What will happen in the future?
Biliary atresia is a rare disease of the liver and bile ducts. It presents very early in life and requires urgent treatment.
In newborns with biliary atresia, bile ducts are missing, incomplete, blocked or damaged. This stops the flow of bile from the liver to the gallbladder and small intestine. Bile backs up and gets trapped inside the liver.
The information on this page is for:
- Parents of babies and children with biliary atresia or suspected biliary atresia.
- Young people with biliary atresia.
- Family, friends, carers, and healthcare professionals.
Every child with biliary atresia is different, so we don’t always know what will happen in the future. But as your child grows, they will be closely monitored with regular clinic appointments, blood tests and scans. How often they need to go to hospital will vary for each child.
On this page:
Our family life has been challenging, particularly for my two older children. My husband took extended leave from work to care for us, and my parents, family and in-laws provided essential support with our other children. There were difficult moments, but with video calls and hospital visits, we managed to stay connected. Now, our children are happy, and our family is slowly getting back to normal.
Biliary atresia in adulthood
If your child reaches adulthood with their own liver, it is likely that they will develop complications at some point. Existing complications can also become more difficult to manage. It is highly likely that they will need a liver transplant at some point in their adult life.
Remember – Liver UK is here to support your child through their transition to adult services and throughout their adult life.
If your child reaches adulthood after receiving a liver transplant as a child, they will need to take medicines and have regular check-ups to keep their new liver healthy.
It is important to remember that most children with biliary atresia reach adulthood and have a good quality of life. This may be with their own liver following a Kasai procedure or following a liver transplant. They move (transition) to adult liver services and keep having regular check-ups, blood tests and scans throughout their lives.
Liver UK is in touch with a large number of families who have children with biliary atresia. These children live happy, fulfilling lives. Biliary atresia doesn’t have to hold a child back from living a relatively normal life.
Liver transplant
Some babies and children with biliary atresia will need a liver transplant early in life. Others will keep their own liver for a lot longer following a Kasai procedure and may only need a transplant later in life.
A liver transplant is an operation to replace a damaged liver with a healthy one from a donor. Children may receive a whole, split or reduced liver from a deceased donor, or part of a liver from a living donor. It is also possible that a parent or family member could give part of their own liver. Ask your child’s medical team for more information on this.
A successful liver transplant can save a child’s life and will greatly improve their quality of life. But a liver transplant is a major operation and it will only be done after the benefits and risks have been carefully weighed up. After a successful transplant, children need life-long medicines and regular follow-up appointments. If liver transplantation is an option for your child, this will be discussed with you by your child’s medical team.
The outlook for children who need a liver transplant in the UK is very encouraging. More than 9 out of 10 are alive five years after their transplant, and over 8 out of 10 are still doing well twenty years later.
Louis was four days old when doctors diagnosed him with biliary atresia and he had the Kasai procedure eight days later. Since then he has joined a transplant football team, run the London Marathon and is training to be a teacher. Now, as he waits on the liver transplant list, Louis is pushing himself to stay as fit and healthy as possible.
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This content was last reviewed: July 2026
Our expert reviewers:
We would like to thank everyone who helped with creating and reviewing this page. Including Professor Mark Davenport, Consultant Paediatric Surgeon, King’s College Hospital and Professor Deirdre Kelly, Professor of Paediatric Hepatology. And all our patient reviewers.
Find out how we make our patient information.
Everyone’s experience of liver disease will be different. Always talk to your specialist medical team for personal advice.
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