Biliary Atresia - What You Should Know

Biliary Atresia is a liver disease that, as a parent is devastating. I'm writing this article to give parents some information on this disease. My daughter is 12 years old now and she was diagnosed with it when she was 3 weeks old. The first thing you should know is what it is exactly. Biliary Atresia is a condition in newborns in which the bile duct between the liver and the small intestine is blocked or just not there at all. My daughters wasn't there at all nor was her gallbladder. As a parent the first thing you want to know is why and what causes it. Unfortunately the cause is unknown.

Next what you should know is what so they do to diagnose this and what are the symptoms. The biggest symptom is jaundice. Sometimes it can take a few days or a few weeks for you to notice. In my daughters case they new she had jaundice before we left the hospital. Some other symptoms include clay colored stools, dark urine, swollen abdomen and a large liver.

To diagnose this they will do blood work first. After that they do ultrasound's. If they still haven't ruled it out they do a radioactive scan I think its called a Hydascan. If this test comes back bad they will do a biopsy. If the biopsy comes back showing Biliary Atresia the child will need surgery as soon as possible, they did my daughters the next day. The surgery that the doctor will do is called a Kasia. The reason they do it so fast is because the more timely the surgery is the better outcomes they have had. Even with the Kasia most children will go on to have a transplant. My daughter is a lucky one and she hasn't needed one yet.

This is a very rare disease. Only about 1 child in 10 to 20 thousand babies are affected every year. It seems to effect girls more than boys.

Now after reading this and you are a parent who has just found out that your baby has this, what you should know is that this is not an easy thing to handle. You will ask yourself why my baby? It made me a very bitter person for a long time. Then one day I realized that I am a lucky mom. I will never take anything any of my kids do for granted. This had made me a better person and a better mom.

There will be days that you don't think you can handle it. The best thing to do is educate yourself and get some help. There is allot of help on liverfamilies.com, you can talk to other people going through the same thing. Sometimes it helps to talk to people who are going thought the same thing.