COTA for Sylvia

Our Story

Our sweet Sylvia Jo Green was born May 23rd, 2024. We brought her home only a few days later to meet her big sister, Stella. Our hearts and hands were full for her first months of life as we felt the blessing and overwhelm that it is to care for a toddler and a new baby.

At Sylvia’s 2-month physical, her doctor noticed yellowing of her eyes and skin. She was not born with jaundice, so in a panic we rushed to get bloodwork to check her bilirubin levels. Soon after, her doctor called to tell us to go to the emergency room at East Tennessee Children’s Hospital. 

That Monday began the whirlwind of a hospital stay full of procedures and testing, which showed the possibility of a rare childhood liver disease called Biliary Atresia, a blockage in the ducts that carry bile from the liver to the gallbladder. By Friday she was scheduled for surgery. They did a liver biopsy and cholangiogram and determined that she needed a Kasai immediately following. The Kasai procedure is not a cure for Biliary Atresia, but it creates a new connection for bile to flow and can delay the need for a liver transplant. 

Our baby girl was finally able to come home the week after her Kasai, after 2 weeks in the hospital. Unfortunately, her bloodwork showed minimal to no improvements at her follow up appointments with her gastroenterologist. In spite of this, she has been the sweetest and happiest baby through it all and brings so much joy to our lives.

At 6 months old, she had a liver transplant evaluation at Cincinnati Children’s Hospital in Ohio. The evaluation proved what our GI doctor suspected: that the Kasai procedure was unsuccessful. We have traveled to Cincinnati several times since her transplant evaluation to see her liver doctor and stay inpatient for testing. At our last appointment in January of 2025 we received great news, we have a date set for living donor surgery in March! We have no idea who has decided to donate a part of their liver for Sylvia, but we are so grateful to them. God is answering prayers and we look forward to the plan He has for our family. We are still on the deceased donor waitlist, so if a liver becomes available before her surgery date, we will drop everything and need to be in Cincinnati within 6 hours.

UPDATE: Sylvia received a living liver donor transplant on March 7th at 9 months old! She was in the ICU for several days and moved to a regular room and recovered well. After spending 2 weeks inpatient, she was able to come “home” to the Ronald McDonald House of Cincinnati to be with mom, dad, and sister. While we are staying locally, her liver doctor monitors her bloodwork, adjusts her medications, and discusses if her bloodwork warrants further testing.

There are many unknowns throughout this journey. This is why we’ve partnered with COTA for assistance. COTA funds will help our family cover transplant related expenses that may come up for Sylvia throughout her life. We don’t know what the future will look like for our family, but God knows. And with Him, nothing is impossible.

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.