Thursday, June 16, 2011

New Blood Test

Have you heard about the new blood test for pregnant mothers to see if they are carrying a baby with Down syndrome? It analyzes DNA material from the fetus circulating in the mother's blood (and while I've read it is supposed to be 100% accurate, The British Medical Journal reports that it mistakenly found Down syndrome in 2% of pregnancies when the child actually did not have it). The big issue is the impact a test like this would have on termination rates, but there is another impact that all of this has on those of us who have children with Down syndrome. I think you'll pick up on it when you watch this video.

Click here for an interesting video on the subject and how it is affecting New Zealand. It is fifteen minutes long but well worth it if you are interested. I had a little trouble loading the video, but it did end up working (I had to switch to a lower speed). I'd love to hear your thoughts on it.


Jenny said...

Excellent video!!! Any way you look at it this test is targeting a specific group of people for termination. And at what point do we stop? Do we then test to see if a child will have a learning disability, seizures, if they are gay?
And just like someone said in the video that's exactly what happened in Germany in WW2. People deciding who will be accepted in society and who we should get rid of.
I have mixed feelings about the test, as someone who found out after my baby was born about the Ds I often wonder if I would have been better off knowing prenatally...If there is a test that can determine that is it a good thing or bad??
I think it comes down to a persons morals...Would you have it in you to kill an unborn child? For people who would never consider abortion this test wont change that...But for people who would, who are most likely uneducated about Ds, I think this test would be used for all the wrong reasons.
Overall this "screening" test, gives me a bad feeling.

C-Tay said...

ughh, my computer did a restart in the middle of my typing ... let's see if I can remember it all *it was long!!*

First, I remember my doctor asking me, "do you want an amniocentesis?" and my answer was "it doesn't matter, we'd keep the baby regardless." He was happy to hear that - of course I'd be worried if he wasn't or was happy if I did and wanted to terminate!!

Second, I think you could agree with me on this one, but anyone would be scared to find out this information, before or after birth. Getting the information prior would give you time to get things setup for when your baby arrives and be prepared, but it comes down to the fact that the parent has to take charge and learn about DS.

Third, I think that's what it really is, we're unprepared and not knowledgeable (that doesn't sound right, but can't think of how else to describe it, but I think you get the picture) about DS. I think it's the way with any kind of change - we as human are scared of the difference ... in people, a place, or anything really. Just look at our history, anytime someone new came about, we'd "fight" against it. If it isn't the "norm" we don't want it. It comes down to one thing - we're a selfish, flawed people ... aka we're sinners.

Fourth, why is this even a choice? We don't have screenings for any other disabilities. Of course, I understand there is no technology developed for that (yet), but what happens when it is. Will we kill off all Autistic children? Any one with an LD or BD? Why are DS children the exception - because the parent doesn't want to "deal" with it? Unacceptable!

C-Tay said...

Had to break it up so here's the rest of it ... lol

Fifth, the reporter asked the father of the little girl "if a woman found out she was pregnant with a DS child and said 'I respect your views, but I don't want to.'" My response would be two-fold. First, you got yourself to this position (pregnancy), whether you wanted it or not, it's you duty as a mother and a human to take responsibility. Second, if you do some research and still feel unprepared DO NOT slaughter your baby, give it up for adoption. Life, even if it's not with a birth parent, is better than no life at all. (Of course, then you have all those arguments about the system and adoption being a bad thing because of it ...)

Sixth, I don't understand how a woman can live with herself knowing that she killed her own child. There's a lady in my church who had an abortion before having her three current children - she regrets it everyday. I know I would not want to be walking around with a blood guilt as heavy as that.

Seventh, I find it sad that we have taken the idea of Darwinism into our own hands. It saddens me even more that as one of the families stated "the gov't has taken it into their own hands, to save money." Is this what we have come to as a people? If so, God send a flood! LOL But seriously, it's heartbreaking.

Eighth, the doctor is pro-screening - I would be too IF and only if abortion wasn't an option. I think screening could be a good thing to help the parents prepare especially if it's 100% correct, but that's the thing, the parents need to prepare. Amniocentesis wasn't 100% correct and could cause issues for the fetus - why put yourself in that position? I just don't understand it.

Closing thoughts, I think that the screening is positive if it's used correctly and not for an end means of killing. I think it's positive because it doesn't harm the mother or fetus. Unfortunately, I don't think we as humans are capable of handling this kind of power correctly and for good.

Now, I do have a question - educate me :) - is Alex a "high-functioning" DS person? I know you have talked about the fact that there isn't levels to it, but he seems like he is more like a regular person except for his speech and looks. Does it matter the kind of intervention taken and how early it starts? Or is it all genetic and however it's in their DNA is how they will be?

Ahhhaha, so sorry for my essay, but you lit a fire in me! :)


April Vernon said...

Great thoughts, Ladies!

I agree with your comments. I, too, wonder what all this testing would be like if there were other conditions that a pregnant woman could find out about before giving birth.

I heard someone say that fighting for the rights of people with special needs is the next civil right movement and can certainly see the similarities.

Thanks for all of your thoughts. I can tell this really got to you! I am so glad your doctor was understanding when you didn't want the testing. Mine was, too. I have heard of many people not only being pressured to get the test but also feeling like their doctor was strongly recommending (or immediately assuming the mother would want) an abortion when the tests were positive.

I don't know if having knowledge of Levi's condition beforehand would've been helpful or not. I think what has made this easy on us is that we knew we'd love & care for whatever kind of child God gave us. THAT is what would help people "deal" with having a "special" child. So many parents never seem to get over the disappointment. I could've given birth to a child with any number of conditions (and quite frankly feel like we hit the jackpot with what we got in that regard). I always hear people say to pregnant women (when discussing if they want a boy or a girl), "As long as it's healthy..." Really? What does that say about babies that are NOT born healthy and perfect? I think way too many people EXPECT a child with no issues and when you go into it with that expectation, you could possibly end up pretty disappointed. People have kids with conditions that don't even show up until their kids are in school, so I think being prepared to accept whatever your child develops or is born with is the real key, not foreknowledge of what those characteristics will be.

As far as your "high-functioning" question. I don't know if I can really speak to that or not. Yes, I think early intervention and high expectations make a positive difference, but Levi's Down syndrome will be noticeable in his physical features and possibly some of his speech patterns no matter what we do to help him. (Many people look to Corky from "Life Goes On" as an example of a highly successful person with Ds, but his features and speech leave no question about the fact that he has Ds. Can I affect Levi's IQ? I don't know. I have read that an IQ of 80 is about the highest to expect, but I just don't know if I can influence that are not. It is a struggle to know what to accept and what to work towards changing.