Food Service

By Louis La Plante & Matrissa Leggett
Photo by Jinni Nall

On Feb. 13, 2002, Angie and Jeff Banet proudly took home their firstborn, a healthy baby boy, Nolan. Ten days later, Nolan frequently vomited, and Angie rushed him to the hospital. His small intestine had twisted, cutting off the blood supply to large portions of his digestive system. Doctors guessed the twisted small intestine was an in utero complication, but they knew the solution to Nolan’s problem was surgery.

That March, doctors removed much of his small intestine and placed him on intravenous nutrients. Nolan needed nine months of hospital care until a small intestine and liver transplant was available at a children’s hospital in Nebraska. The transplant was a success, and the procedure saved his life.

Today, Nolan is nine years away from earning his driver’s license, but he loves cars. “He gets all the car magazines and consumer reports and reads up on them,” says Angie. The 7-year-old Cub Scout, who lives in Floyds Knobs, Ind., near New Albany, loves playing outdoors, and he’s a fan of Disney’s Phineas and Ferb, a cartoon recounting the zany exploits of stepbrothers on summer vacation. His life appears normal in every way, except the life-saving surgeries he received as an infant have had a lasting effect. Because of the surgeries, Nolan missed a crucial development window in his childhood: He didn’t learn how to eat. To keep Nolan healthy, he’s connected to a gastric feeding tube, a device attached to his stomach to supply needed nutrients. His tongue and mouth muscles never developed to chew and swallow. He has extreme sensitivity to food textures. “He’s deathly afraid of food,” Angie says. Nolan thinks he’ll choke, and when he attempts to eat, he sometimes throws up.

A new feeding clinic in Evansville is changing that.

Six years ago, a longtime neonatologist and current medical director of St. Mary’s Center for Children, Dr. Maria Del Rio Hoover, spoke to a parent of a child who had overcome complications from a premature birth. That child still had unique challenges to face, which included tackling feeding disorders. Del Rio Hoover learned the parents had found help at a special clinic in Virginia headed by Dr. Elizabeth Clawson. Though the parents saw tremendous results in combating the feeding disorders, the program is an eight-week treatment program away from home, which increased travel expenses and the family’s emotional toll — and Del Rio Hoover asked herself if Evansville needed a similar service.

Then, Del Rio Hoover asked physicians the same question. She asked more parents. She asked therapists. She “didn’t say, ‘Do you want a feeding program?’” says Del Rio Hoover. Instead, the question was, “What are the services that children with chronic healthcare problems need that aren’t being met or addressed within our community?” Del Rio Hoover hosted public meetings, and the Daughters of Charity, a nonprofit religious group with a mission to help the community’s underserved, gave her a grant to hire researchers, who used surveys and focus groups. The data and community input showed a feeding clinic was needed.

What the proposed clinic needed was someone to lead the way. It needed the same woman who had been helping Evansville children for years in her Virginia office: Clawson. “It’s serendipity,” says Del Rio Hoover. “The key of this program was to get someone who had experience.”

Clawson received training early in her career at the Kennedy Krieger Institute of Johns Hopkins University in Baltimore, Md. Nationally renowned for its feeding programs, the institute influenced Clawson’s aspirations to be a pediatric psychologist. She liked that the therapy for feeding disorders was data-driven. “You can see and document progress,” Clawson says. “It’s not: ‘I have a feeling he ate more today.’”

Last year, with Clawson as clinical director, St. Mary’s launched its feeding clinic, just one of six in the country. The clinic’s mission is to help “children who have had medical issues and are not feeding and thriving or children who are in the process of transitioning to baby foods or toddler foods and get stuck,” Clawson says. “They could be children who are extremely food selective or not good chewers. These issues interfere with both physical and social aspects of development.” The clinic has a team: a psychologist, occupational therapist, a speech therapist, and a nutritionist. This intensive team approach, says Clawson, is what makes the handful of feeding clinics in the United States so effective. “All of the practitioners are working together,” she says. “It’s a very unique kind of therapy. There’s an oral motor piece, a medical piece, a behavioral piece, and an emotional piece.”

During treatment sessions, Clawson collects a dozen variables of information for every bite taken by a child. The data includes whether children “opened their mouths for a bite, whether they closed their lips too soon, whether they swallowed the bite, whether they spit it out, whether they cried, whether they gagged, whether they threw up,” Clawson says.

Nolan is a patient who is familiar with the process. He first met Clawson in Virginia at age 4 when Angie and Jeff packed up and moved to the East Coast for treatment. Each parent traded two-week shifts to stay with Nolan in Virginia while the other remained in Floyds Knobs to work. “I knew it was important,” Angie says. “It was just inconvenient being so far away.” Nolan made progress under Clawson’s care, but learning to eat after infancy is a long process. “As a child gets older, he moves a little slower,” Angie says, “because he’s more aware of what’s going on in his mouth.” Nolan needed more therapy.

The Banets took Nolan to St. Mary’s last summer for his second eight-week session. “When I heard (Clawson) was in Evansville,” Angie says, “I was excited because it was within driving distance.” He was one of the first patients in the local intensive day program. (Six children received this treatment in 2009. Clawson also had more than 25 outpatient appointments and evaluated 100 new patients.) When Nolan started his second treatment with Clawson, she began each session with a 15-minute routine of oral motor exercises — a series of massages over his upper lips and cheeks. He tried various foods wrapped in organza mesh to experience the act of chewing without feeling the sensation of chewed food scattered in his mouth. Finally, with a timer set for 20 minutes, a plate of soft, fork-mashed foods was set before Nolan. “He doesn’t know how to move food around in his mouth,” Clawson says. “He was afraid it will go somewhere he can’t control, and then reflexively, he’d try to gag and throw up.”

Two months later, Angie sees her son’s progress. “He’s gotten a little more daring,” she says. He tries rougher, grittier, thicker foods such as crackers, but Angie knows Nolan will need more therapy. Several other families are finding help at Evansville’s feeding clinic. Just as Nolan traveled 11 hours to Virginia for care, children from as far away as Puerto Rico received therapy in Evansville last summer. Angie isn’t surprised. She knows the power of the program: “That’s what Nolan needed,” she says, “and that was what I was looking for.”