increased nuchal translucency - very worried

[Madigan]

I am in a bit of a state because at my 12 week scan yesterday at FMC (my 3rd pregnancy), the nuchal translucency was measured at 2.9 when the highest normal reading is apparently 2.4. So I was told I have an increased risk of having a baby with Down Syndrome. When all the other factors were taken into account (i.e. blood test, and absence of any other DS markers), the risk was assessed at 1:2140. Now I know that is a really low risk, but it is double the risk of my previous 2 pregnancies and I just cannot stop worrying about it. I know I need to get it into persepctive ...........
I am 37, will be 38 at time of delivery.,
I will not have a termination, so no point having an amnio, but please -has anyone else been thorough this, and does anyone have any advice to stop me obsessing about this for the next 6 months, and help me get it into perspecitve. ? Thanks

If somebody told you that risk was 1 in 2140 without you having had the fold test you'd have been quite pleased wouldn't you? It's not a 'bad' result and the absence of an other markers is very positive. From what I understand the FMC is the best place to go for this type of testing and what you've come out with is a 'good' figure, BUT as you know somebody will be the one with a baby with Downs Syndrome and it may be you. What would that mean? It would mean that you would have a baby with the same potential for a happy fulfilled life that your other children have. Yes, things might happen differently, at a different pace and your expectations for that child would be different but you would still love them and they would still love you and their siblings. Congratulations - you're having a baby

You know you won't terminate so you are quite right not to put yourself through the stress and risk of onvasive testing but you could ask for a cardiac scan in 5 or 6 weeks. I had one with dd3 because of dd2's heart defect and it was very reassuring as they can see so much about the heart. As I understand it worries about the health of the heart are the major concern for children with Down's Syndrome and if you can get a good look at that organ and be reassured as to the state of it that may go along way to helping you. Likewise if there is a problem you can start the discussions about how it will be treated and fixed. Good luck.

Very sensible post from Northernlurker. Each pregnancy is different: your age does change the odds, but there's no merit in comparing the odds with your previous pregnancies as these were different babies. So just try to think of it as 2139 chances that you will have a baby that does not have Downs, and perhaps 1 chance that you will. I hope things go well for you with the rest of your pregnancy and that later scans will give reassurance about the health of your baby.

Well if it helps any a friend of mine had a reading for her baby of 2.13, which worried her (and her partner) sick, and they refused all other scans/tests after that. I do wonder about the nuchal scan as it seems to give such cause for worry. Her son turned out to be perfectly normal - actually very bright! The scan by itself doesn't seem an accurate enough indicator.

Thank you very much for your words of wisdom, they are a real help. I am starting to feel a bit better now, but saldy this will be at the back of my mind for the rest of the pregnancy now. Wish I had not had the scan TBH.

I had a reading of 2.3mm at mine, which I was told was low (my consultant said anything above 3mm is high).
My end risk factor was calculated at 1:301, which again is still classed as low risk (according to NHS guidelines) so my consultant was against me having an amnio.

I eventually had a marker scan at about 18 weeks, which showed no markers and halved my risk again to 1:602.

We decided that we wouldnt have the amnio and consultant kept saying 'but you fall into the low risk category' over and over.

I think the problem with private and nuchal scxanning is that we get actual figures. Had I have had these tests done on the NHS i would have been told either high risk or low risk, without knowing how far into each category I fell. Its caused us a lot of anguish and I still worry about the baby but have to believe that hes fine. (am due this week).

Can I recommend ARC which were a great help to me, and lots of others on here

Madigan - please do not worry! That is a fantastic result from your scan, despite a slightly high nuchal and your risk is fabulously low. For your age alone, without the scan and other tests, you'd have been given a risk of about 1/120 so to have the risk 20 times lower after these tests is great. Without invasive tests, you can never be sure, but this is as good as it gets (trust me - with a nuchal of 4.9mm and a 1/4 risk, I'd have given anything for those stats). I agree with the advice to request the detailed heart and structural scans at 18-20 weeks for further reassurance, but you have to remember that these stats are definitely in your favour.

You wouldn't put £100 on a 1/2140 bet and actually expect to win would you?

We had a 1:13 chance with DD (now 2), this was before the blood tests were on offer. I was convinced it was bad news. We had a CVS test and 2 heart scans and all came back clear so I'm not really convinced how useful the nuchal measurement. The blood test is suppoesd to give a much more accurate indication I believe.

Have a few weeks until my 12 week scan for DC2 and I have to admit that I am starting to think about the nuchal measurement and wonder if it will be as bad as last time.

Please try not to worry, the odds you have been given are extremely high

Hard as it is, you have to try and remember that with odds of 1 in 13, that means 12 in 13 chances for no problems and so much more likely for you to be amongst those 12. The stats are always hard to get your head around, but it's not because the nuchal measurement is not useful. It's giving you a risk factor - not a diagnosis.

Thank you all again - am feeling so much better having talked to the ARC - the lady was so reassuring and knowledgable. She told me that the muchal measurement of 2.9 was at the upper end of the normal scale ....... a bit different to what I was told at the FMC .... I do feel much more positive about it thanks to her and you guys... got it into perspective, and time to stop worrying!
Good luck with your scan Porridgebrain, and thanks again everyone xxx

Streuth, I had my nuchal last week. I'm the same age as you - 37, shortly to be 38, Our age risk is 1 in 191, IIRC, so your adjusted risk is very low! Mine too - at 2787. I was overjoyed at the result! Really, don't fret!

I had my nuchal scan last Friday, my resuls for the scan were normal, but one of the blood tests brought my risk down to 1:46 so I am feeling really stressed about this. I am thirty and so my age was also in normal range but obviously the bloods carry more weight in the risk assessment than I thought. I am now booked in for a CVS tomorrow morning and I am feeling extremely nervous and praying that it will all be ok!

Good luck, cith - I have everything crossed for you. I'm sure all will be well

Let us know how the CVS went cith. Hope ok!

Thanks for your kind messages Hobnobfanatic and skydance1. I had the CVS yesterday morning at St Georges hospital, SW London and the procedure went ok. The consultant was brilliant and instilled loads of confidence and calm which was really good (and quite important I guess). The actual process was really fast - about 2 min, but I did find that it hurt a little as aparently my tummy muscles were all tense (not really that surprising!) The sonographer did a thorough scan for about 20 minutes before the consultant arrived so we really did see a lot of our little baby bean bouncing around which was wonderful...then the whole procedure was conducted while they scanned so could be assured that the baby was safe (well DH could - I had to shut my eyes and squeeze his hand once they brought out the long needle!) Saw the baby and saw/listened to its heartbeat afterwards which is aparently a sign that the risk of MC is hugely reduced so that was reassuring. Spent the rest of the day on the couch feeling headachey and crampy/sore tummy and still taking it easy today. Feel really relieved and calm that the procedure is over - having had a MMC earlier in the year feeling quite vulnerable about the whole thing - I really didn't expect trying to have a family or getting pregnant to be this stressful! Now just praying and putting really positive thoughts out there for some good results of a normal and healthy baby.

Glad to hear it went well Cith. You're brave to have gone through that and hope the results are all good.

It's 3.5mm and above which is considered thickened for a nuchal translucency measurement.

GOt the all clear for the test results - thank goodness!! SO SO relieved we cannot describe and now fully planning to stop worrying and enjoy this pregnancy.x

That's great news Cith - well done! xx enjoy the rest of your pregnancy xx