Stories about: short bowel syndrome (SBS).

‘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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Two life-threatening conditions.
One remarkable wish.

Lucas, who received a 5-organ (multivisceral) transplant looks over his mom's shoulderWhen Lucas St. Onge blew out the five candles on his birthday cake, he made just one wish. He didn’t ask for ninja turtles, a T-ball set or an Xbox — the only thing he wished was to be just like any other kid.

“It was a gift I couldn’t give,” says his mom, Heather.

On that same day, last May, he got his wish.

“He got a liver, stomach, pancreas, intestine and spleen — the five organs he needed to help him become healthy and happy,” Heather says.

Heather was 18 weeks pregnant when she and her husband, Anthony, learned they were about to face a myriad of medical challenges with their unborn child. To what extent remained unclear, until the day Lucas was born.

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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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Saving six: Life before and after transplant

An organ transplant is a life-changing event extending far beyond the operating room, the clinics and the hospital walls. Read about five children, one young adult and their families, whose lives were forever changed by the Pediatric Transplant Center at Boston Children’s Hospital.


Lydia’s liver transplant, a mom’s gift

Living donor liver transplant recipientDawn Cavanagh gave her daughter life twice — first when she was born and, again, when she gave 13-year-old Lydia a piece of her liver last summer. The donor-approval process, which occurs with Boston Children’s partner Lahey Hospital & Medical Center, required hours of medical screening, including an interview with a social worker, who asked if Dawn expected anything in return for being Lydia’s liver donor. “And I said, ‘Of course I expect something,’” explains Dawn. “’I expect her to live a long and happy life, and I expect her to be with me for a long time.’”

More than a year after her liver transplant, for Lydia’s birthday, Aug. 1, the Cavanagh family went on Lydia’s Make-A-Wish trip, a Disney cruise to the Bahamas. “We had so much fun,” says Dawn. “She’s a happy kid. She has dreams. She wants to be a transplant nurse, and she wants to work on 10 South at Boston Children’s Hospital.” 

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