A few days ago, I was googling preemie parent blogs. I also was allowed into a preemie parent support group on Facebook. I disclosed right away that I’m not a parent but was myself born prematurely, but the parents loved to read my insights. One issue I’m struggling with in particular is that of quality of life as an argumetn for or against trating certain preemies in the NICU. One parent in the group said somethhing to this effect: that being loved beyond words is a good enough quality of life.
Even though I suffered from about every major complication in the NICU that is used for quality-of-life indicators – eye damage, a brain bleed, lung problems -, and I came out having major disabilities, I consider my uality of life pretty good. I realize I could’ve been more severely disabled, and that many parents deal with kids (and eventually, adults) who need more care than I do. Heck, on my ward I fall right in the intermediate range of care needs.
My parents at one point were in doubt about whether I should be treated, but they were told off by my neonatologist, saying they were just keeping me alive and not to interfere. This neonatologist later defended rigid policies on preemie treatment (whereby babies under 25 weeks gestationa re not treated), saying he sometimes meets preemies about whom he thinks: “What have we done?” I wonder at times if, were he to meet me, he’d think the same. I know that, judged by my writing, I’m pretty high-functioning, but I do need substantial support.