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Alagille syndrome: yellow skin, itching and poor growth in a baby or child, a genetic cause that can reach the heart and kidneys, the tests, treatment, and food
For a parent whose baby or child has, or might have, Alagille syndrome, for anyone living with it, and for the people who help them. It passes on, by name, what the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK, part of the NIH) says: what Alagille syndrome is and its signs in the liver and the rest of the body; its genetic cause and how it runs in families; its complications; how doctors find it; treatment for the itching, the liver and the heart; and food, growth and vitamins. It builds the questions to ask and prints a card. Nothing is saved.
Right now
- A baby still yellow after 3 weeks, or with pale stools? See a doctor soon (ours); there is more than one cause.
- Sudden weakness on one side, trouble speaking, a sudden very bad headache, a seizure, vomiting blood, or a child very hard to wake? Call 911 (ours).
- At the end of your rope, or having thoughts of suicide? Call or text 988, any hour, free (ours).
More help
- The liver on this site: Biliary atresia · Cirrhosis · Getting ready for a liver biopsy · Liver transplant.
- For a child: Kidney disease in children · Helping your child eat well · Caring for someone.
- For you: My medicines · Low-cost health care · Get ready for your appointment. In an emergency: Help right now (988, 911). All our free tools.
An upset stomach, and not sure this is the right page? The pages on this site for throwing up, diarrhea, heartburn and constipation, on one list.
Other guides on this site that go with this page
Free to read. We chose these ourselves; no professional did. Each guide was written with AI and has not been reviewed by a professional. They are general information, not advice.
- Fatty liver disease in children: NAFLD and NASH, the signs, the tests, treatment, and food: fatty liver disease in children (NAFLD and NASH): the silent signs, the causes, the tests, gradual weight change and habits, supplements, and food, for parents.
- Primary biliary cholangitis: the signs, the tests, treatment, and day to day: primary biliary cholangitis: the signs, the tests, treatment, and day to day.
This page and its wording were written with AI (Claude) for Scarlet Beast (our AI policy). No doctor or nurse has reviewed it. The facts were read on October 22, 2026 on NIDDK’s (NIH) page Alagille Syndrome, all five sections, last reviewed in January 2019. Ours: the 911 and 988 lines; that a baby still yellow after 3 weeks or with pale stools needs a doctor soon; that a new mutation is no one’s doing; asking before you stop or change a medicine; keeping one list of medicines and vitamins and a record of growth; when to call the doctor soon; the questions to ask; the card; the links to our other pages; and the order of the steps. What we left out: its section on clinical trials, its references, its drawings, the brand names of ursodiol, and the other pages it links to, which we did not read. Nothing you tick or type here is saved or sent.