Intestinal or Multivisceral Transplant | Overview
If your child has intestinal failure, her body is unable to absorb the nutrients it needs from the food she eats. Many children with this condition receive nutrition intravenously, which allows it to bypass the digestive system and go right into her bloodstream. This is known as parenteral nutrition (PN).
Many children do quite well on PN, but sometimes complications arise that make it no longer an option. If your child can’t receive PN, or has a digestive condition that cannot be treated, an intestinal or multivisceral transplant may be an option.
One-year survival after an intestinal transplant can approach 80 to 90 percent for children treated in experienced centers.
Intestinal/multivisceral transplants are extremely rare; this is why data on long-term survival is still lacking.
Results will continue to improve as researchers at Children¹s and elsewhere discover new approaches to treating intestinal failure.
How Children’s Hospital Boston approaches an intestinal/multivisceral transplant
Whether your child needs an intestinal transplant, liver-intestinal transplant or multivisceral transplant, she is in good hands with us. Your child’s team includes:
- pediatric transplant surgeons
- transplant gastroenterologists/hepatologists
- advanced practice nurses
- transplant coordinators
- transplant pharmacists
- transplant infectious disease specialists
- transplant psychologists
- transplant social workers
- experts from sub-specialties throughout Children’s, including Child Life specialists and resource specialists, to support your whole family
We also work closely with Children’s Center for Advanced Intestinal Rehabilitation (CAIR) - one of the world's premier programs for the treatment of short bowel syndrome, a complex and often devastating disorder caused by the loss of part of the small bowel.
Intestinal/Multivisceral transplant: Reviewed by Rima Fawaz, MD
© Children’s Hospital Boston, 2010
Intestinal or Multivisceral Transplant | Symptoms and Causes
What’s a multivisceral transplant?
A multivisceral transplant is one in which the intestines are replaced, along with the liver and/or spleen, and sometimes the stomach.
When is an intestinal or multivisceral transplant recommended?
Each child is different, and any transplant decisions will be made jointly between your family and your child’s health care team. Many children have an intestinal or multivisceral transplant because:
- They have had multiple severe infections from their PN central line, such as fungal sepsis.
- More than half of the sites commonly used for PN (such as the jugular and subclavian veins) become inaccessible.
- Long-term at-home PN feeding is no longer an option.
- There may also be cases when the intestinal failure itself makes a transplant necessary.
What medical conditions can result in a child needing an intestinal/multivisceral transplant?
A small intestine transplant is usually performed on children that have short bowel syndrome. Other conditions that can require intestinal/multivisceral transplants include:
- necrotizing enterocolitis (NEC)
- aganglionosis/Hirschsprung's Disease
- intestinal atresia
- microvillus inclusion
- trauma (injury to these organs)
- massive resection of the intestine
- mesenteric thrombosis
A transplant can offer your child a longer and healthier life, but the procedure, like any surgery, does carry its own risks.
What is rejection?
Rejection is a normal and, under most circumstances, healthy reaction of the body’s immune system to a foreign object. When the new transplanted organ/s is placed in your child's body, his immune system attacks it. To prevent this, your child will have to take life-long medications to weaken his immune system and prevent rejection.
How can I tell if my child is experiencing an episode of rejection?
It’s not always easy – sometimes, you will see no signs, and rejection will be found by routine monitoring of your child’s blood test.
Some of the most common signs include:
- fever higher than 100 degrees
- blood in stool or stomal output
- weight loss
- abdominal pain/cramping
- poor appetite
- increase or decrease in stool output
- pale, swollen stoma
- enlarged abdomen
Your child’s transplant team will watch for these signs and show you what to look for.
What medications are used 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.
These medications work by suppressing the immune system, but that means that your child will be at higher risk for infections, especially those that have been lying dormant in his system. Our team will continually monitor his health through blood tests and other exams, and the dosages may change frequently.
What other infections might my child be susceptible to?
