Biliary Atresia

WHAT YOU SHOULD KNOW:

• Biliary (bil-e-AR-e) atresia (ah-TRE-zhah) is a serious liver and bile duct disease that is seen in infants. This occurs when the bile ducts inside and outside the liver are blocked or missing. Bile flow from the liver and gallbladder going to the intestines (bowel) is affected. The bile gets trapped and stored up in the liver, causing damage to the liver cells. Over time, this scarring may prevent blood flow through the liver and make it stop working permanently. The exact cause of biliary atresia is not known. Infections, toxins (harmful substances), or problems with the immune system or how the bile ducts were formed may cause biliary atresia.
  
  
• Common signs and symptoms may appear shortly after birth or from 2 to 8 weeks after birth. Your baby may appear jaundiced (yellow skin or eyes). He may also have abdominal (belly) pain, an enlarged abdomen, very dark urine, or clay-colored stools (BMs). Abdominal ultrasound, x-rays, cholangiogram, liver or gallbladder scan, or liver biopsy may be used to diagnose biliary atresia. Treatment may include surgery or medicines to ease his symptoms. The earlier biliary atresia is found and treated, the better the chances that your baby may survive. With treatment, such as medicine and surgery, your baby's symptoms may be relieved and his quality of life may be improved.

AFTER YOU LEAVE:

Medicines:

• Keep a current list of your child's medicines: Include the amounts, and when, how, and why they are taken. Bring the list and the medicines in their containers to follow-up visits. Carry your child's medicine list with you in case of an emergency. Throw away old medicine lists. Give vitamins, herbs, or food supplements only as directed.
  
  
• Give your child's medicine as directed: Call your child's primary healthcare provider if you think the medicine is not working as expected. Tell him if your child is allergic to any medicine. Ask before you change or stop giving your child his medicines.
  
  
• Do not give aspirin to children under 18 years of age: Your child could develop Reye syndrome if he takes aspirin. Reye syndrome can cause life-threatening brain and liver damage. Check your child's medicine labels for aspirin, salicylates, or oil of wintergreen.
  
  
• Antibiotics: This medicine is given to fight an infection caused by bacteria. Give your child this medicine exactly as ordered by his primary healthcare provider. Do not stop giving your child the antibiotics unless directed by his primary healthcare provider. Never save antibiotics or give your child leftover antibiotics that were given to him for another illness.
  
  
• Pain medicine: Your child may need medicine to take away or decrease pain. Know how often your child should get the medicine and how much. Watch for signs of pain in your child. Tell caregivers if his pain continues or gets worse. To prevent falls, stay with your child to help him get out of bed.

Ask for more information about where and when to take your child for follow-up visits:

For continuing care, treatments, or home services for your child, ask for information.

Diet:

A caregiver, called a dietitian, may talk to you about your baby's feeding and nutrition. A dietitian can help you to increase the amount of calories your baby gets. You may also discuss with him if it is OK to breastfeed your baby or what milk you should feed him.

• Ask your baby's caregiver about high-calorie liquid feedings. These are given through a tube called a nasogastric (NG) tube.
  
  
• Give your baby a good, well-balanced diet to help him feel better, have more energy, and heal faster. If your baby is able to eat normally, let him eat a variety of healthy foods. These may include fruits, vegetables, dairy products, or other baby foods.
  
  
• Special formulas or oils may be added to your baby's foods or liquids. These may add extra calories to help him grow.

Rest:

Your baby should rest as much as possible and get plenty of sleep.

Where can I get more information?

Accepting that your baby has biliary atresia may be hard. You, your family, and those close to you may feel scared, sad, or angry. These are normal feelings. Talk to your baby's caregivers, your family, or friends about your feelings. You may also want to join a support group. This is a group of people who have babies with biliary atresia. Contact the following for more information:

• American Liver Foundation
  39 Broadway Suite 2700
  New York , New York 10006
  Phone: 1- 212 - 668-1000
  Phone: 1- 800 - 465-4837
  Web Address: http://www.liverfoundation.org
  

• National Digestive Diseases Information Clearinghouse (NDDIC)
  2 Information Way
  Bethesda , MD 20892-3570
  Phone: 1- 800 - 891-5389
  Web Address: www.digestive.niddk.nih.gov
  

CONTACT A CAREGIVER IF:

• 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 disease, medicine, or care.

SEEK CARE IMMEDIATELY IF:

• Your baby has more jaundice (yellow skin or eyes) than before.
  
  
• Your baby has trouble breathing or his lips and fingernails are turning blue in color.
  
  
• Your baby is not able to eat or drink, or is urinating less or not at all.
  
  
• Your baby is having a seizure (convulsion).
  
  
• Your baby looks very weak or sleeps more than usual.
  
  
• Your baby's vomit (throw up) has blood in it.
  
  
• Your baby's wound or bandage has pus or a bad smell even if you are cleaning it everyday.

Learn more about Biliary Atresia (Discharge Care)