Tuesday, October 25, 2011

Day 25: MaterniT21

Really, I don't have much of anything today.  Whew!  Coming so close to the end!  I know the focus should be on topics about Down syndrome this month, but I've had to stray from time to time.  I'd love to go into my thoughts on the new prenatal test for Ds, but I think I just don't have the time to give it any real thought today. 

Oh, what the heck.

Marketing.

That's what it boils down to.  Marketing.  It's not so much that the test exists, but it's whether or not it's being presented in a positive or negative light.  I honestly haven't read too much about it, and don't want to be accused of being one of those people who is voicing a big opinion based on hearsay, but just the name of the test itself is leaving a really bad taste in my mouth. 

MaterniT21

Oh, lord, how awful!  It's targeting, directly, Down syndrome, right there in the title (is that seriously what it's called?  I've been too chicken to read most of the articles about it...).  And just the word maternity, implies the warm, fuzzy feeling of motherhood, of maternal instincts.  It's like seeing a big round sign with a picture of 3 chromosomes in it, with a great big red slash through the middle.  No T21.  And while they'll probably all say that it's ostensibly to help people prepare for a child with a diagnosis of Down syndrome, we all know what it's really about...to let people know that they can pursue termination of the pregnancy. 

Termination.

I know not all pregnant women would do that - there are still those who value the life they're bringing into the world, but with a current statistic of approximately 90% of prenatally diagnosed T21 pregnancies ending in termination, there's the absolute guarantee that that number will increase to nearly 95-98%.  Or more. 

I'm heartsick.  To think of all the amazing, positive strides that have been made in the last 20 years to make the world a better place for our chromosomally-enhanced children to grow up in, to make them more accepted and visible, what happens when they cease to exist?  Will they suddenly become pariahs?  Be looked down upon as the ones that were unfortunate enough to have been born, having been born before that miracle test

Oh, poor dears, and their poor, poor families.  So unlucky...

I don't want us to be taking steps in the wrong direction, but I feel a shift is coming.  We'll have to fight harder to be seen and heard.  To let people know that our children have a right to be here, to be part of society.  I think it's going to be more important than ever to get to the medical professionals and educate them - the OBs, the GYNs, the geneticists and reproductive endocrinologists, the midwives... We've got to help teach them how to give full information to their patients, not just to give them the easy way out. 

Ugh, too much to say about this.  I'll end with that.  I'm frustrated.  I hope...just hope... that people are smarter than this.  But I think I know better.

(Okay, here's a random old photo of Samantha, taken when she was about 8 months old)

8 comments:

The Annessa Family said...

When I think about the reality that I could have missed out on my brother...it absolutely makes me sick. And not just missing him, but the beautiful community he has forever made me a part of.

The last time I checked, terminating lives because they are not "perfect" by societies standards was called eugenics...and I'm pretty sure we as a society made a big fuss and said "We'd never let that happen again".

Brooke
www.TheAnnessaFamily.blogspot.com

Jenny said...

A perfect post! This test is just sad...And the name of the test turns my stomach...I hate thinking about it :(

On a lighter note, Sammi had fabulous hair from day one!! What a cutie!

Crazy Beautiful Love said...

Obamacare is awful! I am so sad for our world and our kids. Sometimes I have to just not think about it.
-erin

Anna Theurer said...

I am frustrated too. All of this money that was spent to develop such a test that targets Ds specifically is horrible. The money should have gone towards education and whatnot. How about we develop a test to determine if your child will need braces. Or ear tubes. I know not everyone with a prenatal diagnoses will abort, but come on! I am starting to feel like this test is a vehicle for genocide.

Rochelle said...

Right there with you. We have to keep on advocating. This test is horrible. Just one more reason for people to consider abortion. Ugh! Oh the blessings they will miss.

Team Lando said...

I have such mixed opinions. Here are some strong ones: The name of the test is the worst name EVER. And it should NOT be used for termination.

Personally, I would take the test, though. I'm glad I knew prenatally, and CVS was just awful.

Here's why I'd take it. Because of continuous monitoring during my pregnancy and induction (as in, I couldn't get up AT ALL once induced) we knew Ellie was in distress so I could have a c-section. I just wish the test were marked differently and used for detection, preparation, plans for fetal echos, etc.

doozee said...

You nailed it, Becca- love this post and your take on it all (as usual!).

Melissa said...

I'm very up in the air about this test too. I love that the knowledge is available without an invasive test. But I know that the already sky high termination rate of our kids will increase, and that breaks my heart.

A lot, ok most, of the problem with this test is going to be the bias of the doctors recommending it. When we were just in for an ultrasound and echo for new baby it was offered to us. We declined. And the doctor went on to offer an amnio. Whaaa? Seriously, I just declined a non-invasive blood test, and now you think I'll let you stick a needle in my belly? Grrr!