NT measuring 9mm. Am numb

[mewbilly]

Hi,
I have just returned from my dating scan (11 weeks 1 day) and discovered that the Nuchal Fold is 9mm. I am aware that this is VERY HIGH and the consultant explained that the normal range is around 2-3mm.
The sonographer also found a lot of fluid around the head - noted on my notes as "an oedema surrounding the fetus".
We have an appointment with the Fetal Medical Clinic booked for first thing Friday morning when they will do another scan and perform CVS.
I didn't have any bloods taken, and in fact forgot to ask as I was so upset having to take all of this information in.
The consultant did explain that the chances of downs was very high but that they would also be checking for further chromosomal abnormalities on Friday.
I am utterly devastated and in shock.
Am I right in thinking that there is only really one likely outcome here, ie. termination?
Any advice would be greatly appreciated.

Oh, my! What a situation to be in. We all prepare ourselves for this sort of news with NT scan but, thankfully, don't often find ourselves down the CVS route.
You'll have a lot of replies from people who have experienced everything you've experienced so far and had a good outcome, and some who have not. Until the CVS results come back, nothing is conclusive. Don't make any decisions yet, it hasn't got to that stage.
Get through the next few days and love what you have inside you. Don't give up just yet. My thoughts are with you.

Thanks for you message ErinH.
I think the look on the consultant's face and the fact that we were immediately led to a "Quiet Room" after the scan made me fear the worst.
Yes, you are right - I never envisioned going down this road. I was so worried that there would be no heartbeat, so when I saw it beating away I breathed a sigh of relief and thought that the rest would all be ok.
I am 39 and have a 3 year old dd, and the pregnancy was a wonderful surprise after 2 years of trying, considering IVF, etc..
I just feel so sad..

Oh mewbilly - I'm so sorry to hear your news. I went through similar a year ago and I remember only too well the feeling as you swing from seeing that heartbeat and thinking everything is ok, to suddenly having the bottom drop out of your world when they tell you it doesn't look so good after all. And I'm also sorry you have to wait until Friday to be re-scanned and have the CVS. The waiting is so hard, and the only advice I can give is to find as many distractions as you can to pass the time until the results come in early next week (will probably be Monday or Tuesday for the 'quick' results, then two weeks for the full results). The CVS itself isn't really so bad. Its uncomfortable, and I can't tell you it feels particularly nice having a needle stuck in your placenta, but it doesn't really hurt and I had no problems afterwards.

9mm is very high, but the odds they would calculate for your baby having some kind of chromosomal problems are never greater than 1:2 - that always leaves a 50/50 chance of things being better than they look right now. In my case, I got 1:4 odds of Downs syndrome after a 4.5mm nuchal and crappy bloods - and baby was unfortunately that 1. I also had a high risk of other chromosomal problems (the most common being Chr 13, 18 and x) or just non-chromosomal heart problems - which might or might not have been fixable. There are lots of possibilities, and not all of them (so) bad, so if it helps you to think positively then do. In my case, I was just kind of numb for the week of waiting for my CVS, desperately searching google for positive stories to cling on to. Its a shitty situation whatever the outcome and whatever you decide to do about it. Talking on here has helped a lot of us through the waiting and, where necessary, the aftermath. I hope the week passes quickly for you. xx

Hugs for you mewbilly, 3 months ago they sat DH and I in that 'quiet room'. I can remember the look on the sonographer's face when she said "I'm a bit concerned about baby I'll get a consultant to come and look". I got some hope from a thread on here where two women with that kind of scan came out of it with a healthy pregnancy. And I got support from the women here when I wasn't so lucky. Be gentle with yourself and take what distractions you can. And take one day at a time. I hope it passes quickly

mewbilly I'm sorry you're going through this. I have been where you are right now, for us the outcome was not a good one but you will find stories on here of large nuchal fold results and healthy babies. Equally you will find stories on here of parents with children born with Down Syndrome whose children have wonderful quality of life. A bad outcome, and termination, are not foregone conclusions, even with such a high result.

I found reading the full spectrum of experiences on here very helpful in managing my feelings and being able to take a decision on what to do.

It's a huge amount of information to take in and so, so difficult. The not knowing is almost the worst time to be honest. Poot's advice on just getting through the next few days is very good.

In our case, nuchal scan showed NT of 7.5mm, fluid round our baby's abdomen and a very shaky heartbeat. Combined with bloods I was given a risk of 1:2 for Down's Syndrome which the CVS showed it turned out to be. Our baby was so sick with all fluid around his body and a heart that was barely functioning that for us it was a slightly less difficult decision to opt for a termination. It was a bleak outlook for us - either terminate or wait to miscarry.

