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Becoming a Candidate for Heart Transplant

Listing with UNOS

Once the decision has been made to move forward with transplantation, your child will need to be put on the waiting list for a donor heart. United Network for Organ Sharing (UNOS) is the national agency that oversees all organ transplants and maintains the computerized list of people waiting for donor hearts.

 Your child will be listed based on his/her condition as Status 1A, Status 1B or Status 2 on the list.

  • Status 1A patients are the most critical and are at the top of the list to receive a donor heart. They require PICU hospitalization with breathing support and/or high-dose intravenous medications to help their heart work better. Children younger than six months with certain heart conditions may also be considered Status 1A.
  • Status 1B patients are next on the list and may or may not require hospitalization. They often need lower doses of intravenous medication to help their heart function while they wait. Children under 6 months or those with significant growth failure who do not meet the requirements for Status 1A will be listed as 1B.
  • Status 2 patients meet the requirements for transplantation but do not require intravenous medications or other hospital services. They are typically not hospitalized and only receive offers if there are no patients listed as 1A or 1B in their region.

Waiting for a Heart

The waiting time for a heart can vary from a few days to a few years and depends on multiple factors, including your child’s UNOS status, blood type and size. If your child is at home during this wait period he/she will be seen in our clinic on a regular basis in order for us to stay up-to-date on his/her status. Between visits it is important to contact the team of any changes in your child’s condition and to follow all instructions concerning his/her care. The call can come at any time, day or night, so we must have reliable contact information where you can always be reached.

If your child requires intravenous medications or other intensive care support he/she will have to wait in the Pediatric ICU until an appropriate donor heart is found. The period of time in the hospital can be extremely difficult for your child. We will assist with diversionary activities such as play therapy, art therapy and age appropriate volunteers who can spend time with your child with quiet activities.  If you do not live locally, our clinical social worker will assist you and your family with arrangements for the possible prolonged stay in Gainesville.