The Purpose of this Blog

The goal of this blog is to provide education and bring about higher awareness about Down syndrome. It is to share that life with Down syndrome (DS) is not scary, horrible, or to be feared.

My experience comes from raising my daughter, Nebraska Larae (Braska), born November 2006 with Down syndrome.
The posts on this blog are related in some way to life with DS or disability, and they are reposted here from my other family blogs. There are links to those blogs in the margin on the right side of this blog if you would like to visit them directly.

Thank you for coming by.

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.


Momma B said...

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!

Momma B said...

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.