There are a thousand different medical issues that can lead to the need for your child to be tube fed. Anything from a heart condition to a diagnosis of failure to thrive, to any number of other health concerns can take the hopes of cuddly-eating-times and flush them straight down the toilet. But what can feel more devastating than initial placement of the tube is that moment you realize that, even though your child’s medical issues have resolved, the feeding tube remains. And the question that most often persists at this stage is simple: Why won’t my child just eat?
For parents who have ruled out medical issues that might prevent their child from being able to eat safely and happily, the answer to this question could be very simple: Your child doesn’t eat because she doesn’t need to.
Imagine this: you’ve sat down and indulged in a hugely satisfying dinner, and just as your belly has reached that stage of blissful-sleep-inducing fullness, someone sets another full plate of food in front of you. And just as you wave the plate away, with full assurances that one more bite might cause you to burst, that person looks at you exasperatedly, unable to fathom why you won’t eat the meal that he has presented. To you, the answer is simple: your nutritional needs are more than met with the meal you just had. There’s simply no need to eat another one. This same principle can be applied to a child who is fully tube fed. Knowing this can help you, as a caregiver, to be at ease and to set realistic expectations for oral eating.
We don’t expect fully tube fed children to take any oral volume because their nutritional and hydration needs are met via the tube. But of course that doesn’t mean you should give up! Continue safe, happy, pressure-free offerings. Allow your child to explore family foods, even if that exploration leads to nothing more than squishes and licks. And trust that oral volume will increase over the course of a wean, and not likely before.
Elisabeth Kraus, MiT, Parent and Family Coordinator