The truth about tube-feeding children

Plus, try my favorite tubie recipe

How many 10-year-olds do you know who eat this healthy for breakfast? 

Mine does. I blend it up and put it through his gastrostomy tube (“g-tube”). I am so grateful to this device for keeping my kid healthy and lowering my stress levels. 

Few things are more visceral to a parent than their child’s relationship with food. We have a core, physical and instinctual need to feed our children. When that relationship becomes medicalized, it is often a traumatic transition.

It is fairly common for parents of what are lovingly called “tubies” to have to wrestle with negative emotions about the feeding tube — either in their own minds or from friends, family and even strangers. Some research says up to 53 percent of tubie parents are at risk of PTSD (post-traumatic stress disorder).

The only time in my life I have ever thought I might faint was watching a surgeon insert a g-tube into my 4-year-old’s stomach. My logic brain knew it was OK, but a deeper part of me rebelled against seeing a foreign object pushed through my baby’s soft tummy skin.  

Overall, tube feeding is very safe and effective. But in 30 percent of cases there are complications (imagine what a baby might want to do with a cord coming out of his tummy) and in 28 percent of cases there is vomiting. Like, a lot of vomiting. So much vomiting.1

My son got his tube placed when he was young — in fact, the same week my mother got one as she was dying from cancer. His surgery was scheduled long in advance, agonized over for months; hers was an emergency procedure.

When we brought him in to her hospital room, we showed him Nana’s tummy and said: “Look! She’s just like you!” We expected him to be pleased, but we were wrong. He took one look at Nana’s new g-tube and burst into sympathetic tears. 

“Yeah, you’re right,” she said after a pause. “It is sad.” 

My son knew how much the procedure hurt. Who were we to deny it?

(These days, he has a more positive relationship with his tube. He was very interested in my research for this column.)

According to Feeding Tube Awareness, about half a million U.S. children and adults have feeding tubes. In a 2017 study, researchers found there were about 190,000 children receiving tube feedings under Medicaid. 

I tried for several years to feed my son enough to avoid needing a feeding tube, but now I don’t know why I was so against it. It’s just a tool my son needs, like some people need glasses.

Without this miracle invention, I would probably have to spend most of the day feeding him and trying to get him to drink enough water. Or, he would simply “fail to thrive,” which is what the medical folks call it when kids are starving, weak and not growing. (That terminology is easy to hear as “you failed” to a parent who has tried everything to fulfill this core responsibility to their beloved child.)

The food that is put through a tube is called enteral nutrition and that industry is expected to grow to $9.8 billion by 2028.2 This is mostly due to the adult market, but also from an expected increase in surviving preterm births.

In recent years, there has been an explosion in the variety of food on the market as parents and tubies have pushed for diets that are less synthetic. Last year, a registered dietician wrote about following a traditional formula diet and the results were fascinating. In short, she felt like crap and was constantly hungry or thirsty despite drinking more calories than she would ordinarily.

This is why many parents look into creating their own tube food from fresh ingredients. 

I tried many times to make my own tube food, but found it intimidating for years. I got a refurbished VitaMix through their medical discount program but it always felt overwhelming deciding what to put in a blend. When I would get around to trying it, the blends I made would get stuck in the tube, or squirt everywhere, or make my son ill. Many recipes I read were for massive quantities, too. It felt like a huge project to make quarts at a time, freeze them and then defrost. 

But then I realized I could just do it like a breakfast smoothie every morning.

I still use manufactured nutrition (PediaSure) every day, but I feel better knowing that my tubie gets a good breakfast each morning. Here’s my recipe and its nutritional values:

Easy blended tube food
  • 1/8 c. cashews (these blend smoother than other nuts)

  • 1 egg

  • 1 c. spinach

  • 1 T olive oil

  • 1 banana

  • 1 c. coconut water

I like this recipe because it is easy to follow, easy on the tummy and full of nutrients. I started with a vegan formula to make sure it was easy to digest. But a few months ago, I added the egg. Fortunately, he hasn’t had any adverse effects, but if your tubie is sensitive to eggs, just eliminate or replace it with another source of protein.

Whatever way a child gets food in their tummy is a cause for celebration!

Click above for a video of the recipe.

Astute readers may notice that the article on Social Security I promised last week has been replaced with this one about tube feeding. I expect SSA will answer my questions next week and I can publish it next Sunday. Stay tuned!

What I’m reading this week

A round-up of news for parents of disabled children.

• From Miami Herald: “Florida protected OB-GYNS from paying for their mistakes. They handed taxpayers the tab

“They make the family jump through all these hoops. Just to get what children are entitled to,” said Benitez, who lives in Lakeland, just east of Tampa Bay. “Hardship, that’s what it is.”

This is the story of how Florida lawmakers stripped parents of the right to sue over births gone catastrophically wrong, created a no-fault program funded by fees paid by doctors and hospitals to cover those claims, made hundreds of millions investing those funds in the stock market, accumulated $1.5 billion in assets and then offloaded much of the costs of care onto taxpayers.

• From NIH Record (2017): Anchor and Managing Editor of PBS NewsHour Judy “Woodruff Shares Personal Story as Caregiver to Son

“We decided the only way to get through this was to be optimistic, to assume the best, to stay cheerful and to stay busy and I know all of this in the end has made a difference for Jeff,” Woodruff said. “We didn’t dwell on the bad stuff; we were always looking ahead.”

Jeffrey’s condition took a toll on the entire family. While they strove to remain positive, Woodruff said she regrets not taking time to grieve what they had lost. “We just leapt over the grieving process and jumped ahead to how we were going to make the best of it,” she said. “It’s important to acknowledge the sadness and the loss.”

• From This American Life (podcast): “738: Good Grief!

“The most helpful thing for me has been other bereaved parents. Because when you come together — more useful than any of the words that people said — would be if I saw a parent whose child had been dead longer than mine had and I saw that they were able to tie their shoes... basic functions ... I thought: if they can do that, then I’ll be able do that someday. Hopefully.”

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