Why is the assumption so strong that the only reason for prenatal testing is a desire to abort imperfect babies? I wanted to separate dealing with a possible diagnosis of Down Syndrome, mourning the loss of my imagined child, from the birth of my actual child. Isn’t it okay just to want to find out?

I am strongly against abortion. It breaks my heart that so many children are killed because they have been diagnosed with Down Syndrome. But I would never want the option of knowing taken away from me. I’m so grateful to sort through my emotions in advance, and I’m more eager than ever to meet my son and rejoice in his birth.

Nick McGivney, Dublin Ireland

When the results came back with a problem where 85% of pregnancies end in stillbirth or miscarriage and 90% of those 700 or so born alive each year will not live to their first birthday, the perinatologist “recommended a D&C.” When I commented that my baby was still alive, he said, “If you know she is going to die anyway, does it really matter when?” I was horrified. YES. It does matter.

Our baby girl survived and defied so many dire predictions! She lived with us almost seven months before going home to Jesus’ comforting arms! We had 206 days to cuddle and snuggle. We had over six months to build memories of her with our (then) four-year-old son. Seven people accepted Christ’s invitation for a personal relationship at her Celebration of Life Service. Thousands of visits to our homepage and journal (since March 2004) attest to the fact that this tiny life had a purpose! She was here for a reason! Was she perfect physically? No. Had she lived, would she have been mentally agile? No. Could she love and understand love? I believe she did.

What is the measure by which we deem life “worth” keeping? Where is the scale we use to measure a life’s worthiness? Is it really up to us to make those calls? We chose to let God be God and determine the number of her days and we have been so blessed by the doing.

During this week where we pause and reflect on the sanctity of life, I wanted to add my two cents. Life is sacred. Period. Our little girl has forever changed my life. I will never be the same person I was before. I am a bit older, perhaps a bit wiser. While I had deeply held convictions before Audrey Grace came to stay for a while, they are now a part of my very being. Every life has a purpose. Every life has a reason for being. God doesn’t make mistakes. And through it all, I can say that God is Good, all the time.

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Keep informing people of the blessings that can be, even if life doesn’t turn out the way we expected :0)

I went through prenatal screening, never with the intention of termination. When I received a screen positive for trisomy 18, I was basically refused an amnio for two reasons: 1. baby looked good on sonogram, 2. I wouldn’t terminate anyway.

When I commented that I wanted to know because I would change my child’s birth to see him/her alive by having a c-section if the child had signs of trouble, I was told that with a trisomy 18 baby I would not be allowed to have a c-section or heroic after care for my baby. That was from the perinatologist.

When I shared my conversation with my OB, she agreed with me that even if I had a baby with a terminal condition, it was okay to plan the birth so I could see my baby alive.

Well, my baby was born and does not have trisomy 18 or any other trisomy/triploidy or apparent disability at this time. Still, in a moment, I was quite aware that my child’s life was not going to be valued if she was just different enough than some standard. I would not be allowed to birth my way, to attempt to see my baby alive, to try to keep my baby alive even if I had a rare trisomy 18 baby with a healthy enough body to be operated on.

This woke me up to the scary fact that some medical people don’t believe everyone has the same rights. Not everyone is being treated equally, especially parents and preborn children who have a “poor prenatal diagnosis.”

I write a small unpaid blog for babycenter.com. When I wrote about my screen results (mind you, no diagnosis, just screen results) I received from staff an email with links to their “termination for medical reasons” and “considering termination” bulletin boards. With the vast resources at their disposal, that is all I was pointed to from them…termination. It broke my heart.

I didn’t push my doctor for an amnio, figuring at least my baby could be monitored in labor (and was overmonitored if you ask me) and would be born by c-section if she was crashing. I also figured I might actually get heroic measures to save her if she had heart or lung problems, which might give me time to see her alive. I ended up not needing all of that.

No matter what child, or what my child’s body decided to do, I love my baby (and have since before I knew she was there). I sure wish all medical people could understand this kind of love, and could respect it.

if all options you mention would really be offered openly, without pushing and building up pressure for one way, I could agree with you. I do not think parents should be offered prenatal screening methods as a tool of selection, be it for Down Syndrome, for potential health risks or simply for the sex of the unborn child, like in China or India, but I could agree, maybe just for pragmatic reasons. ONLY the parents can make this decision.

But that is NOT the reality. Not here in Germany, and, as far as I know from other parents, not in the USA. Legally, of course, the screening itself is just an option that can be accepted or declined. But in reality, it is not presented as an option – it has become standard procedure, and every responsible woman should clearly make use of it. At the same time, the only possible consequence of a “positive” screening result is rarely mentioned. Of course it can only be abortion, as there is no way of “curing” or “repairing” anything.

Then, after such a diagnosis, again almost always only one option is presented (abortion), no contact to other parents with childs with DS is offered, and many doctors build up heavy pressure to terminate the pregnancy very quickly. Of course it HAS not to be like this, but unfortunately it IS the standard procedure. Abortion rates in Germany are usually about 90-95% after DS diagnosis – but at the same time we’ve seen several studies showing this rate decreased drastically whenever open consultation was offered and pressure for a quick decision was relieved.

Yes, pregnant women should make their own choices, including the possibility of abortion. But before they decide they should have the option to get ALL information available, the option to make contact to other parents who are (or have been) in a similar situation, the option to take the time they need to make a decision that will not be revocable for the rest of their life (be it for or against abortion).

Today, in many cases they simply do not have these options.

I’m hoping we can chat. Our organization is The Autism Acceptance Project at http://www.taaproject.com and my blog is The Joy of Autism at http://www.joyofautism.blogspot.com

Thanks for this article, which I will link to from my blog.

Estee Klar-Wolfond
Founder and Executive Director
The Autism Acceptance Project

Ralph Savarese