Stories about: Center for Advanced Intestinal Rehabilitation

Making connections: Bonded by short bowel syndrome

care for short bowel syndrome

At the top of the dual slide, 4-year-old Brayden Austin is buzzing with energy, excited to go careening down to the bottom. Yet he waits patiently until a towheaded boy joins him on the neighboring chute. Two-year-old Camden Glover is a little nervous. But Brayden grabs his hand and the pair sails to the ground together, squealing with delight.

It’s a typical playground scene, but also an apt metaphor for the boys’ special connection. The two children — one from Maine, one from Tennessee — have a close friendship. But they might never have met if not for one life-threatening event.

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

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.

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Miles to go: From Mississippi to Boston for life-saving care

ileal atresia

Whether he’s riding with his family on their all-terrain vehicle (ATV) at home in Mississippi, learning how to fish or playing with his cousins, Ethan Claborn is happiest when he’s outdoors. Simple things like a blade of grass or drop of rain are even more special for this almost four-year-old, considering he spent the first year of his life within hospital walls.

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Worth every mile: Short bowel syndrome brings family to Boston

short-bowel-syndrome

During his most recent visit to Boston Children’s Hospital, 3-year-old Konrad Schienke resembles a tiny tornado, gleefully scampering around the room as he mugs for the camera and shouts, “Cheese!” Later, he smiles as a doctor gently felt his abdomen, giggling as if he was being tickled.

“It’s hard to believe what a sick little kid he has been,” says his father, Erich.

Yet, just a few years ago, this energetic boy resided in the neonatal intensive care unit at his local hospital in Pennsylvania, struggling with a diagnosis of short bowel syndrome. 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. Untreated, short bowel syndrome can lead to severe dehydration and malnutrition.

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