Dominick Pacheco has been getting his nutrition through a feeding tube for most of his life.

“We've been doing the feeding tube since he was two years old,” said his mom, Salem resident Laura Pacheco. “He was born with vasa previa, so he had brain damage at birth, and he's got a lot of medical complications.”

Dominick, who will be 20 on Dec. 1, requires around-the-clock care. But even though he’s prone to seizures, the family maintains the rhythms of everyday life. Dominick goes to school and enjoys dinner with his family.

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Dominick Pacheco gets a warm, home-cooked meal.
Howard Powell WGBH News

Dominick’s meals enter his abdomen directly through a connection called a G tube. Enteral feeding, as it’s termed, requires a liquid diet. For his first two years with the G tube, Laura said they fed him formula.

“PediaSure and stuff like that — and his bowels were all over the place,” she said. “He was still retching like he wanted to vomit. It just wasn't a good mix for him at all.”

“So, my husband thought of making regular food and pureeing it.” That solved the digestive problems, Laura said. “And that's what we started when he was two, and we've been chugging along ever since.”

Dominick doesn't speak, but it’s clear from the big smile on his face that he enjoys his family’s home-cooked meals.

Hundreds of thousands of Americans are unable to eat orally, and they rely on enteral feeding like Dominick. Or, to be more precise, “home enteral feeding,” which are used in long-term situations rather than temporary medical conditions.

People who rely on tube feeding like this — they call themselves "tubies" — have been connecting through social media and have formed online communities where they exchange advice. More and more, people who use feeding tubes are turning to blending their own foods over using commercial formula. For one thing, it allows for more precise control over nutrition.

Laura Pacheco said she also gets “enjoyment in making sure that my kid eats healthy foods, and it makes me feel good as a mom to know that I know what exactly is going in his food. I can, if he's feeling sick, I can adjust his food. I can make the soup a certain way. If he has bloodwork and something is low, like he has low iron, I can adjust the soup that way, so I can modify it to whatever's in his best interest."

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Laura Pacheco blends homemade soup for her son, Dominick.
Howard Powell WGBH News

“Plus, it doesn't make him, in my opinion, make him any different from any other kid," she said. "He doesn't have to be ‘special.’ He's special enough. But now he gets to eat food like everybody else. So the same food that other people eat, he can eat, too.”

But some people who use feeding tubes are worried that a new design standard for feeding tube connectors won’t permit this kind of freedom.

The new connector is called ENfit, and it’s the first in a series of connectors made to conform to guidelines set out by the International Standards Organization. The ISO drafted guidelines to design unique connectors for each kind of medical tube — like IV lines, chest tubes, and feeding tubes — to prevent misconnections.

“That was decided because the consequences of a missed connection in enteral feeding are catastrophic,” said Michael Cusack, the executive director for the Global Enteral Device Suppliers Association, or GEDSA, a trade group that designed and trademarked ENfit. “You can imagine if you put in enteral feeding solution into someone's arterial system or into their brain cavity.”

In one horrific incident that gained national attention, a pregnant woman and the baby she was carrying died when a nurse mistakenly put feeding formula into her blood line.

“You're basically trying to put a milkshake into a place where it can immediately cause clogs," Cusack said. "And if that happens, then the adverse event that results is a bad one. Lots of times it ends in death right away, or severe consequences."

The unique design of the ENfit connector is all about preventing those kinds of misconnections. But the problem, according to some people with feeding tubes who blend their own food, is that ENfit is too narrow to accommodate that food.

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An Enfit connector alongside an old-style feeding tube connector with syringe attached.
Meredith Nierman WGBH News

They’ve formed a group, “Tubies Against ENfit,” that has been lobbying to prevent ENfit from replacing the old system and to make sure that insurances including Medicare and Medicaid still pay for the old, wider connectors.

GEDSA maintains that blended foods are not a problem for ENfit.

“The FDA specifically looked into this and said we don't have a concern,” Cusack says. “And the Mayo Clinic said that there are some differences, but they are not significant enough to be of concern in the study."

The FDA testing of ENfit with home blended food is ongoing.

“So I'd say that right now, we have lots of people that use ENfit connectors and they use blenderized diets. And it's not a widespread concern," Cusack said. "There is concern, but it's not a general concern, and certainly not a deep-seated concern that's going to prevent [ENfit] from being used."

“Tubies against ENfit” are basically outliers, Cusack said, or “squeaky wheels." But Laura Pacheco, who is not associated with “Tubies Against ENfit,” is certain that any tube narrower than the one she’s currently using won’t work for Dominick’s diet.

“They must not talk to families who actually use G tubes on a daily basis and use real food,because that's impossible to use,” she said about the new Enfit connectors.

Laura said it will be a big problem for her if the old-style connectors become unavailable, or insurance companies only pay for the ENfit connectors.

“I can't even imagine trying to put the soup that I make for him down that tube. It would be impossible,” she said. “So, I would be very angry if that were to happen."

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Blended soup, made by Laura Pacheco for her son, Dominick.
Howard Powell WGBH News

“I'm not sure what I would do if I was forced into that … I would probably end up finding the money to pay for the G tube because I wouldn't want to resort back to the formula," she said. "He's doing really healthy, he's being really healthy right now. And I would not want him to jeopardize his health to go back on formula.”

Dominick's connector is currently still available, but ENfit is being adopted by increasing numbers of hospitals and health care systems. Only one state, California, has mandated the switch to ENfit, and it missed its deadline for full adoption by 2016.

"Tubies Against Enfit" are lobbying congress to create legislation that would ensure the old connectors remain available.