I really hope your CVS on Friday brings you happier news. xx

Thanks for your lovely replies, ladies. It is comforting to hear from others who have been there.
At the moment I just feel so confused and really upset.
I had been counting the days to the scan for weeks and weeks and was so excited, but funnily enough something was just niggling away that all may not be well.
I am just struggling with how I will get through the next couple of weeks,whatever the outcome may be..

Hi Mewbilly

I am sorry you find yourself here. I had a similar nuchal scan two years ago - 8.8mm nuchal. My baby had fluid everywhere too. When I went for CVS the following day, the consultant measured the nuchal at over 10mm and it was made clear that the baby wouldn't make it to term because of the fluid rather than the nuchal per se. Oddly I was given a lower risk of Downs but a 1 in 2 of other chromosomal abnormalities, and it turned out to be Turners, which can work out okay, and which does often come with a high nuchal, so that is a possibility for your baby- and if so, Turners really can be okay. It just wasn't for my baby, and we terminated.

I think you need to just try to get through the next few days however you can. The picture may look different when you go for CVS. In the 24 hours between my nuchal scan and the CVS (which I didnt end up having, but the consultant did a full scan, and it was clear then that the baby wouldn't survive) I googled and there were actually a lot of positive stories of nuchal measurements over 8mm. So don't give up yet.

Big hugs - I know how shocking and unbelievable and above all, just how saddening, it all feels.

hi mewbilly. i was there the monday b4 last (in the quiet room I mean). see my thread 6mm and hydrops.

I am so so sorry. I hate to say it but i think the fluid is the key issue. I was quite confused about the terminology (they called the fluid hydrops, skin oedema and cystic hygroma). I searched initially on hydrops and it seems the fluid can turn into hydrops fetalis in the third trimester where fluid takes the place of the organs in which case it is very bad news. I found studies where hydrops found in first trimester was also generally a bad thing. I have also been told that the fluid can just disappear. Where I have found people reporting this, it seems to have happened around the 16th week. Look at posts by peelprincess to whom this has happened.

Apparently the fluid can indicate heart problems and in the past I have been offered detailed cardiac scans at 17 weeks although sometimes you have to go back a week later if they can't get a good view. If your cvs comes up ok then you could go for the heart scans and you could be one of the lucky ones. I hope you are.

My thoughts are with you. I am happy to answer any questions if it helps. I found the CVS emotionally upsetting but not physically disturbing. You have to rest for 48 hours afterwards.

I found this site very useful www.downs-syndrome.org.uk/ and also ARC are really helpful at talking through choices.

I'm sorry if I've depressed you. Take care of yourself and I hope your CVS is good.

Hi mewbilly

I echo what all the others have said, I am so sorry that you find yourself in this horrible situation. It is so disappointing and so sad when you have prepared yourself for happy news and you come out with a void instead.

Our baby had a nuchal of 5mm at 11+5 and we were initially given 1:6 of Down's, however my blood did bring the risk down for us. From the extensive reading that I did at the time I do think that 9mm is quite serious- but there are stories on here of women who had a very high reading and who went on to have healthy babies. Also, as crazycatlady says there are stories of those who have very happy family lives with children who just happen to have Down's syndrome. This period of waiting and not knowing is so hard, and I really feel for you.

We were lucky and our story has had a happy outcome so far, although we are still waiting for our 22wk scan and a further heart scan to know for sure. It is so hard.
Wishing you strength for the days ahead. you will find lots of support here if you want it.

Hello mewbilly, I have recently found myself in a very similar situation to you. Last Monday was my dating scan, and I was told completely out of the blue that the Nuchal Fold was measuring higher than they liked, at 4.2mm and there was what looked like a cystic hygroma present. They took us through to that horrible 'quiet room' as well and explained exactly what this meant. I was also far too upset to ask any sensible questions or even remember anything they actually said to me and I had a blood test but I'm still not exactly sure what that was for. The whole experience was really upsetting and made worse by the fact that I had just expected a simple dating scan, not to have my world turned upside doesn.

On Thursday, I had another more detailed scan and a CVS done and am now sitting twiddling my thumbs waiting for my results.

I have probably gone through every possible emotion in the last seven days but have found a lot of support through mumsnet and another brilliant site someone here recommended to me - www.arc-uk.org

It is a really helpful, very unjudgemental site that explains all the tests, what the results might mean and all the possible outcomes. There is a phone number and email address you can contact them on if you want to talk.

