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WHAT YOU NEED TO KNOW:
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.
WHILE YOU ARE HERE:
is a legal document that explains the tests, treatments, or procedures that your child may need. Informed consent means you understand what will be done and can make decisions about what you want. You give your permission when you sign the consent form. You can have someone sign this form for you if you are not able to sign it. You have the right to understand your child's medical care in words you know. Before you sign the consent form, understand the risks and benefits of what will be done to your child. Make sure all of your questions are answered.
Stay with your child for comfort and support as often as possible while he is in the hospital. Ask another family member or someone close to the family to stay with your child when you cannot be there. Bring items from home that will comfort your child, such as a favorite blanket or toy.
is a small tube placed in your child's vein that is used to give him medicine or liquids.
- Antibiotics are given to prevent infections caused by bacteria.
- Anti-itching medicine may be given to keep your baby's skin from itching. It may be given in an IV, as a shot, by mouth, or as a skin lotion.
- Diuretics help get rid of extra fluid in your baby's abdomen, lungs, or brain. He may urinate more often when taking diuretics.
- Steroids may be given to decrease inflammation (swelling). Ask your child's healthcare providers for more information about steroids.
- Vitamin supplements and special formulas such as vitamins A, D, E, K, and B complex may be given to make sure your baby is getting enough nutrition. Special formulas that have easy to digest fats may also be given.
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.
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. This is done by removing part or all of your baby's liver and replacing it with a healthy, donated liver. Ask your baby's healthcare provider for more information about liver transplants.
A dietitian will talk to you about your baby's feeding and nutrition. Ask if you can breastfeed your baby. High-calorie liquid feedings may be given through a tube called a nasogastric (NG) tube if your baby is not growing. As he improves, he may be given soft foods that are rich in fiber. Some examples are applesauce, cooked cereal, yogurt, and other baby foods. Ask your baby's healthcare provider for more information about his feeding and nutrition.
Your baby can still have problems after surgery, such as infection, bleeding, and continued liver damage. Poor nutrition and growth can also happen after surgery. Your baby may need to have a liver transplant, if problems continue and cause his liver to stop working. If left untreated, biliary atresia caused toxins to build up in your baby's body. These toxins cause permanent liver and brain damage that can prevent your child from living past the age of 3 years. Biliary atresia can be life-threatening if not treated or if treatment is delayed.
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.
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The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.