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High Risk NT scan - Twins

Hello all,

I'm 36 years old and we are almost at 12 wks with twins (not identical, two sacs).  We just did an NT scan with blood work a few days ago (11 wks 3 days) and both twins came back high risk.  One is 1:45 and the other is 1:167.  When we found out we were having twins, it felt like a miracle.  Since the DR called to inform us of the results yesterday I have been going pretty much out of my mind.  I have seen a lot of posts from people who got bad NT results but, haven't yet seen any where there have been twins, both with less than comforting results. I have been up all night wondering how we got to this point.  We're being rushed in to see a high risk doctor on Tuesday along with another ultrasound. I suspect we will be told that we have the option of a CVS test but it will bring risk of miscarriage...likely higher due to twins (invasive test times 2). I try to keep telling myself that its more likely they don't have any issues than they do but, to be honest, it's not really working, I'm still scared and worrying to the point where I can't think about anything else. I just wondered if there was anyone else out there who found themselves in a similar situation.  
14 Responses
Avatar universal
Hi, im a first time mum and my world fell apart when i was told my baby had a 1:131 chance of downs. My husband and i choose to proceed with cvs testing at 13 weeks and have just had our 20 week scan which showed everything is going well with or son. I know things can be different with twins but i didn't suffer any side effects after the cvs. Sending you our love whatever you choose to do. X
Avatar universal
Remember this is not absolute but just the probability and I know it can be stressful. I was told my baby had 1:31 risk of ds and was considered high risk before being tested for anything. I declined invasive testing and was offered a blood test that can isolate baby Dna without doing cvs. Since the results were not going to make a difference I declined. My pregnancy is going on well. Read around and do what you think is ok but don't be pressurised into doing anything you are not comfortable with. There is also a tendency by the medical field to label 35+ years as high risks yet from reading other people's posts and sharing our risks are at par with everyone else. Be strong for your babies and keep us posted.
Avatar universal
I had twins 19 months ago and I'm currently pregnant with my third child. I refused all of those tests. I'd rather not know. Twins are usually always considered high risk anyways, as are 35+ years patients. I would stop stressing over it so much. If it happens, it happens. You can't fix it anyways, and you won't love your baby any less, so why stress over it? I had to see high risk doctors every other week, even though my twins were born as healthy and perfect as can be and I had no complications. So look at the bright side of things like I did! At least you'll get more ultrasounds :) Lol
Avatar universal
Thanks Cheekylady.  I have to admit, I'm stressing out about CVS testing or any test which will risk miscarriage because of the impact it can have with twins. I'm glad to hear that things are going well for you.  
Avatar universal
cher01, I will keep everyone posted.  I've been doing a lot of research over the past few days about the NT scan and how it predicts risk.  I've also done some research on CVS and amnio testing.  There are risks with these tests and I feel like I'm stuck between putting the twins and risk and putting my own uncertainty at ease.  I realized that I didn't mention in my first post that we had to go through an IVF procedure.  I feel like because of this process, the embryos which were implanted were probably selected because they met some criteria and were identified as the best chance of success.  Because my egg reserves were so low, I truly believe this might be my best chance.  Thanks for sharing your story.  If we decide not to do further testing, I will need to find some way of managing my anxiety and stress as I tend to overthink everything and am very analytical. I wish you all the best with your own pregnancy.
Avatar universal
thanks for sharing your experience mama_angelle.  I have to admit, I knew being over 35 made my risks higher but I wasn't really prepared for how risky things would be. We were told that the chances of twins was small so we weren't really prepared for what it would mean in terms of the pregnancy and further risk. Honestly, my big focus was whether the IVF procedure would work and then my only focus was making it to 12 weeks.  I saw these as my biggest hurdles.  I am very encouraged to hear that things went well for you.  I will be honest, it is daunting to think of having gotten to this point with all that was working against us only to find ourselves dealing with this piece of information that we weren't really prepared to receive as it was not well explained to  us ahead of time what the test was and what it meant.  I do enjoy every moment I get to see them growing through ultrasound images.  
Avatar universal
There is a way actually if you want to go for tests without the invasiveness. Its a new test that relies on taking a blood sample from you. In your blood has already your babies Dna that's get isolated and tested and am told its around 99% accurate. I think its called maternit28. I will check for you just to be sure. Check if its covered by your medical insurance but the genetic counsellor who told me about it said its almost as good as amnio without the risks and the invasiveness. It works on fetuses who are 10 or 12 weeks and you are within range.
Avatar universal
Its maternit21 and apparently can give you the sex of your babies as well:-).
1169162 tn?1331232353
I don't believe that you can do the materniT21 with twins, but it is worth looking into.

If you can't, then I would weight the pros and cons.  And ultimately, it is completely up to you and what feels right.

It does not sound like you have any intention of termination based on the results and therefore I would not suggest doing the CVS.  To me, the cons do not outweigh the pros - this test can be really uncomfortable (to me it was quite painful) and it carries more risk than an amnio.

But for many parents, knowing with more certainty that something may be wrong or that they are both healthy is helpful for so many reasons:  peace of mind for the rest of the pregnancy if things are fine and being able to properly plan if things are not (this can be important of the babies may need special care after delivery).  Because of this, I would suggest leaning toward an amnio or at least waiting until the anatomy scan and then determining whether or not to do the amnio based on the results of the anatomy scan.  But again, this is totally up to you and any decision is fine. Also, you didn't mention in the original post, was this the risk for Trisomy 21, 13 or 18?

I know there is no way to stop worrying but keep in mind that you have a 44/45 chance that baby A is fine and a 166/167 change that baby B is fine - it sounds less scary when you think of it like that.  I have known many women with much higher odds (1/13 or 1/3), go on to have a healthy baby, so don't lose hope.

hang in there
4583720 tn?1356807841
Did you have the ultrasound part of this test?  Did the docs look at the nose and measure the fluid on the back of the neck?  There are alot of aspects that go into this test,  but in the end its not conclusive.  What you went through is the first part of the genetic screens which mainly tests for down's syndrome.

Another blood test is taken at around 16 weeks to 18 weeks to test for the trisomy's.

You should know alot more about your risk factor when you have your 20 week ultrasound.  At that one,  the organs will be measured.  Also,  the leg bone will be measured. This could also be an indicator of DS.  

Even though statistically you may be at higher risk,  that really doesnt mean anything.

You dont necessarily need to know right now through amnio or cvs if your baby could have a genetic issue.  The follow up ultrasounds you will be having should let the doctors know if there will be any problems by 24 weeks.  This still gives you plenty of time to prepare.  The risk of amnio or cvs may not be worth it.  

Again,  the odds are still in your favor.

Avatar universal
Check online for  SEQUINOM CCM or just maternit21.  And make sure you get to their website. It apparently works on singles, twins and more and you can even get in touch with them and you will be able to ask any questions you want before deciding to go for it or not. Hope you get the peace of mind. You can also check for independent information about it.
Avatar universal
Maternit21 works on singles,  twins and more too.
Avatar universal
I just wanted to say I'm 38yrs old with baby number 5 important almost 29 weeks. I refused ALL testing my mom had amnio test done they said well ur babies perfectly healthy but now the sac broke ur babies gone....  I've always refused the tests bcuz this? Especially if ur going to keep them either way and the risks forvur babies ARE SO SLIGHT ;)  best of luck with whatever you choose not trying to scare you. But I don't care for those tests since family experience was so devastating
Avatar universal
Hello I'm 41 and 9+3 weeks pregnant by natural conception. Just had my first visit with the midwife and she took blood to do all sorts of tests and booked me for a nuchal scan. Any idea what "good" odds are? Thank you!!
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