Charlsie would require five additional surgeries between November 2018 and June 2019. She is now a child with short bowel syndrome (SBS).
“Reconstruction of the bowels took multiple attempts for several reasons that included not only her loss and damage of bowel but also her loss of abdominal wall,” explained Dr. Helmrath.
In Charlsie’s advanced case, NEC resulted in transmural damage of her entire small bowel that had the appearance of advanced “necrotic” or dead tissue.”
“We recognize that even in the worst appearing cases, some bowel can regenerate, providing hope,” said Dr. Helmrath.
Despite the ups and downs, Jennifer and Michael were amazed at what Dr. Helmrath and team were able to accomplish. Less than 10 percent of their daughter’s bowel remained, but the size was not their primary concern. Most importantly, her bowel needed to function properly.
“We are now in a far better place than [Charlsie] would be in with a transplant,” said Dr. Helmrath. “It is very important that the family recognizes that the path forward exists, and therefore they may be hearing hope for the first time in a long time.”
Jennifer and Michael did hear the hope, and they trusted Dr. Helmrath and team with their daughter’s life. And now, they are seeing positive results following years of ongoing treatment. Charlsie is healthy and gaining weight while working with a nutritionist and a speech therapist, as well as occupational and physical therapists. She is currently being treated by Conrad R. Cole, MD, medical director of the Intestinal Rehabilitation Program.
Though still on 10 hours of total parental nutrition (TPN) each day, she’s making progress and continuing to increase her bolus feeds and drinking 1 to 3 ounces of water a day.
“Charlsie continues to defy all the odds,” said Jennifer. “While she remains delayed and has an oral aversion, she’s the happiest toddler around.”
Dr. Helmrath is proud of Charlsie’s continued improvement and is happy to announce that the Intestinal Rehabilitation Program is expanding thanks to a recent growth award. As a result, they welcomed new team members, including surgical director Paul Wales, MD, and nurse practitioner Marilyn Stoops. The goal is get more patients like Charlsie to Cincinnati Children's and provide the necessary care in the most efficient and stress-free way possible for families.
“Having an established team here all the time is now a reality due to the significant support [Cincinnati Children’s] provided us,” said Dr. Helmrath. “Our care for intestinal rehabilitation patients at Cincinnati Children’s is unique from most of the country based on our experience and approach.”
(Published April 2022)