Is a nuchal fold scan more worry than it's worth?

[neenz]

I am 9wks PG and I don't know if they do nuchal fold scans in my area. They didn't during my last pregnancy.

But it seems to me that all it gives you is stress and worry. 20:1, 350:1, 1250:1, isn't it all just guesswork? Are the readings accurate or does it depend on the quality of the picture and the ability of the person reading the scan?

My friend got a 20:1 chance of a heart defect and all it caused was loads of worry until the 20wk scan when she was given the all-clear.

Can nuchal fold scans actually tell you anything for definite or do they always need further investigations if you get 'bad' results?

I don't think I would have an amnio no matter what my risk for Down's.

So is it worth having a nuchal fold scan if it is offered? I was offered one with my last pregnancy because it was twins but I turned it down. But would like to be more informed this time.

Any information appreciated!

[KFord]

Hi. I had my nuchal scan done privately (about £150), when they also did a blood test which makes it much more accurate (or so I was told I suppose). My results were OK (the blood test improved the risk so that it was something in the 1 in thousands). The only reason I had it done privately was because at my local hospital they only do the scan between 12 and 14 weeks when I was on holiday, but the private consultant fitted me in the day before my holiday. the scan was much better quality than my last hospital one (this my second child).

[gingerkirsty]

Hi neenz

I am now 36wks pg and we decided against having a nuchal scan. Our reason for this decision was that we were not prepared to accept the risk of miscarriage that an amnio or CSV (I think that's what it's called!) carries so we decided that there was no point in having the nuchal scan.

In our area we would have had to pay for it privately too, not that that affected our decision.

I know we agonised over it but when we made the decision we felt much more relaxed, and are now just hoping for the best!

HTH and good luck with your pregnancy!

[tiredlady]

They don't tell you anything definate,but are just able to give you some odds.

I think if you are someone who wouldn't have an amnio whatever odds you were given, there may not be a lot of point you having one.That said, even if you wouldn't do anything with the result, some people might want to prepare themselves if they knew there was a high possibility of having a child with some problems eg reading up about things

[BusyMissIzzy]

It's an indicator, but not a sign that something is definitely wrong. They would always need to do further tests to give a more definitive answer. I've seen lots of women on here who have had "high risk" results from the nuchal scan and then had perfectly healthy babies.
Like any test, it's entirely up to you, and depends on what you feel would give you most peace of mind.

[shonaspurtle]

They can't tell you anything definite - they are a screening not a diagnostic tool (and in that way there are no "false positives" as there are no positives or negatives full stop).

They can only really help you decide whether to go for the diagnostic test, amnio or cvs, in so far as you might decide to weigh up the chances of miscarriage vs the chances of the test finding a chromosomal abnormality.

So, I guess if you wouldn't have the amnio no point really. I did have the nuchal fold scan when I had more or less decided I wouldn't follow up with amnio, but in my area at the time there was no automatic 20week scan and I would have got this extra scan, to check heart etc, if I had been "high risk" after screening results.

If I get pregnant again then the 20wk scan will be available this time, so I don't know what I'll do. On balance probably go for the screening which isn't that logical.

[neenz]

Thank you very much for all your replies.

If they offer me a nuchal and I say no, can I have a normal dating scan or would I get no scan at all?

[shonaspurtle]

I think you'd get a normal dating scan. The scan's purpose is far more than just taking that one measurement, they'll just not do that part of it.

[Pingpong]

We don't get offered a nuchal scan in our area. With DD I declined the triple test. This pregnancy my DH persuaded me that I should have it. It came back as 1:55 and I felt having started the screening process I had to find out for definite what was going on so I had an amnio - not for a termination but so that I would know one way or another.
I understand that the scan and the blood test give a better 'combined' result but I've heard that the triple test is only 80% accurate. The worry and stress that the result of the triple test gave me was unbelievable. I truly wished that I hadn't started any form of screening.
In the end the amnio results came back fine but boy was it stressful.
If you wouldn't have an amnio then don't bother having a nuchal scan would be my advice.

[rachelfruitloop]

I agree with Smac, if you wouldn't have the amnio then don't bother having the Nuchal Translucency test. I'm 22 weeks pregnant with DS2, and hadn't thought about what would happen after the Nuchal test, hadn't even discussed it with DH. Because I'm 35, I thought it was something I should just do. I had the Nuchal Translucency measurement and a blood test, and though I was told that the blood test looked great, when they factored it in with the Nuchal fold measurement and my age, I had a risk of 140:1 and am "borderline" high risk. Whilst pregnant with DS1 three years ago, my risk was 2600:1, so quite a difference. I didn't expect that I would fall into the high risk range with this one, and when I discussed it with DH, the risk of a problem with the baby was .7 in 100, where as the risk for miscarriage from the diagnostic tests (amnio or CVS) would be 1 or 2 in 100, so that didn't seem like a good idea to either of us. Also, I wouldn't have been able to have an amnio until 18 weeks and I was already at 14 weeks when I got the Nuchal Translucency test results which they said was the latest they could do CVS. I just thought, what if I get the result that the baby has something wrong with it? Well, I know personally I would not have been able to have a termination. So the whole test did nothing but make me worry. I'm still worried, though the 20 week anomaly scan didn't show anything abnormal. I just figure, there are so many things that can be wrong that can't be detected before birth, so I shouldn't place much importance on these numbers. I wish I had thought more about what action I would take if I was high risk beforehand, because I would have just skipped the Nuchal test and saved myself a lot of worry.

[neenz]

Thank you Rachel and Smac, you have put into words exactly what I fear about the nuchal scan.

I definitely wouldn't have a termination if I was having a Down's baby. Perhaps if I was told I was having a baby who had no chance of living past a few days, I might consider it, but even then I would just go ahead hoping the doctors had got it wrong (they sometimes do). And I wouldn't find that out without an amnio and I am not going to have one of them, so no point in having the nuchal scan.

