During this Feeding Tube Awareness Week, I'd like to share a little info each day to bring awareness to this life-saving technology and practice. We're off without a bang, but a whimper, because I was too busy the very first day to write what I had hope which is firstly: WHY do I want to build awareness of tube feeding?
My reason to raise awareness is that other people made me aware of tube feeding over the prior decade and that peripheral awareness greatly reduced my fear and trauma when our own son Thomas (then 5) had to become a tube-fed child. Tube feeding is probably all around you and you don't know! In fact, "the Feeding Tube Awareness Foundation estimates that approximately 20 percent of children under the age of 18 are tube fed, and there are more than 350 conditions that can require children to need nutritional support through tube feeding." (This high percentage shocks me, but perhaps it includes children being temporarily fed by tube in hospitals.)
Of course, the most temporary type of tube feeding that we are all probably aware of is the NG tube (naso-gastric, because it goes through the nose into the stomach). This is used mostly in a hospital setting for temporary purposes, but there are also many people of all ages who go home with NG tubes for many months. They are an unpleasant hassle and I think many NG parents decide they'd rather just have a G-tube placed (direct access into the stomach).
My first exposure to tube feeding was when I went to the home of a new church acquaintance to babysit her other children while she took her disabled child to a medical appointment here in her new town. He was tube-fed and I don't remember her forewarning me. I just saw that his older siblings (the oldest maybe 9 years old) were giving him his bolus feed through a tube into his stomach (because it really is a much simpler task than one might think) . . . and this little boy had already figured out the hilarious joke that if he coughed at a certain point in the feed, he could make the thick liquid food burst back out onto his older brothers. He laughed and laughed! The truth is that at the time, I was astonished, but *now* that I'm a tubie mom myself, it is hilarious.
I later knew an adult family friend who was experiencing cancer and he temporarily used a feeding tube during that year of treatment for his nutrition. Feeding tubes are often used during cancer treatments or other major medical episodes because they save the lives of all those people who would otherwise die of starvation before treatment could save them. (This reminds me how much I want to write a piece about Total Parenteral Nutrition also!)
I also have a lovely friend whose infant daughter experienced a rare organ deformation that took almost a year to be diagnosed but prevented her from getting enough milk. She became a tube-fed baby through her early years, and then participated in a truly excellent in-patient feeding program to learn how to eat enough by mouth to maintain her own calories.
My neighbor's adult daughter has been tube fed since her childhood, living for decades with that as her sole nutrition!
At my current parish, I noticed there is a little boy there who wears a small backpack with a little tube coming out of it, disappearing into his shirt: before I even introduced myself to his mom, I knew this meant not only is he tube-fed, but he requires being continuously fed (fed formula over many hours at a slow rate) instead of receiving a bolus (a meal worth of formula over only a couple of minutes).
Not that many decades ago, most of the people I've described would have simply died of starvation, but now they have the opportunity to live to the fullest of their abilities.
There could be people in your own life who are tube fed and you have no idea. (In fact, upon publishing this post, a friend told me that her baby was tube fed for his first two years due to his heart defect, and I knew them the whole time and had no idea he was being tube fed!) Most people who require tube feeding can still also eat by mouth, just not enough. The access point on the abdomen is called a button and is very small, so you would not notice it through clothing.
Tube feeding has been one of the many medical interventions that has saved our son Thomas's life. When his surgeon installed his tube, I felt fairly calm about that aspect of the situation precisely because I knew all these normal families with various reasons why their kids (or adults) needed nutritional support . . . and being fed by tube would be okay. I look forward to explaining more about tube feeding in the week ahead!
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