Mar 312007
 

This is my post in the Just Post roundtable series. I have installed the button in my sidebar but it won’t function until March 10th or so. Right now you’re not too late to join us. If you’re interested, click on the button below.

justpostmar2007

When I was pregnant with my son the pregnancy was deemed high-risk. And do you know why? Because of the simple fact that I got pregnant in the year that I turned 35. Thirty-five. Had I been pregnant one year earlier it wouldn’t have been considered risky at all.

So what? Because everything went well. But I didn’t know that when my doctor advised me to get an amniocentesis. Because you know older women have a higher risk of having a handicapped child. (By the way, after my first post about “handicapped” people I realized that the term is not political correct. I’m sorry but I don’t know what to write instead. “Special needs” seems a little ridiculous.)

To me this decision was a no-brainer. Have my belly punctured with a needle? To find out more about my baby? Are you nuts?

Apparently the rest of the world thought I was the nutty one. Everybody had an opinion on this. Of course I should do it. What if I had a handicapped child? Indeed, what if? I knew that I would have kept the baby anyway. And what if the amnio hurt the baby? I’ll give you the math: the risk of having a baby with a chromosome defect for women age 35 to 37 is 1.6%. The risk of losing the baby through the amnio is about 1%. (It is less than 1% if made by a specialist.) In my world that means that the risk of having a baby with a chromosome defect is only slightly more probable than losing the baby through the amnio.

But that’s not all. A factor to be considered is also what one would do if the baby were “defective”. (And this is why I think that this is a social issue not only a personal story.) If there had been anything wrong with my baby there would have been considerable pressure not to have it. I think that knowing that one will have a special needs child is stressful enough without people telling you that you’re doing a disservice to society by having it. If I had gotten pregnant just a couple of months earlier no one would have tried to persuade me to be punctured by needles. (Sorry, but this picture was just horrible to me and still is.)

What I did do was let them make a very big and detailed ultrasound. I was okay with that because I knew that it wouldn’t hurt my baby. And I knew that I would have kept it anyway. Don’t get me wrong, I’m totally pro-choice, only my own baby already was a human being to me when it was just a tiny clump of cells.

While I was making that decision I met with the overpowering opinion of almost everyone I met (apart from one friend) that if the baby were handicapped his life wouldn’t be worth living. That it would be better off not to be born. And of course that handicapped people are expensive.

I was flabbergasted. You know, most people aren’t born handicapped. There are only a few things that can be seen in pre-natal diagnostics. And what if something went wrong when it was born and it ended up with spasticity? What if it had a rare gene defect like muscular dystrophy that you won’t see until a few years later? What if my baby were already a toddler and then almost drowned or had an accident and ended up different than before? Would those same people think his life not worth living then? I don’t think they would tell me though, even if they thought so.

As I have told before there are a lot of people who secretly think that handicapped people should be put away so that they don’t bother the others. And that surely there shouldn’t be money spend on their education since there isn’t enough for us normal people anyway. This makes me very, very angry.

Because that indicates that this is something that can’t happen to us. That if your child is deemed healthy and “normal” you’re destined for the happily-every-after-ending to your life. When your mother was punctured and diagnosed then nothing can ever happen to you. Nobody will ever have an accident, nobody will catch a disease, nobody will ever be old an feeble. Of course you will go through life with a right to stay youthful and strong and healthy. And then maybe die in your sleep at age 101.

I have the feeling that all this fuss about pre-natal diagnostics (and from what I hear German’s pregnant women are more thoroughly diagnosed than US ones.) is so that everybody has a feeling of being insured against, well, life.

Addendum: I just saw Jenn Satterwhite’s post on “Teaching understanding of disabilites in elementary school” on BlogHer and wanted to point you towards it.

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  26 Responses to “Just Post for March”

  1. oh…wow. we had a similar thing… while i was only 34, the genetic tests came back for downs. we were pushed to do the amnio, to know, to rule it out. so we could make decisions. but we alreeady knew what our decision was and dug our heels in the sand.

    we didn’t do it. we decided if that was the case we’d have plenty of time to read all about it and figure out what to do then, so we didn’t do anything and when M was born, we had to wait two more weeks for it to be ruled out.

    lovely post.

  2. oh…wow. we had a similar thing… while i was only 34, the genetic tests came back for downs. we were pushed to do the amnio, to know, to rule it out. so we could make decisions. but we alreeady knew what our decision was and dug our heels in the sand.

    we didn’t do it. we decided if that was the case we’d have plenty of time to read all about it and figure out what to do then, so we didn’t do anything and when M was born, we had to wait two more weeks for it to be ruled out.

    lovely post.