It makes me feel a bit annoyed actually that they offer these scans without explaining exactly what it entails and the fact that they can't actually diagnose anything. It causes so much worry unneccessarily and seems to me to be designed to get rid of disability in our society which I find offensive to disabled people . But that is another debate entirely!

[MimsyStarr]

It all depends on what they see on the scan. It made a huge difference in my case. At my 12 week scan the nuchal fold measurement was 7mm (way abnormal) and other abnormal features (soft markers as they call them) were noted.

A fetal medicine consultant saw us straight away and did another scan and told us features were consistent with Edwards syndrome - Trisomy 18. We did a CVS to be 100% sure but the consultant was so sure even at her first scan she said she'd bet her house on it.

So knowing this at 12/13 weeks meant we had a difficult choice to make (we chose to terminate), but at least we didn't have to deal with the pain of a late miscarriage, stillbirth or giving birth to baby who had no hope of living much more than a few hours/days. The termination was bad enough.

T18 is uncommon so nobody should get worried but my answers to the OP are:

• yes, sometimes they can tell you a lot from a scan, even though only CVS/amnio is definitive
• you have options at an early scan and even if you wouldn't terminate you can prepare yourself and others.

[OrangeAnge]

I have a similar story to the last post. I was offered the nuchal fold scan as routine and didn't question it at all. It was my first pregancy and I was happy to have a thorough scan.

We were thinking about Downs but nothing else. At the scan unfortunately they detected anencephaly (a severe neural tube defect). I doubt very much this would have picked up so early at a normal scan. It was an awful decision to make but we decided to terminate. I too, would rather have made this decision at 13 weeks than have a miscarriage or a stillbirth.

Again, anencephaly is quite rare so I don't mean to worry you by my reply either. But there are other things they can detect other than Downs at these scans. I would rather have all the information available to me, rather than not know.

[vickyob]

Something to bear in mind is that if your area offer Nuchal fold tests if when they are doing the dating scan if it shows as larger than normal they are obliged to tell you. I had mine on Friday and my notes said I didnt want it (I did) and it measure very big so they told us but she did say we didnt have to do anything else. Also it can be an indicator of cardiac and other disorders not Just Downs. Just bear it in mind Im 29 fit healthy and this is pregnancy no 4 I wasnt offered this with the previous ones but now Winchester offer it to everyone.

[thislittlesisterlola]

I feel its a very personal choice. I am still in two minds even after having it done and I was such bit of a mess until I knew. If there was a next time I probably would have it done but privately so results would be quicker. I found the wait the hardest.

[givecarrotsachance]

We had our scan today and have been given no results yet - and were told it could take up to 2 weeks which is really tough.

However, we were given loads of information and I had to sign to say I understood it all before they would do the nuchal scan so I'm surprised this isn't being done in all areas.

I'm finding this wait really, really tough. We've gone through an early bleed/threatened miscarriage, worrying about some potential genetic problems (this scan seems to have ruled them out though) and now this - I just want to move on and enjoy the pregnancy - and tell our DS(5) about it whereas at the moment we've decided to wait for the results before we share it with him.

How I'll deal with a high risk result I just don't know. We entered the process intending to go for an amnio only if high risk and then to abort for a positive result, but, neither of us have any idea how or whether we could go through that if it came to it (supportive as I am of the right).

On balance, I think the scan is useful and important, and in orange and mimsy's cases, while devastating and I'm so sorry you went through that, it gave them the option to avoid the pain and distress to themselves and their baby that a baby dying soon after birth would go through. Of course, a Down's result is slightly different and probably aborting is an entirely selfish choice - but I still feel it's vital to have that option. But yes, it is truly awful waiting.

[rachelfruitloop]

Thanks to Orange and Mimsy for sharing. Your stories make me feel grateful that nothing was obviously wrong in my scans and I feel that I can stop worrying so much about it. I'm so sorry you had to go through such a nightmare.

[TottWriter]

For what it's worth, I was 20 when I had my DS (very unplanned!), and at the first scan I had, I was given a nuchal screening without having been asked if I wanted it or not. His nuchal fold was wider than it should have been, but we declined further tests, as the risk of there being anything wrong was still far far lower than the risk of miscarriage, and having a termination was out of the question for me, after going through all the soul-searching I had in deciding to keep an unplanned pregnancy. I spent most of the rest of my pregnancy wracked with worry, and it wasn't until he was born that my worries abated.

This time round, (I've since moved and I'm so in a new Health Care Trust)I declined the additional tests, thinking that they meant literally the sampling and blood tests, and was stunned when the scan didn't involve all the measurements of before. It makes sense when I think about it, but there you go. I feel a little cheated for having misunderstood, because having the additional screening would have warned us if there was anything seriously wrong. I guess I'm more annoyed at how I was treated last time though, as it led to the assumptions I made this time.

On balance, I guess I would have opted for the nuchal screening, but not had the additional tests unless something really serious had been highlighted. It can add stress to a preganancy, but so does the worry of not knowing at all. In the end, it comes down to you to make the choice, but don't just rule out the scan because you don't plan on having the sampling done.

[OrangeAnge]

I didn't realise that the waiting times were so long. A couple of weeks must feel like an eternity, so I do feel for you in this position.

I'm in London and come under Kings College Hospital. The blood test results for my second pregnancy came back within a hour or so, which I thought was standard. I was lucky it seems.

As has been said before, I guess it is a personal choice whether you go for these tests and screenings. And try not to stress too much whilst you are waiting for the results - easier said than done I know!

On the bright side though, most scans do come back showing nothing abnormal and in my case, the second pregancy has been without any problems like the first.