NT results not so good... — The Bump
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NT results not so good...

Well, I just got my NT results back and I received a test positive and am considered high risk for Down's.  My blood work was good, but the neck measured 2.4.  They say b/c of my age, that throws me into the high risk category.  I am 36 and am testing as if I am 39.  I know that there is still only a 1% chance of something being wrong, but I'm still freaking out and can't stop shaking!  My ratio is 1:94.  So, now I have to decide whether or not to take the risk and do an amnio.  I just don't know and I'm completely overwhelmed with fear!  I sure would appreciate any advice or personal experiences with this to help me in my decision.  Thanks!
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Re: NT results not so good...

  • I'm sorry you received such worrisome news.  I understand exactly how you feel.  I got pregnant for the first time at age 38 and my NT results were 1:65 for Downs.

    My doctor was a personal friend of my husband's and she highly recommended amnio.  I did end up having an amnio, mainly because we are "need to know" people and we wanted time to emotionally and mentally prepare for a special needs child.  The amnio itself was uncomfortable but super quick. We received genetic counseling and a very long u/s prior to the procedure.  We got the results back within 2 weeks and they were negative for Downs.

    I liked the amnio because it gave me definitive information.  I had a slight fear of the risks involved but this article helped me work through most of that.  This was almost six years ago and I'm sure there must be more current information available now about risks, et cetera.  HTH!

     

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  • Hugs!  I don't have advice, but I hope it all works out.  Good luck!

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  • No advice either, but good luck and I hope everything turns out well. 
    image Oh Joy to the World!!
  • I'm sorry, I know how stressful that can be. We had crappy NT results as well. We were on the fence about the amnio so we got a referral for a perinatologist to have a lengthy Level II u/s in which we looked for other Downs markers - those markers aren't a guarantee either way, but had we any, we would have likely gone ahead with the amnio. When there were no markers, we put it to rest... mostly. There were times I thought, "what if" but I tried really hard not to.

    I stayed with the peri's office through 36-ish weeks and went for regular growth ultrasounds to make sure everything looked okay.

    Best of luck!

  • No advice, but I just wanted to say I am sorry you are dealing with the "what ifs" and "what should we do" emotions. I hope everything turns out well for you and your LO.

    Dx: PCOS and short luteal phase
    18 cycles (3 with our RE) - Metformin + Clomid + HCG booster did the trick!
    BFP #1 6/22/09 EDD: 3/2/10 DS born: 3/8/10

    TTC #2 since Dec 2011
    BFP #2 7/8/12 EDD: 3/18/12 M/C @ 9w1d: 8/16/12

  • imageduchessII81:

    I'm sorry, I know how stressful that can be. We had crappy NT results as well. We were on the fence about the amnio so we got a referral for a perinatologist to have a lengthy Level II u/s in which we looked for other Downs markers - those markers aren't a guarantee either way, but had we any, we would have likely gone ahead with the amnio. When there were no markers, we put it to rest... mostly. There were times I thought, "what if" but I tried really hard not to.

    I stayed with the peri's office through 36-ish weeks and went for regular growth ultrasounds to make sure everything looked okay.

    Best of luck!

    I have not been in your shoes, but if this option is available (longer u/s), I would probably opt to do it first.  Then if the results are again not great, talk about the amnio.  I don't even know if I would go with the amnio (b/c of the risks), I may just start researching about DS, just in case and go from there.  Sorry you are having to go through this!  I can tell you what I *think* I would do, but if I was in your shoes, maybe I would make completely different choices!  No one knows unless they have been there.  GL!

  • Hugs!

    We went through this with DD#1.  Our bloodwork showed high risk so we were referred to perinatologist who did a much more extensive ultrasound and found that there were no markers for Down Syndrome.  If you haven't already had a level II ultrasound I encourage you to insist upon one PRIOR to having your appointment for an amnio.  This will give you time to digest any additional markers found and weigh your risks/make decisions about what you want to do regarding the amnio, etc.  I felt VERY pressured at the time of my  first peri appointment to do the amnio.  In the end we refused the amnio, did the ultrasound and didn't see any additional markers or areas of concern.  My DD was born completely healthy (no heart issues, etc. that are associate with Down Syndrome) or any other health concerns.  

    We went through the same thing with DD#2 and went straight to the ultrasound (refused the counseling) and found that she was also just fine.  

  • i had similar numbers to you at 29 when pg with dd. we were immediately referred to a high risk ob. (dr. kirshon at houston perinatal is amazing). he did a level 2 ultrasound and didn't find anything wrong. we went ahead and did the amnio and asked for the f.i.s.h. test, which comes back in 24 hours. everything measured fine and dd is/was totally healthy.

    hang in there - i know its hard. 

