I didn't even know there WAS a Feeding Tube Awareness Week!

   Apparently February 6 - February 12, 2011 is Feeding Tube Awareness Week, and since my Little Child eats primarily via g-tube, I thought I'd say something. As more and more severely premature children and children with protein allergies/malabsorption issues or anatomical defects survive past infancy and beyond, feeding tubes are becoming pretty common. My son's smallish elementary school alone has four tube-fed students in attendance, and chances are you'll run into a kid with a tube sooner or later. Here's a quick overview of what a "feeding tube" actually is and some things NOT to say if you notice that you're in the presence of a child with a feeding tube.

   NG (nasogastric) tubes, the tubes you sometimes see running out of babies' noses and taped to their cheeks, are usually the first type of tube a baby or child will get, because they don't require surgery and are very easy to remove when the child doesn't need the tube anymore (you just pull them out). If the child's stomach isn't functional or they're at high risk of aspiration, sometimes a radiologist will help guide this type of tube down to the jejunem (small intestine), bypassing the stomach.

   G-tubes are a more permanent solution for children who need long-term tube-feeding; they are surgically inserted into the child's upper left abdomen, and after an initial healing period with a "pull-PEG" starter tube (kind of like how you get "starter earrings" if you pierce your ears) consist of a "button" held in place by a water-filled balloon. There is a valve on the side to inflate and deflate the balloon with a syringe and a port to attach an "extension" (thin, flexible tube through which you give formula or pureed foods) to. Some kids end up needing a "G-J" tube (a type of tube that uses a "button" at the G-tube site to anchor an internal tube threaded down to the jejunem) or even a separate J-tube (these are a few inches lower than a G-tube).

   If you notice a little kid running around with a tube running out the bottom of their shirt into a small backpack, probably they have a "Kangaroo Pump." Children whose stomachs don't tolerate high volumes sometimes need to use a pump that delivers a measured rate of formula. Little Child had a pump for the first year or so that he used his G-tube (after five months of an NG or NJ), but is now able to have "gavage feedings" (where I attach a 60-cc syringe barrel to his extension, hold it up, and pour formula down it, letting it run in via gravity).

   It's normal to be curious when you see something different, but how you express that can be the difference between making a new friend and being "that IDIOT" some mother of a tube-fed child rants about to her friends.

   Asking about a feeding tube is usually fine, but just come right out and ask "is that a feeding tube?" rather than saying "what's wrong with your baby???"

   Asking how long the child's doctors expect them to need tube-feeding is fine. "He won't have to have that thing FOREVER will he?" and "when will he get that taken out?" are not. Because maybe the tube IS expected to be permanent, and if it is then probably the kid's parents are just grateful they're alive--you could hurt their feelings or worse, make the child feel uncomfortable by implying that a permanent tube is such a horrible thing.

   Asking about a child's prognosis on a first encounter is NOT okay. First of all, if you don't know the child or their parents, it's none of your business. Second, if the prognosis is uncertain or poor, you're asking a stranger to tell you their greatest personal tragedy on the playground, and that's rude. And third and probably most important? If the kid is right there you're being grossly inappropriate; you don't know how much the parents have told the child about their condition. Also, if you say it like "but he's going to be fine...right?" you're essentially asking the child's parent or caregiver to reassure you for your own peace of mind. That's not their job.

   Asking the child questions about the tube (unless the child engages you and brings it up) is not cool. If you have questions about the tube, ask the parent or caregiver, and if you're just making conversation, make it about the child's super-cool shoes or beautiful curly hair or whatever you'd remark on to another child withOUT a tube. The kid is probably keenly aware that they are different, so you don't need to emphasize that.

   Finally, and this is kind of odd but I've heard it on several occasions, do NOT watch the child's parent or caregiver prepare to feed them and then point and shriek "IS THAT STERILE? THAT DOESN'T LOOK STERILE!" Feeding tubes are not like central lines; they are not sterile. The gut? Is not sterile. Formula that goes in the tube and the implements used to deliver it therefore do not need to be sterile. I tell people "it just has to be dishes-clean" and am usually pleasant about it but really? The child's parent or caregiver knows what they're doing. If you see them do something with their child's feeding tube, probably that's exactly how they're supposed to do it.

   Thanks for reading, and hey if you want to help brighten the lives of lots of kids like mine, click and support this organization, which is trying to get Sesame Street to include a castmember with a feeding tube.

Comments

[Michelle]

Our niece uses one now for continuous overnight feeds due to her mitochrondial condition and difficulty digesting food.

I think I mentioned that stepson had one for 6ish years. It was removed and sewed up about 5 years ago as it was no longer needed. Stepson will be 12 in March and had taken to telling nosy people that the scar is from a gunshot wound. LOL!

[Mary]

As I'm sure you know, my nephew has one. My good friend's youngest son has a G-tube as well. I think I helped keep her sane when a G-tube was first suggested to her by happily spouting off, "Oh, yeah, my nephew has a g-tube! It's been a lifesaver!" when everyone else was horrified by the prospect for her child. It's a shame that some people need them, but it's wonderful that we have them at our disposal. Not starving to death is generally desirable, yes? I know it's a foreign concept to so many people, but I really don't get the fuss. Oh no, a tube that feeds into the stomach. The horrors!

[amanda]

What if your kid asks about another kid? What should I say then? I was fortunate when my son asked about a little girl in a wheelchair, because his friend Justin's sister is in a wheelchair, so I had an answer ready, but I don't have one ready for that.

[Bionic Baby Mama]

shit. next thing i know you'll be telling me those oil change jokes weren't appropriate, either.

[K]

Thank you for this. Really. For saying it, for writing it, for breaking it down.

[Hairy Farmer Family]

Superb post! Will mentally file away in case needed; I'm sure I would have fallen into the 'too much info required on first meeting' pitfall, despite having been madly irritated by just that sort of thing myself...