Share this article

print logo

A matter of survival; Feeding tubes help kids flourish, but parents pay emotional price

Alex Callahan was born 13 weeks prematurely and had so many complications, including an aversion to food, that he spent the first three years of his life on a feeding tube.

His sister, Bethany, was born 12 weeks early. She is now 8 months old and she also has a feeding tube in her abdomen.

Janet Callahan, Alex and Bethany's mother, has no doubt that feeding tubes have saved her children's lives, keeping them nourished when they refused to eat. But this medical device has come with a social stigma. Callahan has faced pressure to get her kids off the feeding tubes.

"We've had plenty of people tell us that kids will not starve themselves, that if we would just let him starve, he would eat," said Callahan, 36, of Troy, Mich., who gave birth to both her children prematurely because of preeclampsia -- high blood pressure that develops during pregnancy. "We laughed and said, 'Thanks for your input.' "

There are several reasons why children use feeding tubes. Some use them because they are so sick they can't eat. Some use them because they are premature babies or have cerebral palsy and have difficulty feeding themselves or swallowing on their own.

But there is a downside to using a feeding tube long-term. Children don't learn how to swallow, and they can refuse to eat, which means they end up using the feeding tube longer.

Wanting to connect with others who have faced the same issues, Callahan joined the Feeding Tube Awareness Foundation, a New York City-based organization.

"Easily, there are more than 100,000 children who are tube-feeding or who have recently been tube-fed," said Traci Nagy, who founded the organization in 2010.

"Socially, it is really hard. We live in a society that revolves around food. Every major holiday, party or gathering involves a meal," she said. "It can be really challenging. Tube-feeding isn't the easy way out for picky eaters. This is way beyond that.

"At the core of being a parent is the ability to feed your child. When you are struggling to feed your child, it is incredibly stressful. It is so foreign to us that infants and children may have conditions that prevent them from eating. If a child had difficulty breathing on their own, no one would question the need for medical intervention. But it isn't the same with eating, even though there are many medical reasons kids aren't able to eat enough, and we need food and water to live."

Dr. Chris Dickinson, a pediatric gastroenterologist at the University of Michigan C.S. Mott Children's Hospital, said that some children use feeding tubes for just a short period of time, such as when they are battling pneumonia.

"Nutrition for us is hugely important," Dickinson said. "We call it one of our best drugs. It helps the immune system."

But Dickinson said other children need to use feeding tubes over the long-term.

There are three main types of feeding tubes based on where the tube enters the body: through the nose, through the mouth or directly into the abdomen. The tubes stay in the body all the time, although some children will yank them out. Parents need to go through training to learn how to feed their children through the tubes, keeping them clean and safe.

"It's very difficult on the parents," Dickinson said. "Almost every mother feels she should be feeding her child. When they can't feed, oftentimes the mothers feel they have failed as mothers. And it's not them. Getting them to understand that on an emotional level is not as straightforward as you might think."

Dickinson said some children with cerebral palsy use feeding tubes because they can be difficult to feed. "Let's say, it takes 1 1/2 hours to feed them," Dickinson said. "And you are forced to do that four times a day. That's six hours of your day. The question becomes, 'Is that value well-spent?'

"Sometimes, feeding tubes help with that."

Dickinson said premature babies go on feeding tubes because they "can't swallow. They don't have the coordination or strength to suck from a bottle or a breast. Almost all of those kids get tube feeds."

But that creates a problem. There is a risk that a premature baby will not learn how to suck or swallow. Dickinson said that premature babies also can develop a food aversion, because their development has been hindered. "It's a byproduct of what we do," Dickinson said.

"When you are a premature, what do we do? We put a tube in your throat to help you breathe. Then you have this feeling in your mouth and throat that isn't pleasant. In other words, we put things in there that just re-creates a bad experience.

"Kids associate having things in your mouth, not with pleasure, but with pain."

Alex Callahan weighed 1 pound, 7 ounces at birth, and was in Beaumont Hospital in Royal Oak, Mich., for 291 days. He went home on a ventilator and developed an oral aversion, so he stayed on the feeding tube.

His mother blended fruits and vegetables and gave them to him through his feeding tube.

He didn't have a piece of bread until he was 3 years old.

It set up several awkward situations.

When Callahan took her son to a restaurant, some people would wonder why they were not ordering food for Alex.

"Aren't you going to order anything for him?" people would ask. "What do you mean he doesn't eat?"

Callahan was made to feel as if she had failed as a parent.

It's a common problem, according to the Feeding Tube Awareness Foundation. The organization posts an open letter on its website, trying to educate people.

"Parents of tube-fed children are often thought of as not trying hard enough to feed their children, when often they have tried everything," the organization said. "The most basic of instinct is to eat and to feed your child. When a child is tube-fed, parents often feel like failures for not being able to nourish their child. Moreover, medical complications can be a challenge to navigate, making it even harder on parents."

Alex had his feeding tube removed in July.

"Alex is big on intense flavors," Callahan said. "He likes lemonade. He likes barbecue sauce. He likes really spicy food."

He eats tomatoes and onions, but he won't eat a grilled cheese sandwich because the texture bothers him, another condition that is common for children who have been fed through a tube.

"Right now, he's not the most fabulous eater in the world, but he's 3," said Callahan, an engineer on leave from Ford Motor. Barry Callahan, her husband of 11 years, works in information technology for a biomedical firm. "We are getting there."

Now, they are living through the same things with Bethany, who was born in May and spent 164 days in the hospital.

"We knew it could happen again," Callahan said. "They said it was about a 25 percent risk that we would develop preeclampsia. She has the same issues that my son has had and a few more."