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Nuchal scan shows one in 3 risk - feeling sad and stunned.

(154 Posts)
Mandy73 Thu 11-Sep-08 00:39:56

With utmost respect and admiration for all parents of children with DS, DH and I both grew up with younger relatives with severe SN, and although we know there are no guarantees in life as well as many fantastic families affected by DS, we were always going ahead with screening.

Had the nuchal this evening (12+4) and it's all very sad, confusing and conflicting news. One in three risk of DS and a one in 36 of Edwards. My bloods (w 9) were crazy bad (Dr said she expected a MC when she first saw the data). The neck measurement is 2,7 but weirdly the bad blood value does not indicate DS, more like Edwards, which I understand is a more severe chromosome abnormality. The baby is big and long, which could explain the bigger neck, and the fingers perfect, which speaks against Edwards. I'm 35 and this is #1. Being fast tracked for placenta biopsy - spending tomorrow at hospital hankering for a free slot - and would really appreciate to hear from anyone who has been in a similar situation.

The baby was v wriggly and beautiful, heartbeat normal.

Thank you so much. x

Aitch Thu 11-Sep-08 00:42:06

no experience i'm afraid, but i hope that things are not as bad as you fear. good luck with everything in the coming days and weeks.

BeHereNow Thu 11-Sep-08 00:45:39

Message withdrawn at poster's request.

shubiedoo Thu 11-Sep-08 00:46:58

Not been in the same position but really feel for you, this is my 3rd and I'm 37 so was worried.

Luckily my first scan seemed OK, but I won't feel excited until after the anatomical scan at the end of this month.

Remember the bloods are only probabilities. Even if the result had been 1 in 2, that's a 50% chance of a healthy baby.

Hope you get the result you want.

Mandy73 Thu 11-Sep-08 01:16:54

Many thanks ladies (you're up late too!). It means a lot.

Well like you say Shubiedoo, the technician did say she's given the 1 in 2 risk assessment before and all was well. I think the neck was 2,7 but little one was v wriggly so hard to tell, and so long/big she felt the dates may even be wrong. 13% of foetuses with 2,5 thickness or more are still 'normal' they say. Bloods wise, levels of hCG were decreased and PAPP-A increased which is the opposite of most DS pregnancies.
So very confused & sad. Trying to look on the positive but perhaps I'm fooling myself. The not knowing is hellish.

Pria Thu 11-Sep-08 01:18:12

Not been in same situation but last year 41 and pregnant with fourth child told 1 in 19 chance of congenital abnormality.

Had CVS, all was well... wish you simlarly good news.

Remember the odds are still in your favour.

chipmonkey Thu 11-Sep-08 01:49:11

AFAIK, a very wriggly baby would be unlikely to have Edwards. Apparently Edwards babies don't move their arms much. Hoping you get good news.

fedupandisolated Thu 11-Sep-08 06:50:45

Hi Mandy73

Hope things go well for you when you have the testing.
On a positive note I have seen Mums (used to be a midwife) who have had these kind of results before and it's not always been bad news. Sometimes babies have these kinds of results but it's just normal for that particular baby.
Try to keep in mind that these tests are screening only - they don't give a definitive diagnosis - only a "risk". A 1 in 3 risk means that the odds are still in your baby's favour and I so hope for you that this will be proved beyond doubt when you have the diagnostic test.
Sending you a virtual (((((hug)))))

ZacharyQuack Thu 11-Sep-08 06:53:21

Hi Mandy

No words of wisdom, sorry, just lots of good wishes.

pelvicflawed Thu 11-Sep-08 07:08:16

Just giving you my support I went through this six weeks ago when I was given a 1;2 risk of DS -it is an awful time just remember take each step as it comes nothing has been proven yet and the balance of risk is very much in favour. I had CVS for a definitive diagnosis - if you can't get a slot quickly at your hospital and if you are prepared to travel ask if they can arrange it at another hospital - I live in Plymouth and our hospital couldn't get me an appointment for a week (mainly I think because every one was on hols)but they managed to arrange an apoointment in Exeter a few days later. Thinking of you just remember the stats are in your favour and nothing is proven - good luck

FourArms Thu 11-Sep-08 07:15:49

Nothing to add, but best wishes for today. I hope you get the placenta biopsy sorted ASAP. Will that give you a definite answer do you know? Any ideas how long the wait for the results will be?

