Intestinal and Multivisceral Transplant | Listing and Waiting

At the conclusion of the evaluation, the transplant team will inform you of the results. They will also communicate these findings to your child’s primary care physician. Generally, there are three possible recommendations:

  • The evaluation has identified other treatments or medications available that should be considered prior to an intestinal/multivisceral transplant; therefore, your child is deferred.
  • The evaluation has determined that an intestinal/multivisceral transplant is the appropriate treatment option.
  • The evaluation has identified factors that make an intestinal/multivisceral transplant contraindicated (not recommended) or not possible.

In all of these situations, the transplant team will work closely with you and your child’s physicians to develop a coordinated care plan.

Listing for transplantation

Once you and your child’s doctors decide that an intestinal/multivisceral transplant is the most appropriate treatment option, your child will be listed on a national computer system, United Network of Organ Sharing (UNOS), as a potential transplant recipient. UNOS matches organ donors by weight and blood type with children waiting for new organs. The wait can be from days to months or years depending on the severity of illness, type of transplant needed, and size of child. It is important that we are able to reach you at all times. Transportation arrangements should be planned by the recipient’s family to reach the hospital in a timely fashion.

The goal while your child is waiting on the transplant list is to preserve your child’s current liver and intestinal function and to ensure the best quality of life possible. We will work closely with you and your child during the waiting time. Your child will have frequent visits to the hospital for periodic check-ups including physical examinations and blood work.

Overall, children and adolescents have done well emotionally with this waiting period. There is no question that it is stressful to wait. As parents, the implications of waiting for another child to die so that your child may live are profound and sometimes overwhelming. The transplant team stands ready to support you and your child during this waiting period.