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.

[peelprincess]

Hi Mewbilly, just read the post and my thoughts are with you. Take care of yourself xxx

[rushingrachel]

Mewbilly, just read your news and so sorry to hear what happened. I empathise with the feeling that you were just relieved to have made a decision. I felt that way too. I wish I could say something to make you feel better but nobody can do that.


Take your time and try to grieve properly. I say this because I didn't - I rushed back into life and pretended it hadn't happened. Didn't talk about it and didn't let it in. Then months later I found myself in a heap of self blame and devestation and people found it harder to understand because it was a while back and everyone thought I'd coped well. Everyone deals with things differently but take all the emotional support you can get.

[manitz]

Hi Mewbilly, i'm so sorry it was bad news. I also felt some relief following the termination which is unexpected. I hope you are taking it easy. x

[Crazycatlady]

mewbilly I'm so sorry to hear this. I have been where you are and the heartache is all consuming, but I also recognise the sense of relief once the physical trauma is over.

There are support threads on here for women who have been through similar circumstances so if you feel like talking on here or on those threads there are some lovely ladies who will understand exactly where you are coming from. I remember just reading them was comforting sometimes xx

[ErinH]

I am so sorry to hear this. As you say, so much can happen in a week, it's hard to believe you can go through so much in so little time. But the rollercoaster is over now and the healing can begin. Look after yourself and take comfort in your dd. My thoughts are with you. xx

[GreenStinkingStumpSleeves]

I'm so sorry about your baby

It must have been horrendous for you. I hope you can start to heal and I hope you have lots of RL love and support x

[mowmi]

I'm so sorry to read your update. It's so sad and you must be in pieces. Look after and be kind to yourselves x

[NothereisnobodylurkingbehindU]

Sorry to read your news. It must be very hard for you both Take care of each other

[mewbilly]

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

[ErinH]

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

[mewbilly]

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

[Crazycatlady]

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

[manitz]

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

[katiecubs]

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

[Crazycatlady]

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

[mewbilly]

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.

[rushingrachel]

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.

[witlesssarah]

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]

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.

[LittlePoot]

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

[witlesssarah]

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

[mewbilly]

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..

[lucy101]

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/

[junebug8]

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

[jeffily]

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.