Some other infections your child may be especially susceptible to include:
- oral yeast infections (thrush)
- respiratory viruses and fungi
- Epstein-Barr virus and Cytomegalovirus
Your child may still have a central intravenous line. This must be kept absolutely clean, and the site should be monitored frequently.
Teens and transplants
Being a teenager can be tough enough without having to cope with everything that comes with being a transplant patient. Learn about the special challenges your teen may face as a transplant patient and some ways you can help.
What’s the long-term outlook for my child?
Due to advances in surgery, better immunosuppressive medications and a decrease in life-threatening infections, one-year survival after intestinal transplant can approach 80 to 90 percent for children treated in experienced centers.
Though data on long-term survival are still lacking, it's clear that intestinal transplantation has become a viable treatment option for permanent intestinal failure. Results will continue to improve as researchers at Children¹s and elsewhere discover new approaches to treating intestinal failure.
Finding a donor organ(s) for your child
Who distributes the donor organs?
The United Network for Organ Sharing (UNOS) is responsible for transplant organ distribution in the United States. They oversee the distribution of most types of solid organ transplants. In addition to intestines, they allocate livers, kidneys, pancreas, lungs, hearts and corneas.
How are donor organs distributed?
UNOS keeps a list of all the people in the United States who need solid organ transplants. If your child needs an intestinal or multivisceral transplant, she will be given an allocation score based on how severe her condition is and how urgently she needs the transplant.
Those who would benefit most are given higher scores, and given first priority when donor organs become available.
When a donor organ(s) becomes available:
A computer searches all the people on the waiting list and creates a smaller list of people for whom the organ would be the appropriate size and blood type.
The computer ranks the people on that smaller list according to their allocation scores.
The person at the top is considered first for the transplant. If she isnt a good candidate, the next person on the list is considered, and so forth.
When the decision is made to put your child on the transplant list, we will send her medical profile to UNOS, and keep them updated as her condition changes.
Where do transplanted organs come from?
Transplanted organs come from adults or children who have died, often because of an accidental injury or other cause that does not affect the vital organs. A donor may be anywhere in the United States.
How long is the wait?
We know that it’s agonizing to wait for a donor organ(s), but, unfortunately, there’s no definite answer to this question. Your child may be on the list for weeks or months, or it may take longer. We will collect all of your contact information and, if necessary, you will be given a beeper for us to be able to reach you at all times.
Q: Will my child be able to eat after the transplant?
A: After the transplant, your child will continue to receive TPN until her new intestines 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.
Q: How long will it take to get a new organ(s)?
A: Unfortunately, there’s no way to know for sure. Finding the right donor organ(s) could take weeks to months depending on your child's severity of illness, blood type and weight. We know it’s hard to wait, and can direct you to resources and community support groups.
Q: What does the surgery involve?
A: Your child’s transplant surgeon will take out the diseased organ(s), and attach the new one(s) in its place. Then the surgeon will be sure that blood and bile flow has been reestablished. Learn more about the transplant.
Q: How long will my child be hospitalized after the transplant?
A: It depends on how sick your child was going in to the transplant, and it’s also related to his age and size. If all goes well and your child is a teenager, he may stay in the hospital 10 to 12 days. Babies may stay for anywhere from two to six weeks. During this time, your child’s team will teach you what you need to know to care for your child at home.
Q: Will my child be able to return to school after the transplant?
A: Yes. While a few precautions need to be taken, we encourage your child to live a full and happy life: She can go to school, play sports, spend time with friends and enjoy hobbies.
Q: What will happen after the transplant?
A: Your child will need to take life-long medication to prevent the new organ(s) from being rejected. She will also have follow-up appointments here at Children’s, so we can monitor her 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, if all goes well, your child may only need to come in once a year.
Since your child’s immune system will be compromised, your family may need to make some adjustments to protect her health.
Intestinal or Multivisceral Transplant | Testing and Diagnosis
If it seems like an intestinal transplant might be an option for your child, we’ll ask you to come to the hospital for an informational visit. Your family will meet our team, and you’ll be invited to ask questions and share any concerns you may have. We encourage you to bring family members to this meeting.
