Nuchal Fold testing

[banburycross]

I already have one child with sn and am now newly pregnant with my 3rd. I am not big on antenatal testing and am quite happy not to have a nuchal fold screening. Dh thinks we should. I did say to him that I would respect his wishes and we would agree on what to do next. Guess I am just a little surprised as I did not think he would want me to have the nuchal screening. I know it is a check of the nuchal fold and blood tests.

His reasoning is that we do not want to be worrying for the next 8 months or so whether anything would be wrong YET I know we would do nothing if this test came back high risk - no amnio, no termination.

I guess I like my ignorant stand at times - if ir came back high risk I would be worrying for the next eight months or so.....

Anyway thanks for reading my ramble.

My views on the nuchal test have changed since having my DD who has Down Syndrome. I had the nuchal test and it had a risk of 1 in 3120. It is only since her birth that i have been told that the standard nuchal test is only about 75% accurate and also thinking about it, it is only giving a risk factor, not a definite outcome.

I think that the nuchal test is a bit of a waste of time as a result, as babies like Tanzie are born without being picked up, and then others have high risks & their babies are in fact fine (I know someone who was given a 1 in 4 risk and had a CVS and baby didnt have DS but she risked m/c by havign the CVS procedure).

I think that if you would be prepared to have further tests such as an amnio then yes it is worth having a nuchal test, but if you arent then there is no point as it doesnt actually tell you anything in my opinion

Good luck (& congratulations too)

Sharon x

I personally know more people who have had a worrying pregnancy because their risk came back high - when there was nothing wrong (or nothing seriously wrong) with the baby than have had anything serious picked up.

Does your dh realise that could happen? It can turn pregnancies into very stressful affairs (which lets face it when you already have a child wtih SN pregnancies and babyhoods are anyway).

Just to add (as reread my post and it might be misleading) even if I had had a high risk nuchal result I would not have had an amnio and Tanzie would still be here with us now

I just had the nuchal test as 'something that you do' without really considering the consequences. I didnt really think about the chance of there being a problem but even if i had known in pregnancy, I would have chosen to have my daughter anyway

jj - we discussed that and dh said he did not enjoy dd2's birth because of the worry over whether she too had down syndrome or not and he figures if it is high risk then we deal with it ( no further testing no matter the result) but at least he feels somewhat prepared iyswim.

I kind of feel like the 20 week scan gives a better idea anyway but who knows with men. Here they only give you a 20 week scan routinely - no early scans unless there is a previous risk or dates are very unsure but usually you have to pay for any scans earlier than 20 weeks.

I'm with you sharon kitten and I think the nuchal fold is not really reliable but I guess dh feels it will give him something to work with iyswim.

Ah well. Will let you know how I get on.

you sound a bit like me. With ds3 we were living in an area where they only do 20 week sacans. nuchal would have involved a 2 hour drive so I didn't bother (we wouldn't have done anything either). I did have the blood test though and that kind of gave some reassurance. Our concerns were autism though so it's babyhood that's been the nightmare.

Good luck!

I very much went with the advice of my GP to have the nuchal scan with my dd. My ds was born in IReland where it is not offered and so was not something I had to think of. I fell into the camp of wanting it to put my mind at rest.

However, my experience was not pleasant. My baby had a relatively high nuchal fold measurement (still in safe range but the higher end) and they could not find the nasal bone because of the position of the baby. After 45 minutes of bumping my bum up and down and 3 different stenographers, they conceded defeat and gave me my result of 1 in 240. This is not a great score considering I am only 34.

This appointment was very close to the window of opportunity available for the nuchal scan so I was advised to have amnio. Then the mechanics of terminating a baby at my stage of pregnancy was explained. I stood there in tears.

We were leaving the corridor when the consultant stenographer came after me saying they had made a mistake and had seen the nasal bone briefly after all. This changed my score to 1 in 995 - still relatively low because of the high nuchal fold measurement.

We left the hospital feeling very upset and worried and also a bit doubtful about whether they HAD actually seen the nasal bone. However, after much discussion we decided to assume that nearly a 1 in 1000 chance was very good odds and to enjoy the rest of the pregnancy on that basis.

My DH and I felt like this was a very negative experience and I would not consider it again if pregnant. In fact Dr Nicolaides who pioneered this technique lamented (in the TV programme about him) the fact that it is not more accurate as it would save many miscarriages due to the invasive amnio.

Sorry this is long but you did ask! I wish you well in making your decision.

discussed it again with dh and we agreed to have the test. He feels he would feel better about the birth etc knowing beforehand rather than being worried and stressed. I guess I have asked a lot of him and if this makes him feel better than I am happy to do it even though I am quite happy not to have a scan at all.

d'oh - my secret is out!! [dopey emoticon]

oh gosh I'm surprised its you eidsvold!

