Oral aversion

But this isn’t a story about heart defects. It’s about side effects. When it comes to repairing a heart no bigger than a walnut, the list of things that can fall apart while you’re solving the most obvious problem is virtually endless. In our case, the collateral damage was swift and dangerous: Violet stopped eating.

 

At first, she didn’t have the energy. This is what had been happening during those initial short feeds — Violet was too oxygen-deprived to make an effort. But our doctors were determined that she regain the half pound lost while she was dying, so she was given a feeding tube almost as soon as she came off the ventilator. A nurse inserted a nasogastric tube into her nose, then pushed it down her esophagus and into her stomach. That tube was connected to a feeding pump beside her Isolette. The nurses ran a cocktail of formula and breast milk through the pump every three hours, pushing as many calories as possible into Violet, whether she was awake or asleep.

 

Violet’s first open-heart procedure took place a week later. We all assumed that breast-feeding would resume immediately. But Violet continued to tire out so quickly that the doctors figured she was burning more calories trying to eat than she could possibly take in. So a second nasogastric tube went in, this time after very little deliberation.

 

‘‘It’s a temporary measure,’’ they assured us. ‘‘Just till she gets her strength back.’’ We thought she would be eating normally within two weeks...

 

It turns out that the instinct to eat is surprisingly fragile. Only around 100,000 children in the United States have problems severe enough to require the use of a feeding tube, according to estimates by the Feeding Tube Awareness Foundation. But 25 to 45 percent of all children develop the kind of habits that pediatricians and therapists see as the hallmarks of a ‘‘problem feeder.’’ They may refuse to eat certain flavors, textures or even entire food groups; others eat too much. Colic, reflux or a poor latch can cause an otherwise healthy infant to go on a temporary hunger strike. An increased suspicion toward new foods is expected with toddlers. But while some parents and pediatricians may panic over these normal developmental stages, others may dismiss a sensory processing problem or weak oral motor skills as just picky eating...

 

In Violet’s case, the eating instinct was destroyed almost as soon as it emerged, by what’s known medically as an ‘‘oral aversion.’’ Also referred to as ‘‘oral defensiveness,’’ and more unnervingly as ‘‘infantile anorexia,’’ this condition results when a child refuses to eat as a way of protecting herself from perceived trauma. Somehow, as a result of those early nursing struggles, the emergency intubation in the hospital or perhaps our own ceaseless efforts to get her to eat, Violet forged a connection between eating and pain, just as dogs learned to salivate at the sound of a bell in Ivan Pavlov’s classic experiment on conditioning. A baby with an oral aversion can lose those digestive reflexes and instead feel nauseated at the sight of a breast or bottle. She might not ever feel hungry, especially with a feeding tube supplying all her nutrition...

 

When eating goes wrong, whether it’s a life-threatening aversion like Violet’s or a common case of pickiness, parents and medical professionals find themselves at a version of the same crossroads: Do you try to correct the behavior — training a child to eat well, Pavlov-style — or do you try to rediscover that primal urge and trust her to take it from there? It’s a divisive question among the doctors and therapists who work with children like Violet, as well as a debate unfolding, consciously or not, around most kitchen tables in the country.

 

The most common approach, used by almost all the nearly 30 feeding programs found in children’s hospitals and private clinics around the country, is a ritualistic method known as one-to-one reinforcement. Think of it as the Pavlovian approach: It’s a form of ‘‘behavior modification,’’ a psychological tactic in which food refusal is classified as negative behaviors to be systematically replaced with positive ones...

 

‘‘The early tube-feeding experience often disrupts all of that,’’ Drayton says. ‘‘Every inch of their being says stop eating, stop eating, stop eating. If we let these children make all of their own choices, they would make bad choices. That’s why we don’t let 2-year-olds get their own apartments.’’...

 

But real progress was impossible because Violet’s nasogastric feeding tube was worsening her aversion. Every other Friday, I pinned her down and sang ‘‘You Are My Sunshine’’ while Dan threaded a new tube down to her stomach. When Violet screamed so hard that her throat closed, we would wait until she breathed again. When she choked and sputtered until the tube came out of her mouth, we would start all over, hoping that Dan didn’t twist it into her lung by mistake...

 

This [a gastrostomy] would be easier to live with: nothing taped to her face, no more torturous tube replacements, just a small plastic button next to her belly button. Westgate knew it was our best shot at healing the aversion, but I couldn’t see it as anything other than failure. We could now plug Violet in for food as if we were charging an iPhone. It was devastating. And also a relief...

 

This is where Berry’s approach splits off from the traditional child-led model and becomes radical. Calories from the feeding tube are cut significantly over a five-day period, so a tube-fed infant or child begins the wean on around 50 percent of his normal daily caloric intake and 80 percent of his optimal fluid needs. Over a 10-day period, Berry and Moreland are on call around the clock, giving support and coaching as the child, they say, rediscovers the drive to eat. After the initial wean, therapy continues as needed for six months; by then, 95 percent of Berry’s patients, she says, are eating all of their daily calories by mouth, although her findings have yet to be replicated or published in an American scientific journal...

 

Not long before that, we went to a diner for brunch. It was the first time in over a year that we went anywhere without packing the pump, syringes and tube. We ordered egg sandwiches and, from the kids’ menu, a grilled cheese, which Dan carefully cut up into postage-stamp-size bites. All around us, other families were tucking into their Sunday pancakes, chatting and clinking forks. Violet scribbled with crayons on her place mat, threw my French fries on the floor, giggled at her dad’s funny faces. And then she ate everything but the crusts.

 

http://www.nytimes.com/2016/02/07/magazine/when-your-baby-wont-eat.html?_r=1
Courtesy of a colleague