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the preemie information balance beam

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!


( 29 comments — Leave a comment )
Jan. 1st, 2009 08:41 am (UTC)
I dont think that having a diagnostic "preemie syndrome" is a good idea. I understand that medical knowledge is expanding, but now EVERYTHING is a condition? It's a little much and more hindering I think, especially in the long run.

You should be proud of all you have accomplished! You are an inspiration :)
Jan. 1st, 2009 08:49 am (UTC)
one of the things i find interesting, in talking with many doctors over zane's relatively short lifetime, is that some will really get on our cases for not mentioning the premature birth, while others seem to not be bothered by it. he does not have asthma, and we are lucky that he has no lasting breathing difficulties at all. he was on a vent for 12 days, which is not at all what anyone expected. i think that since they had time to give me all of the lung maturing shots before labor started, and that they were given in enough time to really take, the doctors were all surprised that he then needed the surfactant to also inflate his lungs and the full 12 days on the vent. they tried pulling him off twice, and each time he nearly crashed. he really had terrible breathing issues, and was on caffeine for six months and an apnea monitor for that length of time as well. he also has horrible sensory integration disorder, which showed up early as well. he was fine in the nicu, but as soon as we got him home, he had to be on me, or on keir constantly to be soothed. he had to be nursing all the time, or held, or in motion to be happy. he was born with hydrocephalus, which we knew about, since we knew there was a triple cord defect, but because of the position of the placenta, an amnio was not safe since at 20 weeks i was already going into labor.

one thing we were told, and i always found this interesting, was that after the age of two, since he had no major deficits from his prematurity, that we did not need to dwell on the fact that he was a preemie. it might have played a part in his autism, and i am sure that it did, but i do think that no matter what, zane would have been autistic no matter when he had been born, early, on time, later, whenever. i am not discounting what you have found though, because i do find it to be quite true. my brother was premature, and he is quite impossible to deal with, and while there have been tons of reasons given, when we briefly attended family therapy while i was hospitalized, one of the things that has stuck with me is that the psychologist suggested that my brother's affect was that of a premature infant who never quite got the hang of dealing with the real world. that he had what he referred to as something like preemie syndrome- something about how some adult preemies are unable to function outside of certain perameters and set certain criteria for people to meet that sometimes they themselves can't even meet. it is certainly showing up now in the ways he has set my husband up for hatred from my parents by telling outrageous lies about him that he has gotten my parents to believe, and how he has shut himself off from me and the kids after making some real promises to the kids and has no concept of how he has let them down. what amazes me is how my mom is always willing to cover for him, saying he is busy or has no idea what he is doing. it is like he has no clue how to behave.

ok- enough taking over your post. but it is interesting to read that there might be a real explanation other than my brother is a complete ass.
Jan. 1st, 2009 09:06 am (UTC)
I generally don't think prematurity has had a major impact on my life other than ROP. I had lots of "weird" medical problems as a child, though, including several years where I had a series of seizures that were never explained (other than the fact that I was never diagnosed with epilepsy because I didn't have two seizures in a close enough time frame, or something like that) and I eventually seemed to grow out of them. I sometimes wonder whether that was related to prematurity or not. I also have extremely mild asthma and slight congestion all the time which is apparently caused by respiratory problems and treatments I had as a baby, but it really does not affect my life at all (I used my inhaler so infrequently that I haven't refilled the prescription since 2003).

I think preemies are so diverse that some sort of "syndrome" would be a bit pointless other than to group people under a label. I know preemies who have severe disabilities because of it, some with just one or two milder disabilities (such as ROP, which I would not consider severe either), and some who have absolutely no health problems at all. I know twins where one is totally blind from ROP and the other is fully sighted, and neither has any other evident residual effects. Would it make sense for some preemies to have this "syndrome" (which then might make it tempting to assume many problems are caused by prematurity) while another person born at the same time or even earlier doesn't (where problems then might be overlooked and blamed on other factors)? I don't think it would.
Jan. 1st, 2009 02:10 pm (UTC)
The preemies I know...
The preemies I know are very tenacious, to the point almost of pigheadedness sometimes. I think that might be because preemies with no tenacity don't survive. Though when I pointed this out to a mother of three preemies (ages 10, 16, and 18) she said she thought a lot of preemies might be hyper timid because their mothers were traumatized by the NICU experience and overcompensated with massive overprotectiveness.

I agree that I hate the way some negative (blindness or other poor eyesight, developmental delay, etc.) are treated as if they are a valid reason to just let preemies die.

Well, I'd say this: If your neighbor with the condition in question (blindness, cerebral palsy, developmental delay, etc.) was in a car wreck, would you tell the medics and EMTs and fire department to just leave them in the wrecked car and not bother saving them?

