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Anyone had a low-risk nuchal screening result but opted for diagnostic tests?

(17 Posts)
queenofeyes Tue 23-Sep-08 14:05:58

Hello. We've just the results of our nuchal translucency scan / blood tests back and the risk factor is 1/760. Although I should probably be relieved at such a (good, but not amazing) result, my anxiety is still through the roof about this - I had an amnio with my last pregnancy due to an extremely high-risk result and although everything thankfully turned out well, it has left me with an inability to trust the statistics and also the memory of what peace of mind the amnio offered me throughout the rest of my pregnancy. It's hard for me not to focus on the "1" rather than the "760". I obviously know there is a risk of losing a healthy pregnancy but I suppose I am just asking here if there are other women who decided to have an invasive test after a low-risk result. I'll be 35 next month, btw. Thanks.

Twiglett Tue 23-Sep-08 14:08:58

amnios are fairly standard in US

personally I would always consider the 1 in 200 amnios result in miscarriage a lot more carefully if nuchal results are over 1 in 200

In your case, wild horses wouldn't make me have an amnio but I appreciate that you have an over-riding concern .. maybe try meditation and exercise and dietary solutions to help overcome this understandable anxiety?

beeny Tue 23-Sep-08 14:08:58

I am 38 this year and pregnant.I had very low risk with last pregnancy i am due to have nuchal next week.I want an amnio but i feel bad especially if very low risk.I am confused and wld like to chat

dinny Tue 23-Sep-08 14:12:39

QOE, my risk this pregnancy was 1/750, so nearly exactly the same as yours - I am 35 now,

My other two pregnancies were slightly higher at about 1/1000, but not majorly higher

mw says it's a good result and the increase is due to being 35

I'm not having further tests mainly as the result that would indicate further tests are necessary is 1/300 or under

there was recently a thread on MN about nuchal fold tests - basically saying it is only one condition, there are a zillion other things that could happen to anyone, and why the obsession with testing for DS, will try and link it

midnightexpress Tue 23-Sep-08 14:13:21

I've had 2 nuchals and went from 1:8000ish with first pg to about 1:750ish with 2nd (partly because of my age - I was 39 with first and 40 with 2nd).

I was far more worried about the 2nd one, as the odds had reduced so much, but focussed much more on the fact that 1:750 meant that 749/750 would be absolutely fine, whereas 1:100 won't be with an amnio, iyswim.

I also insisted on having a 20-week scan (not given as standard in this area), which calmed my nerves quite a lot.

dinny Tue 23-Sep-08 14:18:16

one in EIGHT THOUSAND? God, was that NHS or private scan, ME?

queenofeyes Tue 23-Sep-08 14:19:52

Beeny, I am confused too. I also feel extremely guilty, particularly as I know what other people are going through with much worse results. But then I also know of a couple of people who have had low-risk results and yet have had a baby with Downs Syndrome and that is what is worrying me. As you are 38, has your hospital offered you the amniocentesis anyway? For what it's worth, I have found it very helpful to talk to the genetic counsellor at the hospital (again, full of guilt at ostensibly wasting her time) and she did not - as I had feared - make me feel completely insane. I can make an appointment to speak to a doctor about the possibility of having an amnio, and they have said they can bring my 20-week scan forward. Maybe you could talk to somebody at your hospital if you don't find your nuchal results offer reassurance? Or even before that?

dinny Tue 23-Sep-08 14:22:06

but whatever your risk, there is a chance, isn't there? even if it's 1/2000

beeny Tue 23-Sep-08 14:32:19

Thanks they didnt offer me an amnio cos of low risk last time makes no sense.Im sorry meant to help just decided to burden you.

queenofeyes Tue 23-Sep-08 14:33:18

Yes, Dinny. That's the issue, no? And that's the strength of an amnio. It depends, I guess, on how strongly you feel that you would terminate an affected pregnancy/your ability to cope/how much you can trust numbers/ how your anxiety will impact on the rest of your pregnancy and about a million other things depending on the individual. Maybe it's wrong to need certainty - I know a lot of people don't seem to and I admire them for that. And obviously, there are no certainties in pregnancy pr parenthood - as you point out, there are multitudes of things that can go wrong that you can't test for or shore up safety measures against. This is all clear. But this is something you can test for and I guess I fall very strongly - rightly or wrongly - into the knowledge-is-power camp. Not that this makes it an easy choice to make, hence my interest in talking to other mothers who had decided to go ahead with diagnostic testing despite a low-risk result.

queenofeyes Tue 23-Sep-08 14:49:10

Beeny, no burden! If you want to talk about it more, I'll be about.

citronella Tue 23-Sep-08 14:57:27

I did - Had an amnio for ds1 and cvs for ds2 even though bloods were low "for my age" - Don't know what I would have done if the results had come back positive for anything just needed to know one way or the other rather than stew over it.

Tapster Tue 23-Sep-08 15:11:00

Not sure if it helps but a nuchal is only a test for Downs/Turners/Edwards (if you get those results too). It does not guarantee that your baby will be "normal". There are lots of other non detectable problems that are possible - a friend has a daughter who has a serious genetic defect, no scan or test would have spotted it. There is an awful lot you could worry about but nothing you can do until your baby is born in many instances.

The risk of miscarriage is a real one though, would you be able to live with the miscarriage, did you conceive easily although it doesn't mean you will again.

I'm 38 and had a nuchal and blood test and got a very good result but I know it is still a probability.

jimjamshaslefttheyurt Tue 23-Sep-08 15:22:42

A recent piece of research has calculated that for every 3 babies with DS picked up by invasive testing, 2 'normal' babies are miscarried. Prof Nicolaides was interviewed talking about the research on channel 4 news. It was on their website last week, maybe it's still there.

That's quite a high price for knowledge. If you were going to terminate for DS it might be a risk worth taking, only you can decide that.

My son is another one with a condition that is not detectable and that affects him more than everyone I've ever met with DS. His school have many severely disabled kids. I haven't yet met anyone who knew beforehand. That's perhaps a side issue, but maybe puts the chances of finding out about disability before birth in context.

jimjamshaslefttheyurt Tue 23-Sep-08 15:24:27

You could go for more detailed scanning for information. You might have to pay, and it wouldn't be a definite, but there are further soft markers that can be seen in DS, so might help with anxiety. It would be an alternative to an invasive test anyway.

jem1969 Tue 23-Sep-08 15:28:11

If you live in/near London you could go to the Fetal Medicine Centre- my friend had a nuchal scan of 1 in 750 on the NHS and then 1 in 4000 at FMC. If you got a 'better' result it might put your mind at rest a bit more? It costs £150.

queenofeyes Tue 23-Sep-08 15:46:40

Thanks Jem1969 and Citronella. That's helpful to know. And Jimjimhaslefttheyurt - one option is relying on the more detailed scan at 18 weeks, so that's a possibility.
Of course I know it is a risk and there is a chance that I might miscarry and never conceive again and so grimly on - this is why it is not a decision my partner and I are taking lightly with a smile on our faces and a song in our hearts...

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