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.

treatment for short bowel syndrome

Parallel lives

 It was March 7, 2015, and the Glover family was in crisis. Just one day old, their son, Camden, was vomiting blood and bile. What should have been a time of celebration quickly turned to chaos as the newborn was flown to the local children’s hospital in North Carolina, where the family was living at the time. There, he was diagnosed with intestinal malrotation and volvulus. In this frightening disorder, the intestines twist, cutting off blood supply to the small bowel. As a result, some 85 percent of his small intestines had to be surgically removed, leaving the little boy with short bowel syndrome, a rare but serious condition that prevents the body from extracting the nutrients it needs to survive.

The Glovers didn’t know it yet, but at that moment, nearly a thousand miles north, the Austin family was experiencing a very similar medical emergency. Eighteen months old, Brayden was fighting for his life after intestinal malrotation and volvulus destroyed all of his small intestine and half of his large intestine and sent him into septic shock, resulting in two strokes. Now he, too, had short bowel syndrome.

intestinal malrotation with volvulus

Specialized care

With the boys recovering in their respective neonatal intensive care units, it became clear to both sets of families that their children needed expert care. After researching the condition, Camden’s parents, Meagan and Eddie, determined that his best chance for treatment was at the Center for Advanced Intestinal Rehabilitation (CAIR) at Boston Children’s Hospital.

Back in Maine, Brayden’s parents, Jennie and Adam, had come to the same conclusion. “We consulted with the physicians at CAIR and they told us, ‘We can work with whatever part of his intestines he has left,’” recalls Jennie. “That one phone call changed our lives.”

While Brayden and Camden began their care journeys at the hospital with Dr. Bram Raphael and Dr. Mark Puder, respectively, their mothers learned of a luncheon organized for parents of patients at Boston Children’s with short bowel syndrome. As they chatted over pizza, Jennie and Meagan made a stunning revelation: Their sons didn’t just have the same condition — they had both experienced volvulus on the very same day.

TPN for short bowel syndrome

A special bond

For the Glovers and Austins, Boston Children’s has become a second home. Until recently, Camden was dependent on total parenteral nutrition (TPN), which meant he needed to receive nutrients intravenously. Because long-term TPN can lead to liver injury, he returned to Boston every six weeks to receive Omegaven, an experimental fish oil-based drug shown to prevent liver damage. Brayden visits even more frequently: In addition to receiving TPN through a central line, he’s a participant in a clinical trial for Gattex (teduglutide), a typically used to treat adults with short bowel syndrome.

But there’s upbeat — even fun — aspect to their visits, too. Since their parents’ initial meeting, the two families have kept in touch. “We text or talk four or five times a week,” says Jennie. “Short bowel is such a rare condition that it’s hard for other people to understand. It’s nice to be able to ask Meagan questions, vent and talk about our successes.”

Meagan agrees. “Jennie has become a friend and offers a unique perspective because, unlike Camden, Brayden had a typical infancy before his volvulus,” she explains.

parents of children with short bowel syndrome

Like family

That closeness extends to the boys. “Camden views Brayden as a big brother,” says Meagan. For Brayden’s part, he asks about Camden so much that his parents have tried to schedule his appointments in concert with Camden’s, turning what could be unpleasant hospital visits into playdates. They’re often joined by the Austins’ older son, Carter, who treats Camden with the same gentle playfulness that he extends to his own brother. The boys share a love of the typical childhood trappings: cars, trucks, superheroes.

The relationship has benefited them in subtler ways, too. Both boys required a gastrostomy (g-tube) to receive adequate nutrition, which their parents believe has had a positive effect on them. “I think seeing each other with a g-tube has helped normalize that for them,” says Meagan.

At the playground, Camden toddles back over to the slide. “Want to go again?” his mother asks, helping him up the stairs. As he ascends to the top, Brayden is there, waiting for him.

Learn about the Center for Advanced Intestinal Rehabilitation.