The first thing I would like to say, is that there have been very good doctors who cared for me and helped my parents very well, especially the neonatological pediatrician Dr. Fetter (don't know if I spell the name correctly), who, according to my Mum, has "brought me into the world" (LOL). Besides the "bad" doctors, there are those who have done their very best to help me survive and get the fewest complications possible from my prematurity. In this story I more focus on the bad ones, as those are the ones I hear the stories about from my parents, but I want to thank all good ones, without whom I probably wouldn't have been where I am now.
My mother had had four pregnancies that all ended in miscarriages or premature, dead babies before I was conceived. Of course, she didn't want to get a fifth miscarriage and I'm sure she wanted to do everything she could to prevent premature delivery. After her fourth pregnancy, she was advised by a doctor to tie up her womb when she would be expecting the next time to prevent premature delivery. This appeared to work with my younger sister (now 15, born at 36 weeks). However, another doc was conducting research on the use of Aspirin to prevent prematurity. Later he admitted that his idea was nonsense. My Mum, however, followed his advice.
I was born in Dijkzicht Hospital in Rotterdam (The Netherlands) on June 27th, 1986 and within a few hours taken to Sophia Children's Hospital (now part of Dijkzicht) also in Rotterdam, because I had to receive neonatal intensive care. I was calculated by the doctors to be born after 26 weeks and four days gestation. Later I discovered it was 25 weeks and two days. I'm very happy with this "mistake", cause at the time Sophia didn't treat babies born before the 26th week, but when I first discovered about the mistake, it made me feel really bad: I even felt like I didn't have the right to live, for I was born "too prematurely" and I wasn't doing extremely well (not very bad either).
I was placed in an incubator and have received oxygen for about six weeks, for I couldn't breathe on my own yet. My Dad later told me about his concern and nagging about the amounts of oxygen I received and the nurses for easiness' sake sometimes not being careful with that. I don't know if they really thought it was easiest to give me too much oxygen when I looked blue from oxygen deficit, but my Dad explained it to me as if the nurses didn't care about the risks of too much oxygen, which is thought to cause Retinopathy of Prematirity (ROP), from which I'm blind. Recently, I learned oxygen is not thought to be the only cause for ROP and the exact cause remains unknown.
Over the years, I've heard many stories from my parents about my prematurity and NICU time. Most times, my parents appear to be angry with the doctors - mainly the one who advised my Mum to take Aspirin to prevent premature delivery. It seems, to me, that most docs were bad and some were really good. Sometimes, it annoys me when my parents can't stop accusing the doctors of all sorts of things, cause it makes me feel as if I'm bad, being born prematurely and having my blindness.
Each year around my birthday, there'll come a day (now mainly night) in which my parents start talking about the summer of '86. Those are the moments I get to hear the same stories over and over again: the doctor prescribing Asprin for prematurity prevention, the nurses not being careful about the oxygen amounts and the very bad eye doc I had shortly after my ROP was discovered - but I can't remember that story very well, as I think I've only heard it once as a little child. In those nights there's one positive topic: how good Dr. Fetter, the neonatological pediatrician, has been. I think he was (and is, he's still working, but now in Amsterdam), although I can't remember him other than from TV programmes.
It seems to me that my prematurity still affects my parents (mainly mother) emotionally. Of course they were very sad when they found out I was legally blind, cause they of course had "much rather wanted a normal, happy child", and indeed my parents had hoped to get a full-term child. When my mother says things like that, I sometimes feel very bad: am I not good because of my blindness?
What also annoys me, is when my parents tell me how scared they were that I wouldn't survive, and how they sometimes still have an idea like: will she rub along? Those sayings carry expectations with them, and it feels like I need to meet high expectations to prove I "rub along". Often, my parents relate that attitude - when I tell them about it - to their fear 17 years ago, but still it frustrates me.
While writing this article, I've come to the conclusion that I at least find it very hard to empathise with my parents where it comes to prematurity and blindness issues. I don't know what life would be like if I were born full-term and had sight, simply for I am not a sighted, formerly full-term person. My parents probably have better knowledge about that, for I have a formerly (almost) full-term, sighted sister.
Also, I haven't had a premature baby and I find it very difficult to imagine what my parents' fear was like. By this story, I don't mean to offend my parents in any way. I'm happy for having them for parents, but I just mean to say prematurity also affects a child when he/she grows up.
Lately, I've been looking on the Internet for resources for former preemies. One thing I found was the Former-Preemies Mailing List. Most other resources are dedicated towards parents of (former) preemies, and I feel they are not really useful for me. However, I hope parents who are or have been where my parents were find them very supportive. If anyone knows of any other resources for former preemies, please let me know.
