Daniella Lee Battles Biliary Atresia

Our beautiful Daniella Lee was born April 16, 2013. A healthy 9 lbs. 14 ozs. Around 6 weeks old we started noticing yellowing in the corners of her eyes and her skin was jaundice. We took her to her pediatrician on two different occasions and the ER. We were told she was fine. On Friday June 14, 2013 Daniella awoke with a rash on her face and upper body. After discussing her appearance and rash with family members I took her back to her pediatrician and told them something is not right with her. It was then they finally ran the blood work.Shortly after, they told us we needed to get her to the children's hospital right away. We were very scared and not sure what was wrong with her, but not expecting what we were told. That evening was the first time we ever heard the words Biliary Atresia. Biliary Atresia is a very rare very serious life threatening liver disease that effects 1 in 20,000 infants. That's about 300 babies a year. Biliary Atresia is a blockage that effects the bile ducts and the flow of bile from the liver to the small intestine. We were told she would need a life saving surgery called a Kasai, without this surgery she would die. A Kasai is when they shave the damaged bile ducts on the bottom of the liver, remove the gall bladder and cut the small intestine and attach the intestine directly to the liver so the bile can flow. Daniella's Kasai was performed on June 25, 2013 she was in surgery for six hours. If only this operation was a " fix all " to Biliary Atresia that would be wonderful, but it's not there is no cause and no cure for Biliary Atresia. The Kasai just buys time for the baby to grow and gain weight to prepare for transplant. That's were we are now, Daniella is in liver failure and has been added to the transplant waiting list. Hopefully she will be having her transplant in Pittsburgh, PA at Children's hospital of Pittsburgh. We will need to stay in Pittsburgh for five to six months after transplant for her recovery. Please help in way possible for Daniella lee's care and comfort. Thank you.


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Christine Lariviere 
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