I think most people, when they think of somebody they know or have see or heard of with a diagnosable limitation, they don't wish the person dead or think their life isn't worth living. They need to be taught to look at the whole person and the whole potential.

A smart, ambitious quadriplegic has a better life than an able-bodied person with a bad attitude who never makes anything of himself. A cheerful, affectionate person with a severe developmental disability has a better life than a fretful, bitter, backbiting genius.

I realize I'm gong to have to resort sometimes to fictional characters to make a point, but:

Who would you rather be -- Mark Zupan (wheelchair rugby player featured in "Murderball") or O.J. Simpson? Which of these men would you rather have for a friend, relative, or neighbor?

Who would you rather be -- Tom Cullin from "The Stand", or Ted Bundy (serial murderer widely regarded as a genius)? Which of these men would you rather have for a friend, relative, or neighbor?

Who would you rather be -- Helen Keller or Aileen Wuornos (the prostitute who became a serial murderer)? Which of these women would you rather have as a friend, relative, or neighbor?

People need to stop valuing people's lives -- and assuming the people in question value their own lives -- based on some physical or mental characteristic.
Jan. 1st, 2009 03:17 pm (UTC)
Re: The preemies I know...
My observation is that a person can be both benacious and timid--tenacious in areas where tenacity will bring success and timid regarding things that involve risk.
Jan. 1st, 2009 03:09 pm (UTC)
Very interesting... Thanks for posting! The only experience I have with preemies is my time spent working summer programs for blind children. I saw kids with ROP who had varying levels of issues. The biggest being with orientation . This of course led to discussions of were the orientation issues caused by the ROP, or because you had a blind child who wasn't allowed to explore his/her environment. I would be inclined to say it was the ladder because I've seen plenty of kids without ROP who had orientation issues. I don't think coming up with a label to slap on all preemies with problems is a good idea. I think it has the potential to turn into the next ADD/ADHD. In other words If a child comes in who was a preemie and has problems then instead of taking the time to test and see if the child does in fact have problems that are related to prematurity the child would be automatically stamped with this label. I also agree with you point on intelligence... One of my good friends is a preemie and just finished his first semester of grad school at FSU with a 4.0 and is in the process of learning to speak Russian and has been quite successful in this quest. He's also one of the few people in his family with a college degree and I think the first to go to grad school. He's not blind, but does have CP as a result of being premature. Would you mind if I shared your post with him? I'd be interested to hear his opinion. OH yeah, I think labeling blindness as a severe disability is a bunch of hooey!I didn't mean to get so long winded... Sorry about that!
Jan. 1st, 2009 03:15 pm (UTC)
my post and other things
Hey. Don't worry about long-windedness. I actually hoped to generate discussion.

Please do share my post. It is public, so anyone can view. Comments from non-friends are screened--non-spam is approved.
Jan. 1st, 2009 03:35 pm (UTC)
Re: my post and other things
I honestly didn't notice that the post was public... Although, even if I'd noticed it was public I still would have probably asked for permission because I don't autimatically assume that just because something is public that it is meant to be shared... I've passed a link to your post along to my friend. His name is Ryan, and is his lj user name is historik.
Jan. 1st, 2009 05:23 pm (UTC)
Re: my post and other things
If I post public posts, please consider them meant to be shared. When I started my LJ, I intended for most of it to be public. As I gained a number of readers who became friends and also experienced some bumps in the road emotionally, I used the locked feature more liberally. One of my goals this year is to find a better balance. I liked who I was when I was posting public. I am not really a very insular person and don't have any desire to become that way, though I certainly need to maintain some appropriate boundaries regarding certain things.
Jan. 1st, 2009 05:36 pm (UTC)
Re: my post and other things
I understand the need for boundries... This is why there are subjects that I just don't discuss in my journal. I try to live by the philosophy that if I can't say it in public then it doesn't need to be said. There are however exceptions to this. Perhaps one day I'll learn how to do filters. I don't mind sharing things with people, however there are certain pieces of my past that I wouldn't feel comfortable sharing even in a post that was friends only!
Jan. 1st, 2009 03:52 pm (UTC)
wwell said. It reminds me a lot of my thoughts on septo optic dysplasia.
Jan. 1st, 2009 05:20 pm (UTC)
preemiehood and SOD
I often have that reaction when I read your posts on SOD. I think that this kind of sentiment is very common--I've heard people with retinoblastoma say similar things, particularly females who have been encouraged to go through genetic counseling. It Often they talk about it being important to understand how to live with what could happen, but they stress the importance of understanding that life isn't valued based on disability.
Jan. 1st, 2009 05:00 pm (UTC)
Hi..my name is Ryan. It's very interesting to hear other people's thoughts on prematurity. I was born 11 weeks early and was 2 lbs 9 oz at birth. I have Spastic Diplegic Cerebral Palsy.I'm almost completely independent with the exception of driving. It's better for those around me that I don't drive. Like the person who posted above I've always believed that people who are born premature are tenacious by nature because they've had to be. We overcome odds from the get go. I also understand though that there is a definite timidity in anything that involves risk which leads to an extremely(sometimes maddeningly so) drawn out decision making process. I'm in graduate school pursuing my MA in Russian and Eastern European Studies at Florida State. I really enjoy it. I'm especially enjoying learning Russian. I'm one of the healthiest people I know. I almost never get sick (unless I stand out in the rain to cheer on Florida State against Florida). Being born premature has definitely affected my life but I think it's for the better. It's help mold me into who I am but it doesn't define me.
Jan. 1st, 2009 05:17 pm (UTC)
Thanks for your comment. Would you mind if I friend you? I would be interested in learning about your experiences.

