Intestinal or Multivisceral Transplant | Listing & Waiting
At the conclusion of the evaluation, the transplant team will inform you of the results. They will also communicate these findings to your child’s primary care physician. Generally, there are three possible recommendations:
- The evaluation has identified other treatments or medications available that should be considered prior to an intestinal/multivisceral transplant; therefore, your child is deferred.
- The evaluation has determined that an intestinal/multivisceral transplant is the appropriate treatment option.
- The evaluation has identified factors that make an intestinal/multivisceral transplant contraindicated (not recommended) or not possible.
In all of these situations, the transplant team will work closely with you and your child’s physicians to develop a coordinated care plan.
Listing for transplantation
Once you and your child’s doctors decide that an intestinal/multivisceral transplant is the most appropriate treatment option, your child will be listed on a national computer system, United Network of Organ Sharing (UNOS), as a potential transplant recipient. UNOS matches organ donors by weight and blood type with children waiting for new organs. The wait can be from days to months or years depending on the severity of illness, type of transplant needed, and size of child. It is important that we are able to reach you at all times. Transportation arrangements should be planned by the recipient’s family to reach the hospital in a timely fashion.
The goal while your child is waiting on the transplant list is to preserve your child’s current liver and intestinal function and to ensure the best quality of life possible. We will work closely with you and your child during the waiting time. Your child will have frequent visits to the hospital for periodic check-ups, including physical examinations and blood work.
Overall, children and adolescents have done well emotionally with this waiting period. There is no question that it is stressful to wait. As parents, the implications of waiting for another child to die so that your child may live are profound and sometimes overwhelming. The transplant team stands ready to support you and your child during this waiting period.
Intestinal or Multivisceral Transplant | Surgery & Hospital Stay
Intestinal and multivisceral transplant surgery
Donor organs can become available at any time of the day or night. Timing is critical so it is important to plan ahead for when this occurs.
Your child will be admitted to the Solid Organ Transplant Floor (10 South) to be prepared for surgery. An intravenous line will be placed and blood tests will be performed. Your child will be seen by the surgeons and anesthesiologists to discuss the upcoming procedure and sign consent forms.
At the same time, Boston Children’s surgical team typically has to obtain the donor organ(s). The time of operation is planned to match the team’s arrival back at Boston Children’s. This is because organs cannot live for long outside the body, so it is important to be able to transplant them as soon as they arrive at Boston Children’s.
When the surgical team sees the donor organ(s), it may become apparent that the organs are not ideal. Therefore, abdominal surgery will not proceed until the donor organs are seen. This means your child’s surgery may be cancelled, even after receiving medication and having blood tests. If that happens, your child will return home and wait for the next organ assignment.
The transplant operation involves removing the damaged organ(s) from your child’s body and replacing them with new organs. The surgeon will also perform an ileostomy, in which part of the small intestine comes through the opening of the stomach for the collection of waste in a special bag. The transplant operation takes about six to 12 hours. Your child’s specific operation will be described to you.
Possible complications after intestinal and multivisceral transplant
Rejection
The immune system is designed to detect infections and foreign tissue to eliminate them from the body. A transplant from anyone other than an identical twin is seen by the immune system as infected or foreign, and the body will organize a destructive response (rejection) to the new organ(s). Therefore, we must prevent rejection by using strong immunosuppression medications.
An episode of rejection occurs in half to two-thirds of patients, usually within six months of the transplant operation. In most cases, adjusting medications will stop the rejection. Your child will have routine biopsies through the ileostomy to check for infection or rejection.
The signs that you and your team will be looking for include malaise, fever/chills, loss of appetite, nausea and vomiting, increased or decreased ileostomy output, abdominal pain or distention, and ileostomy output that becomes bloody.
Infection
The immunosuppression medications keep the body from rejecting the new organs, but it also suppresses the body’s ability to fight infections easily. The most common infections result from viruses that have been lying dormant in your child’s system or in the donated organs. To prevent infection, anti-bacterial, anti-viral, and anti-fungal medications may be used for many months or years after transplant.
If an infection is suspected, the team may take blood, urine, stool, sputum, or wound- and drain-site specimens. Signs could be fever, tiredness or fatigue, diarrhea or vomiting, redness or drainage around the incision or ostomy site, a cough, or a sore throat. If an infection occurs, it will be treated with medications specific for that infection, if possible.