  3. heh. notice i said only 34…because the vastness in difference between 34 and 35 is well, vast….

  4. heh. notice i said only 34…because the vastness in difference between 34 and 35 is well, vast….

  5. I had my first child when I was 33 and my second child at 38. So, I crossed the line, between the one pregnancy and the other. My gynaecologist offered an amino each time. It might sound crazy, but my wish to protect my child was equally strong during both of the pregnancies, and I felt the outcome of an amino would only be to prepare myself in case my child had one of the deficiencies tested. So, I decided not to have an amino. Still, I have known women, and I have accompanied women friends, during amino examinations. And, thank heavens women can have such procedures and, thank heavens women can decide to have other procedures. There are many countries where women cannot visit anyone but a general practitioner before they give birth.

  6. I had my first child when I was 33 and my second child at 38. So, I crossed the line, between the one pregnancy and the other. My gynaecologist offered an amino each time. It might sound crazy, but my wish to protect my child was equally strong during both of the pregnancies, and I felt the outcome of an amino would only be to prepare myself in case my child had one of the deficiencies tested. So, I decided not to have an amino. Still, I have known women, and I have accompanied women friends, during amino examinations. And, thank heavens women can have such procedures and, thank heavens women can decide to have other procedures. There are many countries where women cannot visit anyone but a general practitioner before they give birth.

  7. It’s disgraceful that anyone would tell you what you should do about amnio or no-amnio, and also to tell you what to do as a result.

    I was a spring chicken of 33 when i had my baby, so i didn’t have to deal with this.

  8. It’s disgraceful that anyone would tell you what you should do about amnio or no-amnio, and also to tell you what to do as a result.

    I was a spring chicken of 33 when i had my baby, so i didn’t have to deal with this.

  9. Wonderful post!

  10. Wonderful post!

  11. Hey, we’re a club of “old” mothers!

    I is right, thank heaven that women can have those procedures. And of course there are women out there who can’t afford any medical help at all.

    What I don’t like is that nobody tells you about stories like Jen’s who was told that her child would have downs. And then she hadn’t.

    And yeah, the difference between 34 and 35 is vast.

    So Meno, spring chicken, now I know your age…

    Thanks dayngr.

  12. Hey, we’re a club of “old” mothers!

    I is right, thank heaven that women can have those procedures. And of course there are women out there who can’t afford any medical help at all.

    What I don’t like is that nobody tells you about stories like Jen’s who was told that her child would have downs. And then she hadn’t.

    And yeah, the difference between 34 and 35 is vast.

    So Meno, spring chicken, now I know your age…

    Thanks dayngr.

  13. Resonating post.

    People like you, no matter what, would give any child- challenged or not- love to grow on. And this sounds like such the right decision to me.

    Sadly, I don’t think everyone has the capacity. Sadly.

  14. Resonating post.

    People like you, no matter what, would give any child- challenged or not- love to grow on. And this sounds like such the right decision to me.

    Sadly, I don’t think everyone has the capacity. Sadly.

  15. I felt the same way you did – the risk of amnio was too great. We didn’t have one either time.

    When I was pregnant with Lorenzo, we found out I’m a carrier for cystic fibrosis. They wanted to test Tony in a hurry because we were fast approaching 20 or 22 weeks, after which it is illegal to terminate. And yes, there would have been a lot of pressure to terminate.

    So he didn’t go in for the test. And didn’t go in and didn’t go in. I became mad because it was time to give birth and we couldn’t have him at the local hospital if he was going to have CF. Finally, Tony had the blood test and it was ruled out. Thank God.

    As far as Jen’s case goes, I personally know A LOT of women whose fetuses tested positive on the initial tests and the babies turned out not to have any genetic abnormalities (that we know of!).

    I have wavered a lot on the subject of genetic testing. I think it’s important and we need to participate so that the science can progress, but currently there are so many unknowns that it causes additional stress for nothing.

  16. I felt the same way you did – the risk of amnio was too great. We didn’t have one either time.

    When I was pregnant with Lorenzo, we found out I’m a carrier for cystic fibrosis. They wanted to test Tony in a hurry because we were fast approaching 20 or 22 weeks, after which it is illegal to terminate. And yes, there would have been a lot of pressure to terminate.

    So he didn’t go in for the test. And didn’t go in and didn’t go in. I became mad because it was time to give birth and we couldn’t have him at the local hospital if he was going to have CF. Finally, Tony had the blood test and it was ruled out. Thank God.

