It’s a Thursday afternoon and Ellie Brogan is bubbling over with energy, greeting old friends and waving at others as they walk by. The 11-year-old, says her father, Gib, is “raring to go.” She’s a Girl Scout, plays viola and is in the cast of her school play, but today’s appointment is no typical afterschool activity. Instead, Ellie and her dad are paying their monthly visit to the Center for Advanced Intestinal Rehabilitation (CAIR) at Boston Children’s Hospital.
For the Brogans, the appointment is less like a chore and more like a reunion: They’ve been coming to Boston Children’s since physicians realized that Ellie was born with just 10 percent of her small intestine and 20 percent of her large intestine, a condition called short bowel syndrome that makes it difficult for her body to absorb nutrients.
Making Boston their home base
Although Gib and his wife, Abby, initially sought treatment at a hospital closer to home, “we wanted to go where short bowel syndrome is familiar, not rare,” says Gib. “We decided that we were willing to go anywhere in the world for Ellie.” Fortunately, the Brogans, who lived in Rhode Island at the time, only had to travel one state away to see Dr. Christopher Duggan and the rest of the team at CAIR. Soon, it became clear that Boston would be part of their long-term plans. “We wanted to make this our home base,” says Gib. The family sold their home and moved north.
Over the years, Ellie has endured her share of challenges — but she’s thriving nonetheless. Once reliant on total parenteral nutrition (TPN) for all her nutritional needs, she now receives extra hydration through a central line, as well as a cocktail of medications through a g-tube. Early in her treatment, she started taking Omegaven, the experimental fish-oil based product developed by Dr. Mark Puder and Dr. Kathleen Gura that’s been shown to prevent liver damage in kids on TPN, a decision that her father says has helped preserve the health of that organ.
As her health has begun to stabilize — and as her younger brother, Will, gets older — Gib and Abby have been able to fulfill their desire to give back. “We want to be able to share what we’ve learned with other parents,” says Gib, who recently joined Boston Children’s virtual Family Advisory Council.
A simple request, granted
Today, Ellie’s health still requires close monitoring: She receives nightly infusions through her central line, visits CAIR regularly and receives support from a variety of specialties to help her cope with a chronic condition as she gets older. Yet her teachers admit that if they didn’t know she has short bowel syndrome, they wouldn’t be able to tell. “She’s like any 11-year-old girl,” says Gib.
Indeed, when Ellie sat down with Dr. Bram Raphael last year, she had a simple request. “I want to be able to go to sleepovers,” she told Raphael, director of the Home Parenteral Nutrition Program. “Can you help me?” The physician didn’t have an answer right away, but promised to think about it.
By their next visit, Raphael had devised a hydration plan that could let Ellie stay over her friends’ houses once her parents are ready. “The team at CAIR recognizes what’s important to children,” says Gib. “They work to improve quality of life so kids can enjoy being kids, and that’s really special.”
Learn about the Center for Advanced Intestinal Rehabilitation.