In 1998, a series of events happened which eventually led me to be rather deeply involved in the community of families of children born prematurely. Over time, I also became involved in a group for adults with retinopathy of prematurity, the eye condition that caused my blindness. Still later, I started a group for adults who were born prematurely (with or without ROP) and others interested in discussing long-term effects of prematurity.
Involvement in these communities has had both positive and negative impacts on me. The positive impacts generally far outweigh the negative. I have learned a great deal about some of the things I struggled with as a child and adolescent: odd tendencies to become overwhelmed in noisy places, being somewhat literal in my thinking and rather obsessive about following rules to the point of hindering social relationships, inability to interpret certain types of social cues, etc. I learned to compensate for these things in my adulthood; but I have very vivid memories of the impact they had on my life during my childhood and teen years. Without the preemie groups, I might still be stuck thinking that these things were my fault, that I was incompetent, that no one liked me, etc. Knowing what I am dealing with gives me something I can learn how to handle. The knowledge made it possible for me to learn how to compensate and experience more success socially and otherwise.
This is an experience common to many parents and adult preemies. It is the reason why many have become very outspoken about the need for accurate information about the long-term effects of premature birth. I agree that this information should be available. What I have difficulty with--and have never been able to express well during all these years--is the manner in which much of this information is presented. Statistics can say anything a person wants them to say. It is really not possible to present them impartially. The presentation will be affected by the emotions and agenda of both the deliverer and the receiver. And I think that what is needed is a better balance in some of the presentations.
I have met adult preemies who are actually disturbed because they were doing so well compared to the studies. They wondered if they were somehow not aware of some problem they might have. Or, perhaps, was there a link between being overweight and being born prematurely? The overweight question is one of many examples. Often the example is something that is common in the general population and may even be genetic or lifestyle-related. What would be the point of linking it to prematurity?
This leads me to a discussion of the problems I have with the studies on long-term outcomes. There is very little emphasis placed on the fact that many preemies do have very positive outcomes and live successful lives. Studies often mention that a significant number of preemies have lowered IQ. However, many others have average or even superior intelligence. My first encounter with this kind of information came in 1995. I was taking a psychology class, and the professor claimed that studies showed that preemies had lower IQ than the rest of their families. I eventually gave up arguing with her. She clearly liked her agenda. In my family, I am the one who speaks and reads five languages, composes music, and excels in math. The rest of my family is certainly intelligent. But I am certainly not less intelligent!
In studies, I would be categorized as having a severe disability because my blindness is severe. To me, a severe disability is one that keeps a person from caring for his/her daily needs. I am living independently and finishing my Master's degree. I care for other people's children from time to time. I would not call this a negative outcome. It should not be presented as such. It should be presented as a possible difference to learn to work around. But in every family I know where the child has blindness and another disability, the other disability's impact trumps blindness whether it is a cognitive disability, a physical disability, or a serious medical condition. My experience bears this out. I live with several chronic medical conditions which are a lot more challenging in terms of accomplishing my goals than blindness is.
There is discussion from time to time on the parenting groups about the idea of developing diagnostic criteria for a "preemie syndrome." Somewhere I have some posts on what this actually involves. It is a long list of characteristics. The idea scares me. It scares me for a number of reasons. First, it leaves preemie children vulnerable to stigmatizing labels simply because they were preemies. The least few behavior problems in combination with a medical condition or small stature or any number of other things could be interpreted as "preemie syndrome" when the truth might be that there are other factors at play (e.g. psychosocial challenges rather than neurological issues responsible for behavior, genetic problems that are overlooked because a medical condition is blamed on prematurity, failure to treat something because it is assumed to just be an outcome of prematurity). All of these things are things that concern me deeply. It is important to recognize the possibility that premature birth means that a child's body is vulnerable to brain injuries that can cause lifelong behavior problems or learning difficulties, emotional disorders, autism, seizures, etc. It is important to recognize that preemies' lungs may be underdeveloped and the pimpact of this is asthma and chronic infections. It is also important to recognize that the preemie has a genetic make-up that may also play a significant role in general health. It is also important to recognize that once in the world, the preemie is as vulnerable to environmental injuries and psychosocial stress as anyone else. Somehow, the professionals responsible for a person's care need to balance all of this stuff out. And somehow, we need to remember it for ourselves. While prematurity is part of our identity, it absolutely must not define us!