About liver transplants | Intestinal transplant

Intestinal transplant

There are a number of reasons why intestinal failure happens, including:

• Insufficient bowel – due to surgery just after birth for conditions such as gastroschisis, volvulus, malrotation, atresia. This is known as short bowel syndrome
• Abnormal lining of bowel, e.g. Hirschsprung’s Disease

Children with irreversible intestinal failure are kept alive by intravenous nutrition. Many children and young people have long-term survival on this sort of treatment but some children may develop complications caused by TPN (Total Parenteral Nutrition: nutrition which is given directly into the blood stream), which may lead to infection and further liver damage.

Intestinal transplant is now an established treatment option for those children who develop complications, with advances in immunosuppression and increasing knowledge meaning the survival rate is improving and patients have an improved quality of life.

Depending on the severity of the liver disease, intestinal transplant can involve the small bowel alone or with other organs:
• Intestine alone
• Liver and intestine
• Multivisceral transplant (i.e. liver, pancreas etc.)

The transplant
Once a decision has been made to consider your child for transplant they will undergo a transplant assessment.   This considers whether it is the right treatment for your child, the impact of your child’s disease on them and the rest of the family, alterations to current treatment and also to provide you and your child with information about the operation, including complications, benefits and risks.  There will also be the opportunity to meet members of the care team who would be involved, including the ward team and transplant surgeon.

Once a decision is made to go ahead with the transplant, your child’s name will be placed on the transplant list.  The waiting period can be very stressful because no-one can predict how long the wait will be.

When a suitable donor is found and the operation goes ahead, the average operation time for intestinal transplant is 12 hours.  At the end of the operation your child will be taken to an intensive care unit where they will be closed monitored over this critical period.  When appropriate your child will be returned to the ward to continue their recovery.

Your child will be on a number of different medicines including those which prevent rejection of the new organs.  The aim is to reduce these in the months ahead, but it is thought that at least two anti-rejection medicines will need to be taken for the rest of your child’s life. Following intestinal transplant most children start feeding within a few weeks and stop intravenous nutrition.

Your child may be transferred to a local hospital before going home.  At home it is a time of gradual readjustment as your family returns to ‘normal life’.  There are support services at the hospital, and CLDF’s support team can be contacted by telephone and email. 

Further information:

CLDF has designed a leaflet for families being introduced to intestinal (small bowel) transplantation.   This has been written in conjunction with the intestinal transplant team at Birmingham Children’s Hospital.  It is also suitable for other members of the family as well as friends, schools and healthcare professionals who want to learn more about intestinal transplants.

To order a copy of the leaflet visit the ‘order literature’ area, where copies of CLDF’s ‘Guide to the liver’ and ‘Glossary of terms’ leaflets, which may also be helpful to read, can be ordered.

An intestinal transplant registry has been set up to record and share experience of this new operation worldwide – visit www.intestinaltransplant.org