Nuchal scan tomorrow - advice needed in advance

[chocciechip]

Ladies, I have my 12 week scan tomorrow and I am very nearly 40 so am worried about the potential outcome. I think my hospital takes 2 weeks to process bloods after the scan, and about the same for CVS results (if I needed them). I am not actually sure how they'd fit a CVS in with those sort of waiting times for the bloods, so thats another worry. In total this would take me to 16 weeks or over, which - as far as I am aware at my hospital - would mean that if we had to confront termination I would not be offered a surgical option. I've had two MCs before, the alternatives to surgical option at this stage of pg fill me with total fear.

I have made a tentative appointment at the FMC for early next week in case we need to get results faster, and we will need to decided tomorrow whether to keep it or not (the FMC advised us to do this). If we lived in London I'd keep it regardless, but we live in Scotland, so getting there at such short notice is a big cost and stress for us.

All I'll know tomorrow, I think, is the nuchal fold measurement. On what basis would any of you keep the FMC appointment? i.e. what is a 'low' enough measurement that I can feel its OK to wait a bit for the bloods; or what is 'high' enough to justify rushing to London for clarity.

Also, is it possible for us to get a very low fold measurement, and then have the bloods throw up high risks?

I'd appreciate any guidance from those of you have been through this and have the benefit of hindsight and experience.

[Millymolliemandy]

Hi Chocciechip; just a thought, could you call your hospital and ask them exactly how long the results of the bloods take? I know that we got a call within a few days of having them (and the nuchal scan) and so was in time to have a CVS?

[Millymolliemandy]

Oh and I should also add that the preliminary CVS results were also supposed to come through within 72 hours for us (London based) (although we ended up having to wait considerably longer due to snow and Christmas which as you can imagine was a bundle of fun!)

[chocciechip]

I did call them, and got a very vague reply and ended up none the wiser. But someone on another thread at the same hospital was told on Tuesday that she should expect to wait two weeks - so unless they have different rules for different people (older, higher risk etc), then I am anticipating a two week wait. I am going to try and push for clarity though tomorrow, but am not sure how screwed on my head will be. I'm really quite nervous about it all.

[Millymolliemandy]

It is pretty unacceptable that the hospital is not able to give you a more precise timeframe, particularly as timing is important here, for all manner of reasons, not least your sanity. This link has a bit more info (from a Nicolaides study, the Prof at FMU) about nuchal fold thickness and probabilities:

www.ob-ultrasound.net/xdown.html

In my case it was bad bloods that raised our risk but I am sure someone will be along with more experience of nuchal fold measurements.

Wishing you all the best tomorrow.

[Sparklies]

I was told 2-3 weeks by letter for the bloodwork if nothing was wrong, 3 days by phone if it was. I got "the call" on the second day (to say my heart sank when I saw the hospital number come up on my phone is an understatement..!)

At the FMC they do the bloodwork for you before the scan then it's ready after the scan, under 30 minutes. They have their own machine on site to test it, but lots of hospitals have to send the blood off.

My NT was excellent at 1.6mm (0.99MoM) but the bloodwork was so crap, it drove the risk to 1 in 34 (I am 34). I went for a second opinion at the FMC after that who pretty much confirmed everything my local hospital did, but did reassure me a little with a detailed scan which my NHS hospital did not do.

So the bloodwork is important, unfortunately. I even asked Prof Nicolaides himself based on anecdotal experiences that people with great NT measurements but crap bloodwork seem to usually be okay, but he put me in my place (in as nice a way as possible, of course!) And if anyone would know..

[tiredandgrumpy]

I was also told a call within the week if news was 'bad', otherwise a letter within 2 weeks. Results can be much faster. You should also be able to get some comfort from what they see at the scan itself - the radiographer will know instantly if the measurement is within a normal range, plus just by looking at facial features they get some assurance. At My recent nuchal scan (I'm 39) I was told there and then that there shouldn't be a problem. They must be confident to feel able to say that.

[Yaya70]

Hi chocciechip, my nuchal result was 2.0, which is not too bad, but my baby turned out to have Down's syndrome. Perhaps my case was a bit unusual, but it is possible for some babies with chromosomal problems to have "normal" nuchal values. There were other "soft" markers in my case though. The baby had no nasal bone (about 75% of babies with Down's syndrome have an absent nasal bone) and they spotted tricuspid regurgitation (a leaky heart valve). Not everywhere measures all the soft markers though. When you go for your scan tomorrow, do ask the sonographer whether the nasal bone is present -- if so, this is a good sign. My HCG level was about twice the normal level.

