AIBU to want the results of a nuchal fold scan without bloods?

[WorriedWart]

I am prepared to accept that I may be wrong or unreasonable here - I am definitely hormonal which is probably why this is upsetting me.

I am 7 weeks pregnant with twins. My hospital offers the triple test for risk of downs syndrome (scan, bloods, age combined). I asked to have just the likelihood based on nuchal scan. This is because I have read the the blood tests are not accurate for multiple pregnancies - to the extent the some hospitals refuse to do blood tests for multiples, due to the risk of false positives, and rely on the scan instead.

My hospital has refused to do this and will not do the nuchal scan unless I agree to bloods as well. If I come back as high risk they will not tell me what the risk is on the scan alone. They say this is the most accurate way to do it and this is just what they do.

I know a girl who had a false positive with twins and then lost both babies during the amnio. I accept that the hospital consider the triple test to be more accurate but I don't understand why they can't just give me the information I am asking for and then I can make my own decision based on that information. It is perfectly possible to do a nuchal scan without blood tests and I could have it done if I paid privately.

I have to call the hospital back today to book the scan. Should I just give up and have no tests at all, or should I try harder with the hospital?

Any thoughts or experiences would be appreciated.

I thought the nuchal scan is done at 12 weeks and the triple test later, at 16 or 21? In that case you would get NT results before having to decide whether to take the triple test?

Hi worriedwart around here you have to have a private nuchal fold scan as the NHS only offer the blood test which is notoriously inaccurate on it's own. I had the test done privately and they gave me the measurement of the fold and the risk on the day of the scan. They also did bloods and the overall calculated risk was sent to be about a week later. If all you want is the measurement and those odds would you be able to arrange a private test - I think mine cost about £160 and it was pretty easy to arrange.

Winny, they the blood test on the same day here and won't book me for the nuchal scan if I haven't agreed to have the blood test done at the same time. Then they send you a letter saying you are high or low risk, without any other breakdown of the results.

why post this In aibu?

WW, I reckon if you agreed to it and then just asked for the nuchal measurement during the scan, you can then interpret that yourself (with the help of Dr Google). Even if the results of the triple test are high risk, you don't have to go ahead with an amnio. YANBU - they are your results and you should be entitled to the details to make your own, rational, decisions.

2shoes - hmmm, to find out if other people think I am being unreasonable?! (funnily enough). As in, I am feeling bloody pissed off that the hospital are being inflexible about this, should I just suck it up and accept that they know best or should I make a fuss about it?

Boggler, thank you, I think I will probably end up paying for a private scan. Just a bit annoying to spend the extra money at a time when we are saving for a triple buggy and similar expensive items!

2shoes why post that if you have no helpful advice for the OP.

I agree with generic, you should be able to discuss the results with the midwife or Gp (or google them of course). They are relatively straight forward to interprete anyway so they should be able to give you your result which could be e.g 3000-1 or something.

YANBU but I agree have both, get the sonographer to give you the NF measurement and find what that means yourself. If the danger is a false positive at least you can be reassured by a low risk result and decide whether to have further investigations with a high risk one. In the latter case they should be willing to look at just the NF results because they'll look at all of it in more detail. You don't have to have amnio even if it's offered.

YANBU. Do they do the nuchal fold scan first? You could just let them do that and then refuse the bloods and see what happens, they can't test your blood without your permission and you can always withdraw consent on the day once they've done the scan. If you think the bloods aren't accurate enough then it might be worth looking into the stats for the accuracy on the nuchal fold scan, I ended up refusing it because it wasn't accurate enough and I wouldn't have risked amnio anyway.

A blood test won't be accurate if you are having twins anyway. My midwife/doctor wouldn't even try it when I was pregnant with twins.

There are some very sophisticated calculators you can find on google which will allow you to re-adjust the risk with just your age and the nuchal measurement, so you do not need to have a private scan.

You can ask when the scan is taking place what the nuchal measurements are (I could see the measurements being taken and could read them off the screen), and if the sonographer can see the nasel bones on each baby which (if absent) is also an indicator of Downs.

When I had twins, they based it solely on the scan, the reason given being that for the thing in the blood (yes I am very techinical) that they look for is elevated anyway with twins. This was at an NHS hospital. You could book in for both and then talk to whoever is doing your scan, you know just a nice little chat while you are lying there, and try to get them to give you an idea based on the scan alone.

I wouldn't try to get the hospital to do it just based on the scan, its a massive bureaucracy but an individual might give you an idea.

If you then aren't happy with the results get one done privately. Not sure how this would work with timescales though.

