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  #1  
November 26th, 2012, 03:02 PM
wanttobeinvienna's Avatar Veteran
Join Date: Oct 2012
Posts: 317
There is always that one person on a community forum who always seems to just complain, and complain and complain. That everything is just always wrong in their world?

I think I am that person . Thing is, if you had met me 3 months ago, my life seemed so perfect and now it's turned up on end.

So, here's today's stress... Last week I went for my first trimester screening, and it was a beautiful experience. The baby was active and healthy, and all of the initial screening looked great.

And then today I got the call. The doctor let me know that there was evidence of elevated risk of Down's Syndrome. The tri- tests all looked great, but there is significant concern about the Down's. Given my age, and a strong family history of Down's Syndrome, I had feared that possibility could happen, but I guess we never feel that will happen to us, right?

So, my doctor recommended further testing. I have no question that I want to do further testing, as I believe in education and knowledge and much like finding out the gender, knowing any chromosomal abnormalities is important to me to best prepare for this baby.

The question is which one? There is a wonderful, new test called the Maternit21. It's a simple blood draw that is 99.9% accurate. The kicker- because it's so new, and not backed by the AMA, it is not covered by insurance.

Which leaves either an amniocentesis or placental biopsy. There is a 1 in 200 risk for the amnio, or 1 in 100 risk for the biopsy, which in my mind is a no brainer and I ruled out the biopsy.

I know the general thought is it doesn't change the decision to carry the pregnancy, so why have the test? Well, having lost an aunt to complications from Down's Syndrome (heart defect), that could have potentially been prevented with better and earlier detection, I feel strongly that knowledge is important and beneficial.

So, does anyone have any experience with this? Everyone I know who had an amnio had it 30+ years ago. I am just ready to have one week where something doesn't come up and blind side me :/.
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  #2  
November 26th, 2012, 03:10 PM
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Posts: 6,057
Amnios are now guided by ultrasound and the risk of miscarriage has dramatically reduced, but there are no good stats on it because protocols and u/s equipment vary so much. But my OB guesstimated it was AT MOST 1/700 or so. She just hasn't seen it happen at her practice. I would ask your doctor about that.

I plan to do the Materni21 test because our insurance and finances make it not a burden, and it just sounds so cool. The quad screen has REALLY high false positives so don't read too much into that... it sounds like your intrinsic risk factors are the bigger issue here (family history and age).

If I were you I would do an amnio. But you should talk to your doctor about how they do it in your health practice, how many miscarriages they have seen from amnios in their current protocol for it, etc.

Hugs and good luck hun... I hope you get good news one way or another!
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  #3  
November 26th, 2012, 03:19 PM
eshute's Avatar Mega Super Mommy
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Location: Pittsburgh, PA
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I don't think you're complaining at all! All of our lives have changed, and for some of us our circumstances aren't improved - they've just become more complicated than ever. This is a place for support and I don't think anyone thinks you're "the complainer". This is a valid worry and I think more than one of us will go through it before the end of the next few weeks as many of us are getting NT scans.

That being said, I don't have any experience with it except from other people. I've been told that many times the baby will have the markers or the blood work will come back "positive" when the baby is just fine. I agree with you that education is very important and regardless of whether or not it changes the outcome of the pregnancy, that it's nice to be prepared. I really hope you get some better answers soon and that all is well! Sorry I couldn't be more helpful.
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  #4  
November 26th, 2012, 05:15 PM
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How much does the new test cost out of pocket?
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  #5  
November 26th, 2012, 05:25 PM
navywifey2003's Avatar Home Birth Mama
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I think I would do the amino if I was in your position. Being that the blood test is so new I'm not sure if I'm inclind to believe the results. How many people has this test been preformed on to get that accurate of a result. Kwim? I'm skeptical. Huge hugs Hun.
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  #6  
November 26th, 2012, 05:26 PM
CartersMommy's Avatar Mega Super Mommy
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DO not worry we are here for support. I am not sure I have much to offer. I would probably pay the money out of pocket for the blood test because anything else would be to invasive for my liking. I declined an amnio with my first when they wanted to see about lung development it just did not feel right. ((HUGS))
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  #7  
November 26th, 2012, 06:49 PM
MamaSkunk's Avatar Mega Super Mommy
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If you can I would do the maternit test. I had 5 friends all at different times who were told to have amnios....3 miscarried within a week after. Dont do it! The other two had completely healthy normal babies. And one of those they told her they were certain that her baby had downs...he didnt and is smart as a whip. Truth is they can tell during your 20 week U/S. So dont do it. In my opinion it isnt worth the risk. And if the baby has it or not your still gonna love him/her right?
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  #8  
November 26th, 2012, 06:56 PM
rcjh12's Avatar Nicole
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Does anyone know how much the blood test is out of pocket? I tried looking it up and couldn't find any answers. (Oops, I see someone already asked.)

