Pediatric Heart Transplant Waiting List

Learn More About Organ Donations

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.

Who organizes organ transplants?

United Network for Organ Sharing (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.

What happens after a child is evaluated?

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 website.

The child will be listed as a Status 1A, Status 1B, Status 2 or Status 7 on the heart transplant waiting list.

     
 
WaitingListLevels

    Status 1A
    The patient must meet at least one of the following conditions:

    • Needs help breathing with a ventilator.
    • Needs support with a mechanical device such as ECMO or ventricular assist device (VAD).
    • Is less than six months old with heart disease and needs continuous prostaglandins (PGE).
    • Needs certain IV medications, known as inotropes, at a high dose or more than one.
    • Is expected to live less than 14 days without a heart transplant.

    Status 1B
    The patient meets at least one of the following conditions:

    • Needs I.V. medicine, known as inotropes, at a low dose.
    • Is less than 6 months old and does not meet status 1A criteria.
    • Cannot grow at a certain rate.

    Status 2 
    A patient is due a heart transplant but does not meet the criteria for Status 1A or 1B.

    Status 7
    A patient is inactive on the transplant list (for example, he is too sick or too healthy to accept an organ).

 
     

How does the donor process work?

  1. A heart is donated from someone who has been declared "brain dead" and whose family has agreed to organ donation.
  2. The donor's medical information is put into the UNOS database.
  3. UNOS notifies Children's that a heart is available.
  4. the transplant surgeon and team review whether to accept or decline the organ. This is based on whether the heart is a good match for your child.
  5. The transplant coordinator calls you when a heart that is a good match for your child is available.
  6. 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 matching process include:
    -  Location of the heart and the child
    -  Amount of time the child has been on the waiting list
    -  Size of the child
    -  Status of the child
    -  Blood type: Your 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 types, as their immune systems are not yet fully
       mature. 

What can I learn about the organ donor?

Families often want to know the age of the donor and how the donor died. Information about the donor cannot 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 the death of their child.

If families wish, they can 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 will forward it to the donor family.