Living with Biliary atresia
A rare condition in which bile ducts are blocked or missing in newborns, causing long-lasting jaundice.
Understanding Biliary atresia
It leads to severe and long-lasting yellowing of the skin (jaundice) in newborns and pale, clay-colored stools. Bile does not flow well from the liver.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Long-lasting jaundice in a newborn
- Clay-colored stools
- Dark yellow urine
- Enlarged liver
- Slow weight gain (failure to thrive)
- Poor fat absorption
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include digestive system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Digestive system specialists (gastroenterologists); Genetic specialists (geneticists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with rare disease patient organizations for support
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD lists genetic changes for this condition but doesn't name a specific gene.
Also known as: atresia of bile duct; atresia of bile ducts; ba - biliary atresia; biliary atresia, congenital; biliary duct atresia; congenital biliary atresia
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Biliary atresia.
Explore research for Biliary atresia
Explore actively recruiting Biliary atresia studies with HealthSpark.
Find actively recruiting studies for Biliary atresia with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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