If infection develops treatment might necessitate readmission for intravenous (IV) medications or treatment may be completed on an outpatient basis.
Vascular complications (problems with blood vessels)
Uncommonly, problems may arise with the connections between the new organs and your child’s blood vessels. Veins and arteries of the new organs must be connected to those in your child’s body, and sometimes blockages or leaking can occur at these connections. Laboratory tests and imaging (ultrasounds and/or CT scans) can help your team determine if problems are present. Occasionally, surgery is necessary to correct these problems.
Bleeding
Bleeding from incisions — or in the gastrointestinal tract — is a possible complication that can be handled if identified quickly. Any bleeding should be reported to your doctor immediately, including blood in the vomit, bowel movements or the ostomy drainage. Blood can look red like fresh blood, or black like coffee or tar.
Post-transplant lymphoproliferative disease (PTLD)
Children who receive immunosuppression medication for organ transplants may develop a disorder in which lymphocytes, a particular kind of white blood cells, start growing in an abnormal fashion. This is usually triggered by an infection with or reactivation of Epstein Barr virus (EBV), which infects B-cells, a certain kind of lymphocytes. These abnormally growing cells may be found in lymph glands anywhere in the body, or in the transplanted organs such as the intestine, the spleen and the liver.
Lowering the amount of immunosuppression can reverse the early stages of PTLD, but sometimes other treatments are necessary. Uncommonly, PTLD can progress to lymphoma (cancer of the lymph cells) requiring chemotherapy and other medications. Depending upon your child’s history of EBV infection and the type of immunosuppression needed, your child may be at risk for PTLD. Your child’s doctor will discuss with you this specific risk and how it is monitored.
Hospital stay and going home after transplant
The average hospital stay is four to six weeks after an intestinal or multivisceral transplant. Your child will be monitored for rejection, infection and other problems. Medications will be adjusted frequently.
Your child will also be seen by the unit’s child life specialist and social worker to provide additional support and facilitate coping during the hospitalization. You will begin to learn about the medicines and care your child will need at home. Our goal is to have each family feel comfortable and confident with all aspects of care before discharge.
Intestinal or Multivisceral Transplant | Long-Term Outlook
What is the long-term outlook following an intestinal transplant?
Following the surgery, the Intestinal and Multivisceral transplant team will see your child for follow-up appointments to monitor their health, change medications if needed and stay in touch with your family. These visits will be frequent at first and gradually become less often. Eventually, your child may only need to come in once or twice a year.
Due to advances in surgery, better immunosuppressive medications and a decrease in life-threatening infections, one-year survival after intestinal or multivisceral transplant can approach 80 to 90 percent for children treated in experienced centers.
Data on long-term outcomes as reported in the “OPTN/SRTR 2016 Annual Data Report: Intestine” indicate patient survival of 67.7 percent at 5 years for recipients younger than 18 years of age. It is clear that intestinal or multivisceral transplantation has become a viable treatment option for permanent intestinal failure. Results will continue to improve as researchers at Boston Children’s Hospital and elsewhere discover new approaches to treating intestinal failure.
Medication adherence
After transplant, medications must be given for the rest of the child's life to fight rejection. The anti-rejection medication used with most intestinal and multivisceral transplant patients is tacrolimus.
Anti-rejection medications work by suppressing the immune system, but that means your child will be at higher risk for infections, especially those that have been lying dormant in his system. Our team will continually monitor your child’s health through blood tests and other exams, and medication dosages may change frequently.
Nutrition
Following transplant, your child will continue to receive total parenteral nutrition (TPN) until their new organs are functioning well enough to absorb nutrients. The goal is usually to have the child begin to drink and later on to eat as early as the first or second week after the transplant operation.
Growth and development following intestinal or multivisceral transplant
A transplant offers a chance for independence and better quality of life. Frequent medical supervision is still necessary after a transplant, but this need does decrease over time. It is critical to understand that transplantation is a treatment, not a cure. While a few precautions need to be taken, we encourage your child to live a full and happy life: go to school, play sports, spend time with friends and enjoy hobbies.