As regards the CVS procedure, I think its much scarier thinking about it than actually having it. It found it a bit uncomfortable for a few hours afterwards but it didn't actually hurt at all and was over very quickly.

I hope Friday goes okay, I will keep my fingers crossed for you.x

I just wanted to add that ARC are amazing, you can even just ring them and talk to them and they gave me very wise advice on what to do (and with whom) which definitely made a very difficult experience easier:

www.arc-uk.org/

Thanks again for your replies - I am trying to take everything in and trying not to sink into a pit of hopelessness so this is really helping..
Does anyone know whether they would not have bothered with the blood tests because there was no need (ie. the NT measurement is so high that they didn't need the blood test results to confirm the likelihood)?
Or did they / I just forget and is this something I should bring up on Friday?
I am trying to get my head around all of this and go armed with questions on Friday.
As I am sure you all are only too aware this is taking up every minute of my day. I cannot stop thinking about it - I went to sleep last night with the picture of the scan in my head and had a sleepless night which had me in tears at 4am.
I am working at home this morning but out later this afternoon to deliver a presentation, I just hope I can keep it together..

Hi Mewbilly, when I had the scan I declined the bloods because the results of the scan (which they called cystic hygroma in my case, but were very similar to yours) meant that we would go with a CVS in any case and I didn't want more tests thanI needed. I can't see the consultant not recommending a CVS for you, and since the bloods are done to screen people for invasive test, they won't be necessary.

I completely understand it taking up all your thought, to be honest, it still takes up a lot of mine. I'm surprised that you are still at work. Is it possible for you to take sick leave now? I know that work can be a good distraction, but this is something almost impossible to be distracted from. It really is important to take care of yourself, people will be understanding - honestly.

thinking of you

Yes - I agree with Sarah. The blood tests are to combine with the nuchal scan to get a more accurate risk assessment, but in your case you will be in the 'high risk' category, whatever your blood tests say, so would still be recommended for CVS. Did you say you were going to the FMC on Friday? The London one? I'm sure they'll explain the same to you then. The CVS gives a definitive answer on the chromosomal issue anyway, so the bloods wouldn't add to it.

Work's tough isn't it when your head is spinning from this news. I actually went straight back to work after my termination last summer, even though the doctor had signed me off for two weeks. I just couldn't bear to be at home with no distractions. Not that I was any use at work I'm sure, but it did make the time pass quicker. See how you get on, but don't be afraid to take time off if you want to. xx

Thanks Witlesssarah and LittlePoot.
I only work term time and so will be off next week, only today and tomorrow to get through.
Work is distracting me a little so I will see how I get on. I guess I will probably take same time off after half term when I will probably need it more.
LittlePoot - I am at the FMC on Friday first thing. It's at the QMC in Nottingham.
I have just been reading up on the ARC website and found out that the karotype tests can tell what sex the baby is. I am not sure I want to know this as it makes it worse for me, I know others prefer to find out but it's not for me.

Thankyou for all of you kind messages and advice, it really is helping to read / share experiences and advice.

The Karyotype does show the sex, it is a full list of the chromosomes, but your consultant should only share that with you if you want to know.

I was very much of your mind at your stage. Really didn't want to know the sex. My midwife's and consultants were very supportive about this, and very supportive also when I changed my mind.

there is still the possibility that you will have a healthy pregnancy, in which case many people like to know the sex. For me, connecting with my daughter as a real baby that I really lost has been important, you may find the same.

glad work is a distraction, you're doing great getting through this week

mewbilly I too have been where you are (6.3 nuchal fold, cardiac complications and termination) and you have my sympathy. It is the most numbing, unpleasant dreadful moment when you see the looks on their faces. I didn't have the "quiet room" experience. I had the "switching off the monitor" scenario. And I know they are so sorry, but also so professional, and you are so numb you don't know what to say or how to react because your heart is breaking.

I second that talking to ARC is a really good idea. I found them calming, non judgmental and my talks with them helped to clear my mind. The doctors have a lot of information too, and what they share kind of depends on what you want to know. It is so personal ... I didn't want to know anything, I think I knew the truth somehow, and I found that the scans for the CVS and foetal cardiology were terribly and painfully personalising. Other people find it helps to bond with the baby.

The other thing you have to do somehow is take one day at a time and listen to the advice and try to make sense of what you want to do yourself. And try not to expect too much of yourself. This is a terrible shock and it takes a lot of time to come to terms with it.

Sorry to hear of your terrible experience rushingrachel.

Can I just ask a couple of questions regarding the CVS: How exactly is it performed - through the abdomen or via the cervix? Do they give you a local anaesthetic?
Also - how long should I expect to take to recover from it? Will I be OK to be out and about the following day or do you need to rest for sometime afterwards?

