MaterniT21 results - UPDATE

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MaterniT21 results - UPDATE

Postby HighlandGamesGirlCO » Thu Dec 18, 2014 12:30 pm

I debated long and hard over posting anything, maybe because I don't want to admit defeat just yet, or maybe because I wasn't sure how to broach the subject...but here goes.

Got the call yesterday that my MaterniT21 screening was positive for trisomy 21 - Down's syndrome. That was a punch to the gut I was not expecting...but I asked about my options, and the doctor wanted to do a CVS (Chorionic villus sampling) right away - he explained the MaterniT21 test is a screening but the CVS is diagnostic and will be more determinate. I scheduled the appointment for this afternoon, and we are supposed to know something definite by Saturday.

DH and I discussed it before we started TTC, and again after the call and I had composed myself enough...if it is a Down's baby we will terminate and start over. I know several of you might think that is evil, and that is your right, but please respect our decision and refrain from hateful posts. I cannot personally fathom raising a special needs child like that, or bringing a child into the world that will have no quality of life of its own, with an average 20-25 year life expectancy and a high probability of heart defects or intestinal defects in good conscience.

That being said - I am hoping for the best (5% chance of a false positive) but also preparing for the worst. I was hoping someone out there had a similar experience, or know someone who did, and everything turned out fine. If so please share - holding on to my last few shreds of hope, and it is incredibly difficult.

Thank you in advance. I appreciate you all. :)
Last edited by HighlandGamesGirlCO on Mon Dec 22, 2014 10:17 am, edited 1 time in total.
Me (Lindsey) - 38
DH/love of my life - 44

"We are all atheists regarding most of the gods that societies have ever believed in. Some of us just go one god further." - Richard Dawkins

Fiona Jayne born 12/21/2015 - our solstice baby! 7lb 5.5oz 19.75"

It's a BOY! EDD Feb 16, 2017
Repeat c-section scheduled, Ciaran Reeves will arrive Feb 13, 2017!

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Re: MaterniT21 results - anyone get a false positive?

Postby jesusmiracle » Thu Dec 18, 2014 1:18 pm

Hey Girl...

Keep your spirits up and focus on the positive. I do not have any experience with this, however when you went for your NT scan, where they should have done a blood test and a fluid check (behind the head/neck) did they tell you that there was a change of trisomy 21 based on the findings?
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Re: MaterniT21 results - anyone get a false positive?

Postby 1daysoon » Thu Dec 18, 2014 1:18 pm

I have no experience in this area or know anyone who has but I just wanted to offer huge :hugs: and let you know you are in my thoughts and I rly hope everything turns out just fine for u!
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11week NT scan: :hb: 158 results all good, may be a boy??
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Re: MaterniT21 results - anyone get a false positive?

Postby mermaid523 » Thu Dec 18, 2014 3:33 pm

http://community.babycenter.com/post/a4 ... e_positive

apparently over on babycenter, they have a lot of experience with false positives. praying for you.
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Re: MaterniT21 results - anyone get a false positive?

Postby HighlandGamesGirlCO » Thu Dec 18, 2014 4:13 pm

Thank you for your kind words JM, 1day and Kayla :)

The NT scan was normal, and apparently detects only 60% of downs babies. The CVS was transabdominal, not much fun but not super painful either. We both asked a ton of questions and feel well-prepared for either eventuality. We will have a definite answer on Saturday, and I will be sure to post the result.

I didn't want to find out the gender unless the CVS came back negative, but it was on the copy of the result printout they gave me. It's a boy. Sigh.

Also Kayla, congrats! Very happy for you and I hope you have a wonderful and healthy pregnancy :)
Me (Lindsey) - 38
DH/love of my life - 44

"We are all atheists regarding most of the gods that societies have ever believed in. Some of us just go one god further." - Richard Dawkins

Fiona Jayne born 12/21/2015 - our solstice baby! 7lb 5.5oz 19.75"

It's a BOY! EDD Feb 16, 2017
Repeat c-section scheduled, Ciaran Reeves will arrive Feb 13, 2017!

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Re: MaterniT21 results - anyone get a false positive?

Postby LiliWS » Thu Dec 18, 2014 8:32 pm

There was an article recently on false positives on tests like Maternit21. Apparently false positives are undercounted. These are screening tests not diagnostic. Sometimes it seems even the doctors don't know better in advising their patients.
Found it: https://www.bostonglobe.com/metro/2014/ ... story.html
All that to say - it's a good idea to go for a diagnostic test if you get a positive on the screen (and this is a screen).
This must be so hard. I wish you the best of luck.
Last edited by LiliWS on Thu Dec 18, 2014 9:38 pm, edited 1 time in total.
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Re: MaterniT21 results - anyone get a false positive?

