Pediatric Intestinal Transplant General Information Frequently Asked Questions (FAQ)

When were intestinal transplants first performed?

Early attempts at intestinal transplant began in the mid-1980s. Clinic success has been achieved over the past decade with significant improvements in surgical techniques and immunosuppressive medications.

Why has it been more difficult to achieve success in intestinal transplants compared with other solid organ transplants?

Despite improved immunosuppression, the intestine presents more rejection than other organs. Rejection of the intestine is also difficult to diagnose, since there are no biochemical (blood) tests to indicate rejection, and only some patches of the transplanted small bowel may experience rejection. Now with advanced diagnostics, including sophisticated endoscopy, it is easier to identify areas of concern. To prevent intestinal rejection, patients require higher doses of immunosuppression than with other types of transplantation. Because of new, more targeted anti-rejection medications, the success of intestinal transplant has improved dramatically.

What kind of evaluation is needed to determine whether my child is a candidate for transplantation?

Before final selection and listing for intestinal transplantation, your child will undergo a multidisciplinary pretransplant evaluation to determine the current status of intestinal disease and the extent of its progression. We want to make sure that an intestinal transplant is the best and safe option for your child. All outside medical records, laboratory and radiological studies, and intestinal biopsy materials are reviewed. Consultations are performed by the transplant doctor and surgeon, along with a child development specialist and social worker. A pretransplant education class is conducted by the transplant coordinator, and the family meets with our hospital-based parent mentors.

Assessments may include:

After these assessments and tests are completed, our team of experts meets with your family to discuss all treatment options. If your child is a candidate for intestinal transplantation, his or her name is added to the national intestine transplant waiting list maintained by the United Network for Organ Sharing (UNOS).

What is the transplant waiting list?

UNOS is a private nonprofit organization that works under contract to the U.S. Department of Health and Human Services to promote organ donation and transplantation. UNOS 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 your child and with the availability of donor organs. The policies that govern the allocation of donor organs can be found at United Network for Organ Sharing (UNOS).

What kind of care does my child receive soon after leaving the hospital?

Following discharge, a multidisciplinary intestine transplant team from the Pediatric Intestinal Transplant Program and your local pediatrician and/or gastroenterologist monitor your child. Patients are followed by a dedicated intestinal transplant coordinator who coordinates care with our team and your child’s doctors to ensure continuity of care.

What if we live outside the area? Will care continue?

We’ve created a successful care model to ensure that your child receives support and follow-up long after you return home. By working together with your local doctor and our highly skilled transplant team, we have been able to achieve the very best intestinal transplant success rates possible (100% since 2014). Our outreach clinics allow for visits multiple times a year, bringing intestinal transplant care to patients in select Western cities in five states and throughout California. In this way, we provide the specialized transplant care that maintains a successful transplant and optimizes your child’s intestinal health.