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.
