Liver Transplant

A liver transplant is an operation to remove a person’s liver and replace it with all, or part, of another person’s liver.

A child needs a liver transplant when their liver is damaged, isn’t working properly and isn’t likely to recover.

There are many different conditions which can lead to liver damage.

A team of liver experts decide when a child’s condition means that they need a liver transplant. Before decided whether a child can be added to the transplant list, a transplant assessment must take place.

Deciding that a child should be added to the transplant list is a difficult decision. Liver transplantation isn’t a cure for liver disease and does bring its own set of medical problems. However, for many children with liver disease a transplant can mean living longer with a much better quality of life.

A transplant assessment is a process which involves a number of medical tests and meetings with professionals who work in the liver team. The assessment aims to find out if a liver transplant is necessary for your child and if it’s the best treatment option.

It’s also an opportunity for families to meet with the team to get more information about the transplant process. The team you will meet with includes a number of different healthcare professionals including a psychologist and a social worker.

Normally, the transplant assessment takes place over a number of days. It is mostly done as an inpatient stay where your child may need to stay in hospital overnight.

If a transplant is urgent, the assessment will take place as quickly as possible.

Following the assessment there are a number of possible outcomes:

• Your child will be placed on the transplant list
• Your child can’t go on the transplant list now but can in the future
• It is not suitable for your child to go on the transplant list

Usually children will wait at home until a suitable liver is available. Sometimes, if your child is very unwell, he/she may need to wait in hospital until a liver is available.

Your child must be ready to go straight to hospital at any point, day or night. This can include having someone on hand to look after your other children or to ensure someone can care for your pets. Helping you to be prepared is all part of the transplant assessment process and your healthcare team will support you to make all of the necessary arrangements.

Many people believe that the waiting list is like a ladder’ that a child’s name is added to the bottom rung and moves up the ladder when the person at the top receives a transplant. This is not the case.

When a donor liver becomes available the surgical and medical teams decide who should receive the liver. They do this using a set of guidelines which include the child’s blood group, the size of the liver and how urgently the child needs the liver.

There are three paediatric liver centres in the UK. All children’s liver transplants take place at one of these centres:

• King’s College Hospital, London
• Birmingham Women’s and Children’s Hospital
• Leeds General Infirmary

The good news is survival rates are very high and are constantly improving. 90% of children who have a liver transplant survive for at least five years. 75% of children who have a liver transplant survive for at least 15-20 years with a good quality of life.

There are a number of different complications which may occur. These include a small risk of the new liver not working properly, blockage of one of the new blood vessels, rejection of the new liver, infections, problems with the bile ducts (biliary problems) and the risk of a hole in the small intestine (bowel perforation).

There are other complications that can arise which are less common. These will be discussed with you in detail prior to transplantation. Patients are closely monitored at all times before and after the transplant so that any complications can be dealt with as early as possible.

Split liver

This is the most common source of livers for children. The liver from a donor who has died can be divided into two parts so that two patients can benefit from one donor’s liver.

The liver can be split into two lobes with the right lobe being given to an adult or an older child, and the left lobe or a left lateral segment (part of the left lobe) going to a young child. The cut surfaces are sealed and the new piece of liver grows with the patient.

Living donor transplantation

In many situations, it is possible for somebody the child knows to give him/her part of their liver. The donor has to be carefully assessed to see if they are suitable and not everyone who would like to donate part of their liver is able to. If you would like further information about this, speak to your medical team.

The following types of liver transplant are also undertaken in children, but in smaller numbers:

Whole liver

In this type of transplant, the liver is an appropriate size for the child and the whole liver is used. The liver will be from a donor with a similar age or weight of the recipient.

Cut down (reduced graft)

A liver can also be made smaller so that it is the correct size for the child who is receiving it; in this type of transplant there is only one recipient.

Auxiliary transplantation

In certain types of liver disease, particularly some metabolic diseases, part of a donor liver can be transplanted alongside a child’s own liver. The transplanted liver is able to carry out the functions of the liver which are not performed by the child’s own liver. This type of transplant may also be carried out where there is the possibility of the child’s liver recovering, as can occur in some cases of acute liver failure.

At the end of the operation your child will be taken to the Intensive Care Until (often shortened to ICU, ITU or PICU). The surgical team will give you feedback about the transplant procedure and any other updates regarding your child’s condition. The new liver will be carefully monitored by scans and blood tests.

Your child will return to the ward to continue his/her recovery and rehabilitation when they are well enough.

The nurse specialist team will work with you to learn how to take care of your child at home with the support of your child’s GP. This includes telling you about the medication your child will need. When your child leaves the hospital they will be followed up with regular outpatient appointments and regular blood tests.

Unfortunately, whilst a liver transplant is an option to treat liver disease, it is not a cure. It can offer a child a real improvement in their quality of life for many years but it is a serious procedure which comes with many of its own issues. Children require medication for the rest of their life and will need to be monitored; however, there are many adults who were transplanted as children who are now healthy and living full, active lives.

I am a parent of a child with liver disease – who can I speak to if I have any further questions regarding transplantation or support services?

If your child has been listed for transplant then your transplant co-ordinator can guide you through the process and answer any questions you may have. Your transplant co-ordinator can give you further information leaflets, called “Stepping Stones” in Children’s Liver Transplantation, which focus on each step of the transplant process including complications and rejection in more detail. Your consultant and clinical nurse specialist are also there to answer any questions you have regarding transplant and, of course, CLDF is always here for support and advice.

Contact families@childliverdisease.org / 0121 212 6028.