Preemies seem to run the gamut--some have quite fragile immune systems while others, like yourself, are extremely healthy. I have an autoimmune disease which likely is genetic, and I suspect that this is the source of my own fragile health.
Jan. 1st, 2009 05:38 pm (UTC)
Re: thanks
Absolutely not! May I friend you? Thanks for the entry! I loved reading it!
Jan. 1st, 2009 05:45 pm (UTC)
Re: thanks
Friend away. :)
Jan. 1st, 2009 05:49 pm (UTC)
Re: thanks
Jan. 1st, 2009 07:05 pm (UTC)
I too have been amazingly healthy which astounded my parents, relatives and doctors. I've never had surgery, except one failed eye surgery when a baby, never broken a bone, etc. I too agree on the tenaciousness/timidity factor. I think a lot of family issues are linked in with all of this too although I'm not sure how to put it into words. I should probably try to do that today in my journal so keep an eye out for the epic post of the last week.
Jan. 1st, 2009 08:09 pm (UTC)
Thanks for posting this!!! I couldn't agree with you more about the so-called preemie syndrome.
Jan. 1st, 2009 09:58 pm (UTC)
Similar topics are discussed on the CRS list I am on. I was born on time, not premature, but I found your topic an interesting read.There are ongoing study for CRS, all the late manifestations that can happen and what others are not related to CRS. It is an interesting read. Thanks for sharing your thoughts.
Jan. 1st, 2009 11:17 pm (UTC)
A Parents Point of View
I've started my comment and deleted it quite a few times. Do I have a right to post my thoughts on Sarah's blog, being that the post was clearly directed towards adult preemies? I'm not sure. But I honestly can't let my intense reaction (as a direct result of this post) live inside of me without saying my peace.

As the parent of a micropreemie, born 10 years ago, I am forever grateful for the statistics that are now published.

Let me tell you that I hope none of you ever have to understand what it is like to live in fear of getting your child taken away from you because a doctor is blaming YOU for the fact that she is failing to thrive. Failure to thrive is a common issue among preemies. But before the statistics demonstrated this, many parents, including myself, almost lost their children because doctors did not know and assumed that it was the parents fault. I just finished compiling research for a family who lost their children for this very reason.

Before statistics preemie parents were blamed for their child's gastrointestinal issues. If your child had chronic constipation (which is common among preemies) then you were told that you were not feeding them correctly. This happened to my husband and I on numerous occasions until the study was released showing the correlation between constipation and prematurity. She was finally placed on a medicine that helped. But, up until that point, my daughter suffered horribly, both with constipation and being put through multiple medical procedures that no person should have to endure.

Then there is the public school system. Assistance for students is funded based on the type of diagnosed issue your child currently has. No diagnosis.. good luck getting ALL of the services your child needs. Having a name for the group of common issues that preemies face would help children get assistance in school. Before I started homeschooling this year I spent most of my days at my daughters school where I helped children who did not qualify for services because their issues could not be checked off on a chart under any specific category. I did this without pay so these kids could get help. Almost all of them were preemies!

Now lets take a look at what many parents are told as their child is discharged from the NICU. Dear new mom and dad... yes, your child was born very premature but they should catch up to their peers by age 2 or 3. This is the most damaging statement that is told to parents. Why is it being told? Because there were no statistics to tell parents otherwise. Parents take their child home, attend the countless specialists appointments, watch as their child comes up on age 2 or 3 and does not catch up to their peers. Now these fragile parents are left to think they themselves have done something wrong.

I remember when some new research came out, quite a few years ago now, on the link between prematurity and mental health issues. I held that paper in my hands and cried. Was it because I was scared for what the future held for my child? Was it because the statistics were skewed? No. The impartial research helped me to know that my child's mental health issues were not my fault, but a direct result of her prematurity. And, after that release, doctors could no longer ignore the fact that a young child could indeed be afflicted with such a severe mental health issue.

I started my blog almost 2 years ago. Since that time I have received many private emails from former preemies who are happy to finally know more about themselves. How has this been possible for me to do... by statistics.