If you and the transplant team agree that a transplant is the best option, your child will be scheduled for an evaluation, which is usually completed over the course of two to three days. This may sound like a lot, but it’s necessary so that we can:
- confirm that a transplant is the appropriate treatment
- determine how urgent the need for a transplant is
- perform necessary diagnostic studies to know what type of transplant your child needs
Since a transplant is a complex procedure that involves many medical specialties, your family will meet our experts from a number of different areas, including:
Transplant surgeon: doctor who performs the actual transplantation procedure.
Transplant gastroenterologist: doctor who specializes in the diagnosis and treatment of transplanted intestinal diseases.
Transplant coordinator: advanced practice nurse with special training in caring for intestine and multivisceral transplant patients. She will organize all aspects of your child’s care before and after the transplant.
Anesthesia: The anesthesiologist will review your child's medical and/or surgical histories, identify any risk factors associated with anesthesia and plan the type of anesthesia that will be specifically tailored to your child.
Infectious disease: Our infectious disease specialist will perform a physical exam and review your child's vaccination records. We will want to know if your child has any particular environmental exposures or has recently traveled to a foreign country.
Psychiatry: A psychiatrist or psychologist will meet with you and your child to discuss coping strategies, stress management and family life.
Child Life specialist: trained professional who uses play and other activities to help children understand and adjust to their hospital experience.
Social services: Our transplant social worker will meet with you and your family to identify support systems and discuss your feelings about transplant. We can provide you with information about resources related to finances, transportation, relocation expenses and support groups.
Nutrition: Our registered dietician will evaluate your child's diet and nutritional requirements. It’s important that your child maintain a healthy lifestyle and good nutrition before the transplant.
Physical therapy: The physical therapist will discuss the importance of exercising before transplant in a way that is appropriate for your child. The goal of developing an exercise plan is to help increase endurance and strength.
Dentist: Before a transplant can be considered, we often recommend that your child meet with his own dentist or one here at the hospital. The goal is to treat any cavities, infections or tooth abscesses before the operation, since these conditions can be problematic once your child begins to take medicine to suppress his immune system.
If your child has any other medical problems such as a lung condition (e.g. asthma or cystic fibrosis) or heart disease, other specialists may be included to fully assess your child’s condition.
What tests are used during the evaluation?
Your child’s specialists will order different tests to rule out infections and see how well your child’s organs are functioning. These types of tests may include:
- blood tests to determine blood type (an organ donor and recipient must have compatible blood) and assess the function of the liver, lungs and other vital organs
- tests to determine if your child has antibodies to viruses that can become activated after transplant
- abdominal ultrasound to allows doctors to see the liver and flow of blood through arteries and veins
- barium enema, an x-ray study in which a small tube filled with barium is inserted into your child's rectum and large intestine in order to evaluate her anatomy
- chest x-ray to see if your child's lungs are healthy
- electrocardiogram (EKG) and echocardiogram to evaluate your child's heart
- D-Xylose absorption test to measure the intestines' ability to absorb nutrients
- gastric emptying study to help detect gastroesophageal reflux and measure gastric emptying time
- upper gastrointestinal (GI) tract and small bowel follow through to check your child's intestinal length and rule out obstruction. The procedure is a type of x-ray in which your child drinks (or it can be administered via a G-tube) a substance called barium, which coats the intestine.
After these consultations and tests, our transplant team will meet as a group to determine whether your child is a good candidate for a transplant. Our multidisciplinary approach to care ensures that your child’s case will be given thoughtful discussion of every treatment possibility.
If your child is a transplant candidate, we’ll make sure your family is fully educated about the risks and benefits, and your child will be placed on the United Network for Organ Sharing (UNOS) waiting list.
Intestinal or Multivisceral Transplant | Treatments
Once a new organ(s) has been found, things move very quickly. You will be called and asked to bring your child to the Admitting Office and then to the Transplant floor to get ready for surgery. Our team will make sure that you and your family are comfortable and informed.
