Intestinal Rehab Team’s Commitment to Finding Solutions Helps Improve James’ Quality of Life

When Laura and Limbert Vasquez first met 18-month-old James at a hospital in North Carolina, they didn’t think they would know him for long. Nearly 10 years later, they can’t imagine their lives without him.

James had been born prematurely at 28 weeks. A few weeks later, he developed necrotizing enterocolitis (NEC), a life-threatening gastrointestinal disease which causes intestinal tissue to die. As a result, James required extensive bowel resection surgery as an infant, leaving him with a significantly shortened intestine and a colostomy bag for waste collection.

Within the first few months of his life, James also was diagnosed with subglottic stenosis, a narrowed airway. Because his condition was severe, he needed reconstructive surgery and a tracheostomy (trach) tube placed in his neck to help him breathe.

“His doctors didn’t expect him to live,” said Limbert. “The foster care agency was looking for a family who would take him until he passed away.”

At the time, he and Laura were fostering children at their home in Wilmington, NC, and when James needed a temporary home, they welcomed him with open arms.

“He was very high needs,” Laura said, recalling the three weeks of training she had to undergo to learn how to care for James before he could be released from the hospital.

Parents to four teenage daughters at the time, Laura and Limbert brought James home in May 2015. Two years later, they adopted him.

“He’s the one who stuck and became ours permanently,” Laura said.

From Surviving to Thriving

James needed a lot of attention, including around-the-clock care and regular two-and-a-half-hour drives to University of North Carolina Medical Center for appointments.

Eventually, in 2022, James reached a point where “he wasn’t moving forward,” Laura said, and his surgeon in North Carolina told her they should go to Cincinnati Children’s. He knew a surgeon there, he told her, who might be able to help James. “The connection ended up being a game changer in so many ways,” Laura said.

The surgeon was Michael Helmrath, MD, the former surgical director of the Intestinal Rehabilitation Center. With his colleagues—Samuel Kocoshis, MD, medical director of the Intestinal Care Center, and Paul Wales, MD, current surgical director of the Intestinal Rehabilitation Center—Dr. Helmrath and team immediately went to work coordinating a path forward for James.

First, Dr. Kocoshis realized that one of the reasons James was having trouble absorbing nutrients from food was because his pancreas wasn’t producing enough enzymes. Laura recalls that this knowledge alone led to a huge change in James’ care.

Once the doctors were able to control James’ symptoms, including issues with absorption, digestion and waste production, they set out to optimize the way his gastrointestinal (GI) tract worked.

In October 2023, Drs. Helmrath and Wales surgically removed abnormal connections, called fistulas, that were causing nutrient absorption issues in James’ intestines, and reconnected his bowel to his colon.

The surgery was successful, which meant James, now 10 years old, no longer needed his colostomy bag—something he initially wasn’t happy about. “He kept asking for his bag back at first,” Laura said, with a laugh. “But now he says he doesn’t want it back.”

Thanks to not having a colostomy bag, James is now able to lie on his stomach—something he was never able to do before—and he also can control his bowel movements and go to the bathroom on his own, Laura said. Plus, he can play sports, including tennis and soccer, and practice taekwondo, without pain.

In addition, James can tolerate more volume in his meals, consolidating them from 12 feedings a day to eight, and incorporate more healthy fats, like avocado and oatmeal, into his diet.

“Since the surgery, it’s amazing the trajectory we’re on now,” Laura said. “The quality of life for our whole family has changed. We feel free. And James is not only alive, he’s thriving.”

The Potential for Life

What makes James’ story a success is the combination of a local advocate for his care—the pediatric surgeon at UNC Medical Center—and a Cincinnati Children’s team experienced in caring for children with complex conditions, Dr. Helmrath said.

“We can often think of things or see things in a different way because of the volume of complex cases we’ve been exposed to over time, so we’re not afraid to consider something that’s maybe unconventional or not really written about yet in literature,” Dr. Wales said. “But because we’ve seen and experienced it, we know it can benefit patients.”

It’s true that much of what Cincinnati Children’s provides is perspective and interpretation, Dr. Helmrath said. “We don’t see departments and divisions here,” he said. “We see patients and diseases.”

Still, the true secret to James’ success may be his family.

“We gave him the potential of his GI tract,” Dr. Helmrath said. “His mom and dad gave him the potential for life.”

Dr. Wales adds: “They changed that boy’s life. They’re special people. And they’re totally committed.”

Laura and Limbert, who say they’re now exploring airway reconstruction options for James, credit Cincinnati Children’s for seeing possibilities where others only saw the status quo.

“These doctors are committed to finding solutions,” Limbert said. “We used to hear a lot of, ‘That’s just the way it is for kids like James.’ We’re not hearing that anymore.”

(Published March 2024)