Something to think about

     C’s feeding issues are especially difficult for people to grasp. The best way I’ve found to explain it is to say he is absolutely terrified of food. The thought of food can bring up a fear in him so primal it’s hard to imagine it wasn’t born in him. Yet I suspect the trauma of being re-intubated several times as a newborn (he would cough the intubation tube right out as a NICU baby, something the nurses found amazing), combined with a highly sensitive sensory system, a poorly developed tongue, and motor planning problems are the likely culprits.

     The issue first presented itself when he was nine months old. A well-intentioned occupational therapist gave him a cheerio, his first encounter with solid food, and he immediately gagged, choked, and vomited. It was downhill from there. Ultimately we found a feeding therapist (who would even know these people existed unless you needed to know?) and we started seeing her immediately.

     Apparently, feeding is one of the most all encompassing things our bodies actually do besides sex. All the senses are engaged, our hands must be able to find our mouths (no small feat for someone with trouble getting messages from the brain to the hands), our tongues must be developed enough to move the food around, and we must be able to swallow. When you think of how all these systems work together for us to actually eat, it’s amazing we can all do it.

     Many, many people have said to us that we should let C get hungry enough and then he would eat. AHA! If only that were true! There’s a small subset of children who will actually starve themselves to death rather than eat a food that scares them. It’s difficult for someone who has children who simply just EAT to grasp this. C is not a picky eater, but rather the texture, flavor, and newness of an untried food triggers an actual physical reaction that we all know as the “fight or flight” response.

     When we started feeding therapy, we were at war in Afghanistan, and I remember seeing pictures of children who needed help in so many ways. I asked our feeding therapist what would happen to a child like C in a country where he couldn’t get this kind of help. Her answer, both abrupt and painful, was, “He would die.”