[HairyMaclary]

Saw my ob for our 12 week checkup this morning and when we saw him he hadn't received the report from our NT scan yet, he just had the films that we brought in. He looked at them and said everything looked fine, nuchal measurements (there are 2 since we're having twins) were low risk. We couldn't have the blood test because we are having twins since the hormone levels would be very high anyway. Because I have a history of having a dodgy cervix (needed a stitch with DS1 but was fine with DS2) and the twins share a placenta, we are going to need fortnightly scans until about 32 weeks. So when we left his office this morning we knew we were considered to be a "high risk" pregnancy but so far everything was going as well as it could.

Then I got a call from the Ob this afternoon to say that he got the report and I am officially classified as high risk for Down Syndrome based on the results, but only just (I think my risk was around 1:280/290 and the high risk cut off is 1:300). He said that if I'd had the blood test it most likely would have taken me out of the high risk category since the NT measurements were fine, but since I couldn't have the blood test it is mostly based on my age. No soft markers for DS were picked up in the scan either.

He ran through our options and the risks (amnio vs CVS), and the risks are higher for amnios with twins because they have to take a sample from each sac. I asked what happens if we choose to do nothing. He said that is our choice and is fine too. He said that I'll be having so many scans that if anything is picked up we can deal with it then.

I called DH and we talked about it. We both agreed that as the risk of miscarriage for either procedure is higher than our risk of the babies having DS, we wouldn't go ahead with the tests. Also, we would be highly unlikely to terminate anyway based on the results. Plus nothing else is pointing towards DS aside from my age.

Has anyone else been told that they were high risk for DS based on the 12 week scan and opted not to have further testing? I'm not looking to be talked into or out of our decision because we're happy with our choice, but it would be nice to talk to others who have been in the same situation.

[redmum77]

Hi there,
Its not nice to deal with uncertainty I was deemed high risk with this pregnancy from the 12 week blood test. Scan was all fine. By high risk though I was 1:85. We decided to have a CVS at 14 weeks. It came back clear but I leaked amniotic fluid and nearly lost the baby. Worst night of my life! So I heartily support your move to leave things be, especially as your results are only age related (thats what mine would have been on age alone).

I sympathise with the need to be comfortable with your decision, there is so much to think about. I hope they gave you a good genetic councillor, ours was great and very non-judgemental. I hope all goes well with the rest of the pregnancy

[katbalou]

With DS3, I had a high risk NT result of 1:5. After the scan, my results were on a par with normal for my age at the time (42), so I knew I classified high risk already. But when the bloods came back, it made the picture far worse.

It threw us for a bit of a loop, but after we discussed it, we realised that any diagnostic test results wouldn't change our decision to go ahead with the pregnancy, so it made no sense (for us) to put the pregnancy at risk to find out.

It was a very smooth pregnancy in all physical respects, but a little fraught mentally. I just did a lot of research, and was quite comforted by that.

I remembered posting about it at the time (it was the way I found EB actually) - and we started a thread about it, which ran for a while - but I'm not sure if it still exists?

Good luck with your pregnancy, and try to relax.

This post has been edited by katbalou: 14/01/2013, 06:18 PM

[Super Cat]

Sorry to hear you're going through this. I know exactly how you're feeling right now. We got a risk of 1:114 with DS. My maternal age was 39 so, it was supposed to be high but it was still higher than we expected. We opted for no invasive tests, only more scans. That decision bought us a lot of grief from some people who really couldn't understand why we would not have the amnio. Most people were really supportive though but we did have to distance ourselves from some people for a while.

Our situation will of course be different to yours as Ds was a singleton pregnancy and he ended up being IUGR. But, in the end he did not have Down Syndrome. I started a support group back then in the 'Pregnancy Tips and Questions' subforum because I couldn't find anyone else who didn't go on to have an amnio or CVS. The group has largely died off I think but there may be others still out there who can add support.

[livvie7586]

OP, i thought (and don't go quoting me on this) that NT results with twins were really to be taken with a grain of salt, that they weren't as reliable as with singletons, and were usually skewed to have high results?

someone in the twin forum would know more

[HairyMaclary]

OP, i thought (and don't go quoting me on this) that NT results with twins were really to be taken with a grain of salt, that they weren't as reliable as with singletons, and were usually skewed to have high results?

That might be to do with the blood tests, which is why my Ob didn't order them. The results I'm referring to are the measurements of the fluid at the back of the neck, both of which came back in the low risk range.

Thanks for the replies. It is good to know that we are not the only ones who have made that choice. After I posted this I got a call from my SIL and had a chat to her about it. They were also considered high risk since she was 40, but opted not to have any testing done either for the same reasons as us. I also spoke to my mum and a close friend, both of whom felt that we were doing the right thing. So at least we have support around us.

I have to admit that I'm not too worried about it. As you can see from my sig, we know exactly what it is like to have a child with special needs and we also know that the odds don't guarantee anything. His condition has an incidence of 1:20,000 and occurs randomly - someone has to be that one and it turned out to be us! Having identical twins is also a random, spontaneous thing that happens in 1 in 300 pregnancies and of course we are the 1 there too! I guess we are going to have to play the odds again and hope they go in our favour this time.

[Cyaira]

Hi Hairy, consider coming and joining us in our High Risk NT results support group: http://www.essentialbaby.com.au/forums/ind...30&start=30 lovely bunch of ladies.

Reading through the threads might be helpful.

I had a risk of 1/294 and opted for no amino but we are being monitored with extra ultrasounds. All looks normal so far, almost 31 weeks. Singleton pregnancy though.

[scutterbug]

I got exactly the same risk assessment as you OP at our 12 week scan and decided to do nothing. It is so borderline and we knew that we wouldn't do anything anyway. As my OB said my risk based on maternal age was 1:109 so the risk had really gone down even though it didn't look as good as it could.

A few friends thought we were crazy not to get further testing and while I did consider it carefully for about two hours my ever optomistic DH told me to remember that 1:290 means exactly that - 289 babies will be fine and if we do get the 1 then we will deal with it when it happens.

At the 20 week scan the NT results look perfect. I'm 24 weeks now so time will tell.

[hanz33]

I wish you all the best

[imamumto3]

my results were high with my first, it was the bloods that threw the result out, the scan looked fine. the dr at the ultrasound place said she wouldn't advise further testing as it had been so hard to conceive in the first place, it wasn't worth the risk