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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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Original poster

Nuchal scan today put me in high risk.

25 replies

tizwas · 19/03/2008 22:14

I entered the room with a 1:450 risk and left with a 1.128 and feeling really low - am regretting having it done. This is our 3rd baby- we found out a 3rd boy - and we couldn't even digest that news because of the shock of being told we're high risk. I couldn't face the risk of miscarriage with amnio but I don't think I could face waiting till September to be put out of my misery. Has anyone got words of advice/been in this position? Haven't spread the news of our pregnancy because I'm feeling so rubbish.

OP posts:

Are your children’s vaccines up to date?

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littlelapin · 19/03/2008 22:17

This reply has been deleted

Message withdrawn at poster's request.

lackaDAISYcal · 19/03/2008 22:19

You could look on it that there is still a 127:128 chance that your baby will be fine.

I hope that doesn't sound too flippant.

midnightexpress · 19/03/2008 22:20

I'm sorry about your news tizwas. Just wanted to say that one way of looking at it is that it's still a lower than 1% risk. If that helps at all.

fishie · 19/03/2008 22:22

how old are you? i got in a real mental contortion because i didn't have a nuchal test and my age put me in about 1:450 (i think).

what are you being offered other than amnio? another scan? as lapin (and i'm sure a million xposts) says it is really not an enormous increase in % terms.

Original poster

tizwas · 19/03/2008 22:27

You all right with your stats - I will try and think positively. I am usually a positive thinker but I suppose I naively thought the scan would go the other way and put me at a lower risk. I have just been in a state of shock...thanks for your practical advice.

OP posts:

Swedes · 19/03/2008 22:27

Tizwas. I have 4 children. Last 2 pregnancies I went to Fetal Med Centre in London for my nuchal scans. For my daughter now 2 I got a very good result with the nuchal fold measurement and the nasal bone but combined with my bloods it cae out 1 in 90. I had a CVS (at the fetal med centre too) and all was well.
My most recent pregnancy was the same only this time combined with the blood I got a 1 in 7 result. I had a CVS (performed by Nicolaides himself - very reassuring expert and painless) and all was absolutely fine.
I would urge you to go to the fetal medicine centre for a cvs if you can. I think knowledge is a good thing. Worrying about what might be is hopeless.

Swedes · 19/03/2008 22:29

Where in the country do you live?

Original poster

tizwas · 19/03/2008 22:31

Was 34 in Jan baby due end Sept. I am being offered a CVS - again this has risks attached and a Marker Scan at 17 weeks which will determine if risk is reduced or raised. Not sure if I could go through another scan to be told things are worse then have to have a late amnio...lots of thinking needing to happen...

OP posts:

yurt1 · 19/03/2008 22:31

If you don't want to have invasive testing you can have a detailed scan that will look for 'soft markers'. I think it's done around 20 weeks - so it's the sort of thing that might be useful if you know you wouldn't terminate either way.

Original poster

tizwas · 19/03/2008 22:36

Am in Uk - Midlands. Thanks Swedes for relating your story and the fact that you everything was fine is so reassuring. My fear with the CVS is that there is a 2% chance I may lose him.

OP posts:

Swedes · 19/03/2008 22:36

I needed absolutes. I'm not at all certain what I would have done with any negative news but I felt I needed it in order to make an informed choice.
CVS performed at the fetal medicine centre is much much lower risk than one performed by your consultant at your hospital because they do these procedures day in day out - hundreds a day sometimes. Nicolaides told me he'd never had anyone miscarry after the procedure.

Swedes · 19/03/2008 22:40

tizwas - yes,of course. I wouldn't trust my average consultant with a CVS because they just don't perform enough.

Look at the fetal medicine centre website google nicolaides and fetal medicine centre. They are a registered charity and all their profits go into research.

Sorry, but I just can't recommend it enough.

Original poster

tizwas · 19/03/2008 22:43

Swedes - thanks for this recommendation. Will definately have a look at the website. It's another option.

OP posts:

fishie · 19/03/2008 22:49

tizwas i also urge you to contact the fmc, they gave me such good information and advice. just on the phone, not anything more.

just to explain a little more, i was a month too young to get a nuchal scan on nhs (locally) but nobody told me until it was too late to get one. i was 34 too and had triple blood test, are you being offered that or just the scan?

handbagqueen · 19/03/2008 22:52

tiswas,

I had a high risk result from my nuchal scan for both my pregnancies (1 in 70 and 1 in 50).

I took the decision to have an amnio rather than CVS as amnios have been around for longer. Luckily the hospital near me was well practiced in carrying out these procedures so the risks of miscarriage are reduced.

I don't think I could have gone through a whole pregnancy not knowing. The toughest part for me was not being able to tell anyone I was pregnant - especially the second time as it took me 4 years to finally get pregnant.

If you do opt for one of the tests after the test its important to rest for a couple of days. I took up position on the sofa with the remote and DH had to look after me.

Also its not very nice to think about this but you need to decide what you would want to do if the result of the amnio/cvs shows that the baby has Downs. We thought this was a decision we should make before having the test, and we wrote it down.

This was my experience hope it helps.

Original poster

tizwas · 19/03/2008 22:53

Fishie - yes had my bloods done and they were fine - as was nasal bone. Fluid at 4mm was the only negative indicator.

OP posts:

lackaDAISYcal · 19/03/2008 22:54

I'm sure I read somehwere (it might have been Lesley Regan) that the published risks of miscarriage after amnio and CVS are based on very outdated stats from when the procedures were relatively new and not commonly performed and that the actual risk is much much less.

I'll try to find a link

Swedes · 19/03/2008 22:57

I told my close friends and some family. You need their support - whatever the result. They don't just love you in the good times you know?

yurt1 · 19/03/2008 23:02

If you want absolutes you are better going for an amnio than a CVS as a CVS won't always give a clear result in the case of a mosaic condition for example.

There's some info here: although the midwife concerned in that interview does seem to be positioning herself as quite anti CVS. However, the mosaic thing did happen to a friend of mine. She had a large nuchal, had CVS was told either the baby was fine or was XO/XY mosaic. Was offered an amnio which she didn't want as she'd bled after the CVS then she just had to wait anyway. The whole thing was a nightmare. I think she ended up wishing she'd either just waited or had an amnio rather than CVS.

I agree with whoever said the first stage really is to decide what you would do with the results. Then you can weigh up the risks accurately.

yurt1 · 19/03/2008 23:02

BTW some of the higher rate of miscarriage attributed to CVS is because the test is done earlier when miscarriage rates are higher.

Swedes · 19/03/2008 23:07

Yurt - what is a large nuchal? I didn't know they came in sizes?

yurt1 · 19/03/2008 23:08

I mean she had a large measurement, therefore high risk. IN fact hers was very large indeed, which apparently is often associated with Turner's syndrome (XO)

Swedes · 19/03/2008 23:11

Sorry - I was being dim. I see now what you mean. But the mosaic thing occurs in less than one percent of cvs results. In 1% of amnios the fluid fails to culture. You could go on an on being negative.

expatinscotland · 19/03/2008 23:13

My sister's neighbour's daughter has Turner Syndrome.

She's a very happy 11-year-old who's enjoyed excellent health.

yurt1 · 19/03/2008 23:17

Yes of course you can, but it's also worth (imo) weighing up the risks before invasive testing - and to fully understand the potential confusions. My friend had an awful few weeks because she hadn't understood the mosaic issues (and had already had the genetic test for DS all clear, so thought it was a clear result).

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