I had a CVS at the FMC and we got the results for the three main trisomies (Down's, Patau's, Edward's) within 48 hours. I think 48-72 hours is standard practice for the major chromosomal abnormalities. The 2 weeks you've been quoted is probably for the full chromosomal karyotyping, but my understanding is that this doesn't often show up any problems, though it's not unheard of.

Best of luck with your scan tomorrow

[ghislaine]

chocciechip, I understand you wanting to hope for the best, but when it comes to these things, you cannot do your own diagnosis.

My nuchal was 1.5mm, my baby had a nasal bone. Based on other risk factors (my bloods, the existence of tricuspid regurgitation, and a reverse a-wave flow in the ductus venosus -they will do all these at the FMC) I got a 1:2 risk of T21. My baby did indeed have down syndrome. I think if I'd just relied on/been told the main soft markers of nuchal and nasal bone, I'd have received an even bigger shock than I did.

You need to think about what level of confidence you're prepared to have in the results, and how much uncertainty you can cope with, knowing that the nuchal measurement is not the full picture.

[mummytoh1]

This is probably too late for today's appointment, but what I was told by my hospital was up to 4 weeks (shocking!) by letter if the results were low risk, but I'd get a phonecall within 5 days if it was high risk. 2 days after the appointment, I was devastated to see the hospital's number come up on my phone and they had me in for a CVS the following day (so just 3 days after the nuchal scan and blood test). (CVS was all clear, btw)

If you're high risk, you'll know about it in plenty of time to have an invasive test and make an earlier decision. They won't leave it for 2 weeks knowing there may be a problem.

Claire x

[RememberToPlaywiththeKids]

hi sparklies - sorry to highjack - how many weeks are you now and did you go for the amnio in the end?

[Sparklies]

Hi Remember! How are you doing with your new little one? :)

31w3d today.. amnio appointment is on Monday at 11am! I've reached the decision that we will go ahead with it unless the doctor who will do it gives me reason to feel concerned.

I've been doing a lot more research into late amnios (it suddenly occurred to me to look at papers covering amnios for lung maturity which are done all the time even from as early as 32 weeks) and the statistics from those were very reassuring - the most quoted paper had around 1,000 late amnios and no maternal or fetal loss. Still, so much is down to the doctor/clinic doing the procedure. It's Kings College so can't get better than that really, but I will want to know their record on late amnios, plus ask about silent infection (the main thing I'm worried about) and if I'm not happy with his/her answers, we won't go ahead.

I'll post here on Monday probably with what happened as I am sure I am not the only one who has ever or who will ever want a late amnio for these reasons.. and goodness knows there's hardly any information out there. We should get the results in 2-3 days, bureaucracy permitting!

[Sparklies]

chocciechip - how did the scan go?

[RememberToPlaywiththeKids]

good luck for tomorrow not that you'll need it! It will be nice for you to not have to wonder any more though having the amnio will inevitably ramp up the worry for the 2-3 days that you're waiting!

Little one is totally gorgeous and we're really enjoying having him around!

[MyangelAva]

Sparklies, I just wanted to wish you luck tomorrow with the amnio and I'll be thinking of you. Stay positive and make sure you put your feet up and try to relax!

[Sparklies]

Thank you, both of you! Yes - definitely not looking forward to the theoretically 2-3 day wait (knowing Kings I half expect it to take a week due to bureaucracy and results being lost - cynical, me? I had DC2 there..) but it will be great to know for sure. Assuming I go ahead!

Lots of relaxing planned - I'm a photographer so today we took my maternity photos in the home studio so I'll have a lot of sitting on my backside post-processing those over the next few days! DH will be working from home on Tuesday too so he can look after the little ones.

Remember - so glad all is going well :) :)

[chocciechip]

Very quick update. Scan went well (I think) - NT measured 1.1mm. But I was told the scan meant nothing on its own and that I'd have to wait for bloods for two weeks, until I expressed annoyance. I have now been told to phone on Weds, so we'll see . I don't think I'm any further forward with knowing anything properly yet. Thanks for all your advice.

[NatzCNL]

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