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  • tbabantbaban member
    Thanks so much for all the feedback...it really helps!  I would like to ask, though, what exactly is the level II ultrasound and when is it done?  Neither my Dr. nor the genetic counselor offered this to me, so I'm wondering why?  I think I would definitely like to do this prior to making any decisions about doing the amnio.  I'm not comfortable at all with an amnio.
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  • kj07kj07 member

    A level II ultrasound is a much more detailed u/s.  It doesn't require special equipment or anything.  I think I did mine at 14 weeks...

    I was 35 when pregnant and my NT screen came back within normal range for my age; but there was an abnormal finding on the neck so I was referred to Dr. Reiter at HPA for a level II.  At the level II, he found a few more markers for Downs which scared me.  He recommended but didn't push an amnio.  After a lot of focused research and talks with my husband and my OB we decided to go ahead with the amnio.  Given Dr. Reiter's experience, I felt the risks were minimal and worth the ability to know definitively.  Just knowing myself I would have been stressed about it for the rest of my pregnancy.

    You need to think about why you'd have the amnio too - you certainly don't have to answer here, but would you terminate your pregnancy if it was Downs?  Or would having an answer one way or another be worth the piece of mind to you?

    Amnio's can bring answers, but they can also bring their own stress - I had a small amount of amniotic fluid leak in the 24 hours after my procedure.  It ended up being fine, just a one time thing, but I went back to the office for further checking to make sure everything was okay and that was a whole added stress for a little while.

    Finally - you always have the right to ask for the stats of anyone who might do an amnio on you - how many they do, how many adverse outcomes they have, how many fetal deaths they have...

     

    There's no right or wrong decision, and it's a rotten place to be in with the uncertainty.  Good luck with whatever choices you make.

     

    photo 8653f130-7264-42f4-8d67-9a73d64cacce_zps8c973e49.jpg

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    BFP #1 4/14/10. Big B born 12/28/10.


    BFP #2 5/27/12. EDD 2/1/13. m/c and D&C 6/21/12.
  • imagetbaban:
    Thanks so much for all the feedback...it really helps!  I would like to ask, though, what exactly is the level II ultrasound and when is it done?  Neither my Dr. nor the genetic counselor offered this to me, so I'm wondering why?  I think I would definitely like to do this prior to making any decisions about doing the amnio.  I'm not comfortable at all with an amnio.

    We had it done around 16 weeks - we had missed the window for CVS and it was early in the timeframe for an amnio. Call your OB/genetic counselor and tell them to schedule you for a Level II. If they won't or can't, seek out a peri on your own. We saw Dr. Reiter at Houston Perinatal Associates.

  • tbabantbaban member

    Thanks so much for all the help/advice!  I spoke with the genetic counselor today and I will be having a level II scan, I just didn't realize what it was.  I will do it the same time as the anatomy scan, so I just have to wait a bit longer.  The waiting is really hard, but nothing I can do about it.  However the scan looks, I will determine then whether or not I want the amnio.  So, no immediate decisions either way.  All I can do is take it one day at a time and try and relax.

    Thanks again for all your responses, it really does help.  It's nice to know that I'm not alone and the only one going through all this.  Good luck to everyone!

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  • imagemelissa0312:

    i had similar numbers to you at 29 when pg with dd. we were immediately referred to a high risk ob. (dr. kirshon at houston perinatal is amazing). he did a level 2 ultrasound and didn't find anything wrong. we went ahead and did the amnio and asked for the f.i.s.h. test, which comes back in 24 hours. everything measured fine and dd is/was totally healthy.

    hang in there - i know its hard. 

    We had almost the exact same experience as Melissa just a few months behind.  I was 34 at the time.  Dr. Kirshon is wonderful and so very supportive.  We did the level 2 US and amnio (fish test) with him.  All came back fine.

    There are many reasons you'll get a high risk score during an NT scan.  

    I know our results doesn't make your wait/ worry any easier.  Let us know if you need anything.

  • HUGS!! You've been given a lot of good advice already, but I'll chip in my 2 cents. :) We had great NT numbers, but DD had dilated kidneys (which are a soft marker for DS), so we saw Dr. Adam at Houston Perinatal for f/u ultrasounds the rest of my pregnancy. We didn't to an amnio and DD turned out just fine. :)

    If you do decide to get an amnio, remember that the "risks" are different for each doctor. Some doctors to amnios every day, and have very, very low rates of adverse effects.  

    DD born March 2011
    DS born Dec 10, 2013
  • Sorry that the results are not stellar.

    I would really concentrate on what that means, odds-wise. And, recognize that it is a screening not a test. (That means it assesses your risk factor - what risk group you belong to - not anything about what's really going on. Only a test or a birth will tell you what is really going on. This is like a appraisal - there is subjectivity - for me, that brings peace of mind.)

    For me, being older, I considered the screening important and would have done amnio. While researching, I became convinced that amnio is much safer than the numbers say; I would have researched doctors and found the one who is best. It is argued that because they are performed more routinely, doctors have gotten better at them and that hasn't really been reflected in the risk associated with the procedure. 

    I'm sure you'll find the right answers for your family as you research. <Hugs> 

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