Keep in mind that it is possible that you may be sent home again if one or both of the following things occur:
- The team discovers a problem with the new organ(s).
- The team finds that your child has a condition that could jeopardize his health or the transplant's chance of success.
It's normal to be nervous, but you can rest assured that your child is in good hands with us — his surgeon has the expertise required to work with the tiny vessels and ducts found in children.
What happens when we arrive at the hospital?
When you arrive at the hospital, members of your the transplant team will perform a physical exam and run some tests to make sure your child is ready to go to the operating room.
What happens in the operating room?
Often, the anesthesiologist will allow you to take your child into the operating room and stay with him until he's given anesthesia and falls asleep.
Next, special catheters are inserted into your child's blood vessels and urinary bladder. A nasogastric tube will be inserted through his nose into the stomach.
For an intestine transplant, the surgeon will remove the damaged intestine from your child's body and attaching the new intestine.
If your child is having a multivisceral transplant, the surgeon will remove the damaged organs from your child's body and attaching the new ones. Surgeons need only to connect one artery (the aorta - the body's main artery) and one vein when reattaching the organs into the patient, as opposed to all the blood vessels that would be involved with each organ separately.
How long will the transplant operation take?
Each child and each transplant is different, but an isolated intestinal transplant surgery takes at least three to four hours to complete. A multivisceral transplant operation is more complex and can take up to 10 hours to complete.
Because your child needs to be prepared for anesthesia and have all of the special catheters and tubes inserted, you may not see him for a bit longer than the actual surgery itself, but you will be regularly updated as to the progress of surgery and his condition.
What happens after surgery?
After the surgery, your child will go to the intensive care unit (ICU) to be monitored closely. After his condition is stable, your family is welcome to visit.
While your child is in the ICU, members of the transplant team will begin to educate you and your family on all aspects of caring for your child after his operation. This will include information about medications, activity, follow-up, diet and any other specific instructions.
How long will my child be in the hospital?
If all goes well, your child will stay in the hospital for at least a few weeks. The first several days are spent in the ICU, and the rest in a single room in the Solid Organ Transplant Unit. During this time:
- Your child will continue to recover, and we will be monitoring his health and adjusting his medications.
- Your child will also be seen by his Child Life specialist and social worker to provide additional support during his stay.
- Our team will teach you about the medicines and care your child will need at home.
Our goal is to have you feel comfortable and confident with all aspects of care before your child comes home. The patient care coordinator here at Children's will work with you and your insurance company to set up the medications and any in-home nursing care that might be needed after discharge.
After the transplant, your child's team will want to keep a close eye on him through follow-up visits to make sure that everything is going well. These visits might include:
- complete physical examination, monitoring of blood pressure, growth, etc.
- blood tests
- continued education for you and your child
- medication changes
How can I help keep my child safe after the transplant?
We understand that you will want to do everything possible to protect your child and his new organ(s), and there are some steps you can take to minimize the risk of infection.
Intestinal or Multivisceral Transplant | Coping & Support
We understand how disruptive and frightening a transplant can be — not only for your child, but for your whole family. From your first visit, you'll work with a team of professionals who are committed to supporting you.
- Patient education: Our nurses are on hand to walk you through the transplant process and help answer any questions you may have. They will also reach out to you by phone, continuing the care and support you received while at Boston Children's.
- Parent to parent: Want to talk with someone whose child has had an intestinal or multivisceral transplant? We can often put you in touch with other families who can share their experience.
- Faith-based support: If you and your family find yourself in need of spiritual support, we can connect you with the Department of Spiritual Care. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you, pray with you, and help you observe your own faith practices during your treatment experience.
- Social work and mental health professionals: Our social workers and mental health clinicians have helped many other families in your situation. We can offer counseling and assistance with issues such as coping with your child's diagnosis, stresses relating to coping with illness and dealing with financial difficulties.
On our patient resources page, you can read all you need to know about:
- getting to Boston Children's
- navigating the hospital experience
- resources that are available for your family