Monday, November 18, 2013

Considering invasive testing

We got the call that we are at increased chances of our baby having Down Syndrome or Trisomy 18.

Our original ratios for my age were 1/62, changed to 1/6 for Down Syndrome.  It was 1/115, changed to 1/27 for Trisomy 18.

Down Sydrome.  Not Down's Syndrome.  We can do this.

Trisomy 18.  Failure to thrive.  I don't know if I can go here.

Last time I did this, I lost 2 jobs.  Long term disability.  Lost the fucking plot.  I don't know how I could carry but I don't know how I could not carry either.

Considering CVS.

23 comments:

  1. Roccie - I did CVS. It wasn't bad. I was not sure what I would do, but I just wanted to know. I highly recommend. Thinking of you. K

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  2. Oh no, I am so so sorry you are dealing with this, and I so feel for you...
    I have gone through a similar mindfuck -- twice. In the end I did do the invasive testing - and it was not normal, but not in ways i was expecting: sex chromosome abnormalities can also sometimes produce abnormal screenings. Yet the complications they produce are much more mild. In the end, i am glad I tested, because that meant i could read up on the possible complications and intervene early. If you are worried about the "invasive" part of testing, would you consider doing the new blood tests (like "harmony")? Best of luck to you - i am constantly thinking about you and sending you the warmest thoughts...

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  3. Ugh, so sorry!!! I was just talking with my OB about setting up first trimester screening and Nick and I were discussing what will we do if something does come back abnormal....SO impossibly hard and also so very personal. Sending thoughts your way and hope you find the strength you need and clarity towards a specific decision

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  4. I am sorry that you are dealing with this. I am sure you guys will make the right decision for you. To echo katherine, have you considered the blood tests like MaterniT21? Thinking of you!

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  5. ughh, That is stressful. I did an amnio with P. It sucked but turned out all was ok. Good luck, Nicole

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  6. One more thing, my friend got an odds of 1/4 for down syndrome, she did CVS and no DS. ~Nicole

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  7. Wish you might have been spared this. Still persisting in prayer and hoping for the best and some peaceful tinge to the gut wrenching worry.

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  8. Ugh :( Why does this all have to be so scary? I'll be hoping that all is well. I have my nuchal fold scan this week and am anxious because I don't know much about our donated embryo's health history. I've been looking into the MaterniT21 just in case. Hang in there...it could still be ok.

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  9. What about MaterniT21? Is it available to you? I felt very confident that it was correct when I read the report when we did it. Pricey but the company cuts down the out of pocket for self pay.

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  10. Def do Mat 21. Can do as early as 20 weeks. If that's positive (99 % accuracy) then consider amnio/cvs.

    FYI before Mat 21 was available the 1st tri screen gave1/6 Down risk for our 1st baby. Amnio = normal. For 2nd baby we skipped 1st tri screen and did only Mat21.

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    1. Typo--as early as 10 weeks.

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  11. Ah, Roccie. I'm so sorry you're dealing with this. Yeah, sounds like further testing is warranted.

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  12. Oh no. I'm so sorry you have to deal with this. No advice, but thinking of you.

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  13. Many, many hugs. One day at a time, my friend.

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  14. Abiding with you. Hoping for the best. xo

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  15. I love you. I'm here. <3 <3 <3

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  16. Praying for health and direction.

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  17. Well, that's not the news I was hoping you would get. But I know you make really good, thoughtful decisions, dear woman, and this is what you'll do in this case. It just sucks that you even have to consider more invasive procedures. It's never easy, is it.
    Sending warm, supportive thoughts to you.

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  18. Oh Roccie, I'm so sorry you are going through this. I know you will make the right decision for your family. Sending you strength and hand holding.

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  19. Aw cr*p! Not what you need! I know someone who had low risk on the bloods and had a baby with DS and someone who got high risk results and did CVS and was all clear - it's such a tough call. Just crossing everything that the decision becomes clear for you.

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  20. Ok I know this isn't a real comment but I'm wondering and hoping that all is well with you and #3.

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  21. Okay I know this isn't the right place to do this but I'm seriously wondering how you are doing and how all is going. Thinking of you.

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