Finally, again speaking from the perspective of being a parent, behavior issues in preemies is a hard pill to swallow. Typical temper tantrums are not what some of us have dealt with. Watching your family and friends judge you because your child is not acting age appropriate in a situation is something that hurts. They hear all of the feel good stories about new born preemies and how they are expected to be just fine, and then they look at your child as the one who is in the minority. When in fact, it is the opposite. Having the research has helped in this area and having a named syndrome would help even more.

Jan. 2nd, 2009 12:25 am (UTC)
Re: A Parents Point of View
Hi, Stacy.

I'm glad you posted. Reading experiences like yours is part of what has educated me, and I'm glad you posted here. Please don't ever feel like you shouldn't! I'm glad that the studies have been a source of liberation and help to you. It is a positive use of information to get help for things that exist. I know you understand some of the reasons for my feelings about preemies who do well. Sadly, in some of my early discussions many years ago, the successful outcome of so many adult preemies was treated as a truly rare thing. I do suspect that there is a distinct difference in the fact that most of the preemies who are over 25 or 30 years old now were not micropreemies. However, the 1950s and 1960s studies were fairly pessimistic regarding outcomes and often did not mention positive outcomes. Of course, it ought to be a reasonable assumption that 1 60 percent rate of disability means that there is a 40 percent rate of quite positive outcome. But it is like presenting a diagnosis of legal blindness. A person who is legally blind still has a great degree of usable vision; but once the b word is mentioned the person often does not hear anything else. Once the negative outcome is read, the adult preemie has to work very hard to recognize the existence of positive outcomes--not miracles, just positive outcomes.
Jan. 1st, 2009 11:19 pm (UTC)
Parent of a Preemie

Having a named syndrome would not hurt a child's chances of getting treated for a medical or mental health issue. In fact it would help. The doctors would have a clear understanding of what a child MAY face as a direct result of their prematurity.

As for prematurity not defining you, I agree. I feel that it is a parents job to make sure that their child has all of the information needed in order to understand their medical and mental health. Encouraging your child to succeed, in spite of their challenges is a must. But, in order to be able to raise a premature child in the best possible way, a parent needs to be armed with straight forward information.

Sarah, you know how much I admire you and I am sorry if I have ever given you the impression that your prematurity defined you. I have turned to you, on many occasions, to get your input when thinking ahead in how Paige may feel when she is older. But, I respectfully disagree, with regard to raising a premature child, about your feelings on statistics and having a named syndrome. We, as parents, are struggling to be able to help our children because the medical world has not caught up with reality. Having accurate statistics is a must.
Jan. 2nd, 2009 12:14 am (UTC)
Re: Parent of a Preemie
[hugs] No offense taken. I understand why parents often feel so strongly about this. I've just been on the other side of it in having so many things blamed on prematurity that should have been investigated for other causes and potential treatments. It is such a balancing act; and my fear is that a syndrome definition would perpetuate problems and may not be used well even if there is a point to it.

I should note that none of this discussion means that I am opposed to having information available--you know this. I'm just very concerned with how it is used and presented, especially when I meet adult preemies who feel like freaks because they're actually doing very well. This really should never be.
Jan. 2nd, 2009 12:26 am (UTC)
Re: Parent of a Preemie
Btw, you have never made me feel defined by prematurity. [hugs]
Jan. 2nd, 2009 03:53 am (UTC)
I think that this is an extremely difficult issue no matter how you cut it. I don't like the idea of labels, but on the other hand, I prefer it to the idea that the general population has where all children catch up by age 2 and then are normal forever. Preemie births are so sensationalized that I think people often forget about the negatives.
Jan. 2nd, 2009 12:34 pm (UTC)
SusieV wrote"Preemie births are so sensationalized that I think people often forget about the negatives."

This is so true. The general population has only been exposed to all of the "miracle" stories they see on TV. I can't even begin to count how many pregnant women have said to me, "I'm so ready to be done with being pregnant. Who cares if I have a preemie. Look how good your child turned out." What my child, as well as many micropreemies, has gone through is her little life is more than most will ever go through in their entire life.
Aug. 9th, 2011 12:55 am (UTC)
I'm a few years late from the original post date, but I want to say
thank you" for making this public. I'm been trying to find adult preemie groups for a while, not even aware that they existed until a few lucky google searches tonight. Knowing that the groups exists now make me happier in the fact that I may be able to find some answers for my quirks.
Aug. 16th, 2011 04:11 pm (UTC)
thanks and preemie stuff
Thanks for posting. It's nice to get a comment on my public entries that isn't spam. LOL! You're welcome to friend me if you like--I have gone to doing mostly locked entries because of the spam content among other things.

There is a group on yahoogroups called former-preemies. I started it specifically to give preemies dealing with long-term issues a place to talk. Please join if you .ike.
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Sarah Blake LaRose
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