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Confused....High Nuchal risk but low risk from blood tests.

(14 Posts)
princesslaingy Wed 02-Sep-09 17:28:38

Went to Kings College in Lon yest for 12 wk Nuchal scan. The actual scan was very thorough & brilliant, babies heart, brain, blood in veins, nasal bone etc all perfect only prob was thickness of nuchal fold being 4mm, which I was told is a high risk. This alone put my risk ratio for DS at 1:13 but then combined with my blood test adjusted my risk to 1:2128, I'm 30 yrs old. The adjusted risk is now classed as 'low risk' but I still have the worry of the thickness of the nuchal fold. I have been advised by my local midwife to have a CVS which is now booked for Fri. I am obviuosly v anxious that I am making the right decision as the differences between my blood test and nuchal is so different, has anyone else had similar? Should I concentrate more on the adjusted risk being 'low' or the fact that the Nuchal is 4mm?

KittyTN Wed 02-Sep-09 21:04:10

Hi Princess
Sorry that you're having such a grotty start to your pregnancy. Your high nuchal fold is factored into your combined risk score which is low risk. I'm sure you know that CVS carries risks of its own - risks to what is in all probability a non downs baby, based on your combined risk. Also a high nuchal fold can be indicative of cardiac problems in the absence of downs. Are you having the CVS privately or at Harris Birth Right? I think in your position I would want to discuss the results with one of the consultants before committing to CVS. You might want to consider who will actually perform your CVS too, as different clinicians have different miscarriage rates.

My situation is that my nuchal is low risk but bloods were higher risk - combined risk of 1 in 1700. I was not offered a CVS. However, I have decided to see Prof Nicolades at the Fetal Medicine Centre for a detailed anomaly scan +/- amniocentesis if he recommends it. I am 32, my last baby born when I was 31 had a combined risk of 1 in 12,444. I have been totally freaked out by the difference and am only just beginning to bond with this new baby which is quite sad.

Prof Nicolades does his NHS work at Kings/Harris Birth Right it might be possible to contact him via his secretary to help you make sense of your situation. Good luck!

NumptyMum Wed 02-Sep-09 22:20:44

Hi Princess, good advice above from KittyTN. Your combined results are good, so I'm slightly surprised the midwife recommended a CVS. Others I've come across on here have also had high nuchal fold (some much higher) and everything turned out OK. You might find it helpful also to contact ARC (Antenatal Results and Choices) as they might be able to give a little more info about this, or offer you support.

princesslaingy Thu 03-Sep-09 11:33:39

Thanks numptymum and kitty for your advice. I have spoken to a lovely lady at ARC who has put my mind at ease & explained how even the 2 tests together have formed a low risk I still have the underlying issue of a thicker than average nuchal. In many clinics offering a NT scan, with a nuchal fold thicker than 3.5mm they wouldn't even take blood as well as this is a high risk on it's own. I have been booked in for an anomaly scan & special cardiac scan too but this is at 20wks as advised babies heart too small at the mo. This was all booked in at Kings but only reading thru my notes again that I have seen it there as was obviously in too much shock at time! We are going ahead with CVS as I will not be able to relax for whole of pregnancy, its been a v tough decision. We're going to our hosp in Brighton tom where the consultant does this "all the time" and luckily will have the results back on monday, but it'll still be along w'end.
Good luck with ur anomly scan Kitty, 1:1700 with a low risk nuchal sounds perfectly fine to me. Did you have this at Kings too? I have spoken to lots of other people and my midwifes etc and have only heard v good things about Kings and it appears they only offer a diagnostic test if they think you are high risk, I was offered a CVS at Kings after my scan to have it done there and then but couldn't believe what i was hearing so refused, in hindsight I would have had it done. I think your comparison to ur 1st baby where ur risk was very low prob makes this seem high but isn't at all.
I hope you get to bond with ur baby v soon, I have similar feelings and do wonder if all this extra technology just causes more unnecessary stress.

NumptyMum Thu 03-Sep-09 15:26:33

Hi Princess

You might find Millarkie's post at the foot of this thread useful re why you were being offered a CVS - I hadn't realised this before (guess ARC may have explained this already). I know there are risks of miscarriage with CVS, but remember these could sadly be babies that were very likely to miscarry anyway; rest up in the 48 hours after and try not to exert yourself too much. I know it is a long wait - we went on a day trip to the sea to try and occupy ourselves. I hope it goes well - once you know the results you'll be able to move forward.

KittyTN Thu 03-Sep-09 16:30:40

Hi Princess and NM
Just wanted to wish Princess the best luck for tomorrow. I will be thinking about you! If you feel up to it, do let us know how it all went.

I actually had the combined test in Kent and I know that a Kings/FMC scan may well have given me a better risk score as they take more factors into account. Next time it's FMC from the beginning for me! 2 weeks until my anomaly scan then hopefully I'll be able to relax too. Also ARC are such a great charity - so kind and helpful. Not sure how thay are funded but I'm really keen to make a donation.

