Joseph (Nebraska)

Joseph was born in February 2008 weighing 6lbs 6 oz. He was an absolute perfect addition to our family of 3. Shortly after Joe’s arrival, we learned there was a problem with his liver. We spent the weeks following having many tests done including lab draws, ultrasounds, HIDA scans, and a liver biopsy. At 7 weeks of age, we were given the diagnosis of biliary atresia(BA), a progressive and somewhat rare(1 in 15,000 children per year) liver disease affecting bile flow and function of the liver. On March 30, 2008, Joe underwent a major surgery known as the Kasai in an attempt to improve bile flow and prolong the life of his liver. This surgery is life saving for children with BA. Without the Kasai surgery the only option would of been immediate liver transplant. As frightening as Joe’s disease is for us as parents, we are so grateful the Kasai and ultimately liver transplantation are options for our child. Joe’s Kasai has been successful so far but ultimately over 85% of children with this disease will require a liver transplant.

Joe has a lot of things going for him! He is growing wonderfully at this time(often a struggle for kids with liver disease) and his liver drains bile great at this time(thanks to the Kasai surgery). Joe’s struggle has been with some serious infections related to his liver disease and the development of portal hypertension(increased pressure in the liver). Joe was hospitalized many times the first 14 months with liver infections(cholangitis)… but that little liver of his has compensated! We had over a year with no hospital admissions but at age 2 1/2 he developed a fever and landed in the hospital with cholangitis. This infection led to an evaluation for liver transplant so the team could assess where he was at. After going thru this we know Joe’s disease is progressing but that he is still compensating and does not need to be listed at this time. We realize this can change at any moment.

Joe is now 2 ½ years old with big brown eyes that make you want to melt. His best friend is, by far, his 4-year-old brother Jackson. Joe loves squishing his toes in the mud, going down the slide at the park, and rocking before bed at night. In the last year, he has gotten to visit the mountains and walk in the ocean for the very first time. We are grateful for healthy, normal days and everyday life experiences. Today Joe is happy and thriving! Each day is a gift.


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