‘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.

short bowel syndrome

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 search brought her to information about the Center for Advanced Intestinal Rehabilitation (CAIR) at Boston Children’s Hospital. She reached out to Dr. Mark Puder and discussed Allie’s case with him.

little girl with g-tube

Short bowel: an unfamiliar new world

When Allie was just 8 weeks old, she was transferred to Boston Children’s for care. “It was the easiest decision I’ve ever made,” says Nanci. “Something just seemed right and I knew this is where Allie needed to be.”

Once in Boston, Allie’s family began to gain some clarity about her condition. She was formally diagnosed with short bowel syndrome and had a gastrostomy (g-tube) and central line to receive nutrients intravenously. It was an unfamiliar new world: “As a parent, it never crosses your mind that you’ll need an IV in your house,” says Nanci. “But the nurses at CAIR explained everything and gave us confidence in our ability to care for Allie. When it was time to come home, we were happy, not scared, because we knew we were prepared.”

short bowel treatment

Strong bonds

That support has continued as Allie has grown — and some of her clinicians have become like family. During a recent visit, she greeted members of her care team with a sassy smile before asking when it would be time to see Dr. Bram Raphael. Meanwhile, her mom is grateful for another relationship forged through CAIR.

“I’ve probably spent more time on the phone with [nurse practitioner] Danielle Stamm these past three years than I have my own sister,” she laughs. “But that’s really a testament to Danielle’s dedication to Allie. She has figuratively held my hand every step of this journey and made things much easier to handle, no matter how big or small they seemed.”

Today, Allie is thriving. Although she’s still reliant on her g-tube, she’s as active as any other 3-year-old, nonchalantly toting her feeding equipment in a tiny backpack. “The short-gut path isn’t always easily traveled,” admits Nanci. “Feeling like you can’t help your own child is the most devastating thing you can experience as a parent. But once you find a team of providers who can not only help your child, but also make this journey better for you and them, that’s the most invaluable thing that can happen. The CAIR team does that in spades for my family.”

Learn about the Center for Advanced Intestinal Rehabilitation.