Intestine Transplant Program

What to Expect If Your Child Needs an Intestine Transplant

One way that Seattle Children’s helps your child and family through this challenging time is by helping you understand as much as possible about the transplant process.

You most likely have many questions about Seattle Children’s and how to prepare your child for their clinic visit. Get information about your child’s clinic visit, including: 

  • Important things to do before the clinic visit
  • Tips on helping your child feel more comfortable about the upcoming visit
  • Paperwork to bring the day of the clinic visit
  • Suggested questions to ask your child’s doctor
  • How to prepare for care at home
  • We accept referrals from your child’s primary care doctor, a specialist or a case manager, or directly from you.

  • Your child will receive a pre-transplant evaluation to determine whether a transplant is the best option.

    We will review your child’s medical and surgical history and schedule office visits with the transplant doctor and other members of the transplant team. The office visits usually take place over 2 days.

    Once the pre-transplant evaluation is complete, the transplant team will review your child’s case and determine if an intestine transplant is the best option for your child. If you and the transplant team decide to move forward, we can begin working with the organizations that handle the organ donation process.

    Intestine transplants can be performed alone or in combination with other organ transplants, most commonly the liver.

  • If the team recommends a small intestine or combined transplant with another organ for your child and you as a family agree, your child will be placed on the United Network for Organ Sharing (UNOS) transplant waiting list.

    UNOS is a nonprofit organization that matches organs with patients. They collect information about every transplant in the United States.

    There are many things to keep in mind while you are waiting for an intestine transplant.

  • Depending on your child’s condition, the transplant team will perform one of the following surgeries:

    Isolated intestine transplantation

    Your child’s surgeons will remove a diseased portion of the small intestine and replace it with a healthy small intestine from a deceased donor. This type of transplant will be performed if your child has been diagnosed with only intestinal failure.

    Liver-intestine transplantation

    Your child may need a transplant of both the small intestine and liver at the same time. This type of surgery is performed if both the liver and intestine are not working properly.

    Multivisceral transplantation

    This is a transplant of the small intestine along with other organs that are not working properly, such as the stomach, pancreas or kidney.

  • Preparing your child and your family for the surgery may help reduce everyone’s stress during this time. Our team will help your family prepare and cope with the experience. We want you to know what’s going to happen each step of the way.

    Learn more about what to expect if your child is having surgery, including: 

    • What to do once surgery is scheduled
    • Tips to help your child feel more comfortable about the surgery
    • What to bring the day of the surgery
    • What to expect the day of the surgery
    • Helpful questions to ask your child’s doctor
    • How to prepare for care at home
  • Patients begin their recovery in the Pediatric Intensive Care Unit (PICU), generally for 7 to 14 days, and are then moved to the Surgical Unit for ongoing care for the next 2 to 4 weeks.

    Learn more about your child’s stay at Seattle Children’s, including: 

    • Things to do before your child’s hospital stay
    • Preparing your child for a hospital stay
    • What to expect during your child’s stay
    • Helpful questions to ask your child’s doctor
    • What to know after your child leaves the hospital 

    See our Hospital Campus Visitor and Family Guide, which includes: 

    • Services at Seattle Children’s
    • Surrounding neighborhood, including where to stay or to eat 

    Once your child leaves the hospital, they will continue to visit the clinic for follow-up care. A regular schedule of visits will make sure that your child: 

    • Is recovering from surgery
    • Has no signs of infection or organ rejection
    • Is taking their prescribed medicines
    • Is returning to everyday activities