The Pediatric Advanced Heart Failure and Transplant Program at Norton Children’s Heart Institute, affiliated with the UofL School of Medicine, provides lifesaving, state-of-the art heart care. Since Norton Children’s Hospital’s groundbreaking infant heart transplant in 1986, we’ve performed 84 heart transplants. Here’s what you can expect from our transplant team.
Each child is thoroughly evaluated by Norton Children’s Heart Institute cardiologists, surgeons and staff. This evaluation period is critical in determining what a patient needs, from oral medications at home to a ventricular assist device (VAD) or even a heart transplant. Generally, the evaluation consists of the following tests:
These tests help the Norton Children’s transplant team:
Once the evaluation and tests are complete, all potential transplant candidates are presented to the Transplant Review Board. This board consists of multiple physicians, nurses and other specialists with a great deal of experience related to identifying patients for which a heart transplant is a good option. You will be notified of their decision after the meeting by a member of the transplant team and by letter from the review board.
Not every child who may need a transplant is suitable for a transplant. Reasons some children are not put on the heart transplant list include:
The waiting period can take days, weeks, months or years. Generally, the child can wait five months or longer for a heart. If you are from outside the Louisville Metro and Southern Indiana area, you will be asked to live within one hour of the hospital after being placed on the waiting list. The transplant coordinator must be able to contact you 24 hours a day.
After a child becomes a transplant candidate, his or her medical information is sent to UNOS (United Network for Organ Sharing) for placement on the national heart transplant waiting list. A patient can be listed as one of four statuses:
Changes in a patient’s UNOS status are made by the transplant service based on the patient’s clinical condition. If your child’s medical condition changes, the UNOS status is reviewed and updated. Hearts are allocated to children based on:
In order to be placed on a heart transplant wait list, patients must stay within one hour of the hospital at all times and must be available with their parents around the clock.
Many families outside of Louisville Metro and Southern Indiana area may have to make tough decisions about whether the entire family or only certain members relocate close to Norton Children’s Hospital. Your transplant social worker can help you research available housing options near the hospital and may help you manage relocation costs.
After your child’s transplant, their care will take place in Louisville. You will have to stay in the Greater Louisville area for six months following the transplant or until your child is cleared by the transplant care team.
The heart transplant process can be hard for families. Norton Children’s has many resources available to help you and your child through this process. You will have continued contact with a dedicated heart transplant social worker, child life therapy and the traditional members of your child’s transplant team. It’s important to reach out to family and loved ones, too. Your entire family will need the emotional support from loved ones during this time.