This is Ayla, our beautiful BA warrior. Ayla was diagnosed with BA (Biliary Atresia) in March of 2026, at four months old. Prolonged jaundice after birth led to additional testing, which ultimately revealed that Ayla’s liver was under significant stress. We were sent immediately to Children’s Mercy Hospital (CMH) in Kansas City, and after a biopsy we received her diagnosis. Biliary Atresia is a rare disease in which the bile ducts do not properly drain bile, resulting in a buildup of bile in the liver. The biopsy revealed that Ayla’s liver was too damaged for surgeons to perform a Kasai, a common procedure used to treat Biliary Atresia. Transplant, we were informed, was our only option.
Ayla’s transplant evaluation was conducted in early April at CMH, and on April 30, 2026, she was placed on the transplant list. Unfortunately, our family contracted COVID shortly after, and Ayla had to be paused (or “inactivated”) on the list for three weeks. During that time she battled ascites (buildup of fluid in her abdomen) and a skin infection after an IV placement. Our girl fought through it all and was reactivated on the liver transplant list at the end of May.
Biliary Atresia, especially unpalliated Biliary Atresia (BA without a Kasai), can lead to rapid decline, and as June set in, Ayla experienced many setbacks. In addition to continued ascites, she was diagnosed with metabolic acidosis, suspected cholangitis, biliary lakes, coagulopathy, failure to gain weight in a pediatric patient, and severe protein-calorie malnutrition. In order to provide her with adequate nutrients, a PICC line was placed. Because she needed so many interventions and such close care, we knew we wouldn’t be leaving the hospital until Ayla received her transplant. But through all the exams and pokes and prods, our girl remained a trooper. We couldn’t be more proud of her.
On June 3rd, we received our first offer for a new liver. Surgery, we were told, would be that weekend. Just over twenty-four hours later, however, we received a second offer and the plan was to proceed with that second liver. Surgery was set for 10 pm the following day, on June 5th. Around 9:30 on the night of June 5th, we walked with our baby to the OR, where we said our see-yah-soons and fit in as many hugs and kisses as we could. She went safely with the anesthesia team through the OR doors. As her surgeons examined the new liver on the side table, however, they discovered that the liver had been damaged during procurement. Surgery didn’t proceed.
The roller coaster ride we were on continued. Thirty minutes after the first attempt at transplant fell through, the team was able to secure us the original liver we were offered. Ayla was taken to the PICU, where she would be kept lightly sedated until transplant two days later. Hours before surgery was scheduled for the second attempt, we received the news that the transplant had been canceled.
Ayla remained in the PICU for a few more days, slowly coming off sedation medication and being watched closely by doctors and nurses, before we returned to the floor, where we settled in to wait for another offer. We made the most of our days, playing, reading books, and testing new purees. We discovered silly ways to make her laugh. We kept hoping and praying.
Finally, we had another offer, and on June 18th, 2026, our beautiful BA warrior received her second chance at life. Surgery went great, and her new liver is working beautifully. Her body was very sick and so she has a long road ahead, but her doctors are pleased with her progress. Time, they say, will make the most difference. Thanks to the liver team at Children’s Mercy, the countless doctors and nurses who have cared for her, and most of all, thanks to the donor family, our sweet girl now has that time. It’s impossible to put into words how grateful we are.
We have partnered with COTA for assistance with transplant-related expenses, such as out-of-pocket medical care, lodging, transportation, and other expenses incurred as a result of needing a transplant. Ayla will have access to COTA funds as she ages. Our hope is to provide her with COTA support she can use for many, many years to come. A child who receives a transplant is a patient for life.
It would be a blessing and a huge help if you would consider partnering with us by donating to COTA in honor of Ayla. We are also grateful for all the prayers and positive thoughts sent her way as she continues on her healing journey.
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.