On July 22nd, 2018 we received the most beautiful gift of all, Emerson Mae Donaldson. Within the first couple days of her life, the doctors knew that something was not right. Her direct bilirubin levels were not decreasing which raised concern from an amazing doctor who immediately set up an appointment with the GI Team at Children’s Hospital of Wisconsin (CHW). The doctors at CHW shared their concern that Emerson had a liver condition known as Biliary Atresia. This resulted in multiple tests to confirm which started with various scans and a liver biopsy. As we sat in her hospital room waiting for the results, the doctor came in to share the news that it was likely what they suspected, Biliary Atresia. Our hearts sank, tears flowed and our life course was forever affected. We made it our mission to do everything possible to help our sweet Emerson Mae.
After receiving the news and learning more about Biliary Atresia we moved forward with her Kasai procedure on August 13th. A Kasai in simple terms removes the gall bladder and bile ducts while attaching her small intestine directly to her liver. If the procedure works, then any bile created within the liver drains directly into the small intestine. We were told for Kasai she would be in hospital for 14 days with 2 of those being in ICU. She was in hospital for 6 days, ICU only 12 hours. We were instructed to expect 3 days of an NG Tube but she had it less than a day.
After her Kasai we started a new routine that consisted of multiple medications and vitamins. We continued for nearly four months before hitting our first bump in the road, Cholangitis, infection of the liver. She pushed through until May of 2019 where she had a long string of hospital stays (5 of 7 weekends) for various viral infections and another bout of Cholangitis. She began to not only struggle with the infections but weight gain started to become an issue as well. This deadly combination resulted in another difficult conversation, Liver Transplant. While we were aware that this would ultimately come, we still were not ready to face the fact that she would be listed on the transplant list before her first birthday. The drive home after the appointment was somber, and again tears flowed.
At this point the doctor suggested the placement of an NG Tube to help with weight gain. While difficult to make, this was one of the best decisions we made. Within two months of the NG Tube we saw immediate results and increased weight gain. We learned during the transplant evaluation that Emerson was not a recipient for a living donor. This was devastating knowing that we were unable to help her. We decided to explore other options to increase her chances of receiving a new liver. Discussions lead us to listing her for transplant both in Milwaukee and Cincinnati.
Her smiles and attitude are contagious, despite her daily struggles and serious condition. Everyday she wakes up with a smile on her face and the motivation to prevail over Biliary Atresia. She’s gotten to the point where being poked and prodded from doctors no longer phases her. Emerson has taught us the true meaning of persistence and courage no matter what life sends your way. The support from family, friends, and the medical community has been second to none. We thank you for your prayers and recognize we could not do this without you.
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.