very different nuchal fold test results

[babyworries]

Hi

After advice from friends I decided to have a private 12 week scan done at The Fetal Medicine Center - and the next day had my 12 weeks scan at UCH.

I wish I'd thought more about this beforehand and decided not to go ahead as my partner and I have been down a long road of IVF and I cannot imagine deciding to terminate if there is something wrong. I never felt like there was a choice (clearly I didn't have to go privately) but the NHS 12 week scan is just given to you as a fait-accompli without anyone advising you that you may then face a very difficult decision that runs a risk of miscarriage.

Apparently my risk factor as a I walked through the door as I'm 42 was 1 in 38.

The FMC gave me 1 in 40 which puts me in the high risk category for Downs (which I understand now I was already in anyway). Everything on the scan was normal (heart, nasal bone, size, bloods etc) but the nuchal translucency measured 2.9mm which is outside their normal range. The baby was very active which I understand from other sites is a good sign of no problems - but makes it more difficult to get a correct reading.

UCH gave me exactly the same test ( it also included a transvaginal scan which apparently gives more detailed results - although not for nuchal fold). However their results were entirely different. Every marker was normal including the nuchal fold which they measured at 2mm. They were very pleased with the results and said it was a good scan as the baby was still enough for them to get an accurate reading. They said my risk is now 1 in 1080.

How can these results be so wildly different? I tend to believe the FMC as it's a specialist clinic (although it wasn't Nikolaides who scanned me). I checked out the guy who scanned me at UCH and he is a very well respected gynaecologist.

I don't think I want to go through with a CVS as I'd never forgive myself if there was nothing wrong and I then miscarried after everything we've been through. Even though they say it's 1% it still feels too risky especially when I cannot imagine terminating.

Clearly this is not an exact science. I cannot believe that women are being put through these stressful tests and there appears to be such a huge margin for error.

Has anyone else experienced anything like this?

Sorry you are going through this. I am suprised at the difference as I thought that the FMC tended to do the most accurate scans.

The only thing I can think of is whether they included they both included the blood results in the overall risk assessment. Do you know?

Maybe you should ring FMC for advice and explain your concerns.

i am suprised too, i was going to ask the same as fifi, did you have the blood tests done to go with the scans? when i had a nuchal scan there i had the bloods done at the same time as the scan.

i would ring for advie like fifi said.

if like you said that you wont terminate, then having a cvs is neither here nor there, unless you feel you want to know for sure.

i am sorry you are worried at what should be such a lovely time for you

Hello ladies.

Thanks so much for responding to me. Yes they included my bloods in both scans - and the bloods in both reports are almost exactly the same and apparently normal.

I'm planning on calling FMC for advice but so frustrating it's a bank holiday weekend. I thought I'd call UCH too - and see how both clinics respond.

I'll post on Tuesday when hopefully I'll have spoken to them.

Would you trust the FMC more than UCH though?

I am not sure about trust being the issue. I wonder if there is something else they factored in on one scan and not the other. Maybe you should ask both clinics exactly what they use as parameters for the risk assessment.

Different days even?

I did the FMC test on Thursday and the UCH test on Friday just gone.

The FMC were very clear that 2.9mm at my age puts me in the high risk category - and that was the only marker that was not normal using their parameters, although they said it was just outside.

UCH said 2mm was well within normal range and that they are very happy with anything under 2.5mm.

They are such tiny measurements but clearly one of them has made a mistake. They both appeared to be using the same software and I saw the measurements being taken on the screen....

What a confusing and scary time for you.

I've been through something kind of similar recently. At my 12 week (NHS) scan the sonographer recorded 2.4mm nuchal measurement and then towards the end of the scan re-measured it at 2.7mm and changed the recorded number. At the time, it worried me, and the next working day after my scan I was on the phone trying to get another scan appt. I wasn't able to reach anyone. I would have gone to FMC if I didn't get the right answer from the hospital.

2 days later I had a call telling me the results of my combined test gave me 1/5 (I'm 35) for Downs. I had a CVS the same day and received the results 3 working days later (had a weekend in between). I was relieved when I was told the baby had no 21/18/13 chromosomal abnormalities.

For me, the choice to do a CVS was clear: I needed to know either way, regardless of what I may or may not do if I was faced with Downs/Edwards/Pataus. Also, I suppose my risk was so high compared to miscarriage rate (and my consultant had done 2,000 CVS by year 2000 when he stopped counting), and I factored in "normal" miscarriage rates for 1st trimester.

I will probably never know if my nuchal measurement going from 2.4 to 2.7 was much of a factor in my final risk. I do know that my bloods were "bad". But in the end I was told it was "weird blood chemistry."

