Anyone opted out the Nuchal T scan?

[take3]

Just wondering as if we had it done and got a high risk result, we would choose not to have an amnio.... so I can't see any point in having it. Would just worry the whole pregnancy. Wouldn't they pick up any major abnormalities (though I know it is possible to miss Down Syndrome at this scan)at the 20 wk scan?
Just trying to think it through.

We opted out for much the same reasons as everyone else, having had the midwife and the NHS booklet remind us that we couldn't unknow the result, and if we didn't want an invasive diagnostic test, we would have to live with a higher-risk, higher-stress result for the rest of the pregnancy. 19+1 now and still happy with our choice, but we got a massive (and totally out of order) bollocking from a different MW at our 16-week appt, who went on and on about how important it was to know if your baby had Down's because it might need more monitoring and assistance in late pregnancy and labour. Completely ignoring the fact that we would not have amnio or CVS anyway, so there wouldn't have been any knowing in our case!

She made us feel like absolute idiots, so it's nice to hear from other who have made the same decision. I would just say, if you do choose not to have the screening tests, be firm that that that is your choice and that's the end of it. Most people will be respectful though.

I declined the NT scan (had the rest of the 12 week scan though) and my MW just asked why and nothing more was said, even at the scanning clinic. I wouldn't have had a CVS/amino or terminated for Downs anyway so decided I could do without the extra worry of a potentially high result.

We had it with #1 and #2, not because we'd do anything further (wouldn't have an amnio or terminate in any circumstance) but because we wanted to be ready in case there was a problem.

However, the NHS scan and bloods combined test at 12wks with #2 came back with a high-ish risk: high enough for them to offer us an amnio. I actually found it almost offensive, since our risk was still only 1%, and there still seemed to be this obsession with checking the baby was healthy and 'discussions' about what to do if it wasn't: quite a disposable attitude to life I felt. Anyway.

We went and had a private very detailed scan following this result (mainly because we were about to move abroad and didn't then have obstetric care in our new country sorted, so wanted to know asap if there was a problem) and #2 looked totally fine: my risk dropped to around 0.03%. Apparently the reason the NHS risk was higher was because I naturally produce weird amounts of pregnancy hormones and this skews the result (since all the combined test looks at is nuchal fold - which was small - and bloods). This is just a weird thing my body does, and when looked at alongside the 'soft' markers (nasal bone etc), its importance is very much lessened.

So basically we have decided not to bother with the combined test if we have a #3: my bloods will still be 'bad' and I'll be older which will increase the risk anyway. So we know that we'll get a 'bad' result and come under renewed pressure to take further action.

Guess I just want to say that the test can be pretty inaccurate, even if you chose to do it, meaning that we no longer see the point.

I have opted out both times for the same reasons as most, being that I wouldt terminate or have amnio. This greatly backed up by dp whose mother has worked a very long time alongside children and adults with downs sindrome and other disabilities also providing restbite. He is also of the same opinion as myself.

We've opted to get it done (scan is in 2 weeks) so we have an idea of the risk. I cannot imagine choosing to end my much longed for pregnancy and I have already told DH I would be very loathe to have the amino due to the risk. It is was purely down to me, I would probably not have it done but DH would rather know the risks so I respect that. I certainly wouldn't be thinking of terminating for Down's but if there was something that put my life at risk, it's something we'd need to discuss as a couple.

Can I just say that the test (at least in my area) is not just for risk of Downs, it is also for risk of Edwards and Patau syndromes which are rarer but much much more severe syndromes (babies with these often die before or shortly after birth). A high NT result may also be an indicator of other non chromosomal issues (eg heart defect) which means they may want to do additional or more detailed scans at 20 weeks.

^ that's why I'm getting mine done minipie. Edward's sunstone would be a very different prognosis from Down's a not such a straightforward decision.

I opted out, nothing was said and everything was checked at 20 week scan. I can understand why people have it done but my view was the same as yours. Do what ever is best for you

I opted out too, for this pregnancy and for my DS. I didn't see the point as I wasn't having the blood test and I wouldn't have an amnio, I wouldn't terminate for any disability no matter what it was. The MWs made no issue of it last time and they haven't so far this time.

