Pediatric Heart Transplant Waiting List

If the child, family and the heart transplant team decide that a pediatric heart transplant is the best option, the next step is to place the child on the waiting list for a donor heart.

UNOS is the national agency that oversees organ transplant. This agency works with our local procurement agency, LifeLink of Georgia, to recover organs. UNOS also maintains the national computerized list of people waiting for heart transplants.

Once the child’s heart transplant evaluation is done and a decision has been made to move forward, the heart transplant coordinator will place the child on the heart transplant waiting list through the UNOS secure Web site.

The child will be listed as a Status 1A, Status 1B or a Status 2 on the heart transplant waiting list.

  • Status 1A patients are the most critical. They are in a hospital intensive care unit (ICU) with breathing support or on high-dose intravenous (I.V.) medicines to help their hearts work better. Children younger than 6 months and children with certain heart conditions are also Status 1A.
  • Status 1B patients need low doses of intravenous inotropic drugs (heart medicines that temporarily improve heart function) or have growth failure due to their heart disease.
  • Status 2 patients are on the active list for heart transplant, but do not meet the standards for Status 1A or 1B.

UNOS Donor Matching Process

  1. A heart is donated from a person who has just died.
  2. The donor’s medical information is put into the UNOS database.
  3. The UNOS notifies Children’s that a heart is available.
  4. When a Georgia donor heart becomes available, UNOS checks for all Status 1A patients with the proper blood type and body size listed at Georgia transplant centers.
  5. The Status 1A patient who has waited the longest as a 1A will receive the donor heart.
  6. If there are no Status 1A patients listed in Georgia, the donor heart goes to the Status 1B patient listed at a Georgia transplant center who has been listed the longest.
  7. If there are no patients listed in Georgia of the proper blood type and body size listed as a Status 1B, the donor heart will go to the patient who has been listed the longest as a Status 2 in Georgia.
  8. If there are no patients listed as Status 2 in Georgia of the proper blood type and body size, the donor heart goes to the patient in the region who has been listed the longest as a Status 1A.
  9. The heart transplant surgeon and team review whether to accept or decline the heart. This is based on whether the heart is a good match for the child.
  10. The Children’s Heart Transplant coordinator calls the family when a heart that is a good match for the child is available.

To understand how patients are matched on the national waiting list, think of the list as a “pool” of patients. When an organ is available, UNOS searches the entire “pool” for a match.

Factors involved with the matching process include:

  • Status of the child.
  • Location of the heart and the child.
  • Amount of time that the child has been on the waiting list.
  • Size of the child.
  • Blood type: the child can receive a heart from a person with the same or with a compatible blood type. Infants may be eligible to receive any blood type as there immune systems are not fully mature.

About the Donor

Families often want to know the age of the donor and how the donor died. Information about the donor is not able to be shared. Likewise, information about the heart transplant recipient and his family will not be given to the donor’s family without consent.

LifeLink will follow up with the donor family to let them know which organs were successfully transplanted. If the transplant recipient's family gives permission, we will give LifeLink a small amount of non-identifying information about the child. LifeLink strongly believes that following up with the donor’s family helps them move forward as they grieve for the death of their child.

If families wish, they can also write a letter to the donor’s family that does not include identifying information. The Children’s Heart Transplant coordinator will send the letter to LifeLink of Georgia, which then forwards it to the donor family.