Biliary Atresia- What is it? What its like to live with BA....
Biliary Atresia is a rare condition in newborn infants in which the common bile duct between the liver and the small intestine is blocked or absent. If unrecognized, the condition leads to liver failure. The cause of the condition is unknown. The only effective treatments are certain surgeries such as the Kasai Procedure, or liver transplantation. A few days after my diagnosis (At about 9 weeks old and 2 days) I had the Kasai Procedure done. Studies show that the Kasai works best if it is performed by two months of age. Other studies say it is best done before 3 months of age. After 3 months, the success of the Kasai is poor. 
Having this procedure has allowed me to live to this day. Without it, Biliary Atresia babies can't live much longer than the age of 2. We were told that about 1/3 would have a successful outcome undergoing the Kasai only, 1/3 would have bile flow, then the Kasai would fail, the last 1/3 -the Kasai would fail right away and liver transplant would be needed immediately.
It has been a rough first 18 months of life for me. After only a few weeks after my Kasai Procedure surgery discharge, I was readmitted back to Stanford for a suspected Ascending Cholangitis episode. I received IV antibiotics for 3 weeks. About two months after my Kasai Procedure, my spleen became palpable (usually the spleen can not be felt) due to the portal hypertension (increase in blood pressure in the veins of the portal system caused by obstruction in the liver). There have been many times that my tummy grows larger. This usually occurs when I have problems with low Albumin and Ascites. Basically, these are signs that the liver is not working as well as it could despite the Kasai. My liver is slowly becoming less efficient and causing a back flow into the tissues and spleen. The rate of progressive liver disease (cirrhosis) and the worsening of portal hypertension will determine how long this Kasai will last me. Signs of internal bleeding will be the next step in the progression of this disease. For now, I just continue to do what I need to survive each day.
My typical routine may be different than most kids my age. I take many medications on a daily basis. I take 6 doses of meds in the morning, 3 in the afternoon, and 4 in the evening. I have labs drawn frequently and have had 4 hospitalizations in my 18 months of life. I have had issues with unstable labs, low iron levels, ascites, portal hypertension, Albumin and blood transfusions and multiple Ascending Cholangitis episodes ... all related to my condition. Despite all of this, I manage to have a smile 
on my face... and mommy says I never fail to put a smile on the face of those around me. Mommy thinks that I am full of light and hope... whether I know it or not. I fight my illness with my love of life and with my beautiful, fighting spirit that God has given me. Mom and dad believe that I am a special gift from above 
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