Saturday, October 4, 2008

Freedom of Choice

This article was posted by Tara Marie on her blog, and it strikes such a chord with me that I'm posting it here as well.

As I've said, I never had any of the prenatal screenings done with this last pregnancy, despite the fact that I was 40 years old. I did some of the prenatal screenings with previous pregnancies (but never amnio), mostly because I was under the care of an OB for those pregnancies and was strongly encouraged to do so. I don't think at any time that I underwent any of those screenings did I ever seriously entertain the possibility that something could be amiss with my baby . . . that's the kind of thing that happens to other people, right? So I did the screenings feeling pretty confident, and I carried that confidence one step further with this last pregnancy and decided to forego all prenatal screenings with the exception of a 20 week ultrasound. I really needed to know if I was going to have a boy or a girl, and I figured that any conditions the baby might have that would risk me out of having the home birth I was planning would show up on the 20 week ultrasound. My biggest fears during this last pregnancy were miscarriage (I've never had one and was really afraid that it was time for my luck to run out in that regard) and twins. I didn't miscarry and the u/s ruled out twins - as well as any visible anomolies - so I figured I was in the clear.

So it was quite a shock - and a devastating one - to find out after Finn was born that he has Down syndrome. Still, to this day, almost 3 months later, I frequently flash back in my mind to certain memorable moments during my pregnancy and I think to myself, " . . . and he had DS even then and I didn't know it."

I have very mixed feelings about prenatal screenings, given what I know now. I've had lots of people ask me, "Didn't you have an amnio?" or "Didn't you have any prenatal testing done?" And a lot of people seem surprised when I tell them that no, I didn't. And the truth is, I'm glad I didn't, and if I had it to do over again, I still wouldn't. What good would it have done to know beforehand that my baby had Down syndrome? I wouldn't have terminated, but it would certainly have made for a long, sad pregnancy and I doubt I would have gone into giving birth with a very positive outlook. And I very likely would have given up my home birth, which in turn would have ended up being a big regret.

However, there is definitely something to be said for being prepared for what lays ahead, and I think that's a good reason to have the screenings done - you know, if there is going to be a condition serious enough to require specialists to be on hand at the birth or something like that.

The thing is, I've always considered myself to be pro-choice . . . but in all honesty, I'm getting farther and farther away from that these days, as it relates to abortion at least (and I'm sure this will dismay some of my friends who read this). Here's a fact: 90% - that's NINETY PERCENT, folks - of prenatally diagnosed cases of DS end in voluntary abortion. While I totally understand how detrimental it could be to a baby to be carried by a mother against her will - and I certainly don't want to see us go back to the times of illegal, back-alley or do-it-yourself coathanger abortions - I really believe that this whole "right to choose" thing has gotten out of hand. People have become too choosy about the kind of baby they're willing to have. And I think that all the modern advances in prenatal screenings play a huge part in all of this - that and the doctors who advise - yes, that's right, advise! - abortion in these cases because they are in the dark about what life is really like with a child who has Down syndrome (did you know that? whatever happened to . . . and first, do no harm . . . ?).

It's profoundly sad to me that the vast majority of people would terminate a baby like Finn. No, I guess he's not what is considered the perfect specimen of a baby, but he's so sweet and I love him so much - it's impossible to imagine not wanting him.

I think the key is to humanize Down syndrome, to take the mystery out of it and make people aware of how life really is with a child who has Down syndrome . . . which is the intent of the Prenatally and Postnatally Diagnosed Conditions Awareness Act which recently passed (yayy!), of the Annual Buddy Walks, and even the 31 for 21 Blog Challenge - to raise awareness . . . to get the word out that life with DS doesn't suck. It's a variation of life . . . and what is "normal" anyway?

Here's the truth: finding out your baby has Down syndrome is devastating. It's shocking. You feel victimized and cheated. You grieve the baby you thought you were going to have. It's heartbreaking to deal with any medical issues your baby might have. The therapies necessary to help them achieve their potential can be overwhelming and exhausting. You have fears about tomorrow and next month and 10 years from now. It's not all a picnic, that's for sure. And no, it's not true that children and people with Down syndrome are always happy and carefree. Finn is definitely one of my more grumpy babies - I'm still waiting for the happy part to kick in.

But somewhere in there, you realize that your baby is just a baby - a sweet little baby just like any other. And you fall in love. And it's not too long before you hardly remember life before your baby, and you can hardly imagine life without him or her.


Tricia said...

Great post. Well said...I share your same thoughts about this subject. (And that's coming from a far-lefty.)

heather said...

What an amazing post! This needs to be published somewhere! I can relate so much to all that you wrote. Still not even sure how I ran across this blog in the beginning--but so glad I found it! :)

Karly said...

I am so very glad I never had testing either. Wonderful post.

Lis said...

This is a beautiful post Lisa. I wish the entire world could read it.

Chrystal said...

I continue to enjoy your writing.

Those questions are so, so offensive when you take the time to think about them. When someone asks, after you've welcomed a child with Ds, "Didn't you have an amnio/screening?" it's inferring that if you had, you wouldn't be in this situation. Like, you were irresponsible not to find out and then terminate.

Laurie said...

Yep. I totally agree. Very well said, Lisa.

Anonymous said...

I'm so proud -you, Lisa, are my daughter in law. I too wish the entire world could read this "Freedom of Choice" post. Your last touching lines, that you can hardly remember life before Finnian, or imagine life without him now, confirms for me(for the umpteenth time) your unconditional acceptance and love. Of course it all began with the love and gratitude you and Finn jointly felt and experienced while you carried him, whoever he might have turned out to be. Lucky Finn and mom to have eachother.


theresad said...

Beautifully written!