November 2012 Moms

NT scan results---

So...I saw my OB on Tuesday and got the NT scan results. It is just from first blood draw and scan.

Based on just the blood draw and my age alone, my risk for a child with Down's Syndrome was 1 in 141. When they added the scan to it, my risk factor improved to 1 in 284. That cuts my risk about in half, but still leaves me in the "increased risk" category. The doctor said that he was less concerned because the risk was cut way down with the scan. He said the inital numbers were that low based on my age (I'm 38). He said the decision to go with an amnio is up to my husband and I. He said he couldn't tell us what to do, but he and the genetic counselor agree that they don't know if they would rush into it. Doctor did tell me if it were 1 in 300 that the risk would have been "no risk" rather than "increased risk."

 My husband doesn't want the amnio. He says we are close enough to that 1 in 300 that he doesn't want to risk any complication. He also says we wouldn't love this child any less if it were the case that the child had Down's Syndrome. I agree 100% but I can't shake the feeling that maybe we should do amnio. To be prepared?

The rational side of my brain knows that this is just a "risk factor" and there is a good chance that our child will be perfectly fine. I have my genetic scan in 3 weeks.  

I know we need to make the decision, but I'm curious to hear what others would do?

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Re: NT scan results---

  • Going into my NT scan I knew I would not get an amnio no matter what my results were.  I didn't even have the test done with my first DD but due to some concerns my OB highly recommended it this time.  You are only 16 away from the 300.  I am with your DH and I wouldn't take the risk.
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    image WannaBMommy81:
    Going into my NT scan I knew I would not get an amnio no matter what my results were.  I didn't even have the test done with my first DD but due to some concerns my OB highly recommended it this time.  You are only 16 away from the 300.  I am with your DH and I wouldn't take the risk.

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  • For the time being I don't have to have an amnio, but back when I thought it might be a possibility I weighed my personal feelings against the risk of complications. I decided against doing one. My rationale was that unless I thought the  trisomy 13 or 18 risk was high ( and mine turned out to be very low) it wasn't worth the risk. I had settled into the idea that trisomy 21 (DS) was a possibility and decided I would go through with a DS pregnancy. For a reason I can't explain, I had decided that if the margin between risk of complications and risk of DS was very narrow, then knowing now rather than later didn't matter to me very much. I feel so unprepared anyway. That might have been a  terribly naive and possibly very uninformed thought process (and a few of my relatives have criticized my attitude). My genetic testing for other conditions looked great, so major chromosomal abnormalities were my primary concern and DS ranked lower on this list for me than almost all of the others.

    That said, I'm due for an anatomy scan in a little over a month. Depending on how it proceeds, I may change my mind. 

    Right now you it sounds like you have a few weeks to make this decision. Take your time. The numbers sound so close to low risk that it sounds like you really have the freedom to simply choose.

  • I'll be 39 when I deliver, so I know the decisions and dilemma you and YH are going through.  I told myself that even if my odds were 1:300 or 1:400, I would still be worried (I'm a glass half-empty type of person).  However, I was hesitant to get an amnio b/c we had IF issues and it took us 4+ yrs to get a viable pregnancy.

    In the end, I opted for the traditional integrated screening test (NT + 1st tri b/w + 2nd tri b/w; it's more accurate than just the 1st tri screen), and also paid OOP for the MaterniT21 blood test.  The MaterniT21 blood test just came out about 6 months ago and is 99.1% correct in detecting T21 and T18.  I'm surprised your genetic counselor and/or your OB didn't mention it?  I know the MaterniT21 is not widely available yet; it's mostly available in major cities.  It's worth checking out to see if it's avail in your area.  Since it's a blood test, it does not carry any miscarraige risk.

    Good luck to you on your decision.

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  • Why don't you start with the 2nd tri blood draw (can be done between 16 and 18w, I think).  When they combine this with your previous blood draw and nt measurments you will get an even more accurate picture of what your odds are.  Also, you can have a level 2 u/s to look for other markers.  Finally, you can see if the MaterniT21 or verifi blood tests are available in your area and what the costs of such tests would be.  They are diagnostic tests and give you a diagnosis, rather than a probability like the NT and IPS screens do.

    If after exploring all these options, you are stil uncomfortable with where you stand, then you could have an amnio.  You may want a firm diagnosis, even if you planned on having a special needs baby, just to ensure you have all the experts and people on hand during delivery to ensure your little one has the safest birth possible and that they are fewer surprises on delivery day.

    I would do exactly the above if I was in your shoes.

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  • I know exactly how you feel!  I got my results about a week ago and my doctor immediatly set me up with a genetic speacialist the past Tuesday.  I am also 38 and was told based on age I was going in with the risk of 1 in 130, but after I too improved to a risk of 1 in 330.  The councillors were good in thier reassurance, and I did feel much better after leaving the appointment.

    Right now I am torn as to if I will do the amnio.  I kind of feel better about the results.  But I also was told that if if will be something that will cause stress or anixiety then perhaps I should get it done for piece of mind.

    Still thinking this one out...let us know what your thinking and good luck!

     

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  • Two of my friends had false negatives with this test.  They didn't go ahead with further testing because they knew this test tends to have a high number of false negatives.  I'm sure your baby will be totally healthy.  Good luck!!
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  • image benoitfan:

    Why don't you start with the 2nd tri blood draw (can be done between 16 and 18w, I think).  When they combine this with your previous blood draw and nt measurments you will get an even more accurate picture of what your odds are.  Also, you can have a level 2 u/s to look for other markers.  Finally, you can see if the MaterniT21 or verifi blood tests are available in your area and what the costs of such tests would be.  They are diagnostic tests and give you a diagnosis, rather than a probability like the NT and IPS screens do.

    If after exploring all these options, you are stil uncomfortable with where you stand, then you could have an amnio.  You may want a firm diagnosis, even if you planned on having a special needs baby, just to ensure you have all the experts and people on hand during delivery to ensure your little one has the safest birth possible and that they are fewer surprises on delivery day.

    I would do exactly the above if I was in your shoes.

    This.  Now that you know there is potential risk, it'll always be on your mind.  BUT, there have to be other, less invasive and risky options than an amnio.  Push your doctor for further blood testing and other options.  Tell him/her you aren't 100% comfortable with an amnio, but you aren't ready to let it go entirely.

    I agree with you too, on wanting to know.  I also see your DH's perspective, which puts me right on the fence.  We chose to do the NT scan because 1) it was paid for by insurance and I longed to see the baby again! and 2) I'm a planner and I want to be as prepared as possible for my child.  I want to read the right books, surround myself with the right resources, and have the right tools.  If my child is special needs, I want to provide him/her with the best start to life I can.  In which case, I want to know as much as science will tell me.

    That said, everything is a % chance test, including the NT scan.  It could be completely wrong in either direction.  If your gut says to pursue further testing so you can sleep at night, do it.  More than likely, you'll deliver a beautifully healthy baby this fall.  Keep us posted. 


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