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My son needed a feeding tube—when it’s not just picky eating

Boy being fed through g tube sitting with mother
Jennifer Bogle/Stocksy

When my children were 5 and 3, I found myself passing around pizza at a bowling alley birthday party. This was our first kindergarten birthday party, so of course all the parents were on best behavior, sussing out potential friends and allies. My first ally turned out to be Adam, a low-key British dad who was passing around bright orange soda. I noticed that his son wasn’t eating the pizza.

“He’s a picky eater,” Adam said. His tone was noticeably neutral, unlike many parents I heard complain about their child’s palate. He went on to describe the specific things his son would eat—not a long list.

I nodded and replied, “I have one kid who eats everything, and one kid who literally eats nothing, so he has a feeding tube.”

Adam kept his neutral tone and simply said, “Parenting is hard, isn’t it?”

Parenting is hard. A simple thing like eating should be easy, right? Except that for many families, eating is far from easy. Children run the gamut from kale-loving vegans to connoisseurs of dinosaur-shaped chicken nuggets to kids like mine who literally don’t eat food.

Like many things, feeding your kid sounds like an easy enough task, but sometimes it’s far from that. Many children experiment with both food and their own autonomy as they determine what they will and will not eat. That’s what we read about in all of the parenting books. None of the parenting books, however, ever mentioned a feeding tube.

When my baby was 3 months old, he had a swoop of Elvis-like hair, a habit of licking his toddler brother and an aversion to eating. Looking back, this was of course a clue that disabilities would be discovered in the months and years to come. But at the moment, that was far from our minds, all we could think was that our baby wasn’t eating enough. Or was he? As a new parent, it can be hard to tell. I knew that something was going on, I just wasn’t certain what exactly that thing was. So we went to the pediatrician. A lot. Our pediatrician gave us excellent advice that I wish all concerned new parents would hear: “Come in as often as you need to. Come in every day if you’d like. We will always see you. We will always listen.”

And they did listen. They also monitored my baby, looking for evidence of the thing that I knew was happening but couldn’t name:

  • Track weight: Write down weight taken at doctor’s office. Take baby’s weight at home.

  • Track diapers: Don’t just answer the question “Is your baby pooping and peeing enough?” Most of us don’t know what “enough” is. Get clarity from your doctor on what that means, and track consistency of stools. Gross, right? Yes, but it gives information.

  • Track eating: Write down how often and how much your baby eats. Bring this log to every doctor visit. If your baby is nursing, write down how long they are nursing, since amounts are harder to track.

This sounds basic, I know. But it wasn’t until I kept a detailed log of our baby’s meals that we were able to determine the problem: he was eating next to nothing. The day I brought the log to our pediatrician’s office was the day he was admitted to the hospital and the day he got a feeding tube. I was horrified. I knew nothing about feeding tubes and it sounded terrible.

The good news for you is that now you have heard about feeding tubes, and I can assure you that they’re far from terrible. According to the Journal of Pediatrics, “The prevalence of feeding disorders in the US rivals that of commonly diagnosed conditions such as eating disorders and autism.” While not all feeding disorders require feeding tubes, there are over half a million feeding tube users in the United States and over 3 million worldwide. So why is no one talking about this?

Because feeding your child is supposed to be easy. It’s easy for parents to feel like they are failing or there is something wrong with their child if they have a limited palate or no interest in food or do not have the physical ability to eat. Turns out there’s no shame in any of that. There is, however, a great deal of emotion when it comes to food. My son is now 10 years old and has yet to eat his own birthday cake, Thanksgiving dinner or even the bowling alley pizza of childhood birthday parties. It feels emotional to me. But for him, it isn’t. In addition to the motor planning challenge that eating by mouth presents to him, he simply isn’t interested. Feeding tubes may have been new to me, but for him, they’ve always been there—a life-saving part of his journey.

Would I say my child is a “picky eater?” No, it’s much more complicated than that. Maybe it is for your child too. Mealtime can be stressful, especially for kids with sensory processing challenges and motor planning challenges. Presenting them with healthy options—or even ice cream and French fries—may not do the trick. And that’s OK.

Adam was right: Parenting is hard. But something even more important I’ve learned after preparing over 18,000 feeding tube meals for my son is this: Parenting may be hard, but loving your child is easy. However and whatever they eat isn’t the goal. The goal is love. And you’ve already got that part down.

References

Journal of Pediatrics, Pediatric Feeding Disorder: A Nationwide Prevalence Study, July 20, 2020: https://www.jpeds.com/article/S0022-3476(20)30904-5/fulltext