COTA for Gween Bean

Our Story

Our sweet girl, Gwen Nicole, was born on February 15th, 2024. She came into this world easy and already loved by so many. Her big brother had been anticipating her arrival for some time and unfortunately a snowstorm delayed their meeting for a few days.

Once home, big brother became sick and mom and Gwen went to stay with Mimi and Grandpa for the week. It was hard being apart but by the time we were able to reunite, Gwen unfortunately had developed some issues with her stools.

At 2 weeks old, Gwen was seen by her pediatrician for a check-up and her doctor was very alarmed at the color of stools. She ordered labs immediately to check on Gwen. Labs were drawn and the phone call to follow sent us into our transplant journey.

Gwen was referred to and seen immediately by the GI Specialist at St. Louis Children’s Hospital. There, the liver doctor met with us and explained that most likely Gwen had a liver disease called Biliary Atresia. It was explained that this was a rare disease (1 in 15,000 newborns) and more likely than not it has no hereditary ties. Babies are born with very narrow or no bile ducts from the liver to the intestine. This causes the bile to back up in the liver, creating cirrhosis and ultimately liver failure.

At 3 weeks, Gwen underwent a liver biopsy to confirm her diagnosis and from there immediately went into her 1st major abdominal surgery. She had her severely underdeveloped gallbladder removed and a procedure known as a Kasai. This was to help drain the bile by creating essentially a direct path from the liver to the intestine.

Gwen’s initial labs looked great, and the team had very high hopes of a full success. Alas, that was not the case as the 3-month post-surgery mark came closer. It was found that Gwen’s initial surgery was only partially successful, and she would need a liver transplant before the age of 2.

Since receiving that news, we have gone through a full evaluation to get her on the transplant list and have done everything we can to keep Gwen as healthy as possible. She takes several meds daily, has an ng tube to help with feedings and we see the doctor for check-ups constantly. Even through ALL of this, Gwen has stayed so happy and incredibly curious! Gwen is thriving and awaiting her transplant currently.

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.