What to Expect

One way that Seattle Children's Hospital supports 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 the clinic visit. Get more information about your child's clinic visit, including:

  • Important things to do before the appointment
  • Tips on helping your child feel safer about the upcoming visit
  • Paperwork to remember the day of the appointment
  • Suggested questions to ask your child's doctor
  • How to prepare for care at home

How does the transplant process start?

We accept referrals from your child's primary care doctor, a specialist or a case manager, or directly from you.

What happens before the transplant?

Your child will receive a pre-transplant evaluation to determine whether a transplant is the best option before we can begin working with the organizations that handle the organ donation process.

We will review your child's medical and surgical history and schedule an office visit with the transplant doctor and other members of the transplant team.

Once the evaluation is complete, the transplant team will review your child's case and will determine whether an intestine transplant is the best option for your child.

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

What happens once the decision to transplant is made?

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 the nonprofit scientific and educational organization that matches organs with recipients and collects and manages data about every transplant occurring in the United States.

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

What type of transplantation surgery can we expect?

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 transplantation will be performed if your child suffers only from intestinal failure.

Liver-intestine transplantation

Your child may need a transplantation of both the small intestine and liver at the same time. This type of surgery is performed if both the liver and intestine have failed.

Multivisceral transplantation

This is a transplantation of the small intestine along with other organs that have failed, such as the stomach, pancreas or kidney.

What happens during the transplant surgery?

Preparing your child and yourselves for surgery may help reduce your family's stress during this time.

Our team is committed to helping children who need surgery and their families cope well 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 safer about the surgery
  • What to bring the day of surgery
  • What to expect the day of surgery
  • Helpful questions to ask your child's doctor
  • How to prepare for care at home

What happens after the transplantation?

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 two to four weeks.

Find out what you need to know about your child's stay at Seattle Children's, including:

  • Things to do before your child's arrival
  • Preparing your child for a hospital stay
  • What to expect during your child's stay
  • Helpful questions to ask your child's doctor
  • Information to help you after your child has been discharged

Once discharged from the hospital, your child will continue to visit the clinic for follow-up care. A regular schedule of visits will ensure that your child:

  • Is recovering from surgery
  • Has no signs of infection or organ rejection
  • Is learning about and understanding how to take prescribed medicines
  • Is returning to an active, normal lifestyle