Whatever your personal risk factor (and that is what it is, once the bloods and screenings are done - they are personal to you), you have to make the decision about further testing. But I agree that you should have a clear picture of your risk factor. Talk to both screening depts (my hospital had it's own M/W attached the the dept) and figure out what is going on. It could be the position of the baby at time of measurement, or it could be a mistake, or...? I hope you get some answers on Tuesday. It is agony waiting, I know.

There's not much you can do but wait to talk to both clinics unfortunately. Let us know how you get on. No wonder you're confused!

It's risk factors not results that have a defined outcome. Only way to know for sure is an amnio. This has a miscarriage risk. You can have one early (with increased risk) from 14 wks. Results on downs in a few days, full results in 2 wks or so.

You scan showed a nasal bone which is less seen in downs. Check the femur length and other ratio measurements to see if they match dates.

Best wishes.

Hi Babyworries - I'm so sorry to hear you're going through this at what should be such a positive and happy time.
My husband and I are going through the same thing at the moment (only one test though) - my scan and blood results have given me a 1:2 result (I'm 38), CVS couldn't be done, so I'm booked in for an Amnio next week.
I understand your concerns about the accuracy - I watched the sonographer as she tried to take the nuchal meaurements (baby bean was leaping about all over the show)and the numbers ranged from 3 to the final result of 3.25 which she called out to the lady doing the paperwork. When the midwife came to see me, the nuchal measurement was loaded as 3.3 which I know is not a huge difference but has obviously been rounded up. They didn't do any of the checking for nasal bone, heart function etc. so maybe it's not hugely accurate - in fact I can't see how it can be but maybe I'm just trying to reassure myself.
I understand how you now question whether to go forward with further testing - with hindsight I wish I'd never started down this route but now I need to know. You need to talk to the clinics who may be able to reassure you as to why such wide ranging conclusions but you must now take some real quiet time to think about how you want to go forward - don't feel that you have to be caught up in the 'conveyor belt' of testing - if you don't feel it's right for you then don't be pressured into anything you're not sure about.
My thoughts are with you at this difficult time.

Thank you so much everyone for all your support. It really helps to hear other people's experiences.

Debs3013 it must be a very worrying time for you. My thoughts are with you too.

I'll post on Tuesday when I've heard from the clinic.

Thanks again everyone.

Hello ladies

So I called both clinics today and neither were very helpful. They use the same software, the same system and can't explain why the results are so different - although they agree it puts me in a very difficult position.

Both doctors were insistent their measurement was correct. The guy at UCH has been doing these scans for 20 years. The guy at the Fetal Medicine Center has been doing them for 5 years. They even know who the other is.

It makes me feel quite angry that this system is used everywhere and yet it is so unreliable - leading some women to go ahead with an unnecessary CVS that could cause them to miscarry.

FMC have offered me another scan which I've said I don't want to pay for - but it's a different doctor and I wouldn't be surprised if I get a completely different measurement...My partner is out of the country till Monday and I don't want to go without him - so more waiting....

I just feel so at the mercy of the medical profession. I thought getting through the worst of IVF was bad enough ....

Debs3013 - do you know when you are going in for your amnio yet?

I have been looking out for your post and am really sorry you are in this position. What a nightmare. I can't believe the odds are so different based on similar information.

Did they both include the nasal bone info etc?

I really don't know if I would bother with another scan myself tbh - it might only add to the confusion! Have you heard of ARC? Ante-natal resources and choices? They have a good helpline which you can ring during office hours and they might have some words of advice.

FWIW though wildly different, even the 1 in 40 isn't as bad as you might think and I guess that's the worst case scenario.

Let us know how you get on.

Hi fifitot

Yes both included nasal bone info - and all other 4 factors were in their normal range - it's just the NT measurement itself where the discrepancy was.

I know re another scan - I just want my guy to be involved in us making the right decision - and he's been away through all of this - so it would at least offer us an opportunity to talk all this through with FMC together.

I know 1 in 40 isn't so bad - especially looking at other postings online. The chances are really overwhelmingly in our favour that everything is as it should be. A close friend of mine had a little boy with downs over a year ago and she was given 1 in 250 - so it seems to me these statistics really are meaningless.

I fell in love with her boy when I met him (he just seemed so very vulnerable and we'd been trying for a long time at the time) and of course that makes the decision to go ahead with a test seem pointless - could I ever terminate after everything we've been through? But of course I want the reassurance that everything is OK so I can enjoy the rest of this pregnancy which has been so hard to enjoy over the last 3 months (every week has been another milestone in the pregnancy being succesful - and every weekly scan a worry that we wouldn't see a heartbeat).

