When the intestine can no longer properly absorb nutrients and move ingested food through the body, an intestine transplant may be a lifesaving option. Most children who are candidates for transplant are experiencing intestinal failure. They may already have had portions of their intestines removed, while other organs such as the liver, stomach, pancreas and kidneys are healthy.
An intestine transplant is used to treat these conditions:
- Gastroschisis. Gastroschisis is a type of abdominal wall defect and congenital disorder in which the intestines protrude through a hole in the abdominal wall.
- Necrotizing enterocolitis (NEC). NEC is an infection of the gastrointestinal tract.
- Intestinal atresia. Intestinal atresia is a condition in which the intestine does not grow properly during fetal development.
- Volvulus. Volvulus is a twisting of the intestine that causes a blockage and may cut off blood flow to the intestine.
Many intestine transplant patients are premature infants whose intestines are removed after birth due to poor blood flow. These children grow and develop with parenteral nutrition (IV feeding) and often receive an intestine transplant when they are about 10 months old.
An intestine transplant includes removing the small intestine and about one-third of the large intestine. Those organs are then replaced with donor organs. The operation takes between four to six hours to perform.
The specially trained transplant surgeons at IU Health Transplant at Riley Children's Health carefully evaluate if an intestine transplant will improve a child's quality of life before placing the child on the transplant waiting list. Your child's surgeon will order extensive medical testing to ensure intestine transplant is the best treatment option. The evaluation may include:
- Medical history and physical exam. The surgeon will obtain a full medical history and perform a physical exam to learn everything about your child's overall health.
- Blood tests. The surgeon will perform blood tests such as:
- Chemistry panel
- Liver function
- Kidney function
- Coagulation studies
- Blood typing and antibody screen
- Tests to check for infectious diseases such as hepatitis B, hepatitis C and human immunodeficiency virus
- Imaging tests. The surgeon will perform imaging tests such as:
- Ultrasound of the circulatory system
- Abdominal computed tomography (CT) scan
- Magnetic resonance imaging (MRI)
- Barium enema and small bowel X-rays (types of fluoroscopy procedures)
- Upper endoscopy
- Motility tests. These tests examine how well food moves through the gastrointestinal system.
Your child’s surgeon will also have you meet with a transplant social worker to ensure a strong family support system exists to help provide the care and assistance your child will need after the transplant.
If the medical evaluation shows intestine transplant to be the best treatment option, your child will be placed on the national transplant waiting list, which is managed by the United Network for Organ Sharing.
Your family will meet with the transplant team to learn about all aspects of the transplant process. The team includes pediatric specialists in transplant surgery, gastroenterology, hepatology, radiology, pathology, pharmacy, and social work. Your child's transplant team also will include a transplant nurse coordinator and a dietitian. You will meet regularly with the transplant nurse coordinator who will work with you to ensure the best care and recovery for your child before and after the transplant.
The intestine transplant team will:
- Coordinate and explain your child’s surgery and recovery
- Teach you how to comply with the medical regimen your child will require before and after surgery
- Educate you about your child's nutrition requirements before and after an intestine transplant
- Assist you with additional services such as financial assistance and home care
- Answer all of your questions
Donated organs work best when they are transplanted as soon as possible. You can expect the transplant team to notify you to come to the hospital right away once an intestine that is a match for your child becomes available.
What to Expect
What to Expect
You can expect the following prior to your child’s liver transplant operation:
- Your child’s surgeon and transplant nurse coordinator will outline the required medical regimen of daily medicines, frequent lab tests and regular medical visits.
- It is important for you to be fully engaged in your child’s care. The transplant team will watch this closely as it shows how well you can care for your child after the intestine transplant.
- The surgeon will give you instructions on how to keep your child as healthy as possible prior to the transplant.
- You must optimize your child’s nutrition with guidance from his or her surgeon.
- Your child’s surgeon will provide instructions for physical fitness, including exercise and physical therapy as needed.
You can expect the following on the day of your child’s intestine transplant operation:
- You will need to follow the surgeon's instructions if your child is receiving gastrointestinal tube or parenteral (IV) feedings.
- When you arrive at the hospital, the surgeon will explain the transplant procedure to you and answer any remaining questions.
- You will be asked to read and sign a consent form for your child’s surgery. Be sure to review this document carefully and ask any questions you may have about the form.
- Your child will change into a hospital gown in a private room.
- Your child will have an IV line inserted into his or her arm or hand. Additional catheters may be placed in your child’s neck and wrist to monitor heart and blood pressure.
- Just before surgery, an anesthesiologist will administer surgical anesthesia. You may stay with your child until right before he or she is taken into the operating room.
- A tube will be inserted through the mouth and into your child’s lungs to help him or her breath with the help of a ventilator during surgery.
- A catheter will be inserted into the bladder to monitor urine output.
- The anesthesiologist will constantly monitor your child’s heart rate, blood pressure, breathing and blood oxygen level during the surgery.
- The surgical team will sanitize the incision site with an antiseptic solution.
- Your child's surgeon will remove the existing intestine.
- He or she will connect the blood vessels of the patient and donor intestines to begin a blood supply to the new intestine.
- The surgeon will connect the donor intestine to the gastrointestinal tract.
- The surgeon will close the incision and cover the wound with a sterile dressing.
You can expect the following immediately after surgery:
- A nurse will closely monitor your child’s vital signs.
- Pain medicine will be given to keep your child comfortable.
- Immunosuppressive (anti-rejection) medicines are given in large doses at the time of surgery to prevent rejection of the transplanted intestine.
- Your child will spend a few days in the PICU and will then move to a regular patient floor. How long your child stays in the PICU will depend on how long it takes for the new intestine to start working.
- Your child will be given liquid nutrition to start, typically through parenteral feeding.
- Your child’s surgeon will encourage him or her to sit up, walk and move about in the first few days after surgery.
- Gradually, your child will be able to eat soft foods by mouth followed by a regular diet.
- The transition to a regular diet can take two to three weeks to complete.
- Your child's care team will provide follow-up care instructions prior to discharge, including medicine instructions and proper exercise and nutrition routines. The team will also provide information on how to recognize the symptoms of transplant rejection. It is important that you follow these instructions and contact the doctor if there are any signs of transplant rejection.
Below are some additional guidelines for when you return home:
- Your child will take anti-rejection and immunosuppressive medicines for life.
- The risk for rejection is higher for an intestine transplant than for all other organ transplants.
- The intestine is an immunologic organ. This means it is part of the immune system. The intestine protects the body against everything you eat and drink.
- The greatest risk for organ rejection is during the first year after transplant.
- The procedure also carries risks for graft-versus-host disease and lymphoma.
- If the body rejects the donor intestine, and the reaction is severe, the organ may need to be removed.
Intestine transplants provide good outcomes for severely ill children. Five-year survival rates are between 60 and 70 percent. Many children are able to return to school and other normal activities after their recovery period.
Key Points to Remember
Key Points to Remember
- When the intestine can no longer properly absorb nutrients and move ingested food through the body, an intestine transplant may be a lifesaving option.
- Your child’s surgeon will perform extensive medical tests to ensure intestine transplant is the best treatment option.
- Your child’s surgeon will also make sure a strong family support system exists to help provide the care and assistance your child will need after the transplant.
- After surgery, your child will spend a few days in the PICU and will then move to a regular patient floor. How long your child stays in the PICU will depend on how long it takes for the new intestine to start working.
- Many children are able to return to school and other normal activities after their recovery period.