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BILIARY ATRESIA

Biliary Atresia

WHAT YOU NEED TO KNOW:

What is biliary atresia? Biliary atresia is a disease that damages an infant's liver before or shortly after birth. Bile ducts carry bile from your baby's liver to his small intestines. Bile helps digest food. When your baby's bile ducts are damaged, bile is trapped in the liver. This can cause cirrhosis (scarring), swelling, and advance to liver failure. The cause of biliary atresia is not known. Biliary atresia can be life-threatening if not treated or if treatment is delayed.

What are the signs and symptoms of biliary atresia? Your baby may appear normal at birth. Jaundice (yellowing of skin and eyes) appears within the first 90 days of life. Your baby may also have any of the following symptoms:

  • Weight loss or poor growth

  • Discomfort or irritability

  • Foul-smelling, white, or clay-colored bowel movements

  • Dark urine

How is biliary atresia diagnosed?

  • Blood and urine tests will be done to see how your baby's liver is working. These tests will also show if your baby has any viruses that could be causing problems with his liver.

  • Imaging tests will be done to see your baby's liver and bile ducts. These tests will show your baby's healthcare provider if there is blockage in your baby's bile ducts. It will also show if there is liver damage. Your baby will need dye injected into his vein to make the images easier to see. Tell your baby's healthcare provider if your baby has had any reaction to dyes in the past.

  • A liver biopsy is a sample of tissue taken from your baby's liver and sent to a lab for tests.

How is biliary atresia treated? Surgery is done to bypass the damaged ducts and connect the liver to your baby's small intestine. This new duct allows bile to pass from the liver into the intestine. A liver transplant may be needed if the liver is severely damaged and does not work properly. Ask your baby's healthcare provider for more information about liver transplants.

When should I contact my baby's healthcare provider?

  • Your child has a fever.

  • Your baby is irritable and crying more than usual.

  • Your baby's skin is itchy, swollen, or has a rash.

  • You have any questions or concerns about your baby's condition or care.

When should I seek immediate care or call 911?

  • Your baby has more jaundice (yellow skin or eyes) than before.

  • Your baby has trouble breathing, or his lips and fingernails are turning blue.

  • Your baby is not able to eat or drink, or is urinating less or not at all.

  • Your baby has a seizure.

  • Your baby looks very weak or sleeps more than usual.

  • Your baby's vomit has blood in it.

  • Your baby's wound or bandage has pus or a bad smell even if you are cleaning it every day.

CARE AGREEMENT:

You have the right to help plan your child's care. Learn about your child's health condition and how it may be treated. Discuss treatment options with your child's caregivers to decide what care you want for your child.