I think I've made up my mind that I don't want to have the CVS - I don't want to take the risk and even more so now as I really can't trust the results I've been given - so why risk a miscarriage on inconsistent information?

I need to take into consideration my partners view too though and we haven't had a chance to talk this through yet....

Nuchal fold for DS was borderline. I had 4 scans with different doctors and the measure was different everytime (under and over 3). I ended up having CVs (under GA but that's another story) and the results came clear.

DS was 1:400 (NHS) and I was 39 (40 by time he was born), I had amnio, risky but meant one less stress for rest or pregnancy.

....rest of pregnancy...........

Also meant to say to fifitot - thanks re. ARC - I've looked them up online and will call them tomorrow.

Hi Babyworries

Thanks for asking, yes I'm in this morning at 10.30. Thought I'd be in a state but to be honest this has dragged on for what now feels like ages and I'm surprisingly calm or maybe that's numb!

You're doing the right thing, take time to talk to your chap and make the decision together. My husband and I have tried to talk about it but to be honest, at the moment we're at polar opposites but we've both agreed neither of us can really make a choice until we actually know what position we're in - it's all hypothetical otherwise. But that's just us, everybody is different.

I agree with you - these are just statistics and I do believe that if your child is going to have problems, it has problems regardless of what their numbers say, it's just fate or whatever. Like the screening midwife told me, they have no idea why this happens, it can happen to young or old, healthy or not so frankly what the hell does their number crunching mean anyway, other than weeks of desperate worry for the people they leave to make the final decisions! Hmm maybe I'm not so numb, feeling angry now!

Take care and stay strong - you're doing the right thing waiting for your partner and going through this together.

Good luck Debs3013. Let us know how you get on.

Is it possible to hold on to the fact that the one thing both clinics agree on is that your risk of Down's is lower than the "base" level for your age? So both were "good" results in a way, just one far far better than the other?

If it's just the nuchal fold measurement in one of the two scans that gives rise to concern your bloods are fine, all the soft markers are fine then I would try to internalise the lower level of risk and assume that that's what I'm dealing with.

It is worrying that such different results can be obtained by highly trained and experienced professionals doing their best. And here you are at the middle of it all.

If it gives you any comfort, I had scans at the FMC and UCH and had nuchal fold results of 3.3/4 mm and 3.5mm respectively. Otherwise. my other results were all fine and put my overall risk up to 1 in about 1850 from 1 in 27 (I am 33). UCH were very concerned about this result and told me to prepare for a bad outcome but Professor Nikolaides was much more relaxed, particularly when I said that I would not terminate in any event. He said that in his personal opinion he though it would all be ok (My DH is clinging to this). I haven't gone for a CVS or amnio although I do worry about it constantly. They did suggest that if I was still worried later on I could have an amnio at 34+ weeks where the risk is only of premature labour rather than miscarriage. My fetal cardiac scan at 16 weeks was clear and I have a 21 week scan next week. Since the cardiac scan went so well, I am now back in the normal screening programme rather than at the fetal unit for the next one. It is very confusing to be told such different things by people using the same software who obviously know one another...I really hope all goes well for you.

Hi

Had the amnio yesterday - not too bad I'd describe it as unpleasant but not unbearable and the consultant was very quick. Had a lovely team who really looked after me - midwife actually held my hand throughout!

So just waiting for the next few days, should hear Monday morning.

Hope you're holding up okay Babyworries.

Hi Debs 3013, my partner arrives back today - so we have the weekend to talk and another scan at FMC offered to us on Monday if we want it - currently in 2 minds about whether I should go back and possibly become even more confused.

I really hope your results come through clear on Monday. I'll be thinking about you this weekend.

Babyworries, I want to let you know that I've recently been in a very similar position during pregnancy after ivf treatment. I lost an identical twin at 14 weeks and made the decision to terminate our remaining baby at 31 weeks due to her suffering serious brain damage after a stoke. Its so very hard, having fought to get pregnant, going to though IVF and finally getting there with a positive pregnancy test to face these additional worries. I hope the 3rd set of scans give you answers and rules out the need for an amnio or CVS and you?re able to enjoy the rest of the pregnancy. I did have an amnio 17 weeks, the results came back clear. Debs3010, I know the wait is excruciating and I hope your results are clear too.

Thinking of you both.

Hello AllwaysDoingSomething

I'm so so sorry to hear your story. What an agonisingly painful time you must have been through. It seems that life can be so very unfair sometimes. Getting pregnant feels like such an achievement but there's so much more to deal with after a positive test. I do hope you go on to have a successful pregnancy if that's what you decide to do....