Pediatric Liver Disease

Like most people, I had never heard of this disease before but it all changed when my daughter, Julia, was diagnosed with Biliary Atresia in the fall of 2017 at just 3 months old.

Lillian had a Kasai procedure to attempt to create an artificial bile flow. When that failed, she was listed for transplant.

At two months old, our son Will was diagnosed with Biliary Atresia, a condition where the bile ducts do not function properly and bile backs up into the liver resulting in liver failure.

When my son, Sawyer, was just eight days old he was diagnosed with a rare liver disease called Biliary Atresia and underwent his first surgery.

Madelyn was diagnosed at 7 weeks with Biliary Atresia. Her first major surgery, The Kasai Procedure failed and Maddie was evaluated and placed on the liver transplant waitlist.

My journey began when I was 8 weeks old, when I went down to Riley Children’s Hospital in Indianapolis, Indiana to receive the Kasai Procedure.

At 41 days old Adriana underwent a cholangiogram that resulted in her being officially diagnosed with Biliary Atresia and receiving her Kasai procedure on January 17, 2019.

At 10 weeks old I was diagnosed with Biliary Atresia and I underwent my first operation of many, called a Kasai.

Anoura was born on Thanksgiving in 2015. She was a very healthy baby until her skin became yellow and her stool became chalky.

Some friends would give you the shirts off their backs. Others would give you the lobes of their livers. That is just what John did when his best friend’s brother needed a liver transplant.

My daughter, Elise, was born in October 2011 with the rare pediatric liver disease, Biliary Atresia. We were told that she would likely require a liver transplant by age 2 in order to survive.

My name is Danielle and I am a 26 year old biliary atresia survivor from Staten Island, NY.