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Bad NT Scan for One Twin–HELP

Hey Readers,


One of my best friends lives in the Netherlands is about 13-14 weeks pregnant with twins.  She’s had a really hard time getting pregnant, has had repeated blighted ovums/miscarriages…you name it.  This was her 3rd IVF cycle and she finally got pregnant with twins.  
Everything was going really well until she went for the NT scan.
Here are her results:


I had one child with a Nuchal translucency (NT) of 1.6 and this one was considered low risk 1:1800.  The other one has an NT of 4.0 which is actually very high risk…sadly.  But, what can I do.  I got an estimate of 1:5 for Down’s and this is with the NT and the blood combined. 


Can anyone share their experience with a bad NT reading/bloodwork?  Did you do a CVS and/or an Amnio?  Did you have the child?  Outcome?


She’s going ahead with the testing, I believe soon.  It will tell her more and she can elect to do a reduction at that point if she wishes.


I am so very sad for her and her husband.  I just want to hear some voices who have been there, if you could leave a comment.
Or just wish her well.  Thanks.

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13 Comments

  • Reply Verity Foxy December 14, 2011 at 3:12 am

    I had similar results, one with low risk, the other with a higher risk, although mine wasn’t as high as your friend (mine was 1:201). But I was reminded that that number is still telling you that there are more chances that the baby will NOT have Down’s.

    We came to terms with that possibility and opted not to have an amnio.

    We had our twins and neither have Down’s. Even if one did, it wouldn’t have made a difference, I think.

  • Reply CJ December 14, 2011 at 3:47 am

    Personally, I’d skip the amniocentesis because she’s high risk. I would educate myself on Downs and consider adoption over termination, as again, the pregnancy is high risk. If she’d like to find blogs about parents raising kids with DS, send her to my project blog. It lists a ton. I can also hook her up with a family in the Netherlands, if she’d like. http://WWW.thet21TravelingAfghanProject.com

  • Reply Anonymous December 14, 2011 at 5:22 am

    My understanding is that the blood work may not be as reliable with twins…have her check on that. I think that I remember that from my twin pregnancy. Also, I know the stats on terminating pregnancies of babies with DS…the percentage is high. I am totally not coming from a judgy place here…I would encourage her to talk to some moms of children with DS. We have come a long way in our understanding of people with DS…kids with DS today are actually taught because we know they can learn…their lives are so much better than most people think…they read, have jobs, friends, etc…of course, everyone is an individual, so I don’t mean to group every person with DS together. But, I would just want her to act out of education not fear. Please know I am not saying this to be controversial or judgy! I 100 percent think everybody has a right to choose what is right for them and their situation. I know it has to be a very trying and scary time for your friend…I am sending her hugs!

  • Reply Anonymous December 14, 2011 at 2:25 pm

    My BFF had identical twins. One had NT of 6 cm plus some other indicators of trisome 18. The other was fine. She did CVS and everything came back negative. Had babies at 36 weeks and both of the boys are great. 2 years old now.

    Alexandra

  • Reply Anonymous December 14, 2011 at 2:34 pm

    I just read the other comments. Abnormal NT is not only indicator for Down syndrom. There are many other worst abnormalities were babies do not survive and it might also be worry for nothing.
    If you would like to read something moving about having baby with DS go here http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

    and then click on recent posts.
    I hope your friend will find a piece in whatever decision she and her husband will make.
    Alexandra

  • Reply Anonymous December 14, 2011 at 8:02 pm

    Thanks so all of you for your helpful comments.

    From Holland

  • Reply Anonymous December 15, 2011 at 2:37 am

    We had bad nuchal test for one twin also. We did the cvs and it came back positive for downs, for many reasons – most importantly the health of the other twin – we reduced. The second baby carried to term and is healthy and happy and we are so grateful. It was an excruciating decision, but one we feel was best for our family. Please let her know that we are all pulling for her and hope that her results come back clear, and if they don’t, what ever decision she and her husband make knowing that you love and support them is the best thing she can hear.

  • Reply K December 15, 2011 at 3:54 am

    I don’t have any “been there, done that” stories (yet) but I’ve been scouring the Internet on this topic lately and what I’ve found is that tons and tons of women get scary NT readings, and then go on to deliver perfectly healthy babies, even women with NT measurements of 6 or 7, so much higher than your friend’s baby. I have a friend who was just given very dismal NT numbers and went on to have an amnio – baby is chromosomally perfect. You could also google the blog Musings of the Other Mother (sorry, on my phone and can’t link easily). They went through the same thing – healthy baby. There are lots of reasons to be hopeful while she waits for more concrete results.

  • Reply Jen December 15, 2011 at 7:32 pm

    No advise or experience, just lots of support and hugs for a hard situation.

  • Reply Anonymous December 16, 2011 at 2:43 am

    Family member had a singleton with high NT at an early appt — can’t recall what week it was. They were told 95% chance of a major chromosonal problem. Got the CVS done, and that did not show any abnormalities; they were then told that then there most likely was a serious heart issue. So they waited until whatever week it was that they could do the test for that — no heart problem. They were told there is still a large chance something is wrong that they just can’t test for. Goodness it was hard for them. They had the baby. She’s a happy, healthy toddler. Now, they don’t believe they were misled by the doctors and feel they got good care, just that they fell into that lucky 5% (based on their numbers; I of course don’t know about your friend, hers may be much better.) But also there is the difficulty in the stats that many choose to terminate when faced with those #s, and then they often don’t know if there would have been some issue (some they do test for after). Not sure that is helpful — but you asked for experiences…

  • Reply Ruby at Breathedragon December 16, 2011 at 4:37 am

    Getting my “first look” test results was literally the worst experience of my pregnancy. I had a 1:170 chance of Down’s and everyone at the big fancy hospital was simultaneously sending off crazy alarm bells (“Your test is positive for Down’s, you may want to consider this and this and this”) and telling me they couldn’t advise me one way or the other about getting the amnio. Though I did not wind up doing the amnio, if my numbers were what your friend had, having gone through the worry and waiting I would say just get the CVS or amnio done ASAP and then you will know what you’re dealing with. Having it hanging over your head is the WORST. It kills the joy of being pregnant. Most of the time these “positives” yield healthy babies – in my obsessive message board trolling, i found that the kids who were born with Down’s were almost all 1:2 at the first look test. Good luck to your friend.

  • Reply s December 19, 2011 at 2:52 am

    hi! those numbers were about the same as ours around 12-ish weeks for our twins… my question would be- are the twins fraternal or identical? if they are fraternal, downs could be an issue, but if they are identical, our peri said that it was HIGHLY unlikely that one would have it and the other not (have it)… that being said, if they are identical (ours are), our grossly different nt scans was a precursor to twin to twin transfusion syndrome (ttts). if this is the case, your friend must be monitored VERY closely. ttts moves swiftly and it is ugly. sonos are recommended every week. there is a website for ttts- and 15 questions that should be asked. our girls were born at 25w4d. it was a long road in the nicu, but they just celebrated their first birthday a week ago. best of luck to your friend… lots of love being sent her way <3

  • Reply poppycat December 20, 2011 at 7:34 pm

    Hey puffer, I had the same. Bug was 1:600 and Button was 1:64. I freaked the F out. We got a lot of info and advice from a genetic counselor and ended up getting and amnio for Button but I was horrified that I would miscarry one or both of them because of it. I was so worried she might have downs but she is just perfect in every way. Shes the only one who can decide what is best for her and her family but maybe knowing how it turned out for us can help her make that choice. Send her my best wishes. Its a terrible thing to deal with.

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