Monday, October 3, 2011

Day 3: New Blood test for Down Syndrome

Today is Day 3 of blogging "31 for 21."Yesterday I did say that I had a blog completely written but it was too much for an easy Sunday. So welcome to Monday!

Below this paragraph is a link to MSNBC. The story is one that I've read a few times in the last few months but I've really avoided it until it was sent to me again and I thought it was a good 31 for 21 topic.

The article that I am linking to in this post excites me in two ways. First, it tries to convey the message that parents who have a child with Down syndrome are happy. My reaction, "no shit." (Warning: At times I have a potty mouth!) The article focuses on a 25 year old women who has Ds, is a college student, and a Special Olympian. But I can tell you that after only a month having Harper, she doesn't need to become a college student or Special Olympian to make me happy. I'm already happy. My husband is happy. My dog is happy (although jealous). And I am assuming that my extended family is happy:

Uncle Jeffy and Auntie Dajen holding Harper. Don't they look happy?!

My outlook on life is positive and despite what you may assume, I was positive the day I found out that Harper would have Ds and a heart defect. I've stated before and will until I can't talk anymore, that Ds doesn't scare me. Her heart defect scares me but I'm learning to save that until the time gets closer. Scared yes....unhappy? Hell to the NO! I'll take all the survey's you want me to take to prove that "the reality of Down syndrome is positive for a vast majority of parents."

Doesn't she make you happy just looking at her?!

Secondly, the article excites me in a way I can't explain yet. Many of my followers are also mothers of a children with Down syndrome. So, I assume that you are familiar with the new test that will be out to determine if a fetus has Ds. For those of you who are not familiar with this new test, take a minute to read this article. Basically, in a few months a new blood test will be released to help expectant mother's know if their fetus will have Ds or not earlier in pregnancy. I am a strong advocate for knowing ahead of time. We had an amnio done and it was, by far, the second scariest thing I've ever had to do. (It was ranked first up until my c-section at 36 weeks and 5 days). I am amazed at what science can do these day and excited that the blood test is a non-evasive procedure. Because, let me tell you, the amnio was invasive in every aspect. However, what makes me nervous and sad is that because this blood test can be done earlier, there will be an increased risk of terminations. 

Just look at those cheeks! 

To quote the article exactly: "Bioethicist Art Caplan says the ease of this test raises the possibility that Down syndrome will slowly disappear from our society ." 

Did he say "slowly disappear?" As in extinct? As in never to be seen again? That makes me sad. Sad for a million reasons but I don't have time to list them all. It's not like Ds is cancer. If cancer was to slowly disappear from our society how many people would be sad? Not many. Cancer kills. Down syndrome, although it can be accompanied with other medical issues can't compare. To be fair, the researcher also states that he knows it's crucial for families to receive unbiased information about how rewarding raising a child with Ds can be (unbiased? ok don't send them to my blog:)) I recommend you read the article yourself and form your own opinion. I don't want to persuade you to think the way I do. But I believe it's an article that you need to read. 

Yep, we were watching Modern Family! 

This blog is gaining followers (hello 30!) and I hope for it to gain more. I hope this blog becomes a resource for so many moms or soon-to-be mom's like so many blogs were and still are for me. But I know that I will never reach enough pregnant moms to keep Down syndrome from disappearing. Having a child with Ds is fantastic. Seriously, Harper is a normal kid. Granted she is only a month old but she has medical issues and she didn't give me the easiest pregnancy ever but I wouldn't change a thing. Read Harper's Birth Story and you will believe me. 


NewMama said...

That's me...the happy Aunt. I also may have tried to eat those little toes (that's what I'm doing in the picture). Seriously, her toes are smaller than peas.
Harper is precious - we love her!!! We are not just happy, but we are over-the-moon to have a new niece. I mean to have HARPER...her...just the way she is...well with a fixed heart...but just the way she is...I'm looking forward to many Christmas craft projects and soccer games in the yard!!!

Mama Bird said...

My favorite statistic/quote from the article, "A third study evaluating how adults with Down syndrome felt about themselves reports 99 percent responded they were happy with their lives, 97 percent liked who they are, and 96 percent liked how they looked." That is pretty damn good odds for happiness!

Jane@flightplatformliving said...

do you know what i think you are fab!! i love your outlook, your heart, your love and your spirit! iwant you to live next door to me!!and you baby...that picture in pink, oh boy i melted like the witch at the end of the wizard of oz!beautiful!!

as for the blood all for non-invasive tests to be prepared ahead of times but the overtone of iradication is scary!

and where exactly is the balnced approach coming from. A friend of a friend recently found outher baby has down syndrome via amnio and the doctors laid on all the possible worse case scenarios with a trowel...covering all eventualities i am sure and all in the name of giving a 'full picture'! well the pcture wasfar from full...where was the balance inthat! in desperation she was put in touch with me...a stranger mothering a child with smith magenis syndrome.

i cried trying to impart the fact that love is the full picture! but she was scared and aborted the pregnancy!

i was so sad...non-invasive tests great! but come on world...ask for full facts and open your eyes to magic!

brilliant please come and move next door!xxxx