Wednesday, November 4, 2009

Loaded question—Prenatal testing

A student working on a project on Down syndrome in college posed a question yesterday on one of the forums I frequent.

What would you suggest for someone else who is going to have a baby? Would you suggest that they get the amniocentesis or any blood work directed towards finding any potential problems or was it just easier not to know?

And this was my response…  I know this is a controversial topic, but I wanted to share my perspective.

This is quite a loaded question, in most circles, but I'll answer as honestly as I can.  I didn't know prenatally and I'm very glad that I didn't.  For me, that is because my marriage was in a very fragile place, and if we'd have known this, I'm sure it would have been over before she even arrived.  I would not abort a baby for any reason, so when I was offered an amnio, there was no reason to do it and take any risk related to it. 

Even though we struggled with the first couple weeks of adjusting to all the news, I wouldn't trade that for the months of worry, unknown, fretting, etc, that I know would have come if we'd have known prenatally.  The time we had to adjust was helped in that we had a baby to hold and SEE and cuddle as we adjusted. She was "just a baby," not an unknown disability with problems and delays ahead of her.  That made ALL the difference, I firmly believe. 

I'm aware that not everyone handles this the same way, but I know without a doubt that we were blessed in not knowing, and every day since and because of her arrival, as well.

In an "ideal" situation, I'd love to see much less prenatal testing, because I do believe that the majority, by far, react to the information they are given based on that initial fear and emotion, and in doing so give up a child that they would love and treasure if they only had the chance to meet him.  If pregnant women could learn about DS, have the opportunity to read stories like those in Gifts and Gifts 2, as part of their education during pregnancy, then the "preparation" that so many desire would be there, and those who did not have a child with DS would be that much more aware of those they will encounter later on.  Increased awareness across the board, and inevitably more precious babies allowed to be born...seems win-win to me. :o)

I know we don't live in "ideal."   I also want to stipulate that I know that not EVERYONE who gets a prenatal diagnosis aborts, but the current stats, as recently as this week, still state that over 90% of those who DO know prenatally DO abort their babies.  But the truth is that in all our desire to know and be prepared we still can't know what our child will be like, we can't know their strengths, what they have to offer the world, and how they will bless the lives around them, even through struggles.  If the parents do not know prenatally, information can be found, adjustments can be made, all kinds of options are available, even if they feel unable to raise the baby.  BUT if they do know, and in doing so if they decide that the fear and unknown is too much and they decide to abort their baby, that decision can NOT be adjusted to, changed, or reversed. 

So to me, the benefit of knowing is not worth the very high cost of knowing.


  1. Very well said.

    I'd probably add that the original question ("Would you suggest that they get the amniocentesis or any blood work directed towards finding any potential problems or was it just easier not to know?") is too broad. An amnio is a definitive answer. The blood tests are not. I know I'm a little hypersensitive on the subject, but I feel like I had this false sense of security based on the blood tests.

  2. You know, I did not realize that I had the option to refuse, until my last pregnancy. When the dr. asked when I wanted to have to that done, I told him I did not want it at all. Why add more stress? Why? I know why, but I did not want to have another baby, so from my view point, I was not adding another stress to that pregnancy. I love her dearly and would not trade her life for anything, but I had a hard enough time adjusting to being pregnant AGAIN without someone telling me there was going to be more than what I was already dealing with. I REALLY HOPE THIS IS NOT OFFENSIVE! It is just me being honest. I was really thrilled that a friend of mine did not go on the grounds of genetic testing, because she was told her baby would have spina bifida and all that was "wrong" with her was a malformation of the ear. That's it! If she had decided to abort her child...UGH!

  3. The rest of the story is that I would never ever ever ever ever abort anyway! I would not, but the point is that people are given the DECISION and to decide on false pretenses is scary! My own mother had an abortion when she was very young and it haunted her for her entire life. I don't know how it is right to decide of your child is worth keeping. Ok, now I am getting into a HUGE can of worms and that is not why I responded to this blog, so I will grab the duct tape and place it neatly over my mouth!

    You don't have to publish either of my comments, if you think they are not right for others to read. I am fine with that.

  4. Cate--Thank you. I agree that the question is a little broad.

    MommaB--Wow...spina bifida to malformation of the ear. Amazing. And thanks for your comments! :)

  5. Perfectly stated and supported, of course.

  6. We didn't know Kayla had Down syndrome until her 2 week pediatrician appointment. Her pediatrician suspected it at the hospital but opted not to tell us (and instructed all the nurses not to tell us, either, which must have been awkward for them when we were joking around about her tongue sticking out all the time and her big toe gap). I'm forever grateful for his decision to do that, because we really got to know and fall in love with Kayla as a BABY. It must have been meant to be revealed to us that way. I don't know what I would have done had I known prenatally.

  7. Well said.
    I met a young man with DS at church last night in Hollister. He was telling me he is now in an independent-living situation and loves it. His will be 30 in Dec. I showed him Braska's pictures I carry. He said she is cute :o) Having Braska in our family has helped all of us realize how people with DS are just --- people. We are blessed.
    By the way, an amnio is not always correct. Some are told they have a child with DS; but when born, the child is normal. How would a mother like to find out she carried a "normal" child which she just killed because she received a false report?? What about the normal children who are injured during the amnio test? I remember one mother who was told her child was normal, and then she sued because the child had DS. Pitiful.

  8. This is something we have thought alot about in the last month. We just had our baby at the begining of October. He has Down's and we didn't know until he was born. I have been asked quite a few times if I was ever tested and I answer with "No, I didn't think that I needed to." Looking back, do I wish I did? Not really, I know I would have been so stressed out and that wouldn't have been good for the baby. When he was diagonosed, it was hard to hear but we had a wonderful baby to soften the blow. He is a beautiful baby and we are blessed to have him, Down's and all!


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