Yes I'd like to add, in light of minipie's and Cailin's posts, that I wouldn't have terminated for any disability, not just Downs.

For me it wasn't just about termination. if my baby had one of the more severe syndromes which are incompatible with life, I would have found it much harder to find that out at 20 weeks than at 12 weeks. So, even if I wasn't going to terminate for any result, I would still have wanted to know earlier on, to give me more time to prepare myself and before I had started to build an idea of what my child might be like (if that makes sense).

I've had the NT measurement and the bloods purely because of my age (37), not so much for Downs but for the other life limiting disabilities, hand on heart I'm not sure I'd continue a pregnancy if I knew my baby would suffer for a few weeks and then die.

I'm also the kind of person who likes all the facts, fortunately they came back clear which has taken a massive amount of worry off my shoulders which is a huge benefit to the baby but if the results were higher risk then I'd have liked to know what I was facing so I could read up and be mentally prepared for all eventualities when she arrives, maybe I would need extra monitoring? would there be anything specific I'd need to buy and have in place for when she arrives? maybe there could be drugs during pregnancy to improve my babies health etc?

I opted out for similiar reasons to others, I wouldn't have the amnio and I wouldn't terminate.

I also have a family member who has Down's Syndrome, who is a happy, much loved person with a great quality of life, thanks to her great parents. There are some serious health issues but I know she'd rather be alive with health problems, than have never lived at all. So for me, although I wouldn't wish it on anyone, I know it would be ok, and I'd love my baby, whoever they are.

On the hand I can completely appriciate that knowing would make it much easier to cope. I like to be informed and prepared.

I can see both sides.

My reasons are very similar to minipie.

I didnt have it partly for the reasons stated but also because it is pretty unreliable anyway. I figured Edwards/ Patau would probably be picked up at 20 weeks anyway. Yes having a termination then would be awful but its far far more likely that Nuchal and bloods would worry me over nothing. In any case if the Nuchal is really abnormal you can ask to be told.

It wasnt offered with dd1 so I looked into whether to have it privately. The research I did made me realise I didnt want it, free or not for dd2.

I think one of the dangers of these tests, is that if results come back clear, it's very easy to think you're 100% safe for ANY sort of disability. A sort of "perfect child guaranteed".

Obviously anything can happen at any stage, and there are dozens of undetectable things that can happen in the womb to cause a baby to be disabled in one way or another.

I feel like, because I haven't had the "everything's fine" I would be more ready than someone who had had the tests, were one of these unforeseen things to occur. I realise this is just from my own point of view, btw.

For the same reasons as Minipie i would always have every test available.

My much wanted DD in my first pregnancy was also diagnosed with a condition incompatible with life so we chose to end the pain and suffering for both of us sooner rather than later.

I wouldn't say I opted out as such more that I decided, along with my mw and DP that our baby was our baby and further tests with higher risks wouldn't have been for us.

we didn't have any tests done, because we knew we wouldn't act on them (wouldn't have a termination). And I wasn't prepared to take the risk of an amnio. Dh felt same way, we would deal with what ever there was.

In retrospect, if anything had been wrong, it would probably have been good to have some preparation.

But with dd2 our 20 week scan picked up a heart problem. I ended up flying back to uk, family spent 4 months split over 2 continents. I had scans every week and was all on red alert etc. By the time she was born, they had decided there was nothing wrong, and we had a normal birth etc. It was an awful time, expecting baby to die inutero at any point, and then it was all a false alarm.

Also now, I have a niece with massive heart problems undetected before birth, a niece with a huge facial birthmark, and my goddaughter's sister was born with lifelong medical problems. All are gorgeous fabulous people. I struggle with the idea that if those tests are fine, then we think eveyrthing is fine.

It is such a personal decision though

I had a scan on Monday and we were asked if we wanted another in a couple of weeks to have the tests done. We were quite seriously told only to have it done it you wanted to know if you were high/low risk and to think how you would react to that. And then if you were prepared to have the amnio.
Seems lots of people have the tests as standard as part of their scans but as I don't have that option I don't think we are going to do it everything is fine and I am considered low risk. Its good to read others are making similar decisions and it seemed like it was standard.