Diagnosis: Cystic Fibrosis & Chronic Pancreatitis
Last Update: 7/11/2023
Meet Kennedy - a 8-year-old battling Cystic Fibrosis & Chronic pancreatitis. In February 2021, Kennedy was hospitalized at Phoenix Children's Hospital, with her first bout of severe pancreatitis.
Having been diagnosed with cystic fibrosis at just one week old, Kennedy and her family were very familiar with Phoenix Children’s, but Kennedy had never been hospitalized there for pancreatitis.
For about a year after that, Kennedy was doing well, and they were hopeful that it was just a one-time occurrence. Then in April of 2022, Kennedy was admitted to Ann and Robert Lurie Children’s Hospital in Chicago, for another bout of pancreatitis while they were visiting family in Illinois. At that point, Kennedy's situation was critical. Her lipase levels were rapidly increasing, with the highest level being 3500 (normal levels should not exceed 53). At that time, Kennedy was placed on a PCA (patient-controlled analgesia pump) because her pain was so unmanageable.
After a 10-day hospital stay in Chicago, they were able to finally get her lipase levels under control and bring Kennedy back home to Phoenix. Three weeks later, in May 2022, Kennedy was back in Phoenix Children’s Hospital for another bout of pancreatitis. She went on to have three more bouts of pancreatitis in 2022 and three in the beginning of 2023, all of which required hospitalization.
Wanting to find answers, they started exploring various pancreatic programs throughout the United States and found the pancreas care center at Cincinnati Children’s Hospital. Kennedy was assessed by the Cincinnati Children’s Hospital Pancreatic Center in April 2023, where numerous tests were run, including genetic testing. Kennedy was found to have a genetic marker (CPA1) that predisposes her to early onset pancreatitis, along with having cystic fibrosis, which can cause complications with the pancreas.
While they were at Cincinnati Children's, the team also did an endoscopic retrograde cholangiopancreatography (ERCP), where they found permanent damage to her pancreatic ducts, resulting in a diagnosis of chronic pancreatitis.
In May of 2023, the pancreas care team at Cincinnati Children's Hospital determined that Kennedy is a candidate for total pancreatectomy with islet autotransplantation (TPIAT), which includes the removal of her pancreas, spleen, appendix, and gallbladder. She will be having the surgery in September 2023. Kennedy and her dad will have to be in Cincinnati for eight to 12 weeks while she undergoes the procedure, recovers and attends post-op appointments in the weeks that follow the TPIAT surgery.