Tuesday, February 24, 2009

New Prenatal Testing

New Prenatal Testing. I got this from Megan while reading her blog today, thanks Megan!

Well, here you go, read it and take from it what you want. It makes me sad honestly. Is Down syndrome so bad people, that we have to target it and come up with the earliest test possible so women can have plenty of time to abort and not feel as bad about it? Yep, I'm saying it, this is my blog and my baby and this is how I feel. I'm sure this will be great news for many but for people in my shoes it's kind of a slap in the face, quite honestly.

And the line about more time to plan- do you really need 7 months to prepare?? I realize it takes some people longer to grieve or get used to the idea that their baby will have DS but I also feel the earlier you find out the bigger the temptation is to just end it. I just don't see why they are targeting DS. I think that is my biggest issue here. Again, I take it personally like my little Bennett isn't good enough and his life isn't worth living- seriously, that makes me cry.

I've copied a few key sentences italicised from the article:
New Safety, New Concerns In Tests for Down Syndrome
By Rob Stein ,Washington Post Staff Writer,Tuesday, February 24, 2009; A01

Several experts agreed that the Sequenom test and others in development show great promise, potentially offering women either an earlier chance to end a pregnancy or more time to prepare for caring for a child with disabilities.

"We have a history in this country of a eugenics movement where people tried to eliminate certain people from the gene pool," said Andrew J. Imparato of the American Association of People With Disabilities. "People could start wondering, 'How did you get born?' "

Advocates worry that such tests could increase the number of women getting inaccurate information that makes life for people with Down syndrome and their families sound worse than it really is.
"We have a nation of physicians who are unprepared for explaining a diagnosis of Down syndrome," said Brian Skotko, a physician at Children's Hospital in Boston who works with the National Down Syndrome Society. "Many overemphasize the negative consequences or outright urge women to terminate their pregnancies."

Skotko, whose sister has Down syndrome, predicted such tests would result in fewer babies being born with the condition.

"Every day my sister teaches me lots of life lessons -- to laugh when others are mocking me, to keep on trying when obstacles are thrown my way," he said. "If there were a world with fewer people with Down syndrome, I think the world would miss all these important lessons."

Wow, I wish this were Bennett's doctor! Not that we have bad doctors but to have an advocate as your doctor would be really nice.

Again, I don't want this blog to be about pro-choice or pro-life. This blog is about my family and our life and now we obviously will have Bennett in our lives and you better believe I am going to be an advocate for my child. This is about Down syndrome and hopefully showing people that just because you may look a little different or act a little different shouldn't make you less desirable as someones son, daughter, brother, sister, grandson, granddaughter or friend. I hope and pray that my girls will learn this from their brother, to never "judge a book by it's cover!" And again, I'm not sitting here judging others that may have made a choice to abort a baby with DS- it's not my place to judge- do I like it? No, but that doesn't mean I hold something against people that have done this. I just hope by me blogging about my experiences on this whole journey, maybe someone will see that, maybe it's not that bad. Maybe having the "perfect" baby isn't all about being the smartest, prettiest, best athlete, coolest, maybe it's about giving someone the opportunity, whether we think or assume it can happen or not to show us what they can become or what they can overcome.


  1. Adrienne,

    I wanted to reply to your post on your blog. It's hit or miss if I can get the word verification box to pop up with the letters in it, and today was a miss. :-) So, here's my comment:

    And maybe we need to take a closer look at how we define "smartest", "prettiest", "coolest", etc. Honestly, our whole society is skewed. Guess I figure we're lucky that we've been granted the gift of escaping from those misconceptions.
    Megan-Audrey and Stella's playground

  2. "Smartest", "prettiest", and "coolest"...now personally I believe that we define those parameters in our hearts, and no doubt, that Bennett will be the smartest, most handsome, and coolest in so many hearts! You are a wonderful mom in giving the opportunity for so many experiences to your little ones and Bennett will know nothing but love. No baby is perfect-each is perfectly made for their parents. :)

  3. This subject is obviously close to all our hearts (mothers of children with Down syndrome) because in a way, it is as if the majority of the world is telling us that our children are not worthy of our love (never mind of life!).
    It is definitely OK to have an opinion and to become an advocate. I think that so many more women would make a different choice if they are given accurate information. With newer, faster, safer, and easier pre-natal testing should come a law prescribing that accurate information be given about Down syndrome (not the outdated, negative and sometimes downright false information that is given out now).
    That's all I ask - give every woman the information she needs to make an informed decision.

  4. Hi,
    I just found your blog and wanted to stop by and say hi. My son Leo is 4 and has Ds, we did not know prenatally. I also have a daughter who is 19 months. I'm looking forward to reading more of your blog. You have a beautiful family and Bennett is one lucky guy to have such a brave and strong mommy/family.
    All the best to you!

  5. Adrienne, you impress and inspire me. I love how strong your voice is already as an advocate for Bennett... who is 91 days away from being born. What an amazing mom and family he will have. Your daughters will be stronger, more sensitive people for having Bennett in their lives...his life will teach them so many life lessons and grow their hearts 10 times their size.

    I love to read your blog and am so glad to walk this "road" with you via your posts... I actually gave you an award on my blog, that I received from Bethany who received it from Megan...who you mention in your post.....oh how funny and small this blog world is!

    Have a great day!

  6. Adrienne, I am glad you said it. I just did a post on the value of a child with DS, and, in a different way, I said it too :-)

    That test bothers me because I think it's true that the earlier someone is in the pregnancy, the easier it is to terminate and "try again". Our children are literally part of a dying breed because of ignorance and fear.

  7. I've been thinking about that test. A very close friend of mine chose to abort her child who was diagnosed with Down syndrome. I remember when she had the amnio she was already 16 weeks along and by the time the results came back and were retested to be sure, she was at about 18 1/2 weeks. The doctors told her how horrible her life was going to be and how unfair this would be to her other children, etc etc. Then they told her she only had a couple of days to decide because she was nearing the legal cutoff for an abortion in NY state. I wonder if she had been given the extra time to get past the initial shock and sorrow, time do research, maybe talk to some moms who have children with DS, or even found this online community would she have maybe made a different decision...?

    If this test gives parents more time to think it over, maybe it could end up being a good thing.

  8. The above post by Unknown Contributor made a GREAT point that I hadn't thought of. I really think that if mom's facing a prenatal diagnosis would just talk to parents, or visit a DS forum, they would get a whole other viewpoint about what the diagnosis means and think twice before aborting. So yeah, maybe this test will actually give parents more time to weigh their options, I don't know.
    I feel really, really sad for women who have terminated pregnacies just for trisomy 21. I can't help but think about what they've missed when I look at my precious, beautiful baby boy.
    Stephanie (From bcc)

  9. I just came across your blog through a link on babycenter. I wanted to let you know that I had a prenatal diagnosis and my daughter Emily (also my third child and third girl)is now 20 months old. This is still such a hard topic for me and I'm trying to become active in a program in our area (Washington, DC) called Changing Lives where they have parents talk to medical students, doctors, etc. to tell them what life is really like and things to say/not say when delivering a diagnosis. Like many here I feel that everyone has to the make the choice that is best for their family but it should be a true choice...not a forgone conclusion. I wish you all the best of luck with the rest of your pregnancy and look forward to following your story. Kathy


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