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Nuchal Transluceny - So Gutted

(18 Posts)
rushingrachel Wed 07-Oct-09 16:04:49

Hello, I am just feeling so gutted at the moment I need to get it all off my chest. We went for our nuchal scan three weeks ago and the doctor immediately started saying how sorry she was and how the neck was really thick. She referred me for a CVS, and I had to wait a week because the first time they couldn't do it because the placenta was face downwards. The results of the CVS came back clear, but the nuchal thickness has increased and is now at 5.8 mm from 5.1 (which was already, I am told, very high). I live in Belgium where the hospitals are catholic foundations and won't undertake a termination over 12 weeks without being able to diagnose and incurable illness. So when the chromosone results came back clear they wouldn't tell me anything about what the chances were that things would now be ok. So I came to the UK for a private consultation. And I was told very clearly that 5.8 is very thick, the likelihood of the baby having heart complications is high but that the risk of other abnormalities is also very high at this point because, put simply, the increasing thickness is a very bad sign.

I really appreciated the frankness of the doctor and his willingness to discuss with me the ups and downs of stopping now and going on with the the testing. But the message is such a tough one. So, reluctantly, I have decided to have a termination, for which I also have to come to the UK (very bad does not equate to a diagnosed incurable illness in Belgium).

I am so miserable I have hardly known how to stop myself from crying all week. It's not like me, because normally I am very rational, but every time I go to the hospital and have a scan it personalises things so horribly. And I know I am going to be feeling much worse when I have actually terminated my baby. I never imagined being in this position. Add to this the fact the whole world around me seems to be pregnant. We had friends staying at the weekend, they announced they were expecting. A cousin has just had a little girl. I saw a pregnant woman getting off the bus this morning and nearly burst into tears.

Is there anyone out there who can tell me I will feel better one of these days? This has been the most confusing, most gutting, most incomprehensible few weeks of my life.

emmx Wed 07-Oct-09 16:12:02

You poor poor thing - no personal experience myself but know how emotional I was in pregnancy and all was fine for me. I'm sending you a virtual hug - I have tears in my eyes from reading your message. Good luck, and I guess you will feel like anyone would who loses a baby/child at any age and will have to deal with it like a bereavement of any kind. Again so sorry you're having to go through this. Speak to your GP, maybe get some counselling, but also take as much support from your family/friends as you can....

Dragonfly73 Wed 07-Oct-09 16:12:30

hi rushingrachel,

i have had 3 miscarriages, 2 by D&C following scans which revealed a non viable pregnancy. I havent had to terminate as such becuase my pregnancies had already ended by the time i had to have a D&C. My body just hadnt realised it yet.

I cant begin to imagine how difficult this is for you but i can tell you that it does get better. It is a cliche but time truly does heal.

and frankly right now if seeing a pregnant woman makes you want to cry then let yourself cry. The worst thing i did after my miscarriages was try to be strong and keep it all inside. all that does is bottle it up and it turns to poison and comes out in other ways. Let yourself grieve. If you want to lock yourself away in a room for a couple of weeks, do it. Grieving is necessary and normal.

i am so sorry you are going through this. Please shout if there is anything i can do.

EldonAve Wed 07-Oct-09 16:16:42 run a helpline which may be of some use to you

OrangeAnge Wed 07-Oct-09 16:40:05

I really am sorry for you, and I do understand how you must be feeling. The first thing I have to say is it will get better, in time, but just don’t be too hard on yourself at the moment. You need to go through all of these emotions to get through the other side. If you feel like crying then do. There will be lots of tears along the way but they will get less, I promise.

I was pregnant last year but unfortunately, anencephaly was detected at the 12 week scan. We decided to terminate and although all reason told me it was the right decision it was still very difficult to deal with. It was made especially hard as most people didn’t know I was pregnant as we were waiting until after the scan to break the news.

My advice to you is to get a good support network around you – whether it is your partner, friends, family or a counsellor. Don’t be afraid to ask for help. I left it, thought I was coping and then realised I really wasn’t. I was lucky enough to be able to see a counsellor through my work, but your GP could suggest help if you decide you would like to talk it through with a professional. You will be going through all the emotions of grief and it takes time to deal with it all properly.

The internet is also a good source of information and support, but equally don’t get carried away. There is sometimes too much information, especially at this early stage, and some very extreme opinions. I did find it reassuring to find out I wasn’t the only person this had happened to.

Unfortunately, when you are extra sensitive you will see pregnant people everywhere. And it’s ok to be a bit jealous of them too – it’s all natural. You just need to concentrate on yourself at the moment. Take your time…you will feel better, honest. I am proof of this (and there were days when I never thought I would)

Sending you a big hug…

Bettymum Wed 07-Oct-09 16:47:57

First of all a big hug to you as I think you need it.
I have a genetic condition that gives me a 1 in 10 chance of Downs, and a higher risk for other chromosomal abnormalities. I have one DD, who has no chromosomal abnormalities. I had a miscarriage back in June, and I'm now 14 weeks pg with DC2. I have an amnio booked for a couple of weeks' time; my nuchal was 2.8cm which is on the high side, but within "normal" range. The heart and bloodflow looked fine.
I give you all this background because I like you am having lots of tests. Now, what I really wanted to say was that if your CVS came back clear, what exactly is wrong with your baby? My consultant told me that 1 in 20 babies have a nigh nuchal result but most of these are actually fine in the end. I cannot, cannot imagine how I would feel if I terminated a healthy baby. If I was you, and I can't begin to imagine how awful and fragile you are feeling, I would try and get a private appointment at the Fetal Medical Centre in London and get a proper scan, they can look in great detail at the heart and blood flow and so on. Again, if I was you I would want more answers - I'm not trying to tell you what to do because you don't need a random stranger telling you what to do, I'm just making a suggestion that may help you to get more information and make a more informed decision. Sorry if you've already had more scans on the heart and so on and you know exactly what's going on.
I'm really really sorry for what you're going through and sending you lots of love and hugs.

