Journey to a Heart Transplant
Learning that your child’s heart will not be strong enough to carry him into adulthood can produce a range of emotions – from shock and confusion to anxiety and fear. We have conversations with parents and children sooner, rather than later, about what a heart transplant means and what’s involved.
Datasource: Transplant and Estefano
At Joe DiMaggio Children’s Hospital Heart Institute, we guide families, step by step, from initial diagnosis to lifelong follow-up after surgery. We find that when we explain the process and answer questions, parents and children feel more prepared. Below, we have briefly outlined the steps in the journey to a heart transplant.
Transplant evaluation is about gathering information and determining if your child is a good candidate for heart transplant.
At Joe DiMaggio Children’s Hospital, we usually split the formal evaluation process into two half-day visits, so that it’s not too much information all at once. During the evaluation, you will meet with many different people, including:
- Cardiologists and imaging specialists who conduct a series of tests to examine your child’s heart and immune function
- Heart transplant surgeons who will discuss the surgery they will perform
- Financial specialist who goes over your insurance benefits and answers any financial questions
- Nurse practitioner to review consent documents
- Psychologist and social worker to talk with you about the social and emotional aspect of transplant
- Additional specialists involved in caring for your child’s health before, during and after the transplant, such as a nutritionist, pharmacist and Child Life specialist
Getting on the Transplant List
As part of the evaluation process, we discuss possible alternatives to heart transplant, including medical and surgical therapies. A child who is not a candidate for alternative therapies may be eligible for a transplant.
For children who are potential heart transplant recipients, we will discuss their condition and outlook with you. With your agreement, we will list your child for cardiac transplantation at our center.
We will also place your child on the United Network for Organ Sharing (UNOS) list, which is a national waiting list. Children are listed with UNOS according to their level of medical urgency, their blood type and their body size.
We continue to care for children during this waiting period, keeping in mind that:
- Children with severe heart failure may have to wait in the hospital. These children will have a higher position on the UNOS list. They may require a ventricular assist device (VAD) to support them until the time of transplant.
- For children who can wait safely at home, we will see them monthly or more often to make sure their condition isn’t worsening.
- Waiting at home may require special equipment such as an automated external defibrillator (AED) to help care for your child.
Heart Transplant Surgery
When a heart becomes available, UNOS notifies our team, and we let you know immediately. You’ll need to be ready to come to the hospital right away when a heart becomes available for your child.
Because time is of the essence:
- You must come to the hospital as soon as you are called.
- Our team travels to the donor hospital to retrieve the organ as quickly as possible, within hours of getting the call.
- We prepare your child for the surgery, so that our surgical team and your child are ready as soon as the organ retrieval team arrives with the heart.
A heart transplant operation may take hours to complete. We keep parents informed every step of the way, so you always know exactly what is happening with your child.
Recovery After Surgery
After the surgery, we bring children to recover in the cardiac ICU, where parents can join them. In the ICU:
- Your child will be on a ventilator (breathing machine) right after surgery. We wean children off the ventilator as soon as they can breathe on their own again.
- Intensive care specialists and the transplant team will care for your child 24/7, including managing immunosuppression. Immunosuppression includes medications that lower the immune system to prevent a child’s body from rejecting the heart.
- Immediately after surgery and during recovery, your child will be receiving medication intravenously (via an IV). We will work to get your child on oral medications as soon as your child is ready.
The majority of children leave the hospital within two weeks after their heart transplant surgery.
Follow-Up After Heart Transplant
After you and your child go home from the hospital, you’ll come back for frequent follow-up visits to see how they are adjusting to their new heart. We ask you to stay close for the first 4-6 weeks after transplant, so that your child can visit the clinic frequently.
During these visits, we will monitor your child’s overall health and check for organ rejection. We’ll also perform blood draws and other testing. Conine Clubhouse, located across the street from Joe DiMaggio Children’s Hospital, offers short-term housing for our families.
We’ll continue to provide care for transplant recipients through adulthood. As adults, they “graduate” into our adult heart care program at Memorial Cardiac and Vascular Institute.
To schedule an appointment or learn about our award-winning pediatric heart team, call 954-265-3437.