But that makes me say kind of oh well go for the test (because I know you won't get into all the should we shouldn't we have an amnio nightmare stuff that the nuchal can throw up and cause problems with). I do kind of know what he means. I was concenred about DS (just because of an extra child with SN to cope with) with my pregnancy with ds3 so I requested the triple test. I didn't intend to act on it, I just wanted a pointer iyswim. I suppose it was the same as finding out the sex as I wanted to get used to the idea if it was a boy (which of course he was) because of the associated extra autism risk.

I had nuchals with ds1 and ds2 (with no intention of having an amnio or anything if it revealed anything) and it was actually a very nice way to meet our babies- brilliant pictures! I would have had one with ds3 if they;d been offered locally but I couldn't be bothered to drive for 2 hours for one.

Good luck! And post the scan piccies on timetorant

you know me/us jj - dh and I have no intention of taking it any further but I think he just worries - sometimes I think more than me... he never told me he worried right up until dd1 was born when we have the increased risk of ds with her and how he did not enjoy her birth until the other day when we were discussing this.

SO out of respect for him and his wishes we are having the test and for me - I am just going to treat it as my 12 week scan since I would not be having one otherwise.

You are in exactly the same position I was with DD2. DP wanted tests, I didn't. I liked the head in the sand way of dealing, he just couldn't live without knowing, he just HAD to know. So out of respect for him I thought ohhhh ok. It was a hellish road and one that I really didn't want to be on. The results were worrying. Lottie is translocation but a fluke translocation and noonone knew what box to put us in. I was told things like it doidn't look good. when I said do you mean DS I was told not necesserily. I was terrified then and without even getting off the bed within 2 mins i was having a cvs. No time to dwell and turn it over and over and worry. I was asked do you need to know if this baby is ok?> The answer was ......well...yes and litererally the next words were pass the needle. It was absolutley awful but also so nice to have the control taken away a bit and just go with the flow. Ince I was on the road it was hard to get off it you see, once people say ...hmmmmmm I have to tell you it doesn't look good.

Anyway, it was all good in the end thank god but was an awful time of my life.

I still wish I hadn't even started out on the testing road as all that worry and heartache was for nothing, but htenm again..... once I knew and it was all good everyone could just re;lax and leave me alone to enjoy my pregnancy and I was able to have the home birth I wanted.

Good luck to you.

Have to cut this a bit short, lunch time and both girls are in need of their mum.

TC x

As I sat having lunch with the girls I was thinking about this and my post. I just bashed it out and thought I should come back and see if there was any advice I could give or anything else I should say, naten things up a bit. I only read the first post and idn't realise it was you until just now Edisvold.

We really are in exactly the same place, it's so weird isn't it. To be so sure on things one minute and the next be doing soemthing you ere positive you'd never do. I found that really hard. I was so anti testing and then I found myself in thsi position. I hadn't ever factored D's feelings in. I diudn't want ttests so we wouldn't have them and then therre he was saying he absolutely had to know and I was so surprised, I had never dreamt he wouldn't feel like me. Like you we discussed and I respected his needs and thought, oh what the hell, no harm I suppose. But it wasn't quite as simple as that unfortunatley and that's where i hope the similarities in our situation ends.
I kep telling people to take Lottie out the equation when they came up with the percentage of risk but even so people wqere acting all concerned and fussing and worrying me. I went to that place in Harley St in the end for another nuchal and where they could look for the nasal bone and that's when I was told it didn't look good.
Anyway, I'm going to start repeating myself now so will stop.
Just felt like I had rushed things out in that 1st post and wanted to come back and ...I don't know, make sure it was all ok.

You know where I am mate. Hope you just have a nuchal, it's all good and you and DH can enjoy this 3rd pregnancy. I pray that's the way it goes, and I'm sure it will, but whatever, I'm here to chat ab9ut stuff if you need ok.

Good luck and let me / us know how you get on okay.

xx

Edisvold - are you there, are you ok.
How's it going?

doing fine - just odd patches of nausea - seems to be first thing in the morning and then again at night. Just tired.

Just waiting for appt from the hospital. Had to use some subterfuge (sp) to get into the hospital I wanted to use - where dd2 was born - main maternity hospital in the city.

My mum made me laugh - had to tell her earlier than intended and she told a couple of neighbours ( known them most of my life - so no big deal). She came to visit yesterday and as she was driving up the drive - she stops and calls out ( top of her voice) to ask if we were telling anyone I was pregnant. No but I guess the neighbourhood knows now that you have just shouted it out mum!!

got my appt - 18 sept in the afternoon.

Okay well let us know how you get on.
Hope the sickness sorts itself out soon. Ginger biscuits really leped settle my nausea.