As I was updating my page on prematurity yesterday, I got to think of the idea of preemies as survivors. Many of us former preemies claim survivorship, take pride in it and yet also recognize the effect it’s had on us. I have no problem with the Dutch word for “survive”, which just means “live despite life-threatening conditions”, but I tend to feel uncomfortable with the English word. Literally, of course, we’re survivors, as the odds were pretty much against us in our early lives. All of us survived despite a large number of babies in our circumstances having died. We were all “at high risk” when we were newborns, and yet, we live.
But in English, survivorship means so much more than just living despite life-threatening conditions. It connotes that there’s an aftermath to the literal survival. I think it’s pretty much gotten that meaning from the meaning as with abuse survivors: some did endure life-threatening abuse, but some did not, yet they all carry the aftereffects of their abuse. In this way, I’ve seen people consider preemies survivors, too, but all they highlight is the physically fragile state in which we were and the medical treatments we received. To explain how prematurity still affects me today, is very difficult: many people are eager to contend that the medical treatments I received could’ve been physically traumatic and hence still affect me (I know folks who claim this, but I’m not among them), but to explain how prematurity has its emotional/psychological effects, is very hard to do to those that haven’t been in critical health in their early childhood or families of those who have. Even that is a little more difficult, cause it is so much more logical to assume that prematurity had emotional effects on the family than on the child herself.
What I mean, is that prematurity or otherwise being at high risk in early childhood, has profound effects on the entire family. There’s been written much about the physical limitations preemie children experience and about healing emotionally after having a child born prematurely, but there is hardly any information on the effects of prematurity on teens and adults. And what has been written about them – there’s some research about preemie teens, one project of which I even participated in when I was fifteen -, is mostly to warn the medical profession about the risks of allowing smaller preemies to survive. Doctors here use these statistics to determine that they won’t treat preemies born before the 25th week gestation. Yet no-one seems to care that these people who participate in the “warn the doctors” projects, are actually *people*, not just figures and statistics.
As people who were formerly preemies, we do still experience the aftereffects of our being born prematurely. We survived against the odds, and, in my opinion, we’re still survivors: many of us have physical problems related to our prematurity, and some of us consider our premature birth to have had an indirect effect on us emotionally. Even though I feel a little uncomfortalbe with the term “survivor” in its figurative meaning, I’m not content with the simple statement that we’ve continued to live despite our critical health and that’s it.