Success after IF

XP - Crappy NT Scan

I've posted on all of the relevant boards out there, just because I'm really hoping for something.  After all the IF drama, and the beta issues we had early on, and the ectopic concerns, I finally thought we were in the clear.  then comes my NT scan.  Apparently all looks good, but there was no nasal bone, which is a red flag for Down's.  So I got my bloodwork back today and yet again, all looks good, but because there was no nasal bone (and belive me  - the tech and the doctor did everything to try and find it) my odds are 1/158.  If the nasal bone had been there it would have been like 1/6500.  I'm hoping and praying and even trying to visaulze the nasal bone, so that it's there when we go back for another u/s next week.  But if it's not, we're going to have to go for invasive testing, and I'm really torn as to if we should do the CVS which we can do now and it's 7-10 days for the results but it has a higher chance of miscarriage or the Amnio, which we'll need to wait 4 weeks for and then another 2 weeks for the results. 

Anyone have any experiences similiar to this, or know of anyone who did a CVS or Amnio?  Just looking to see if anyone was in the same boat and how it turned out, or knows of someone who had a simliar story, or has something relevant to share.  I'm really scared right now, and i'm definitely freaking out.

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Re: XP - Crappy NT Scan

  • I am so sorry for your experience.  I hate that it never gets easier.  I don't have any first hand experience with the tests you mention; for me it would be a matter of deciding what you would do with the information and if you are just looking for more information to be prepared or are you considering taking action.  1:158 is still low odds.  Will you be going back for another u/s?  I think for me I would want another opinion prior to doing something invasive. 

    ((Hugs))

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  • I'm sorry you are dealing with this and I know how scary it is.  A few weeks ago my NT Scan results came back with 1:1814 for T21 and 1:104 for T 13 and T18 based on my bloodwork because the NT fold measured well and the u/s looked fine too, and I'm 39.  My blood work increased my odds more than my age and it was found I have low PAPP-A and low HCG which can be indicators for these trisomies, or it could just mean I have low levels of these serums in my blood.  There is a new test out that is non-invasive unlike the CVS and Amnio that a lot of people are opting for instead.  It is called the MaterniT21 test.  It is a blood test that will test with I believe 99% accuracy for T21, T13 and T18.  I had the test done and got my results last week which were negative and greatly eased my worries.  I would talk to your Dr. about that test and see if they offer it instead of the CVS or amnio.

    Here's more info:

    https://www.sequenomcmm.com/home/health-care-professionals/trisomy-21/

     

     

  • I'm sorry you are going through this, but a 1/158 chance is still very low so chances are everything is ok. I have had a CVS before and it went smoothly.  My doctor told me she had never had a patient miscarry from the procedure.  My was done through the abdomen (which is how my peri prefers to do them) and it was a bit uncomfortable for a couple days, but that was it.

    However, my situation was different because we had already been told our baby would not survive much longer and we were only doing the CVS to try to get answers before we lost her (we didn't know if we would make it far enough to be able to do an amnio, which I think I would have preferred).  With this pregnancy, we were given a 1/100 chance of T21 and chose not to do the CVS again because we didn't want to take any unnecessary risks.  However, our risk was only so high because we lost our previous baby to T21 due to a translocation.  The nuchal measurement was on the high side of normal this time, but nothing bad enough to make us feel the test was necessary.

    I have heard several people mention the new test a PP mentioned, so you could ask your doctor about that possibility.  I'm really sorry you are dealing with this and I hope everything turns out well.  Waiting for answers is so hard, but try to remember you still have a good chance everything will be ok.

    It took 3 1/2 long years, but we finally got our little miracle!
    IVF #1 - BFP (6dt)
    Unassisted Pregnancy #2 - lost at 15w6d due to T21, severe heart defects, and fetal hydrops

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  • epphdepphd member
    The mc rate for CVS and amnio is the same so long as the provider has lots of experience.  And you can opt for expedited analysis to get your results in 48 hours.  Ask about FISH analysis.  I'm sorry. Feel free to PM if you have more questions.
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    I am a runner, knitter, scientist, DE-IVF veteran, and stage III colon cancer survivor.
  • imagesamk213:

    I'm sorry you are dealing with this and I know how scary it is.  A few weeks ago my NT Scan results came back with 1:1814 for T21 and 1:104 for T 13 and T18 based on my bloodwork because the NT fold measured well and the u/s looked fine too, and I'm 39.  My blood work increased my odds more than my age and it was found I have low PAPP-A and low HCG which can be indicators for these trisomies, or it could just mean I have low levels of these serums in my blood.  There is a new test out that is non-invasive unlike the CVS and Amnio that a lot of people are opting for instead.  It is called the MaterniT21 test.  It is a blood test that will test with I believe 99% accuracy for T21, T13 and T18.  I had the test done and got my results last week which were negative and greatly eased my worries.  I would talk to your Dr. about that test and see if they offer it instead of the CVS or amnio.

    Here's more info:

    https://www.sequenomcmm.com/home/health-care-professionals/trisomy-21/ 

    I took the same test with this pregnancy - my hospital had just approved it for use in screening for T18 the day after I got my 1:100 "screen positive" results for T18. I was nervous about the risk of CVS, despite the fact that I was just about to go in for one when the MaterniT21 test was approved for my case. That said, in the hands of an experienced practitioner, the risk of CVS and amnio is very low.  

    Good luck, whatever you decide. And epphd is right, you can get expedited results using FISH analysis, and that is an option your provider should be able to tell you about. (((hugs))) I hope you get very good news.  

  • No experience just (((hugs))) and good thoughts. 
    Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker TTC since Dec '04 Severe MFI-diagnosed 12/06 3 failed Fresh IVFs FET #1 - BFP!! 2 blasts tx on day 6. Beta #1 8dp6dt = 56, Beta #2 = 600, Beta #3 = 5600 My Blog Image and video hosting by TinyPic Image and video hosting by TinyPic
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