Andrew was born in February 2001 and diagnosed with biliary atresia. What a journey we have been through these last few months and there will be more challenges facing us in the future.

Andrew's birth was uncomplicated, but he was slightly jaundiced. His yellowness seemed to fade after 2 weeks, or so we thought, and we assumed he was healthy. Early on he developed abdominal distention and his stools were slowly changing color, becoming increasingly lighter. He was diagnosed with gastroesophageal reflux at 4 weeks. Eventually, at 9 weeks Andrew's coloring and abdominal distention worsened and he went through a series of tests. The doctors mentioned biliary atresia along with many other terrifying conditions. When I researched BA I knew this is what Andrew had but we were still praying for a better outcome. 

We were referred to St. Louis Childrens Hospital and he had an exploratory lap and liver biopsy. They were unable to perform a cholangiogram so they went ahead with the Kasai. BA was the confirmed diagnosis with severe hepatic injury. We were so afraid for our little baby and didn't know what the future held for him. We knew his chances of a successful Kasai were not good at such a late date. But the doctors needed to give the surgery a chance. 

Andrew's post op course was complicated by increased ascites, his incision leaking fluid, poor oral intake and dehydration. He finally had a Broviac placed as it was heartbreaking to see my child get so many IV and lab sticks. His veins would blow so easily and he was black and blue from head to toe.

After 2½ weeks he started to stabilize but his liver function was poor and bile drainage inadequate. We finally took our baby home and it was so great to be home and try to be a normal family again. Andrew has a big brother, Zach who really missed him.

Andrew has been hospitalized only once since his surgery. He has needed periodic Albumin and Vit. K infusions. His bili is 20 and liver enzymes have not worsened significantly. He has been listed since mid June and is doing great at home. He is so jaundiced but is doing all the normal baby things: rolling from side to side, smiling, squealing and we have started feeding him cereals.

Andrew is 5 months old now and we are so lucky to have him in our lives. He is such a content, happy baby (when fed and diapered of course). It has been so helpful to talk to other families who have faced the same challenges. We are not alone.