Pelvicflawed - hello from another Plymouth mum

LittleMyDancing Thu 11-Sep-08 07:20:17

Good Luck Mandy - we had bad results with our last pregnancy, 1 in 12 for Downs and I can't remember the Edwards risk but it was very high, and all was well when we had the CVS. I posted a thread about it at the time and heard from so many people who had a risk factor of 1 in 2 or 1 in 3 where it had all worked out fine, so remember, it is just statistics.

1 in 3 is only a 33% chance, it might help to think of it like that.

The CVS is fine, a little uncomfortable, but over very quickly.

I really hope it's all ok for you. smile

shabster Thu 11-Sep-08 07:25:59

Had DS4 in 1997. After the blood test they told me 1 in 180 chance of DS. I was almost 41. I was delighted with what I thought was 'good odds.' My midwife was almost in tears and strongly suggested I had amnio. They always had me 4 weeks behind what I KNEW was my due date. By the time I had the amnio I was 20 weeks. I had to wait a month for the results by which time DS had started to move around.

The outcome is I have a healthy, clever, beautiful 11 year old son. No disrespect to anyone who has a DS child. Try to stay calm and think that you dont have to wait long until you will find out. Easy for me to say I know but what will be, will be.

Stay calm, and I hope you get sorted out asap. xxx

Mandy73 Thu 11-Sep-08 09:12:06

Thank you so much for all your kind words and support, it really helps. Trying to get through to hospital now to see if I'm actually booked in for a CVS at 10:30 or 'just' counselling in which case I wait until Monday.

pelvicflawed how did it all go for you in the end?

Trying to be positive but realistic. Such conflicting signs.

Thank you again. x

littlelapin Thu 11-Sep-08 09:16:32

Message withdrawn at poster's request.

shabster Thu 11-Sep-08 09:19:05

Good luck sweetheart xx

surreylady Thu 11-Sep-08 10:26:52

Good Luck - I also had bad bloods on Number 2 - I opted for Amnio as they were pretty sure that it was not DS but were looking for Edwards - posting really to say - that I know how you feel - the sense of wanting to be detached and clear headed until you know the full picture but actually not able to be - do you work? I found that keeping busy really helped me - all turned out well - I have my fingers crossed for you too.

Mandy73 Thu 11-Sep-08 11:33:43

Thank you lovelies.

Just got back from hospital, no chance of anyone there doing a CVS until Monday so we wait.

Turns out the midwife I saw for 'counselling' disagrees with the ultrasound technician in that she didn't feel the nuchal measurement was much to worry about, however the biochemistry is v dodgy and does point to DS and/or a poorly functioning placenta. The PAPP-E is v low, well it was in week 9 at least. MW stressed odds are still on our side but not sure I find that thought v comforting - like we might be fooling ourselves.

I work from home surreylady, not the best at times like these. Will def. try to keep busy though. Thank you for all the lovely comments. x

BeHereNow Thu 11-Sep-08 15:44:17

Message withdrawn at poster's request.

everlong Thu 11-Sep-08 22:03:05

Hi Mandy,

Sorry to hear about your worrying results.

Have just been thinking back to my nuchal/blood test that I had with my ds, 2+ years ago aged 38. My papp-a was very low too. My risk was 1-390 which in itself isn't at all bad, but that was because the nt measurement was really low, 1.4mm.

Anyway, I was very worried about this papp-a and totally obsessed over it. There is a lot of info out there about it and what I can remember it can mean that there is a chance of an association with a chromsosome abnormaility, or placental problems and there is even a link with male babies??

