Before Ben’s second birthday he became extremely ill. He was refusing to eat his favorite foods, vomiting every few minutes, was pale as a ghost, and could hardly raise his head. May of 2014 was the first time that Ben was hospitalized for pancreatitis. He was transported by ambulance to Niswonger Children’s Hospital in Johnson City, Tennessee, where they tried to figure what was causing his acute pancreatitis.
Throughout 2014 and 2015, Ben saw doctors in 3 different states in an attempt to discover the cause of his chronic pancreatitis, however, test after test came back negative. Finally, at the end of 2015, Dr. Tom Lin at Cincinnati Children’s Hospital was able to determine the cause. In December of that year, Ben had his first MRCP (Magnetic Resonance Cholangiopancreatography) and was diagnosed with Pancreatic Divisum, a congenital defect of the pancreas in which two parts of an embryo’s pancreas do not fuse together to form one main pancreatic duct, leaving the main pancreatic duct to drain through a smaller opening. While most people with this defect tend to be asymptomatic, it was determined to be the root cause of Ben’s recurrent pancreatitis.
In August of 2016, Ben had his first stent placement through a procedure known as an ERCP (Endoscopic Retrograde Cholangiopancreatography). This would prove to be the first of many. Between 2016 and 2018, He was in and out of the hospital for chronic pancreatitis, undergoing additional MRCP’s and ERCP’s in order to monitor his condition and to help his pancreas drain. In 2019, Ben was admitted into the hospital once again for acute pancreatitis. This year was very difficult for Ben as he had several stent placements throughout the year in attempt to relieve strictures caused by the attacks of acute pancreatitis and to dilate the duct so that his pancreas could drain effectively. From the summer of 2019 to the end of 2020, Ben had 7 different ERCP’s. Towards the end of 2022, it was determined that continued stent placement was not a viable, long-term solution for Ben’s condition, and he was evaluated for the TPIAT (Total Pancreatectomy with Islet Autotransplantation) procedure. After his initial evaluation, Ben had a really good six months. He still had his “normal” pain but was able to enjoy being a kid and doing things that most of us take for granted. August of 2023 was an exciting month for Ben. He started the 6th grade and began playing on the football team with his friends. Ben was so excited about the new year until he became ill once again.
In September of this year, Ben went for another MRCP. The results showed that Ben had sustained more damage to his pancreas and that it had continued to decrease in size since the previous year despite the stent placements. Before the end of the month, Ben was approved for the TPIAT surgery. This procedure is Ben’s best chance at living a normal life. While this surgery presents a monumental opportunity for Ben, it also comes with substantial expenses pre, during, and post procedure with the possibility of continued treatment and follow-up procedures. For this reason, we have partnered with the Children’s Organ Transplant Association (COTA) for assistance. Any support that you can give to COTA for Operation Ben would be greatly appreciated by our family!
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.