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Good nuchal fold (1.6) and bridge of nose seen, PAPP-A 0.54 = 1 in 68 risk of downs. Why?

(13 Posts)
pipoca Tue 09-Nov-10 14:32:19

Just had my 12 wk scan and after the sonographer saying the nuchal fold was gooda nd showing the me the bridge of the nose and saying these were normal and good signs of no downs, she inputted my bloods and came up with a risk (a high risk) of 1 in 68. She says my HcG is normal nad it's my age (35) and my high (0.54) level of PAPP-A that's given me a high risk.
She says it's possibly a false positive but I'm really worried now and not sure I understand it all.
Any experiences or anyone who can explain it more?

fifitot Tue 09-Nov-10 14:54:57

Basically what the sonographer said. The nasal bone presence or absence, the bloods and your age combine to give you an overall risk score. She has told you hat it is your PAPP A is high which is probably skewing the results.

Talk to arc.org.uk - ante natal resources and choices (I think). They have a website and a phone line and great advisers who can talk you through your results and the implications.

1 in 68 is still 67 chances all will be well but you need advice to think through the implications.

Who did the scan? Was it NHS?

pipoca Tue 09-Nov-10 15:29:03

Not NHS as I'm abroad. I will be having the amnio .

I'm wondering how likely it is to be a false positive if there are no soft makers (nuchal etc). Sonographer said she thought it would v probably be a false positive.

Nettynoo72 Tue 09-Nov-10 16:47:45

Hi Pipoca

I was in a very similar position about a week ago. At 12 week scan NT was fine (1.8) and nasal bone present. But my blood results ended up giving me a 1:31 risk of downs syndrome. I was really upset but when you think about it the chance was still only 3%. Anyway went for a detailed scan and a CVS. After the scan the doctor said that normal NT was a good sign and that everything looked normal - then a couple of days later the CVS results gave the all clear. Please don't worry too much (easier said than done I know) - I have read all the posts on here and it seems that the blood tests can often give false positives. Fingers crossed for you.

eaglewings Tue 09-Nov-10 16:55:32

So sorry to hear that you have been given this news with confussing reasons.

I may be wrong in saying this, others will correct me if necessary, but do you need to have the amnio? I say this as I had a friend who had comlications afterwards and altho her baby was fine, no damage from the amnio and no Downs, she had a scary pregnacy after the amnio.

What would you do with the results? (Don't tell me, its just a question you need to ask yourself)

Remember as you await the next step what fifitot said, you still have a very high chance of not having a baby with Downs

pipoca Tue 09-Nov-10 20:11:29

Thank you all.

I live abroad and there is no CVS unless I pay for it (don't know how much or if I can get an appt in time) and the amnio results will take 3 - 4 weeks. I'm dithering about the CVS but leaning towrds not doing it because of the elevated miscarriage risk.
I know what I would do if it were psoitive, which is why I will have the CVS/amnio. I'm sorry if that offends anyone, I have my reasons.
I phoned arc, thank you fifitot and they were brillaint. she said they train sonographers not to use the phrase high risk as it's not helpful, but to give precentages and that my percentage is 98 point something I will have a non downs baby and if I had odds like that on the lotery I'd be stupid not to buy a ticket . Made me feel a little better.
Going to find an 8 wk wait for results hard.

pipoca Tue 09-Nov-10 20:38:17

She also explained my bloods to me (HcG 2.75 and PAPP 0.54) that they can just be a natural variance on normal and said that the nuchal result being good (1.6) and the presence of a nasal bone was very encouraging. The sonographer said she felt it was a false positive but I can't get the words high risk out of my head, and the consequences if it were a positive amnio, or the wait to know. Sorry I know I'm whinging when people get much worse results, but I'm struggling here.

fifitot Tue 09-Nov-10 20:54:45

I am glad they were able to help.

Try not to worry - easier said than done I know but there is nothing to be gained by worrying about it.

Good luck.

pipoca Wed 10-Nov-10 13:48:45

got it wrong, I have low PAPP at 0.54 and high HcG at 2.75. anyone know if these are considered very low and very high?

fifitot Wed 10-Nov-10 14:03:02

I think the closer to 1 they are the better. Something like that. I have seen women talk about higher ranges of HCG than 2.75 but you maybe need more accurate information than I can give you.

FannyLogan Fri 10-Dec-10 20:40:42

I found these graphs/ bell curves showing the distributions of results for the various hormones which I found very interesting. My hcg was 3.0 and papp a was 0.6. NT 4.6mm.1 in 3 for DS, amnio came back clear for DS.

http://www.wolfson.qmul.ac.uk/epm/screening/calcri sk.html

mummytoh1 Mon 13-Dec-10 09:38:05

As has been said, it is the PAPP-A and the hCG skewing your results (they are indexed at 1 so that would be 'average'). Chances are this is a variance on the norm, as you had a good scan.

My PAPP-A was 0.39, my hCG was 1.65 and my nuchal fold was 2.6mm. None of those measurements are particularly great and at age 35, that gave me a risk of 1:15. Anyway, I got the all clear from a CVS.

By the way, the risk of miscarriage from CVS and amnio is the same now, and the actual risk depends on the experience of the person performing the procedure. You would want someone who did a lot of these, whose individual miscarriage rate was low, regardless of which procedure you end up with.

Very best wishes to you, this is such a tough time, I know from experience. I hope you get a swift answer.

Claire x

pipoca Mon 13-Dec-10 15:06:26

Got the all clear last week!

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