The Middletown Press (Middletown, CT)
‘LOOKING OUT FOR OTHER PEOPLE’
Man born with incomplete esophagus educating others about nutrition
NEW HAVEN >> James Hoyne, who relies on a feeding tube because he was born with an incomplete esophagus, says there’s “one thing that drives me nuts.”
That’s when people assume that his parents didn’t feed him when he was a baby or “force me to eat earlier.”
Of course, that wasn’t the case. His parents, Herb and Lisa Hoyne, have been totally supportive of Hoyne, 23, as he deals with his condition, an abnormal connection between the esophagus and the trachea, called a tracheoesophageal fistula.
“I love him to death,” said his father. “As a parent you want better for your kid than you had for yourself. He’s the kind of kid who looks out for himself but he’s looking out for other people too. He’s very considerate, very kind.”
James Hoyne, who is from Florida but now lives in Enfield, will soon undergo surgery by Dr. Robert Cowles at Yale New Haven Children’s Hospital.
Meanwhile, Hoyne is devoting his time to advocacy and education about people who rely on feeding tubes to ensure they receive adequate nutrition.
His main message: “Even though you have a feeding tube, you can still live a normal life.” He’s fenced, played baseball and soccer, and run for local office in his native Florida twice, though unsuccessfully.
“I don’t label [it] as a disability,” he said. “I label it as something I need to get on with my life. I may have it but that doesn’t define you.”
There are many who don’t understand and Hoyne continually fights the stigma.
“It really got under my skin when a teacher said I need to take you down to the office because I’m being starved at home because I was so skinny,” he said. “It impacted my whole family because … after that we’d go out in public and people would stare [and ask] ‘Are you OK?’”
Cowles, who took over Hoyne’s care from his doctors in Florida, said of Hoyne, “I was impressed with him from day one. He seems like he is mature, he knows what he wants, he’s very interactive and he’s dealt with a very difficult condition for many, many years. He’s very courageous.”
Cowles said Hoyne was born with “an esophagus that didn’t meet up, [there] wasn’t this continuous thing from top to bottom; there was a blockage in it.”
Because the condition is often accompanied by acid reflux, Hoyne’s previous surgeon “did a procedure where you wrap the stomach around the esophagus … just try to prevent the gastric acid from going up there,” Cowles said.
Unfortunately, the organs have “migrated up into the chest. … We have to almost pull the stomach down into the abdomen. … The hard part is that he’s already had a bunch of surgeries,” which have created a lot of scar tissue that complicates the surgery, Cowles said.
Hoyne has undergone about 30 surgeries in his life. “His stack of medical records is like 2 feet tall,” Cowles said. “He’s been very patient in waiting for an answer from me.
“This is going to be a hard surgery and you’ve got to be ready for a road ahead that’s going to be challenging. He can’t continue the way he is and I think he realizes that.
Cowles is hopeful that this surgery will solve the problem and get Hoyne off his feeding tube for good. “I don’t see why not,” Cowles said. “I’d probably say we’ll know that maybe a month or so after the surgery.”
His parents are “very, very proud of him,” Herb Hoyne said. “He’s become a self-advocate that we always wanted him to be.”
James Hoyne doesn’t rely totally on the feeding tube, using it mostly at night to supplement the soft foods he is able to eat, such as a coffee roll in the morning, crackers, rice, pastina and apple sauce, “basically light stuff that can be a sponge in my stomach to absorb any acid,” he said. The extra nutrition is supplied by PediaSure or Carnation breakfast drink.
“While I’m sleeping it just feeds me continually,” he said. “That way it doesn’t interrupt any of my daily life.”
Hoyne always has been small for his age — he now weighs 93½ pounds — and has a very high metabolism, which means he “won’t retain all the calories from the meal that I have. I may retain half of it,” he said. “I’m not on the [weight] chart. I’m not where I need to be for my age. It doesn’t bother me.”
Hoyne didn’t always rely on such a restricted diet. Until about 18 months ago, he was eating normal foods. Even then, he would have to rush to the bathroom to vomit, or reach into his throat to pull out a piece of food that got stuck. Lately, though, he’s been vomiting dried blood that he said looks a lot like coffee grounds, so the surgery is more urgent.
His feeding tube — a MIC-KEY low-profile gastronomy tube that looks like a button on his side and requires little maintenance — isn’t the only medical issue Hoyne copes with. He has ulcers in his stomach and throat, although he said, “I don’t feel the pain or the uncomfort that everybody gets.”
He also lost 60 percent of his hearing when he was 6 years old as the result of strong medication he needed to take for viral pneumonia.
Joan Bishop, executive director of the Oley Foundation in Albany, New York, which supports those on intravenous or tube feeding, said relying on a tube to receive nutrition “can be a barrier and lend itself to the feelings of isolation, that you’re different from other people.”
Often, a feeding tube is necessary because of “a swallowing impairment and that itself may restrict them from food-oriented activities.” Among the reasons for needing a feeding tube are the aftereffects of a stroke or damage from cancer radiation. But she said the devices have become much less conspicuous. “It used to be more of a garden hose variety that curled up,” Bishop said. Now, a portal that is close to the skin can be covered with a bandage if the person wants to go swimming, she said.
The Oley Foundation offers resources for adults on feeding tubes. The Feeding Tube Awareness Foundation does the same for pediatric cases.
Hoyne is an active member of several Facebook groups about feeding tubes: Adult Tubies, Teens with Feeding Tubes and #TubieProblems. “What I enjoy about doing it is it amazes me the different perspectives that people have,” he said.
Hoyne also started a Facebook group called Education Forum of America, based on his experience running for the Board of Education in Florida.
“I started the page to exchange ideas in a nonpolitical way,” he said. “There is no right or wrong answer. … We can share our ideas openly without being attacked.”
But his main mission remains spreading awareness about feeding tubes, that those who rely on them “can do just what anybody else can. It doesn’t put any road blockage in our lifestyle. It just helps us get the extra nutrition that we need; that’s all it does.”