Good luck with the twins, see you on the multiple site later

I have no advice but when I was pg with my twins they wouldnt do the blood test as it was a multiple pregnancy but did do the nuchal scan and gave me my risks based on it so I am suprised you are having to fight them.

Hope you can get it sorted x

Thank you for all your replies. I've decided that I am going to book to be seen privately at 11 weeks. The lady who works at the private scan place also scans at the hospital, so it have might have been the same person anyway! However, if I'm paying I'm sure they will give me the information I want, whereas I'm scared that at the hospital scan I will get the same "we can't tell you anything without the blood results"

I said to the midwife on the phone: "but some UK hospitals don't even do the blood tests for twins because the results are not accurate" (as bigjoeent and thighsthelimit have just confirmed!). She called me back and said the consultant has just said that no hospital should be telling patients the risk just based on the nuchal scan as they are "not following the guidelines". Sigh

Thank you for the suggestions for getting the measurements myself during the scan, that may well work but I am a bit too emotional at the moment to try and get the results by stealth or to face a lecture from the sonographer about the importance of the blood tests!

I just have a really strong feeling I want to stay away from the blood tests because if it comes back high risk I won't have an amnio but the 'high risk' element will haunt me all pregnancy. I did have it with my DS but that was because I trusted the results would be accurate then. Thank you again for your responses.

Just want to clarify for the OP that the triple test and the nuchal screening test are different things. The triple test measures three hormones/proteins in maternal serum only - no scan and is not revommended in mulitple pregnancies. The other form of non invasive first trimester screening involves calculation of risk taking maternal serum, nuchal fold, maternal age and occasionally, nasal bone measurement and tricuspid function. They are all fed into a computer programme which calculates the 1:x risk.

From scan many markers can be seen for abnormality in the first trimester but the whole package, so to speak, is considered the gold standard. I don't think it appropriate for a sonographer to make a judgement based on the scan but a consultant obs would. Perhaps that's why they won't just offer you the nuchal scan.

The combined nuchal and blood is more reliable than the old triple test so would you consider this? At the end if the day any screening test is just that - a risk assessment and not a diagnostic tool. The screening process is a tricky one as some will argue that if you won't proceed to diagnostic screening in the event of a high risk result (cvs or amino) then why screen in the first place?

My screening knowledge is a bit rusty, sorry, long time since I worked in clinic - but hope that clarifies a bit.

Thank you la Luna - that does actually clarify things a little... Perhaps some of the things I've read about bloods actually refer to the old triple test then? The midwife did keep saying "it's the gold standard" but that didn't really mean much to me.

I think that knowing the girl who lost both babies is really affecting my decision because I keep thinking: "her test was wrong so I don't want one". Not the most logical way to make a decision I know!

I will think further about this before I phone them back later then. Thanks.

ww, it is a hard decision. I was v fortunate to have 'courtesy' care with my pregnancies - one of the consultants I worked with was completing a scanning course and practiced on me! (I did have some early complications - she wasn't just playing!) and she was able to reassure me from scan only. My sister saw Kypros in Lindon and he was the same so, yes, privately you will get the service you want. Goes without saying doesn't it?!! Hope all goes well over the next 30 weeks or so!!!!

Round here they standardly do the nuchal fold scan and the bloods only if you push for it.

If you don't have them you will worry...if you DO and the risk is there then you will worry. All pregnancies have an element of worry so you need to bear that in mind bless you....I was later with my 2nd pregnancy but went into it in ignorant bliss as I wasn't a member of MN then!

I am thinking it's better to know less sometimes! Obviously forewarned is forearmed though...whatever you choose, you will be more than likely fine.

congrats on twins!

I paid to have the triple test before it was available on the NHS. My risk of my baby being Down's came back as 1/290 - to put that in context a friend of similar age (35) came back with a risk of 1/8,000! (Nuchal scans were not available back then AFAIK).

My DH wanted us to have an amnio - I refused. The guidelines recommended an amnio at a risk of 1/250, so we were sort of borderline. I just blanked the result and carried on, and everything was fine. DS now a strapping 19 year old!

The point of this story is, getting information is great when the result is pretty clear cut. Otherwise, it's just worrying.

Why do you want to know? Will you abort based on the nuchal fold scan suggesting there may be an increased likelihood of downs? Given that the result won't be able to tell you definitively either way I'm not really sure what the point is tbh. If you would continue with the pregnancy regardless why worry yourself over statistics?

Good points, especially on the lack of clear cut information. I know that I would not abort based on possibility of downs syndrome, so there isn't actually any point in having the test. I'm going to say no to the whole thing and try not to think about it again. Or any of the other things that could go wrong...

:) sounds like a good plan!