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Sunday, February 7, 2016

FTAW 2016- Awareness: The Power of Tube Feeding

It's Feeding Tube Awareness Week again! Today's topic is:

Awareness: The Power of Tube Feeding
Share information about why you or your child is tube fed. There are hundreds of medical conditions that can lead to tube feeding - most of which you can't see.

There are many reasons why Raya has a feeding tube. There were many reasons why she got one at the age of 10 weeks old, and there are many reasons why she still has one 6 years later, so I will explain both.

It started a little something like this:

And this:

In short, we had a miserable, refluxy, crying, screaming, projectile vomiting baby. She wasn't our first refluxy baby. She wasn't our first to spit up what seemed like most of what she had eaten. She wasn't our first to cry more than the average newborn either. She WAS different from the others though. She was the first of our babies to projectile vomit. She was the first to not respond to the comfort measures and interventions that had helped the others, and she was the first to lose weight instead of gaining it, AFTER we had been trying all the tricks and remedies that we could come up with to try. She was also the first to ever vomit to the point of passing out. The first to start refusing to eat. I mean, what infant refuses to eat?! Isn't eating an instinct?? Yes, but so is self-protection. For my sweet baby, like so many others, eating became too painful. Her instincts told her to stop. She found a balance between eating to relieve the gnawing hunger in her stomach, and stopping to keep the reflux and retching at a minimum. She was pretty smart.

This is where the tube entered the picture. Clever as she was, we could not trick her into eating enough to grow when eating made her feel sick, and her throat hurt from acid reflux and vomiting. She reached the point where she was no longer taking in (and KEEPING in) enough calories to sustain her life, even with all of the less-invasive things we were trying. (and believe me, we tried a lot of things)

There comes a point where the damaging effects of malnutrition become a greater risk to the well-being of the child than the risks of tube feeding.

We reached that point on January 20, 2010. We were 2 days into our first hospital admission, and nothing had changed since we arrived at the ER 2 nights before. Weighing in at just over 8 pounds at 10 weeks old, she was refusing to drink anything by mouth at all. We had no choice, and so we did what needed to be done to save her life. It worked.

One aspect of tube feeding that I think is widely misunderstood by those who are on the outside looking in is that for many kids, the point at which the tube goes in is often not the peak of the child's medical "crisis", for lack of better word. On the outside, getting to the point of needing a feeding tube seems like the worst of the worst. It seems like the lowest point. The crisis moment. And yes, often it is a crisis moment, but it may not be THE crisis moment. Tube feeding often prevents a child who is heading toward a health crisis from actually having one. For many kids, the feeding tube is what sustains life while their parents and doctors try to find what is at the root of the problem. Vomiting is a symptom. Weight loss is a symptom. Food refusal is a symptom. Feeding tubes, medications, specialized formulas, herbal remedies, and holistic treatments are all ways to help alleviate those symptoms while the team is in search of a diagnosis that may or may not lead to relief of the need for the feeding tube, but there is almost always something else going on. There was so much more happening inside Raya's little body that we could not even begin to figure out until we started tube feeding her.

From the outside looking in, it may seem that getting a feeding tube is when the child hits rock bottom, but it's actually not. For many kids, including Raya, the feeding tube keeps them from dying when they DO hit rock bottom. It preserves their strength to fight whatever illnesses and ailments they are fighting. It allows them to get the nutrients they need so that their brains can continue developing. It allows them a chance to meet developmental milestones. It allows kids who cannot or will not eat to still thrive.

Now here we are, 6 years later and still relying on the tube for 100% of Raya's nutrition and medications. I know it is often difficult for people who meet Raya to understand why she still needs a feeding tube. I hear a lot of "She seems so healthy!" and "She doesn't look like there's anything wrong with her." And I know anyone who spends more than a couple minutes with her will question how a child with her energy level can possibly have medical problems.

She CAN eat. She does eat SOME food, but she has heavy dietary restrictions due to food allergies and difficulty digesting certain foods, but mostly it boils down to the fact that eating is just not her favorite thing. She feels about the same way about eating that she feels about coloring. She'll color if someone tells her it's time to color, but she doesn't usually think of it on her own. Sometimes she finds a coloring page that she really likes and she'll color the whole thing, but most of the time she colors a little bit of it and then she gets bored with it and she's done. Coloring takes a lot of effort and she doesn't get enough enjoyment out of it for the payoff to outweigh the effort. The same goes for eating. The biggest difference between how she feels about coloring and how she feels about eating is that eating and digesting food is often physically uncomfortable for her. She has a chronic pain condition in her digestive tract that makes the presence of food uncomfortable and often painful. She still has reflux. She has a difficult combination of food allergies. She has a very short attention span. She has a difficult time maintaining a healthy growth curve on food calories vs. elemental formula calories.

There are still unanswered questions, and we do still hope for the day when Raya won't depend on a feeding tube anymore. For now, we are just happy to have her alive and thriving, and we owe it all to her feeding tube!

For more about Feeding Tube Awareness Week, check out the official Feeding Tube Awareness Week website, and follow the Feeding Tube Awareness Foundation on Facebook


  1. "She seems so healthy!"
    I wonder if it ever occurs to the people who say this the reason she seems so healthy is BECAUSE of the feeding tube helping her out.
    and "She doesn't look like there's anything wrong with her."
    21st century and people still don't know that not illness is visible on the outside. Also, 21st century and people still say the above phrase with no concern for how it makes a parent feel.
    Very well written, thank you for educating people. I bet you explained these things to enough people to last you a lifetime so thanks for taking the time to explain yet again.

  2. I needed this post tonight! We are a family in Utah with a 3 year old with CP and a feeding tube. I can hear it going off pumping pedialyte as I type because she's sick and boy am I grateful for that tube. I often feel bad for her because eating to live is not an option and hopefully one day it will be but for now this is what gives her the opportunities to thrive and if she has the tube her whole life, it will be all be ok.


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