    As far as Jen’s case goes, I personally know A LOT of women whose fetuses tested positive on the initial tests and the babies turned out not to have any genetic abnormalities (that we know of!).

    I have wavered a lot on the subject of genetic testing. I think it’s important and we need to participate so that the science can progress, but currently there are so many unknowns that it causes additional stress for nothing.

  17. I was a total weirdo. I had amnio with all three–I was 29, 31, and 35. I would have had a zipper put in and taken them out for a check up every week if they would have let me. I was just paranoid as hell. Would I have terminated the pregnancy if something was wrong? Depends on what it was. I was just really lucky, I guess, and I knew that they couldn’t diagnose all of the potential downfalls of parenthood with a test. Still, the control freak in me wanted to know every detail I could about my kids. Boy, was I naive!!!
    The sadness in all of this, to me, is the idea that we can control for every potential tragedy. That there is something or someone to blame for “imperfection”. That somehow we should be able to erradicate discomfort and disability from our lives. Sounds good in theory, but in reality I would rather see us spend the money that we waste by pushing amnio on “high risk” moms on things like car seats and health insurance for low income families.
    great post….

  18. I was a total weirdo. I had amnio with all three–I was 29, 31, and 35. I would have had a zipper put in and taken them out for a check up every week if they would have let me. I was just paranoid as hell. Would I have terminated the pregnancy if something was wrong? Depends on what it was. I was just really lucky, I guess, and I knew that they couldn’t diagnose all of the potential downfalls of parenthood with a test. Still, the control freak in me wanted to know every detail I could about my kids. Boy, was I naive!!!
    The sadness in all of this, to me, is the idea that we can control for every potential tragedy. That there is something or someone to blame for “imperfection”. That somehow we should be able to erradicate discomfort and disability from our lives. Sounds good in theory, but in reality I would rather see us spend the money that we waste by pushing amnio on “high risk” moms on things like car seats and health insurance for low income families.
    great post….

  19. We’ve chosen to forgoe genetic testing with each of our three pregnancies, and we faced a lot of medical opposition for that decision – even with our stated position that we would not terminate a pregnancy for any reason and even with the medical facts of our low risk, under-35 pregnancies.
    Powerful post.

  20. We’ve chosen to forgoe genetic testing with each of our three pregnancies, and we faced a lot of medical opposition for that decision – even with our stated position that we would not terminate a pregnancy for any reason and even with the medical facts of our low risk, under-35 pregnancies.
    Powerful post.

  21. well, this wasn’t an issue for me because I was 25 and 28 while pregnant. that said, I still was pressured to have the triple screen and by the time Toodles came along it was a ‘quad’ screen blood test. I just told my OB/Gyn that I had no interest in knowing. What would it change? Well, for me, nothing. D’s tests were without incident, and I still spend 2 days a week at rehab services of our hospital in therapies for him. Life happens. And I’ve gotten to the point that it doesn’t matter what the diagnosis is, you just deal with it. Each day I have a small boy who tells me he has “blue eyes like a river” is a good one no matter how many tears I’ve shed over making educational and health decisions for him.

  22. well, this wasn’t an issue for me because I was 25 and 28 while pregnant. that said, I still was pressured to have the triple screen and by the time Toodles came along it was a ‘quad’ screen blood test. I just told my OB/Gyn that I had no interest in knowing. What would it change? Well, for me, nothing. D’s tests were without incident, and I still spend 2 days a week at rehab services of our hospital in therapies for him. Life happens. And I’ve gotten to the point that it doesn’t matter what the diagnosis is, you just deal with it. Each day I have a small boy who tells me he has “blue eyes like a river” is a good one no matter how many tears I’ve shed over making educational and health decisions for him.

  23. Wonderful post. I was 26 when I got pregnant, but we were offered the pre-screening bloodtests, etc, and my reason for turning them down was the same as yours.

    It makes me angry that there is a perception that people who have special needs are a drain and that ANYONE would question a mother’s decision about something like that.

  24. Wonderful post. I was 26 when I got pregnant, but we were offered the pre-screening bloodtests, etc, and my reason for turning them down was the same as yours.

    It makes me angry that there is a perception that people who have special needs are a drain and that ANYONE would question a mother’s decision about something like that.

  25. Reading this post, quite literally, gave me chills.

    And then I read Jen’s comment and got chills again.

    Thanks for writing this. It needs to be said again and again.

  26. Reading this post, quite literally, gave me chills.

    And then I read Jen’s comment and got chills again.

    Thanks for writing this. It needs to be said again and again.

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