I opted not to do invasive testing, but worried the whole of my pregnancy, only to deliver a healthy beautiful boy.

I really hope everything works out well for you and your baby. Let us know how it goes.

everlong Thu 11-Sep-08 22:06:48

Also Mandy am I right in understanding that your blood was taken at 9 weeks?

I thought that you had to be between 11-13 weeks pg for the test to be accurate, could this be a reason why your papp-a was so low?

Just a thought xx

pushchair Thu 11-Sep-08 22:28:19

I had a 1 in 5 chance after blood tests at 12 weeks and had whole rollercoaster of feelings as pg was unplanned anyway and had been a shock, had early spotting and then this. Waited 5 days for CVS. They were lovely at the hospital and very positive which I found a bit disconcerting because I did not want to get my hopes up. They kept referring to the 'baby'. I felt I wanted to go back to thinking of the 'blob' just in case. It was a long day. Had detailed ultrasound and again to check blood flow. All looked well and blob had a prominent nose which is often not observed in DS babies. At last had the CVS which was a bit uncomfortable but not painful. Results were due back in a week- horrible time. I got restless and phoned in the end. A very cheery woman said "oh just hang on I'll find out" and came back "ah yes here we are" Results were negative for DS and Edwards [which I had never heard of up till that moment]. DD now 2 and fine. Hope this helps and everything goes well.

elkiedee Thu 11-Sep-08 23:36:09

I've been through this although my stats were different and mostly based on age made worse by blood tests. CVS results came back clear in my case, but several people posted on my thread who had different experiences.

I was told about an organisation called Antenatal Results and Choices - they have a website and also telephone counselling if you feel that would help when it comes to making decisions.

Will look out for you, let us know what happens.

Mandy73 Fri 12-Sep-08 10:32:52

Thanks a lot lovelies.

Pushchair said: "They were lovely at the hospital and very positive which I found a bit disconcerting because I did not want to get my hopes up. They kept referring to the 'baby'. I felt I wanted to go back to thinking of the 'blob' just in case."

Totally agree, finding all that a bit sickly. The last thing we want at this stage is to further humanise/bond. May sound heartless but that's us and our coping strategy.

Everlong said:
"Anyway, I was very worried about this papp-a and totally obsessed over it. There is a lot of info out there about it and what I can remember it can mean that there is a chance of an association with a chromosome abnormality, or placental problems and there is even a link with male babies??"

Yeah, there's loads of info, mostly positive stories (I suppose the lucky ones are more prone to share) and also a lot of complicated research papers. Have had to stop looking as was googling myself silly.

Oh, re. times: For maximum accuracy bloods are taken at week 9 and the actual scan at 11-13 weeks these days apparently.

I'm baffled nobody has asked for more blood from me. The PAPP-A was so low they're all shocked I'm still PG and, moreover, that the baby is v active, normally developed, even on the large side. DH mentioned to MW & Dr
my early bleeding scare (2,5 weeks before I gave the blood) as we have read online early bleeding can play havoc with your PAPP-A levels but they weren't interested in that theory.
Also, the MW I saw for 'councelling' was v miffed the technician didn't look more closely at the placenta.

Just trying to hold it together now, should know more by Wednesday.

Thank you so much everyone for the input and do keep it coming - this really helps. xx

Twelvelegs Fri 12-Sep-08 10:38:54

My second DS's nuchal measured twice the thickness it should but my bloods were fine. We had a 1:9 risk. I went ahead with the CVS and results were negative for chromosonal problems but had to wait 18 weeks to ensure the heart a formed properly. I have no experiance of SN in my family but was very sure that we would terminate should any show in screening.
My baby boy was born without any problems(aside from a rubbish GA to get him out!)and is a real delight, mostly.
From my experience the medical staff are very candid and honest and present the facts in a clear and precise manner where possible.

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