Over the years, I’ve talked with hundreds of parents who have spent hundreds of hours coaching their child to take hundreds of bites, only to watch those bites swirl around in the mouth and be spit right back out. And when all you want is for your sweet, tube-fed kiddo to take, enjoy, and actually swallow something, that experience can be endlessly – and I mean, ENDLESSLY – frustrating! After all, how hard can it be to swallow? Most of us have been doing it since the day we were born! And most of us just want our sweet babies to demonstrate the capability to eat on their own so that the tube can be removed, and we can all go on with life.
But when it comes to swallowing, there are a few keys that are important to remember.
First, we know that fully tube-fed kids simply don’t need to swallow. Because their caloric needs are fully satisfied with the tube, there’s no intrinsic motivation (appetite/hunger) to consume additional calories on top of what the tube provides. More simply put? Full tummies don’t often want more. When a person’s appetite is fully satisfied, as we explain here, the expectation to eat more on top of that is likely unrealistic. And so mealtimes become less about eating, and more about socialization: tube-fed children long for the relational bond that mealtimes provide, they want to please their parents/caregivers, and they want to participate socially in family meals. So often, they will pick up and play with food, sometimes putting it into their mouths, and most often spitting it right back out.
And as frustrating as it may be for you, as a parent, to watch this happen, it’s important to remember this: this is absolutely what we expect to see. On its own, it’s not problematic or indicative that your child is not ready to wean. In fact, we do not expect fully tube-fed children to eat large quantities (or any quantity, really) before beginning to wean. Rather, what we look for is comfort: if your child feels safe and trusting during a mealtime, enough to explore, play with, and maybe even lick or chomp at the food that you offer, then it may be time to consider a wean program! Oral volume most often comes as a byproduct of weaning, rather than a prerequisite to it.
Second, we know that swallowing, as simple as it may feel to those of us who have been doing it all our lives, is an incredibly complex physical process. In fact, it takes 26 muscles and 6 cranial nerves to support a single swallow! That makes swallowing even harder than walking and talking – and children are remarkably aware of how their swallows feel and impact their bodies.
When a child’s swallow is unsafe, he will likely limit how much he is willing to drink because his body recognizes the danger to his airway. This kind of self-limiting – refusing to drink or spitting out of food – is a protective strategy that his body is rightly putting in place in order to protect his airway. Often, practitioners use tools like swallow studies to better understand compromised airways, and while useful, we recognize that pediatric swallow studies don’t always show everything (more on that here). And so we rely on qualified feeding therapists to support parents in coming up with ways to help their child learn to swallow safely. One of these recommendations may be to thicken your child’s drink to varying levels, from really thick to fairly normal. Here are some of the viscosities that you may encounter:
Nectar-thick liquids are easily pourable, and are comparable to apricot nectar or thicker cream soups. It’s absolutely possible for a child to wean to nectar-thick liquids.
Honey-thick liquids are slightly thicker, are less pourable, and drizzle from a cup or bowl. It’s also possible for a child to wean to honey-thick liquids.
Pudding-thick holds its own shape, is not pourable, and is usually eaten with a spoon. In our experience, a child who requires nothing thinner than pudding thick may need to wait to wean, as hydration could become a concern.
Nonetheless, if you find yourself in the position of the parent described above: sitting endlessly at a table, hoping and praying, anxiously waiting for your tube-fed child to do something more than just play with his food, you’re not alone. This is a common and valid frustration – and one that we hope you can begin to view with hope. A tube-fed child playing with food and interacting socially during mealtimes is a child who feels safe and “at home” at the dinner table. And that safety is, by and large, the strongest foundation upon which to wean! So don’t lose hope if your kiddo isn’t swallowing yet. Our guess is that he or she will build those strong skills as weaning begins.
Elisabeth Kraus, MiT, Parent and Family Coordinator