Isaac’s story: A ‘new normal’ with short bowel syndrome

Isaac stays active with short bowel syndrome

It was the morning after their baby son Isaac had come home from the hospital, and Jennifer and Brian Campbell were performing the same sweet act of bonding as many new parents: giving him a bath in the sink. But as they maneuvered around the room, they suddenly realized something was very wrong. “I fell to the floor and started screaming and crying as formula shot out of his stomach,” remembers Jennifer. “I thought we’d broken him.”

The reality, of course, was that the Campbells were simply adjusting to their new “normal” — something any parent of a medically complex child can understand. Isaac wasn’t a newborn. He had finally been discharged from the hospital after nine months. And his parents hadn’t hurt him. They’d just accidentally pulled out his gastrostomy (G-tube), which provided his body with nutritional support.

After a reassuring call to the Center for Advanced Intestinal Rehabilitation (CAIR) at Boston Children’s Hospital and a trip to the emergency department, Isaac was back at home, G-tube intact. “Things were overwhelming in the beginning,” admits Jennifer. “It was a lot harder than I’d imagined.”

Isaac receives nutritional support for short bowel syndrome

Mother’s intuition

One of a set of twins, Isaac “was initially my healthy baby,” says Jennifer. His brother, Christopher, had been born with esophageal atresia, a rare condition that caused him to aspirate when he tried to feed. As Christopher underwent surgery to correct the defect, his parents felt grateful that Isaac seemed to be okay. But soon, Jennifer began to sense that he was sick, too.

“I can’t explain it,” she says. “Call it mother’s intuition, but I just knew something was wrong.” Sure enough, further examination revealed that Isaac had necrotizing enterocolitis, a serious illness that causes intestinal tissue to die. The treatment was dramatic: the surgical removal of much of his small and large intestine.

As a result, the little boy was left with short bowel syndrome, a rare condition that makes it difficult for the body to absorb the nutrients it needs. Because long-term supplemental nutrition can lead to liver damage, the physicians at their local hospital in Connecticut told them Isaac would need a liver transplant to survive.

A grim prognosis

That grim prognosis became even bleaker the following week, when Isaac suffered a brain bleed. Now, clinicians warned, he would likely be unable to ever walk or talk. The prospect of a liver transplant was now off the table. “They told us they’d never seen a kid like Isaac survive,” Jennifer remembers. “They said that we should take him home, make him comfortable and take lots of photos to remember him.”

Instead, the Campbells took to the Internet, where a search yielded information about CAIR, as well as about Omegaven, an experimental fish oil-based drug developed by Dr. Mark Puder and Kathleen Gura and shown to prevent liver damage. Intrigued, they emailed Dr. Tom Jaksic — and received a reply within an hour. With Dr. Jaksic’s encouragement, they headed to Boston Children’s with Isaac.

Isaac receives care for short bowel syndrome at Boston Children's

Tears of joy

While they weren’t sure what would happen when they first arrived at Boston Children’s, Jennifer and Brian soon began to relax a bit. The family felt even better when they met Dr. Christopher Duggan, medical director of CAIR. “Dr. Duggan is calm and great with kids. And Dr. Jaksic has so much hope and optimism. He told us, ‘Isaac is going to be okay. We can help him and he’s going to thrive,’” says Jennifer. “Even now, I can’t talk about the CAIR team without crying tears of joy.”

The next few months held ups and downs. At one point, Isaac developed an infection, which slowed his progress. Worse, Christopher was still in Connecticut, recovering from his esophageal atresia repair. “We couldn’t both be in Boston all the time because Christopher was still sick,” says Jennifer. “It was really hard for Isaac.”

The Campbells credit Isaac’s nurses with helping him feel loved and cared for during those difficult times. Nine years later, he still falls asleep surrounded with a cadre of stuffed animals watching over him, positioned the same way that his nurses in Boston arranged them when he was a baby.

Surgery to treat NEC left Isaac with short bowel syndrome

Focusing on the present

Today, Isaac has had both his G-tube and central line removed and makes his own food choices. “He eats more than I do,” laughs Jennifer. “He’s my miracle boy.” Still, it’s hard for him to see Christopher — now completely healthy — do things that he can’t. To protect his liver health, Isaac isn’t allowed to play football, for example. A diagnosis of cerebral palsy (CP), likely the result of his brain bleed, can make certain activities frustrating for him as well.

But that doesn’t mean that he’s slowing down. An avid reader, Isaac also loves riding horses as part of therapy for his CP, hiking and camping. He also recently completed a 5K race — “not bad for a kid who was never supposed to walk,” muses his mother. As with running, the Campbells know that it’s not always the destination, but the journey that matters. “We don’t know what the future holds,” says Jennifer. “We just focus on the present.”

Learn about the Center for Advanced Intestinal Rehabilitation.