I just need to prepare as weekends are usually spent rushing dd from ballet to swimming to friends, etc.. and need to know whether to enlist help from grandparents.

Hi mewbilly

The CVS is usually done via the abdomen, unless the placenta is in the way, which they'll look for on the screen first.

I was given an injection of local anaesthetic first. Then the needle for the CVS went in. Don't be alarmed at how long the implement looks, they literally only go in an inch or so. It was uncomfortable like someone was dragging my insides up and down, but no pain. It took less than 90 seconds to perform. I know that because the consultant asked me to count down with him from 90 seconds, and he was done before we got down to 25. They will then check baby's heartbeat on the scanner again briefly after the procedure.

There may well be a couple of people in the room with you, a consultant will perform the CVS and there will probably be at least one midwife in there too.

I would suggest resting for a day afterwards. I felt a little shaky and my abdomen was tender. To be honest the emotional fallout of going through the CVS was enough of a reason to rest. I just felt like curling up under a blanket.

xx

Hi Mewbilly don't have much more to offer than what the lovely ladies here have already posted but having gone through this myself too i just wanted to say that my thoughts are very much with you at this difficult time.

Good luck with the CVS, for me it didn't hurt at all like crazycat said it was just a little uncomfortable. I didn't have any pain afterwards but you may want to plan to rest up anyway as it takes it out of you mentally too.

Good luck Katie xxx

Hi mewbilly. My cvs was throgh the abdomen and that seems more normal though my friend had it through the cervix. I also forgot to get my bloods but the next day my cons said there was no point as I was having a CVS. CVS was as described earlier with a local anaesthetic and I was hysterical as soon as i lay on the bed, I found it released a lot of emotion I had been bottling up when I was getting on with my life. I have been off work since my 12 week scan.

When I got the results for the CVS which showed downs in my case I was very pleased to know he was a little boy and when we were making our decision we were able to imagine a real person so that I felt our decision was really about our son and not a lightly made choice.

I hope tomorrow goes ok.
x

I felt the same as Manitz. Initially I had no desire at all to find out the baby's gender and if the CVS had been ok and he had been otherwise healthy I think it would have stayed that way, but once we knew his prognosis was certain and it was just a matter of time I was very glad indeed to know he was a boy, be able to name him and remember him. It really helped with the healing process and being able to talk to DH about him.

Sorry if this is a bit too much for you right now but in retrospect I'm very glad we did find out. Hopefully everything will be ok and it will be the last thing on your mind, but just in case, also know that you don't have to find out the baby's gender immediately at the same time as the CVS results, you can always call up and ask a bit later on if you feel you'd like to know. Thinking of you tomorrow xx

Hi everyone,
Thanks so much for all of this information and your kind wishes.
I have been keeping busy today and trying not to think about tomorrow too much.
DH hid the picture of the scan from me as he knew it was upsetting me too much to look at it but now I think I would like to look at it again to maybe try and make sense of things in my own way.
We talked about finding out the gender last night and both decided that we didn't want to as, for us, it makes it even more painful.

I will let all of you lovely ladies know how I get on tomorrow, and once again can I just say a big THANK YOU for being there. xx

Haven't forgotten about you, mewbilly.
Still here if you want us. xx

Hi ErinH,
Have been meaning to update but haven't really felt like firing up the laptop.
Well, the CVS last Friday was as OK as it could be I suppose. The worst bit for me was before the scan when the consultant warned us that the baby may have died since the last scan.
We were told to call this Tuesday for the results and then have a chat with the consultant to see what the next steps might be.
The consultant actually called me at home on Monday as the results had already come in and he told me that the baby had Edwards Syndrome. He also said that the baby would not be likely to make it to birth, and that I was more likely to miscarry.
Did I want to let nature take its course or to terminate? (we had discussed this at the CVS and I had said that this was what I was considering). So I was asked to go back to FMC on Tuesday and discuss this further.
We signed the consent forms and discussed it further but I had already decided what I wanted to do - I just couldn't live day to day wondering whether this was going to be the day the baby died. What made it worse for me was that the appointment at the FMC on Tuesday was at exactly the same time / across the waiting room that we had been in for our dating scan the week before, all hopeful and excited.
We were shown the results and even though I didn't want to know the gender I read that it was a boy.
I am sad to say that I had a termination yesterday morning, and although I was so sad and upset part of me felt relieved that this hell was at least over physically. I appreciate that it will take a long time to heal but am just taking each day as it comes. xx