That said, no experience with this so I'm just sending ((hugs)) to you.
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  #9  
November 27th, 2012, 12:04 AM
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I have no medical advise. I do not think I would an amino personally because the risk factor. I would say go with your gut it is almost always right! Hugs to you miss lady!
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  #10  
November 27th, 2012, 12:54 AM
navywifey2003's Avatar Home Birth Mama
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I do know that usually labs offer a discount for cash patients. The stick at the lab I use to work at was 7 dollars and the test amount varied. I imagine this would be called a send out, where its sent to another lab to be ran. Those typically are more expensive, but since its cash they will charge less than if they were billing insurance:
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  #11  
November 27th, 2012, 04:38 AM
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I'm not sure what I would do. The amnio sounds so scary. But, I'm like you I would want to know so I could prepare to take care of my baby if they had special needs. I would try to find out how much the new test would cost. If you can swing it, I would go that route. If not I would do the amnio. I'm sorry you have to go through this. I pray that everything turns out just fine. ((HUGS))
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  #12  
November 27th, 2012, 06:06 AM
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For those asking how much the newest blood test costs, there was a pretty informative article in the Washington Post. Because I'm so new, I can't post the link though. If you go to the Post website, click on "National" then "Health and Science." It's under the header "New Fetal Test Creates Dilemma."

Summary: Three companies are providing the tests. The tests cost between $1,200 - $2,000, but it sounded like the companies are subsidizing them and could cost around $200-$500.

Good luck and I hope everything turns out fine.
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  #13  
November 27th, 2012, 06:16 AM
Steph625's Avatar Super Mommy
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I don't think you are complaining one bit! Those are big concerns and questions and you came to the right place to express those. I don't have any informative facts to give but just my support! I agree with you that even though the results won't change the outcome of the pregnancy, being educated is very very smart! I pray you find the right answers and right means for your decision and just remember, no decision is the wrong decision and you will be supported no matter what route you go! (Hugs)
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  #14  
November 27th, 2012, 06:46 AM
wanttobeinvienna's Avatar Veteran
Join Date: Oct 2012
Posts: 317
A new prenatal test for spotting genetic issues is less invasive, but it’s pricey - The Washington Post

That's great, thanks for the link!
Just for clarity, my age and family history made the risk about 1 in 176, but with the blood work from my NT scan, that risk went up drastically.

It's been a very tough decision to make, but I think we have decided to go through with the amnio. It's so accurate, and makes the most sense at this point, regardless of insurance coverage, the maternit21 is so new, I am not sure I am fully bought in yet.

So, I will call the doctor this morning, and get that ball rolling.
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  #15  
November 27th, 2012, 06:59 AM
terese81's Avatar Veteran
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Posts: 157
You're not complaining, you're looking for support and advice. I have no experience with this, but wanted to wish you the best and I hope the amnio comes back okay! Keep us updated on when you're setting it up for!
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  #16  
November 27th, 2012, 09:28 AM
Rochelle
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I have no experience with this but I'm so sorry this has to be a worry on top of everything else.
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  #17  
November 27th, 2012, 03:16 PM
MrsLat's Avatar Mega Super Mommy
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Posts: 4,131
I am sending support and hugs your way. I had an amniocentisis in my first pregnancy. I know there is risk, but I had a good experience. I just want you to know that there are positive stories out there despite the risk! I, like you would want to know. Knowledge and preparation are important when dealing with a possibly disabled child. I am hoping that everything turns out fine though! Keep your thoughts positive! We are all here for you
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  #18  
November 27th, 2012, 03:46 PM
navywifey2003's Avatar Home Birth Mama
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Thinking of you!
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  #19  
November 27th, 2012, 04:13 PM
QueenCrafty's Avatar Courtney
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Not a complainer at all! These are valid concerns, and frankly I learned something new about the new blood test, so I'm glad you posted. When will the amnio be done? Is there a greater risk the earlier you are? My friend had an amnio at 37 weeks two years ago to check lung maturity due to her own health concerns. It went perfectly fine for her.
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