Don't feel bad about having declined the CVS immediately. It is a tough decision as you say and this way whatever happens you will be able to feel that it was a properly considered decison and you did what was best for you. That's the most important thing.

jaabaar Thu 03-Sep-09 21:51:12

Just wanted to share my experience. I had a first pregnancy where I had a nuchal fold of 2.6 mm which is not that bad, however the blood tests were not goods and I got result of 1 in 23! I was offered a CVS (fetal medical centre - professore nikolaides) straight after. I was alone at the scan as my partner was abroad working. Very very difficult as you are very shocked at first! I went ahead and results came back positive with genetic disorder. Subsequently after very painfully considering all options I decided for a termination.

I am now pregnant again. Had the NT test and it came back wiht an even higher NT of 3.9. However this time blood test was better. Still my result this time was 1 in 11!! Absolutely devasted! Had CVS all was normal this time! however the waiting is undiscribable.

Now you have to worry: WHY is NT high if no chromosomal problems? Well first is the heart scan - that turned out fine too. Thne the Level II scan - had it today and was fine too! So now.... I will have to wait and see.

It is very very distressing, all of those tests. You can only personally decide if you want them or not. If you know you would go ahead wiht a pregnacy anyway I would not risk invasive tests.

I can only say that ONLY when you are in the situation - you know how bad it really is - the waiting ......

I wish I wouldnt have worried so much and I want to tell all that a positive outcome is always the most likely (although not with me first time).

Good luck to all!

G x

KittyTN Thu 03-Sep-09 22:09:56

Hi Jaabaar
What is a level II scan? Glad it was fine btw!

jaabaar Thu 03-Sep-09 22:17:52

Level II scan is the 20 week anomaly scan. I had a consultant doing the scan in view of the last problems I had.

Still the high NT is ALWAYS at the back of your mind....

KittyTN Thu 03-Sep-09 22:58:25

I feel the same about my wonky bloods. At first I was almost convinced I was a false negative. It's taken weeks to feel positive about this baby and I suppose I will only stop worrying when the baby is born, hopefully normal. Such a shame to waste so much energy on worry.

NumptyMum Fri 04-Sep-09 17:12:21

Hi Kitty

Hoping your CVS went well today; occupy yourself this weekend doing nice comforting things eg walk by the sea, reading a good book or watching a film to try and keep your mind on happier matters rather than worrying. Wishing you all the best...

princesslaingy Fri 04-Sep-09 18:09:06

Hi all,
Thanks for sharing ur similar experiences, its comforting to know others are faced with the same situation.
After a lot of deliberation about having the CVS today we decided to go, I was so anxious all morn & felt physically sick... still confused 'why' this was happening when my adjusted risk was 1:2128 but with a Nucal of 4mm!!! We expected to just go in and have the procedure. But as it happened the consultant, Dr Rob Bradley, took us into a room and sat us down for a chat. Straight away I confessed my concerns & confusions as to why we had been offered a CVS & recommended it by various mid wifes & the sonographer at Kings. He was the first professional person to actaully be positive about our statistical results from Kings & talked things thru making everyhing much clearer on a personal one to one human level rather than bombarding us with stats, which is exactly what we haven't had. He said forget what anyone else has said, this starts here. He completely agreed that even tho my Nuchal was 1mm thicker than the NHS guideline the fact that everything else was good had dragged that risk down significantly. Where everyone was concentrating on that one thing that looked bad, all of the other things were good, the Nucahl fold makes up one tiny part of a big jigsaw that on its own can look bad but put together can look so much better.
As a result of this long chat, that actually lasted longer than if he was to go ahead with the CVS procedure, we decided to not take the risk of MC with a CVS but to concentrate on all the good things that came out of our babies scan. Dr Bradley was very pleased with our decision and even commented that if had we had wanted the CVS he would be doing his best to talk us out of it. Just for the record, I would have completely trusted him doing the CVS as he does many, but I was more thankful that he took his time to talk to us rather than treated us another 'high risk' case & did the CVS regardless, which is how Kings seem to operate.
We are now so relieved that we can put that behind us and carry on with our pregnancy, we have been booked in for a special cardiac scan at Guys & St. Thomas's at 16wks which we have been assured will be a lot nicer experience than kings. Rather than worring about that scan, we're using the positive approach that at least we get to see our baby an extra time than most people!
I hope this encourages others to not dwell on the 'one' bad thing that can come out of a scan but to look at the bigger picture in a positive way, it doesn't have to be all bad.... nothing is certain anyway until that baby is in your arms. The CVS does help those who are unfortuante to be diagnosed with a DS baby & can then have a termination if they wish but what about all the other women who then have a MC after finding their results are all clear.
I know some people just 'need to know' and thats fair enough but when everything else is ok I do wonder why we put ourselves and our baby thru this worry!
Good luck everyone with ur final decisions

NumptyMum Fri 04-Sep-09 19:08:54

Hi Princess - and sorry for confusing you with Kitty earlier, posted in haste blush. I'm really glad you had a good consultant who took the time to focus on you rather than just get on with the job he'd been booked to do; and I really hope that all goes well from here smile

KittyTN Fri 04-Sep-09 19:26:59

Hi Princess
What a rollercoaster! Completely agree that screening has it's own risks. I'm so pleased for you that Dr Bradley treated you so well - bet you're glad you didn't go for the Kings CVS now?! Having my anomaly scan on 16/9 - I'll post how it goes. I'm sure we're all going to be fine in the end - fingers crossed.

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