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ALF has created this private Facebook support group for family members, and patients and moderated by an ALF staff member and a Biliary Atresia parent and patient. This community features exclusive monthly educational programs from pediatric liver disease experts on different topics relating to the Biliary Atresia journey.
Biliary atresia is a disease of the bile ducts that affects only infants. Bile is a digestive liquid that is made in the liver. It travels through the bile ducts to the small intestine, where it helps digest fats.
In biliary atresia, the bile ducts become inflamed and blocked soon after birth. This causes bile to remain in the liver, where it starts to destroy liver cells rapidly and cause cirrhosis, or scarring of the liver.
The cause of this disease is not known. In some infants, the condition is most likely congenital, meaning present from birth. About one in 10 babies with biliary atresia have other congenital defects. Some research indicates that an early viral infection may be linked to biliary atresia.
Scientists do know that biliary atresia is not hereditary; parents do not pass it on to their child. It is also not contagious, and it is not preventable. It is also not caused by anything an expectant mother did or did not do.
Symptoms of biliary atresia usually appear between two and six weeks after birth. The baby will appear jaundiced, with yellowing of the skin and whites of the eyes. The liver may harden and the abdomen may become swollen. Stools appear pale grey and the urine may appear dark. Some babies may develop intense itching.
Since other conditions lead to symptoms similar to those of biliary atresia, doctors must perform many tests before a conclusive diagnosis can be made. These tests may include blood and liver tests, an ultrasound examination, X-rays and a liver biopsy, in which a small amount of liver tissue is removed with a needle for examination in a laboratory.
Unfortunately, there is no cure for biliary atresia. The only treatment is a surgical procedure in which the blocked bile ducts outside the liver are replaced with a length of the baby’s own intestine, which acts as a new duct. This surgery is called the Kasai procedure after Dr. Morio Kasai, the Japanese surgeon who developed it.
The aim of the Kasai procedure is to allow drainage of bile from the liver into the intestine through the new duct. The operation is completely or partially successful about 80 percent of the time if performed early (before 3 months of age). In babies who respond well, jaundice and other symptoms usually disappear after several weeks.
In cases where the Kasai procedure does not work, the problem often lies in the fact that blocked bile ducts are “intrahepatic,” or inside the liver, as well as extrahepatic, or outside the liver. No procedure, except for liver transplant, has been developed to replace blocked intrahepatic ducts.
The Kasai procedure is most successful in babies younger than 3-months-old, so early diagnosis is important.
If the Kasai procedure is not successful, the only other option is a liver transplant. However, a suitable donor organ must be found quickly, before damage to the liver from the backed-up bile becomes deadly.
The aim of treatment after surgery is to encourage normal growth and development. If bile flow is good, the child is given a regular diet. If tests show that bile flow is reduced, a low-fat diet and vitamin supplements will be required, since the absorption of fats and vitamins is impaired.
Without successful treatment, few children with biliary atresia live beyond age two. In some cases, where the Kasai procedure is completely successful, the child may recover and live a normal life. However, in most cases, even when surgery is successful, patients will suffer gradual damage to the liver. These children will need specialized medical care throughout their lives, and many will ultimately need a liver transplant.
It is important for parents and caregivers to have access to resources and support services, including appropriate and reliable information.
ALF will be launching this fall a Pediatric Liver Disease Information Center, so stay tuned for more information by following us on social media, signing up for our newsletter and of course joining our FB Support Group.
ALF committee members consist of parents, doctors and patients who have a firsthand experience with Biliary Atresia.
Allan Doerr
ALF Board of Directors
Parent of child with Biliary Atresia
Liz Leesman
ALF Board of Directors
Parent of child with Biliary Atresia who was a transplant recipient in 2007
Raphael Kellner
ALF Biliary Atresia Initiative Committee Member
Transplant Recipient
Dr. Alisha Mavis
Gastroenterologist
Tom Nealon
Former ALF CEO
ALF Board of Directors
Ellen Rucker Sellers
ALF Board of Directors
Parent of child who was a liver transplant recipient
There are many different types of liver disease. But no matter what type you have, the damage to your liver is likely to progress in a similar way.
Whether your liver is infected with a virus, injured by chemicals, or under attack from your own immune system, the basic danger is the same – that your liver will become so damaged that it can no longer work to keep you alive.
Cirrhosis, liver cancer, and liver failure are serious conditions that can threaten your life. Once you have reached these stages of liver disease, your treatment options may be very limited.
That’s why it’s important to catch liver disease early, in the inflammation and fibrosis stages. If you are treated successfully at these stages, your liver may have a chance to heal itself and recover.
Talk to your doctor about liver disease. Find out if you are at risk or if you should undergo any tests or vaccinations.
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Speak with your doctor about the ongoing progress and results of these trials to get the most up-to-date information on new treatments. Participating in a clinical trial is a great way to contribute to curing, preventing and treating liver disease and its complications.
Start your search here to find clinical trials that need people like you.
Last Updated on April 26, 2022
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