It’s natural to have a lot of questions when learning your child might need an intestinal or multivisceral transplant. We’ve tried to provide some answers to those questions here, and when you meet with our experts, we can explain your child’s options fully.
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:
- 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 teach you what to look for as well.
What medications are used to prevent rejection?
After transplant, 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
After transplant your child may still have a central intravenous line. Anti-rejection medication will compromise your child's immune system after transplant, so this line 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 Boston 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 health and time they've spent on the organ donation list.
- The person at the top is considered first for the transplant. If she isn’t 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?
Waiting for a donor organ(s) can be difficult, 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. Finding the right donor organ(s) could take weeks to months depending on your child's severity of illness, blood type and weight. 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.
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 medications 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.