cases, it will be possible for your child to remain at home until transplant. In many situations, your child will have to remain in the hospital until a heart becomes available.

When your child’s team receives notification from UNOS that a heart is available, you will be informed, and arrangements will be made for your child to go to the operating room to receive the heart transplant. The transplant operation can be set up over several hours to a few days. When the transplant operation is over, your child will recover initially in the Cardiac ICU. During this time, our team will be very busy looking over your child head-to-toe every day. We will keep you updated about their clinical progress in real time.

Post-Transplant Care

Post-transplant care will begin as soon as your child’s transplant is finished. This will be a comprehensive care plan built by the PAACT team and tailored to your child’s needs. We will work with your family to help your child heal as quickly as possible in the greatest comfort possible. Care will include medication monitoring and adjustments, routine laboratory testing, echocardiogram evaluation of your child’s heart and other tests as needed. Our goal is to provide a smooth transition to home, with a care plan your family feels comfortable managing. Initially, visits to our outpatient clinic will be at least monthly. As your child recovers these will be spaced out.

Our Team of Experts

The PAACT team includes cardiologist, surgeons and many other experts who have special training in pediatric heart transplantation and related patient needs. Your child will be cared for by a team that includes all of the following pediatric experts (and more if your child has other health conditions or needs):