MaterniT 21- Define Normal

20130310-082613.jpgI used to think I knew what “normal” was. If you would have asked me three years ago I would have tried to come up with something but honestly it’s difficult to define. What really is normal?

“typical”- adjective 1. of the nature of or serving as a type or representative specimen. 2. conforming to a particular type. I wanted my childern to assimilate and be typical.

Our path isn’t typical but it isn’t bad either. Every day our new “normal” becomes more and more typical. But normal? Well I don’t really know what that is.
I believe that if you take a step back and look at your own life you will find the same is true for your family. Maybe I’m wrong, but I know one thing for sure, our normal isn’t wrong and we feel blessed daily by our Eli.

I guess what got me thinking about it was all the MaterniT21 buzz. There has been a lot of discussion about the new test since we took it ourselves in 2011. It seems crazy to me that it has even been that long!

MaterniT 21:
-99% accuracy
-Can be performed as early as 10 weeks
-Detects Trisomy 13, 18 and 21 + gender
-No risk to fetus or mom
-Results in 2 weeks
-Company will attempt to bill insurance- max out of pocket is $240

Anyway- as we look to the future of our family and what that may mean, I’ve spent time thinking about how important it really is.
Most women in early pregnancy say things like- “We don’t care about the gender we just want a healthy baby”, “I’m not doing prenatal testing because the results wouldn’t change our decision”. We say those things knowing that it does matter and our expectation is “normal”.

Many special needs parents are reeling at the idea that a woman would know so early in her pregnancy that their child will have Trisomy 13, 18, or 21- and how that might affect their decision to maintain that pregnancy. It’s scary to think about honestly. A life without Eli?

We found out at 20 weeks that Eli would have Ds. By then, he was ours. I could feel him, we had named him, he was our baby. The diagnosis was scary but it truly didn’t matter because he was ours.

My point in all this is that I am so thankful we took the MaterniT21 test and were able to get the prenatal care we needed. Our pregnancy was stressful and yes there was grieving but being emotionally prepared made my sons birth what it should have been- a celebration. I spent so much time worrying about Eli and trying to define “normal” that I lost focus on what was important- my pregnancy and my son. Thank you, Lord for opening these blind eyes to the joy that is Eli!
THAT is why I think this test is so amazing- I understand the risks that go with such early detection, but the benefits outweigh that in my mind. We got specialized ultrasounds, heart echos, were more closely monitored, and we were able to research and plan for what Down syndrome would mean for our family.

In one month we will be celebrating Eli’s 1 year birthday. Celebrating his life. We never knew we would be the 1:1200 but we are thankful every day for our normal.

I hope that through my family I am able to show others that this is a life worth living- that all life is precious and that Down syndrome is not something to fear. It’s not scary and our kids deserve every opportunity anyone else is afforded. We are working to redefine “normal”. This is real.

For more information on the MaterniT 21 test: Sequenom

Before I formed you in the womb I knew you; and before you came forth out of the womb I sanctified you. Jeremiah 1:5

For you created my inmost being; you knit me together in my mother’s womb. Psalms 139:13

REBLOG:The Gift of Special Needs– Another mom’s perspective on prenatal testing.
This.– So well said and worth a read! Down syndrome: a promise of happiness or a curse?


5 Replies to “MaterniT 21- Define Normal”

  1. Great post Ashley. I do have some concerns about the implications of the test, but I too think it can have a really positive impact. We certainly wouldn’t change our decision to have a prenatal diagnosis, as I am thankful every day that we were able to celebrate Nicholas’ birth, but it would have been good if we could have have done so without the risk. I feel like our life is very ‘normal’ too… just a new type of normal I guess (and better than we could have ever dreamt normal to be) 😉

    1. Absolutely- the new test is so amazing because there is no risk to mom or baby. We had a greater chance of miscarriage due to the amnio than we did of Eli having Ds! That’s crazy to me! And yet amnio continues to be the standard for testing.

      I could understand just flat out not wanting to know either way but we like to be prepared. I’m glad we dealt with our grief before Eli got here so we could celebrate him instead of feel blindsided by a diagnosis at birth.

      Perhaps the test will influence more negative outcomes when it comes to maintaining a pregnancy (there’s a whole board dedicated to women who made that choice on Baby Center: if you’ve ever been there its a sad sad place)…and while that makes me so very sad, at the end of the day they have to live with that decision.
      Maybe they would have decided that either way? Who knows. It’s not for me to judge- only they know their heart and situation.
      What concerns me is the positive aspect of what this test offers and how it helped us with our pregnancy an diagnosis. 🙂 wouldn’t change a thing 😉

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