FAQ for Patients
How is my child evaluated as an intestinal transplant candidate?
Small intestine transplant evaluation is similar to liver transplant evaluation. It is important that the child have a good history of central line placement, IV access, upper gastrointestinal studies, number of gastrointestinal resections, and length of bowel to ensure that transplantation is the best medical option. In some cases, we can use our expertise in total parenteral nutrition (TPN) to improve the child’s health and eliminate the need for transplantation.
Each child referred to the Pediatric Intestinal Transplant Program as a transplantation candidate undergoes a multidisciplinary evaluation tailored to the child’s needs:
- Medical, surgical, and support staff consultations
- Transplant surgeon - the physician who actually performs the procedure and follows the child both before and after surgery
- Gastroenterologist - a specialist in diseases of the stomach, intestine, and associated organs who helps manage your child before and after surgery
- Hepatologist - a specialist in diseases of the liver who helps manage your child before and after surgery
- Transplant coordinator - registered nurse who follows the child through the transplant evaluation, lists the patient according to UNOS guidelines, educates the family regarding pre- and posttransplant patient care and serves as a liaison to the patient, transplant team, and referring physician
- Nurse practitioner/inpatient coordinator - a specialist in wound and ostomy care who provides continuity of care to intestinal transplant patients and does all the pre- and postoperative patient teaching and discharge planning
- Nutritionist - the professional who determines the nutritional plan for the child, including enteral feeds and TPN, and assesses caloric needs and growth
- Blood tests
- Imaging studies and other tests
- Ultrasound of the liver in combined intestinal-liver transplants
- CT scan (computerized tomography)
- MRI (magnetic resonance imaging) to map abdominal vasculature
- Endoscopy (EGD)
- Mobility studies
- Liver biopsy for combined liver-intestinal patients to determine whether TPN damage is reversible
- Psychosocial and developmental evaluations
- Social worker
- Child development expert
After these assessments and tests are complete, our team of experts meets with the family and discusses all treatment options. If the child is a candidate for intestinal transplantation, his or her name is added to the transplant waiting list for an isolated intestinal transplantation or for a combined liver and intestinal transplant, based on the severity of organ damage and dysfunction. Transplant waiting lists are maintained by the United Network of Organ Sharing (UNOS).
UNOS is a private non-profit organization that works under contract to the U.S. Department of Health and Human Services to promote organ donation and transplantation. UNOS administers the national waiting list and coordinates the matching and placement of donor organs. UNOS also collects, validates, and maintains data on all organ donors and solid organ transplant recipients.
How long is the wait until a donor organ is found?
The waiting period varies with the age and health of the child and with the availability of donor organs. The policies that govern the allocation of donor organs can be found on the Web site of the United Network for Organ Sharing (UNOS), which maintains the waiting list on the Internet.
In general, it is more difficult to find suitable intestine for transplant than is the case with the kidney and liver. Living donors are only used in rare instances, and the donor organ has to be ABO blood group compatible and within 50–60% of the recipient’s size. The latest statistics on median waiting period can be found at ustransplant.org.
What is the postoperative period like for a child who has received an intestinal transplant?
After the procedure, patients are placed on immunosuppressive drugs to prevent rejection of the transplanted organ. The doctors perform biopsies (take tissue samples of the intestine) at various intervals to check for signs of rejection. Rejection may be managed by adding immunosuppressive drugs or increasing dosages. Patients who have received intestinal transplants remain on immunosuppressive drugs indefinitely.
Since patients on immunosuppressive drugs are vulnerable to infections by bacteria and viruses, they are monitored for signs and symptoms of infection. Patients are followed by the team’s dedicated intestinal transplant coordinator, Roni Zarge, who is a nurse practitioner specialist in wound care and ostomy continence. Particular attention is paid to wound care issues and fluid management. The multi-disciplinary team performs a nutritional assessment to determine the child’s caloric needs.
What kind of care does my child receive after leaving the hospital?
Following discharge, physicians and nurses from the Pediatric Intestinal Transplant Program and your local pediatrician monitor your child. Initially, your child visits the Pediatric Intestinal Transplant Clinic twice a week for laboratory work and exams by physicians. Surveillance biopsies to screen for organ rejection are initially done twice a week and then as determined by the physician. As recovery progresses, these visits become less frequent.
Our team will continue to be a part of follow-up care even after you and your child return home. Working together with the local pediatric gastroenterologist, we follow your child’s progress to ensure optimal care. To make it easier for families, the Intestinal Transplant Team runs outreach clinics throughout the year in Hawaii, Portland, Seattle, Sacramento, Fresno, and Oakland.
When were intestinal transplants first performed?
Early attempts at intestinal transplant began over 40 years ago, although clinical success has been achieved only over the past 10 years.
Why has it been more difficult to achieve success in intestinal transplants compared to other solid organ transplants?
Despite improved immunosuppression, the intestine offers more rejection than other organs. Rejection of the intestine is also difficult to diagnose since there are no biochemical (blood) tests to indicate rejection. To prevent intestinal rejection, patients require higher doses of immunosuppression than with other types of transplantation. Now, because of new, more specific anti-rejection medications, the success of intestinal transplant has improved dramatically. For the latest data on results, see the Intestinal Transplant Registry.
How many patients have received intestinal transplants?
Since 1985, data compiled by the international Intestinal Transplant Registry report that 55 intestinal transplant programs have done 601 transplants, of which 402 were performed in children.
Who pays for intestinal transplants?
With improved survival rates, most health insurers and other third-party payers now cover intestinal transplantation.