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Genetic counseling this morning, recap

July 11 2012 at 12:48 PM
Teresa  (no login)

Dh and I were at the hospital at 8am and met with the counselor.

It was tough. Neither of us slept much last night and as soon as we sat down in her office I started sobbing again.

She explained a little more in detail about the results. We tested 1 in 127 for downs and 1 in 2,981 for the trisomy 18 and 13 ( I think those were the two). On no sleep a migraine and crying fits its a little fuzzy...really tried to focus. She said before the test my chances were 1 in 83 .... How she got to that number I'm not sure., but she mentioned how they take your h c g, age, weight, a few other things... But after the test , I got 1 in 127. This slight increase over 1 in 83 just doesn't make me want to jump for joy and of course she said they would have liked a much higher number. Specifically my free beta was 78.59 (80th percentile). Papp-A was 0.52 which had me in the 20th percentile and the nt fold which today I found out was 1.2 not 1.1 like the tech told me (yes still in normal range but I wish they were a little more careful in delivering the numbers). Also was told that a thin measurement does not guarantee no downs and even if you get say 1 in 1150, this too is no guarantee of no downs. But still.....

She asked us a history of our families. Neither dH or my families have any downs.

She explained the cvs test and the materniti21 test This groups specific statistics for cvs were 1 in 300 for miscarriage and I was in no way comfortable with that number despite my 1 In 127 result being less. I got hysterical again ( no sleep, the stress, my uncle died last night to boot and having to think so fast on what we wanted to do, because I am 13 weeks 2 days so they said I needed to decide then and there to have cvs. Today) no pressure or anything, right. I felt like I was truly in the depths of hell having to decide this so quickly and under so much strain.

She left the room so dH and I could discuss what to do. The 1 in 300 scared us both. And we thought, the materniti21 is non invasive and has a 99.1 accuracy rate. The cvs has 99.9 accuracy. The stats with that cvs disturbed me terribly. We ultimately decided to do the materniti21 test, unfortunately it's a 10 day wait for the results. God give me strength because I don't know how I will make it. We just wanted to be as non invasive as possible to boot. And also, mentally emotionally me doing a cvs today, on no sleep and hours of crying, just not good.

If this test comes back positive, then I will have to get an amino, but at least it will give me time to research a doctor with the best stats , because theirs are 1 in 400 for miscarriage in amino. Sorry, stupid iPad won't let me type amino ...... Maybe theses stats are everywhere, but my gut told me don't do it.

The materniti21 test unfortunately cost us 475 dollars we had to pay today. Insurance doesn't cover it. Sucks. We are so broke between our car dying 2 weeks ago and having to add a carpayment to our budget after years of owning free and clear..it just all adds up. But it is what it is. Some insurances only have to pay 235 but our empire plan is a direct pos so we had to pay more. It's always something.

They gave me a quick scan, with the way I was hysterical yesterday and all last night and today I was afraid the baby died. I know I am NUTS...the heart was beating and the baby was in there, not moving...but in there alive. Then the dr came in, he sort of pressured us to do the c vs which got me hysterical again. He said " I've done 236 of these " we were just like "no, thank you". He got a little snooty about that materniti21 test saying its not conclusive. But if it comes back to be negative I will be very happy with those odds. I will worry regardless.

So now the wait begins. Thank you all for your support with this. Trying to think positive but it's just very very hard. If you pray, please pray for my little one...no downs. .thank you!

 
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Responses

  1. Just wanted to wish you the best - DeeinNYC on Jul 11, 2012, 1:04 PM
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  3. Praying for u and the baby - Marti on Jul 11, 2012, 3:18 PM
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  5. Re: Genetic counseling this morning, recap - Erin on Jul 11, 2012, 4:35 PM
    1. And forgot to add... - Erin on Jul 11, 2012, 4:50 PM
    2. Totally agree with Erin - mel on Jul 11, 2012, 5:42 PM
     
  6. Really sorry for your loss - Laura on Jul 11, 2012, 5:06 PM
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  8. Do you pray/meditate/do guided imagery? - Alli on Jul 11, 2012, 5:58 PM
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  10. Thanks for the update - Antonialisa on Jul 11, 2012, 6:02 PM
    1. Hugs - Rebekah on Jul 11, 2012, 10:29 PM
     
  11. Re: Genetic counseling this morning, recap - anna on Jul 12, 2012, 2:01 AM
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  13. Thanks all and - Teresa on Jul 12, 2012, 5:21 AM
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  15. Thinking of you - gone_fshn on Jul 12, 2012, 7:51 AM
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  17. Re: Genetic counseling this morning, recap - BroodyHen on Jul 12, 2012, 10:55 AM
    1. Broody - Teresa on Jul 12, 2012, 12:38 PM
      1. did she qualify that statement for you? - Mrs. A on Jul 12, 2012, 1:46 PM
        1. Ugh this is the third time I'm replying to this - Teresa on Jul 12, 2012, 3:07 PM
          1. I'd be curious for her - Mrs. A on Jul 12, 2012, 3:45 PM
            1. that is my understanding too - Jamie on Jul 12, 2012, 3:52 PM
            2. Same understanding - cbsgirl on Jul 12, 2012, 4:09 PM
            3. I thought so, too! - Teresa on Jul 12, 2012, 4:49 PM
              1. My beta at 5 wk was also 8k+ - mel on Jul 12, 2012, 4:56 PM
          2. What?? - Laura on Jul 12, 2012, 5:42 PM
      2. thanks, teresa - BroodyHen on Jul 13, 2012, 1:18 AM
     
  18. Hi Teresa - Hadas on Jul 12, 2012, 3:27 PM
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  20. oh Teresa I'm so sorry - here is some hope for you - Sarah in Seattle on Jul 13, 2012, 2:07 PM
    1. Thank you, Sarah in Seattle!! - Teresa on Jul 13, 2012, 4:46 PM
      1. I like that 99.2% of everything being fine! - Sarah in Seattle on Jul 14, 2012, 6:34 PM