Once listed with UNOS, your child will begin the waiting period and may be called for transplant surgery at any time. Waiting time varies depending upon organ availability and the severity of your child’s illness. During this time, your child will be seen in the Intestinal Rehabilitation and Transplant clinic and follow-up testing at regular intervals will be necessary in order to maintain his/her position on the UNOS waiting list.
It is very important that the transplant center is contacted with any changes such as phone number, address and insurance coverage. If your child is hospitalized or his/her medical condition worsens, you must contact your transplant coordinator as soon as possible. It may be helpful to carry this contact information at all times should any question, concern or worsening in your child’s clinical condition arise unexpectedly.
While actively listed and awaiting “the call” for intestinal transplant surgery, you and your child will need to be available at all times. Timing of organ availability is unpredictable, so you may receive a call from your coordinator to come to the hospital any time of day or night. When an organ does become available, the child will be required to be admitted to the Cleveland Clinic immediately. The transplant will usually occur within hours of initial contact. If travel time to The Cleveland Clinic is more than a 2 hour drive, flight arrangements to accommodate the time sensitive nature of transplant surgery may need to be arranged. If this option is deemed necessary, your transplant coordinator will discuss this with you and assist with the arrangements at the time of listing.
Intestinal transplant is performed using organs from cadaveric donors. A cadaveric donor is an individual who has sustained brain death and consent has been obtained for organ donation. Living donor intestinal transplantation has a very limited role (as opposed to kidney and liver transplant). Living donation consists of procuring part of the intestine from a healthy individual for a recipient who is usually a small infant.
Organ donation is critical to the success of intestinal transplantation. The United States is divided into regions and each region is in turn divided into different Designated Service Areas (DSA) in order to facilitate and optimize the process of organ donation, procurement and allocation. The Cleveland Clinic is located in Region 10, which includes all of Indiana, Ohio and Michigan.