Our miracle baby, Evelyn was born on October 25th, 2022. She’s our miracle baby because it took two years, lots of tests, medication, and a doctor or two to get pregnant with our first child, Vivian. So naturally we assumed when it was time for a sibling we would have to go through the same process. Lo and behold the Lord had other plans and granted us with the surprise pregnancy of Evelyn. No doctors required!
My husband and I were overjoyed at the pregnancy and when Evelyn was born we were ready for our next adventure as a family. What we did not realize was that less than a week later there were signs of a serious complication. What started as a simple phone call to the pediatrician lead to an admission at UK Kentucky Children’s Hospital. Sweet little newborn Evelyn was poked, prodded, and tested for a week before the doctors finally diagnosed her with a rare condition called Biliary Atresia, BA.
With BA, babies are born with damaged or non-existent ducts that would lead bile out of the liver. If the bile continues to stay or back up into the liver it can lead to cirrhosis and end-stage liver failure. A life that started with no doctors was suddenly destined to be filled with them.
At 5 weeks old Evelyn underwent a delicate and life-saving procedure called a Kasai to try and save her liver. This procedure connected a portion of her intestines to her liver to drain the bile directly and bypass the ducts. Unfortunately, BA is a chronic disease that can continue to develop and still cause the liver to scar and lose function, even with the Kasai. Evelyn responded well for several months post-kasai but suddenly started to display symptoms of the progression of her liver disease.
Evelyn was admitted to Cincinnati Children’s Hospital while we waited for a liver. Evelyn received her gift of life from a deceased donor on September 22, 2023. We cannot express our gratitude to Evelyn’s donor. The child she received her liver from will forever be in our hearts.
We’re so grateful for the COTA organization and their support to families of children who need or have received transplants. As much as we planned for our daughter, no parent can plan for the financial toll of having a child in a medical crisis. We will continue to fundraise for Evelyn. This is a lifelong disease that will continue to impact our family in many ways, including financially. Fortunately, Evelyn will be able to use funds from COTA for her entire life. By donating you are helping to ensure my daughter as a young woman never has to worry if she can afford her doctors or the medicine that keeps her from rejecting her organ. Please consider donating to COTA for Evelyn to assist with a lifetime of transplant-related expenses. We welcome any generosity from our family, friends, and community.
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.