Florence was born early June 2024 alongside her twin brother. They were born at 38 weeks, were happy and healthy, and only spent a short few days in the hospital before we were all able to go home together. The first couple of months were tough as you can imagine it would be with newborn twins. We knew Florence had some digestive issues going on, were told that she had colic and that it should getter with time. It seemed to get worse so we eliminated dairy from her diet, but that didn’t help either. By mid-August we noticed a progression with Florence’s irritability and discomfort, along with this she also started to display some yellowing. We took her in that week for a wellness check and asked about her yellowing, and the pediatrician suggested we take her to the ER. From there everything for our little girl would change. We met with a GI specialist at our local ER who suggested that we be transferred to Columbia University as they were better equipped to handle her needs. We spent 4 days in the hospital doing endless amounts bloodwork and ultrasounds, and one liver biopsy to finally determine that she was born without a gallbladder and had biliary atresia. A disease we had never even heard of, with no known causes or cures, had just turned our lives upside down. The very next day the Kasai procedure was performed and Florence was on her road to recovery. We spent about another week in the hospital trying to manage her ascites and were finally able to go home. After a couple of weeks of being home Florence’s belly had become significantly distended, so we took her to our pediatrician to address the issue and we found that her blood oxygen levels were dropping. We rushed her over to the ER where they stabilized her levels and transferred us up to Columbia. We spent another few nights in Columbia trying to manage her ascites and got her stabilized to take her home. Since then we’ve had two more hospitalizations where she has had two procedures done to remove fluid and began the process for a liver transplant.
A New Beginning
After weeks of testing possible donors, on November 7th Florence has received her liver transplant from a living donor. The donor is her Uncle Stephen and both patients are doing well. As of today, Florence is recovering at Columbia Children’s Hospital and Uncle Stephen is recovering at home.
Florence received her life-saving Liver transplant! However, the transplant journey is not over; it is a lifetime journey involving follow-up clinic visits, anti-rejection medication and more. COTA will continue to assist Florence with transplant-related expenses for her lifetime. Your ongoing support of COTA for Campaign Name will have a great impact. Please donate now.
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.