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Liver and digestive diseases

Biliary atresia

A liver disease seen in infancy. The bile ducts narrow and become blocked. Bile builds up, causing long-lasting jaundice and liver damage.

Not part of the panel of Türkiye's National Newborn Screening Programme (heel-prick test). Source

Prepare an emergency card

This page is translated from the Turkish original.

This disease is followed through the “Liver and digestive diseases” group.

Understanding the disease

This section has not yet been reviewed by a physician. It summarises patient information from sources such as MedlinePlus, Orphanet and the NHS in plain language. The disease can differ from person to person; talk to your doctor about diagnosis and treatment.

What happens in this disease?

Bile is a digestive fluid made in the liver. It flows to the bowel through the bile ducts. In this disease, the bile ducts inside and outside the liver become blocked by scar tissue. Bile builds up in the liver and damages it. Over time, hardening of the liver (cirrhosis) can develop.

Which symptoms can occur?

Symptoms usually begin when the baby is 2 to 8 weeks old. The baby may gain weight normally in the first month.

  • Jaundice that does not go away after 3 weeks of age (common)
  • Pale, grey, white or clay-colored stools
  • Dark urine
  • A swollen belly, an enlarged liver
  • Slow growth and weight loss
  • Irritability

How is it diagnosed?

Blood tests measure the jaundice substance (bilirubin) and liver function. An abdominal ultrasound, a scan that shows bile flow and a liver biopsy may be done. The diagnosis is usually confirmed during surgery by looking directly at the bile ducts.

Treatment and care

The first treatment is the Kasai operation. The damaged bile ducts are removed and the bowel is joined to the liver. The earlier the operation is done, the better the result can be. This operation does not cure the disease completely. Most children need a liver transplant over time. Steps are taken to prevent bile duct infection. Nutritional support and regular follow-up are part of care. The doctor who follows the disease decides which treatment is suitable.

For the family: inheritance and genetic counselling

Biliary atresia is not an inherited disease. It is not passed from parents to children. Its cause is not yet known; infection, the immune system and developmental problems are being researched. You can talk to your doctor about any questions you have.

Source: MedlinePlus: Biliary atresia · NIDDK (NIH): Biliary atresia – Symptoms & Causes · NIDDK (NIH): Biliary atresia – Diagnosis · NIDDK (NIH): Biliary atresia – Treatment

Key facts

How common is it?
Prevalence: 1-9 per 100 000 (Europe)
How is it inherited?
Multigenic / multifactorial
When does it usually start?
Before birth, Infancy, Newborn period
Reliable sources
Orphanet

These facts are taken from Orphanet and MedlinePlus records (last checked: October 7, 2026). Frequency values are approximate ranges.

You are not alone: patient associations in Türkiye

Non-profit patient and family organizations in Türkiye working on this disease or disease group. Links are for information; Doktorclub is not affiliated with these organizations and does not endorse them.

We could not find a patient association specific to this disease.

For all rare diseases: Nadir Hastalıklar Federasyonu

Support and help

Doktorclub does not diagnose, recommend treatments or refer you to hospitals or doctors. These pages are meant to help you talk with your doctor.

News about Biliary atresia

Clinical trials (ClinicalTrials.gov)

A clinical trial is a regulated study that tests whether a new treatment is safe and whether it works, in patients who volunteer. Most trials look for a certain age, genetic change and health condition. Taking part is voluntary.

This list is not a treatment recommendation. Treatments tested in phase 1–3 trials are investigational (experimental): their efficacy and safety have not yet been proven and they are not approved treatments. Taking part depends on each trial’s criteria and a physician’s assessment; the first step is to talk to the doctor who manages your care.

Questions you can ask your doctor

  • Could this trial be suitable for us?
  • If we take part, how would current treatment and check-ups be affected?
  • Where does the trial take place, and how are travel and accommodation handled?
  • What happens if we want to leave the trial?

ClinicalTrials.gov lists 12 active interventional studies for this disease. 9 are recruiting now; 1 has a site in Türkiye. Last checked: October 7, 2026.

Selected records (studies with a site in Türkiye first):

See all studies on ClinicalTrials.gov · Joining clinical trials

Liver and digestive diseases: other news

Medical codes (for talking with your doctor and finding sources)

These codes identify the disease in international classifications and databases. They can help when you talk with your doctor or look for reliable sources.

Orphanet code: ORPHA:30391 · ICD-11 LB20.21

Codes checked against WHO ICD-11 and Orphanet on October 7, 2026.

This page provides general information and does not replace diagnosis or treatment. Talk to your doctor about symptoms, diagnosis and treatment.

The information on these pages is for general information only and does not replace medical advice. Talk to your doctor about diagnosis and treatment decisions. In an emergency in Türkiye, call 112.

Every update is based on an open source and labeled with its level of evidence. No advertising and no drug brand names. Our scientific principles

This page was translated from Turkish by the Doktorclub editorial team.