Postby mermaid523 » Thu Dec 18, 2014 8:35 pm

Aw thank you Lindsey.

Will be thinking about you over the next couple days. <3
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Re: MaterniT21 results - anyone get a false positive?

Postby Honey Bunny » Thu Dec 18, 2014 9:30 pm

Yes the cvs is 98% and more certain, so I'm praying you get good news this weekend . Do know your in my thoughts and prayers . DH and I also discussed that topic if we had a positive . I also do understand where you are coming from and we too would take the same route . I don't think it's fair to the child, society or the parents . It's not a way of living for a child, and our society to be honest is not the most hospitable nor understanding to DS kids . Sad to say it but it's true . Those test are the only thing that keeps me from sharing the news with the rest of the world.

Just know I'll pray for you and keep you in my thoughts . Hugs !
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Re: MaterniT21 results - anyone get a false positive?

Postby HighlandGamesGirlCO » Fri Dec 19, 2014 6:39 am

Thank you lilws - I am hoping that is the case with me.

Isis thank you for the supportive words...we are definitely in agreement :) This is the longest 48 hrs ever...
Me (Lindsey) - 38
DH/love of my life - 44

"We are all atheists regarding most of the gods that societies have ever believed in. Some of us just go one god further." - Richard Dawkins

Fiona Jayne born 12/21/2015 - our solstice baby! 7lb 5.5oz 19.75"

It's a BOY! EDD Feb 16, 2017
Repeat c-section scheduled, Ciaran Reeves will arrive Feb 13, 2017!

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Re: MaterniT21 results - anyone get a false positive?

Postby jesusmiracle » Fri Dec 19, 2014 7:19 am

Just wanted to share this with you- a co-worker of my husband had the same diagnosis, went through with all the testing, and was told the baby had trisomy 21. They decided they would go on and continue with the pregnancy and take care of their child.... after she gave birth.... guess what- baby is FINE! Does not have trisomy 21 or any issues at all... perfectly healthy baby boy.....

Sending my thoughts and prayers with you.... positive...
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Re: MaterniT21 results - anyone get a false positive?

Postby ShuggysMom » Fri Dec 19, 2014 7:44 am

Highland- I lurk on this board, but don't typically post. Just wanted to say I am sorry you've been dealt this hand. This is your decision alone and I (albeit a complete stranger) am sending all of my strength, prayers, and hope to you and your husband. Very best wishes for the best possible outcome!
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Re: MaterniT21 results - anyone get a false positive?

Postby HighlandGamesGirlCO » Fri Dec 19, 2014 8:28 am

Thank you all so very much - it is certainly appreciated!! :)

This :wait: is killer...sigh.
Me (Lindsey) - 38
DH/love of my life - 44

"We are all atheists regarding most of the gods that societies have ever believed in. Some of us just go one god further." - Richard Dawkins

Fiona Jayne born 12/21/2015 - our solstice baby! 7lb 5.5oz 19.75"

It's a BOY! EDD Feb 16, 2017
Repeat c-section scheduled, Ciaran Reeves will arrive Feb 13, 2017!

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Re: MaterniT21 results - anyone get a false positive?

Postby 1daysoon » Fri Dec 19, 2014 8:34 am

Hang in there girl! Tomorrow will be here before u know it :)
Me: Steph 26 Dh: 27 DD: 6
10/29/14 :bfp:
7 week us: :hb: 120
11week NT scan: :hb: 158 results all good, may be a boy??
16 week elective us: IT'S A BOY!!!! Finally officially announced we're expecting!

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Re: MaterniT21 results - anyone get a false positive?

Postby shadypersephone » Fri Dec 19, 2014 9:05 am

Just wanted to say you're in my thoughts and prayers. I've got everything crossed for you.
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Re: MaterniT21 results - anyone get a false positive?

Postby tryingnumber3 » Fri Dec 19, 2014 11:25 am

Omg Lindsey, I am so sorry you have to go through this! I really hope it is a false result and you hear some good news this weekend. I can't even imagine how you feel. Just know that my heart really hurts for you. I went to nursing school with a lady who, when pregnant with her dd was told she would have downs, but was born completely normal. :'(
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