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‘An easy decision’: Finding care for short bowel syndrome

Allie DeRienzo loves to dance, sing and play with her big brother, switching from the pink-and-purple cartoon world of Shimmer and Shine to the action-packed fantasy of Star Wars with the blink of an eye. It’s a flexibility that has served her well: In just a few years, she’s endured more ups and downs than most 3-year-olds. Although her pregnancy was normal, it became clear as soon as Allie was born that something wasn’t right. “She was incredibly distended and was transferred almost immediately to a high-level neonatal intensive care unit (NICU) in New York,” remembers her mother, Nanci. Concern and confusion It was a confusing time for everyone. “She was failing to thrive in the NICU, but no one there actually told us she had short bowel syndrome,” says Nanci. This rare but serious condition can occur when a child either loses or is born without enough small intestine, preventing the body from extracting the nutrients it needs to survive. Children with this condition often need to receive nutrients intravenously — but long-term IV feeding, also known as total parenteral nutrition (TPN), can lead to liver injury. When doctors suggested that Allie might need someday a liver transplant, her parents knew it was time to research other options. “I was Googling ridiculous things that no mother should ever have to Google, like ‘do babies with intestinal problems always need liver transplants?’” she says. That...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Diseases & Conditions Our Patients’ Stories Center for Advanced Intestinal Rehabilitation Danielle Stamm Dr. Bram Raphael Dr. Mark Puder G-tube short bowel syndrome (SBS). total parenteral nutrition Source Type: news

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