Intestinal Transplant: an operation done that replaces a diseased small intestine with a healthy one from another person.

Intestine/Liver Transplant: an operation done that replaces a diseased small intestine and diseased liver with healthy organs from another person.

Multivisceral Transplant: an operation in which multiple organs are transplanted, such as the stomach, pancreas, liver and small intestine.

Why is a small intestine transplant recommended?

A small intestine transplant is usually performed on children that have short bowel syndrome. Some children with the following conditions may need a small intestine transplant:

A small intestine/liver transplant is usually performed on children that have one of the above conditions, as well as liver failure. Liver failure is commonly caused by TPN cholestasis, but can be caused by other factors, including Alagille's Syndrome, alpha-1-antitrypsin deficiency, Wilson's disease, hepatitis, and hemochromatosis.

The majority of transplanted organs come from deceased organ donors. Deceased donors are recently deceased adults or children. If the donor is an adult, he/she may have agreed to be an organ donor before becoming ill.

How are transplanted organs allocated?

The United Network for Organ Sharing (UNOS) is responsible for transplant organ distribution in the United States. UNOS oversees the allocation of many different types of transplants, including intestine, liver, kidney, pancreas, heart, lung, and cornea.

UNOS receives data from hospitals and medical centers throughout the country regarding adults and children who need organ transplants. The medical transplant team that currently follows your child is responsible for sending the data to UNOS, and updating them as your child's condition changes.

Criteria have been developed to ensure that all people on the waiting list are judged fairly as to the severity of their illness and the urgency of receiving a transplant. Once UNOS receives the data from local hospitals, people waiting for a transplant are placed on a waiting list and given a "status" code. The people in most urgent need of a transplant are placed highest on the status list, and are given first priority when a donor organ becomes available.

When a donor organ becomes available, a computer searches all the people on the waiting list and sets aside those who are not good matches for the available organ. A new list is made from the remaining candidates. The person at the top of the specialized list is considered for the transplant. If he/she is not a good candidate, for whatever reason, the next person is considered, and so forth.

Some reasons that people lower on the list might be considered before a person at the top include the size of the donor organ and the geographic distance between the donor and the recipient.

How is my child placed on the waiting list for a new organ?

An extensive evaluation must be completed before your child can be placed on the transplant list.

Tests are done to gather information that will help determine how urgent it is that your child is placed on the transplant list, as well as ensure the child receives a donor organ that is a good match.

How long will it take to get a new organ?

There is no definite answer to this question. Sometimes, children wait only weeks before receiving a donor organ. However, it may take months or years on the waiting list before a suitable donor organ is available. During this time, your child will receive close follow-up with his/her physicians and the transplant team.

When a donor has been identified for your child, one of the members of the transplant team will notify you. You will be given a pager so that we can reach you at all times. You will be told to come to the hospital immediately so your child can be prepared for the transplant.

What is involved in transplant surgery?

Once a small intestine or donor organs (for a multivisceral transplant) become available to your child, you and your child will be called immediately so that you can get to the hospital as soon as possible. This call can occur at any time, so you should always be prepared to go to the hospital if needed. Once at the hospital, your child will have an intravenous catheter placed and blood work performed.

Your child will then go to the operating room. Intestine transplant surgery takes approximately three to four hours to complete. A multivisceral transplant operation is complex and can take up to six hours to complete.

During the surgery, a member of the transplant team will keep you informed on the progress of the transplant.

What happens after the transplant surgery?

After the surgery, your child will go to an intensive care unit (ICU) to be monitored closely. The length of time your child will spend in the ICU will vary based on your child's unique condition.

After your child is stable, s/he will be sent to the Transplant unit. Your child will continue to be monitored closely. You will be educated on all aspects of caring for your child during this time. This will include information about medications, activity, follow-up, diet, and any other specific instructions from your transplant team.

What is rejection?

Rejection is a normal reaction of the body to a foreign object. When a new organ is placed in your child's body, the body sees the transplanted organ as a threat. Your body makes antibodies and immune cells that are designed to attack the transplant.

To allow the organ to successfully live in a new body, medications must be given to prevent this response from occuring.

What are the symptoms of rejection?

The following are the most common signs and symptoms of rejection. However, each child may experience symptoms differently. Symptoms may include:

What is done to prevent rejection?

Medications must be given for the rest of the child's life to fight rejection. The anti-rejection medication we use most with intestine and multivisceral transplant patients is Tacrolimus, also known as Prograf.

Because anti-rejection medications affect the immune system, children who receive a transplant will be at higher risk for infections. A balance must be maintained between preventing rejection and making your child very susceptible to infection.

Blood tests to measure the amount of medication in the body are done periodically to make sure your child does not get too much or too little of the medications. White blood cells are also an important indicator of how much medication your child needs.

Most importantly, tests of how the donor organ is functioning are performed regularly to be certain that the transplanted organ is not being rejected.

What about infection?

The risk of infection is especially great in the first few months because higher doses of anti-rejection medicines are given during this time. Your child will most likely need to take medications to prevent other infections from occurring. Some of the infections your child will be especially susceptible to include oral yeast infection (thrush), herpes, and respiratory viruses.

Your child may still have a central intravenous line, and this must be kept absolutely clean and the site monitored frequently.

What type of follow-up care will my child receive?

Living with a transplant is a life-long process. Frequent visits to and contact with the transplant team are essential. Knowing the symptoms of organ rejection and medication side effects (and watching for them on a daily basis) is critical.

When your child becomes old enough, s/he will need to learn how to do this themselves.

Your child will have very close follow-up with the transplant team after leaving the hospital. This will allow for close monitoring of your child and the function of the transplanted organ. Follow-up visits may include the following:

Keeping appointments with your child's transplant physician, as well as maintaining contact with the transplant team when signs and symptoms of rejection occur is vital.