Bettymum Wed 07-Oct-09 16:50:48

Just reread my post and it comes across as a bit bossy, even though I wrote it and rewrote it. It's really hard sometimes to get things across, I wish you all the best whatever the outcome x

Bluebutterfly Wed 07-Oct-09 16:51:05

I am so sorry to hear about the problems you have encountered with your pregnancy.
In my opinion your response to this situation is completely understandable, because what you are going through is a traumatic emotional experience and it is not something that can be easily rationalised.

I think that the other advice on here is very good and I do not really have anything to add other than to say how sorry I am for you and your partner.

boodleboot Wed 07-Oct-09 16:53:29

really really sorry to hear this news of yours. When will you know for sure what the likely problems are? sad


timmette Wed 07-Oct-09 17:00:18

Sorry you are going through all this and would second the recommendation for the Fetal Medicine Centre.
Also have you tried a university teaching hospital in Belgium - I thought they were not Catholic foundations. Also I don't know if you want to see another gynae in Belgium mine is excellent and has worked in the UK - if it's of any help.

MadameDefarge Wed 07-Oct-09 17:13:43

There is an ongoing thread here for support of those who have decided to terminate a pregnancy...I'm sure you would get loads of support there.

So sorry.

Tomatefarcie Wed 07-Oct-09 17:39:48

Just wanted to say that my friend's nuchal results were not good either. The fold was in the similar range as yours. She had a CVs done, the results came back clear, but the nuchal fold had increased even more by then!

She had more tests done, is now 24 weeks pg, and the baby seems perfectly fine. Her consultant jsut can't explain the thick nuchal fold.

Bettymum Thu 08-Oct-09 11:01:34

rushingrachel how are you doing today?

stickybean Thu 08-Oct-09 13:05:20

I'm so sorry to hear your news and can't imagine how difficult this time must be for you. Also just want to recommend the fetal medicine centre in Harley st if you decide to have any further investigations. They are extremely through.
Whatever you decide to do i wish you all the best of luck.

elasticwaistfan Thu 08-Oct-09 17:04:25

Rushing rachel
I can't really offer you any advice but i'm going through a very similar thing and can share my experiences with you.
At my 12 week scan the NT was measured at 5.1mm which was a complete shock. When they tried to put me in a private room with a sofa and cushions i knew something was wrong. They discussed the associated probs with a high NT and used a table to show me that there was a 55% risk of there being a prob with the baby. 35% was chromosome related eg Downs and the other 20% was heart or genetically linked.
I had a chorioric villius test that day and got a negative result back that day. The midwife was all cheery saying how fantastic it was but it didn't really seem to make a difference to how i felt because the remaining 20% risk still feels high. At 16 weeks i had a scan to look at the structure of the heart and from what they can see it looks ok so far. The NT remained the same but my understanding was that that normally goes down? I have my 20 week scan next Weds and then they'll be able to have a proper look at the heart.
Obviously i'll be able to make a better informed decision on Weds.
My husband has a 41/2 y/o daughter who i've been guardian for since she was 18m and she has a genetic condition called Cornelia de Lange Syndrome. (Interestingly every test her mum had while pregnant was completely normal) She is absoutely amazing. She finds talking a challenge but has speech therapy, is as independant (and head strong) as any other little girl and is starting to learn to read at school. Without her i may have thought very differently about my options and i know that genetic conditions vary wildly but as with our little girl-you don't know any different to what you have.
I'm not ignoring the risks but i'm very positive about the future, i think that sometimes a bit of knowledge through very sophisticated technology can be a dangerous thing. A few years ago this wouldn't have been picked up and if you think about how many women don't have the test at all.
I hope i can look back at this with a healthy baby and think "what a load of crap that NT thingy was" x

VanillaIce Thu 08-Oct-09 18:55:04

Good luck to you Elasticwaistfan, you are so right. A small amount of knowledge can be a very dangerous thing. I didn't have the nuchal test for precisely this reason. I think this thread is so upsetting.

RushingRachel please take your time and find someone to talk to about this.

sleepwhenidie Thu 08-Oct-09 19:07:08

RushingRachel, if is possible, definitely take Bettymum's advice and go to the Fetal Medicine Centre here - go on a Wednesday, when Prof Nicolaides is there. It is his clinic and he is the best possible person to see, particularly as he devised the nuchal test! Take all your results and explain the situation, I am sure that even if the news is not good, you will have a much clearer understanding of your situation and risk than now. Good luck.

Comma2 Fri 09-Oct-09 01:46:57

Oh Rachel, how entirely terrible! A very big hug and all the virtual support I can give. I hope time will help.
I don't understand what the consequences of a thick fold are when the genes are good, but your doctors will have told you. If you can, I would also get one more qualified opinion, but I am also sure you have thought every nook and cranny of this and all other options over.
Let me hold your virtual hand for a bit....I really couldn't cope with this either.

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