One of our closest online CF friends is struggling with a decision about whether or not to opt for a g-tube for her sweet baby boy. He started out life quite chunky but has reduced to the 5th percentile now that he’s around a year old. She’s asked for wisdom with the decision, so I offered my 2 cents, which she has since insisted that I give… so here it is for open discussion.
Make no mistake about it, a g-tube is a huge deal. I’m not sure if my parents ever struggled with that option for me or not, but I do remember a time when they were really being pushed by the doctors to do nightly NG tube feedings, but I have a serious gag reflex and have puked every time I receive one. Sorta defeats the benefits right off the bat when you lose your dinner before bed, in your bed.
In my opinion, there has to be an ever-present consideration for emotional well-being that ranks just below health well-being. Beautiful has told me more than a few times to stop thinking about my bad parts about childhood related to school, the other kids, and how being the odd one out most of my life shaped a significant part of my personality. I was, simply put, different. Kids are both the meanest monsters alive and the sweetest creatures created, all in the same package. They both pick on anything they can see that is different while ignoring many obvious handicaps. To me, adhering to a medical textbook’s guidelines of what is healthy at the expense of childhood development is a potentially more severe problem waiting to happen than anything associated with being a low weight, as much of a pro-weight guy as I am. Now for some explaining on my part.
I was a chubby little guy as a toddler, despite my big meconium ileus surgery that had me on super-weak formula for months. I’m pretty sure my mom still has the growth charts of my height and weight percentiles from the early years, but I remember myself being in the 5th percentile on height for as far back as I can remember. I was in a class of 72 kids and only 2 others were close to my height, but both were still taller by a smidge.
When I wanted to play midget football (4th-6th grades), I had to wait until the 6th grade to meet the minimum weight of 60lbs while we had 4th graders going on diets to make the 120lb max at weigh-in. That one year was one of my greatest personal achievements that no one can take away from me, but a g-tube very well may have. I played 4 years of baseball, a year of track, tag (often turned into tackle) football every day at recess, and had a bass drum strapped to my chest and stomach for marching band for 3 years.
Those where the things that kept me healthy.
Now… granted, perhaps the new g-tube procedure and setup is less readily detectable by classmates, but I would suspect that parents would still have to be more cautious with that than without. I know I limit some of my activities due to my port (like how much I’d enjoy doing martial arts for exercise), and any locker room situation would have been the end of me. I was already the last to develop in my class, so having something medical like that would have been too much.
I may have been a lightweight, but I had lung functions in the 80s up through graduation, ran like greased lightning, and had an appetite that could put a small country out on the streets. While there is a lot to be said for the value of having extra weight to ward off infections, being that active is also a huge plus. Heck, I could hold a 12-16 second note at full blast in choir in the 10th grade, so pardon me if I’m a little passionate about doctors being so quick to permanently alter someone’s life over something so temporary.
Dad has said that the method they used to get me to eat was to feed me lots of pizza and beef: two things that I really scarfed down. Anyone who is passionate enough about their kid’s health to opt for a g-tube is a great candidate for trying oral options longer, especially as long as everything else is doing great.
My 2 cents wraps up with my premise that gaining weight most likely would not have been able to keep me much healthier than I already was with my activity level and would have likely only increased the possibility of being teased and significantly restricted my physical activities, thus decreasing my lung function. In the end, at this point in his life, you’re making a decision for him that will have long-term ramifications, even if the g-tube is a short-term solution after all. Unlike those parents who give their kids the dumbest names on earth, you need to balance what is good for him and what will harm him non-medically, too.
Here is what I told her, though:
You will do what is best for him and knowing that will give you peace with your decision.
I stand by that as advice for fully-informed parents who truly have their kids’ best interest (not those screwed up parents who get their kids taken away).