What to Expect If Your Child Needs an Intestine Transplant

After Intestine Transplant

Our goal in performing an intestine transplant is for your child to grow and develop like other healthy children of the same age.

We encourage your child to engage in age-appropriate activities. We will work with you to adapt your child’s medical needs to a normal schedule and activities.

Intestine Transplant Rejection

Organ rejection is a problem that can happen after transplant surgery. The new intestine comes from another person, so your child’s immune system will recognize that the intestine is different and may try to attack it. If your child’s immune system injures the intestine, this is called rejection.

  • The possibility for rejection is highest soon after transplant. But at any time, your child’s immune system might try to attack the intestine.

    For the new organ to function in your child’s body, we must give your child medicines that suppress their immune response. To prevent rejection, your child will take medicines for as long as the intestine is in place.

  • There are 2 types of rejection: acute and chronic. 

    • Acute rejection most commonly occurs within the first 6 months after transplant. It is not unusual to see a rejection episode 7 to 14 days after surgery. Don’t get discouraged. This is why we check your child so closely in follow-up visits and take blood samples for lab work and other tests. If rejection is diagnosed, we will start intravenous (IV) steroids for several days. Other medicines can be used if steroid therapy does not work.
    • Chronic rejection occurs slowly over time. It is very difficult to reverse, and our care focuses on helping the intestine to function for as long as possible. Your child might not need IV feeding or another transplant for years.
  • There are not any lab tests that tell us for sure that your child’s body is rejecting the transplanted intestine. Detecting rejection is based on symptoms. Rejection can occur without you or your child noticing any symptoms.

    To check for rejection even if your child has no symptoms, we will take small samples (biopsies) of the transplanted intestine to look for signs of rejection. We do the biopsies using an endoscope. Looking at the sample of intestine under a microscope, we can see if there has been any injury to the intestine caused by the immune system.

  • Rejection does not mean that your child will need to have the transplanted intestine taken out. Most rejection episodes can be treated successfully if detected early.

    Treatment for rejection involves increasing the amount of medicine to suppress your child’s immune system and allowing the intestine to recover from the rejection injury. This usually includes increased steroid doses. If this does not work, we will try other medicines.

Clinic and Follow-Up Visits After Intestine Transplant

During the first year after the transplantation, your child will need to visit the Liver and Intestine Transplant Clinic at Seattle Children’s many times for follow-up visits and lab tests. To schedule appointments, contact the Liver and Intestine Transplant Clinic.

  • A typical schedule of post-transplant clinic visits and lab tests might be: 

    • Month 1:
      • Clinic visits 2 times a week
      • Lab tests 2 to 3 times a week
    • Months 2 and 3:
      • Clinic visits 1 times a week
      • Lab tests 1 to 2 times a week
    • Months 4 through 6:
      • Clinic visits 1 time a month
      • Lab tests 2 times a month
    • Months 7 through 12:
      • Clinic visits 1 time a month
      • Lab tests 1 time a month
    • Year 2 and on:
      • Clinic visits every 3 months
      • Lab tests every 3 months 

    These are general guidelines. Your child’s actual schedule for follow-up visits and lab tests will depend on how your child is doing, how their intestine is functioning and if your child has developed any problems after the transplant. If your child is having complications, they may need more visits.

    • We must be able to contact you at any time. We need to have current mobile, work and home phone numbers.
    • Your child will need lab tests every 3 months for as long as they have the transplanted intestine. This continued testing makes sure the intestine functions as well as possible and lets the team address any transplant-related problems.
    • Your child’s transplant nurse coordinator or transplant nurse practitioner will act as your main contact at Seattle Children’s for any problems or questions.