Nuchal scan with high result

[rosiejoe]

I am new to this website and recently been given an NT scan fluid result of 13mm. The future looks so bleak and i have lost hope has anyone been through this? The idea of testing for the next 6 months is frightening and i don't know if we are strong enough!!

I haven't been through this but I didn't want your post to go unanswered when you are clearly so worried.

Have they told you there is certainly a problem? I hope you have been offered counselling as well as further tests. Whilst it is completely understandable to want the tests, bear in mind that you do not have to have them especially if any outcome would make no difference as to whether you continued with the pg or not.

Only you and your partner can decide whether you are strong enough to have the tests or indeed to cope with whatever eventuality they throw up. Just to mention there are quite a few mums on this site who have children with Down Syndrome (If that is the concern) They are an inspiration and often talk of the joy their children bring them. If you post again in the special needs section, I'm sure they'll be along to advise.

If on the other hand you are convinced that you could not continue after such a diagnosis, then if you post under miscarriage/bereavement that you are considering a termination then many mumsnetters will, again, give you their support and share their stories with you.

Good luck with whatever choices you make.

Thanks for your response. We have been told that the problem is not just Downs syndrome but a variety of problems (chromosome abnormalities)The hospital say that they haven't seen a baby with this high nuchal fluid before. Even if we have an amnio and it is clear we are still facing all kinds of severe conditions. There is only a 10% chance of us having a healthy baby. I suppose i am looking for those in the 10% group! As all i am finding are either stories with a sad outcome.

Hi Rosiejoe

I'm afraid I don't have any direct experience of this or any concrete advice to offer, but I just wanted to send you my thoughts, because you must be so worried. I can't imagine how frightening this must be for you. All I can echo is what has been suggested above, and to wish you the strength to deal with whatever you decide.

Hi RosieJoe,

I too had a fairly high nuchal result a few weeks ago, for a few resons i didn't trust the result and got a second opinon which came back much more positivley.
If you have the oppotunity it might be worth seeking one just to be doubly sure before you have further testing. Your hospital may allow another scan or you can choose to go private if that it financially viable.

Either way, take the time to think about further testing, things may be seem terrible but none of these tests are certain. Thats not to say don't have them at all, just don't rely on the scan result as certainty.

If you look at the link below from an aticle in this weeks mail on sunday, she is one of the 10% you are looking for, things looked extremely bleak for this family and they had a perfectly healthy baby.

www.mailonsunday.co.uk/pages/live/articles/health/womenfamily.html?in_article_id=517827&in_page_id=1 799

Good luck with it all, still early days and i know things are hard but you will get through it.

I'm so sorry you are facing this situation, rosiejoe. I am going through this at the moment as well, although -after the tests- our baby's chances have now got better.

We started with 5mm nuchal fold at 12 weeks and were given 1 in 3 chance for Downs, 1 in 7 for Patau's and 1 in 7 for Edwards syndrome. We decided to do immediate cvs and the results for these most common cromosomal abnormalities came back in 48 hours (they were clear). At 14 weeks we went to a fetal echocardiologist to check the heart, which seemed to be ok. Now our chances for a healthy baby are pretty good (still feel scared to say that, it's been really though).

After being through this, I can only tell you what I would do if I were you; I would have cvs immediately (waiting for weeks to have amnio sounds horrible). Like in my case (Edwards and Patau's are incombatible with life), your very high increase might indicate more serious cromosomal abnormality than Downs and if there's anything worse than having to wait for the results (48 hours, full report takes a couple of weeks, but I was told that if the initial results are ok the rest of the cromosomal results are ok in 99% of the cases), it is the thought of having to worry the whole pregnancy and -if worse comes to worse- losing a child soon after birth. I was told by a doctor at fetal medicine unit that an increased nuchal fold is just like having a fever, and 13mm is a lot. Sorry if I sound blunt, but personally it helped me a lot when doctors told me exactly like it is. My head felt clear, I was more confident going through cvs and heart scan and the support we got from the hospital was fantastic. But whatever you decide it is the best for you and your family, I wish a lot of strenght during this time.

Rosiejoe If you can afford £400 or thereabouts and can come to London you could go and see Prof Nikolaides (?sp) at the foetal medicine centre. He has an excellent reputation. My boss went to see him after a high result with her last pregnancy and he can tell you instantly during the procedure whether there is anything wrong with the baby. Obviously there is always a risk of miscarriage but his rate is lower than the normal rate.

I wish you all the best during what must be a really difficult time.

Have you phoned ARC they offer phone advise about ante natal testing. I ofund them useful.

I second petitfilou here, Nicholaides is brilliant. Very straighttalking though, but an excellent professor. I went to him as well, paid 160 for the nuchal (which he is the best man to look at as he invented the test). He told us our chances immediately, also, he has indeed done thousands of cvs with not a single miscarriage.

I had my second opinon at the Fetal Medicine Centre (not with Prof Nokioladies) and they were amazing.

I can really relate to this as I had a very high nuchal scan result and they told us we had a 1:2 chance of having a baby with a chromosomal abnormality. We also had the CVS - with Professor Nicholides (who is really wonderful)- and our result was clear. We then had a follow up heart scan and that was fine. I then went on to have my dd who just turned 4 years old on Saturday! She is ABSOLUTELY NORMAL and in following up with the hospital afterwards, they were unable to say why our baby had such a high nuchal scan result and the nuchal fold seemed to resolve by the time she was 20+ weeks. We were totally convinced that our baby had something terribly wrong with her but thank goodness we did opt for the CVS because it largely put our fears to rest. We did spend a lot of the pregnancy worried - but I was told that IF the CVS is clear, and IF the heart scan is clear and IF they can detect a nose bone on the scan, then the chances are good that your baby will be normal.
I hope this helps. Good luck.

Thanks for all the advice.We decided to have an amnio and pray the results will be ok. i can't help but feel that all the success cases are when the fluid levels are between 5 and 8mm. I found an old message on this site from one other person with 13mm result and the outcome wasn't good. Anyway I am keeping my chin up as much as possible and just waiting to find out more..

rosiejoe- thinking of you at this difficult time. please come back keep in touch there is a wealth of experience on here and folk are always happy to help x

We have had our first results and they have come back clear.It has been nice to recieve some positive news for once but we are under no illusion that there is so much more to be tested. Will keep you all posted and thanks again for the support. if anyone has been through similar I would love to talk. Happy easter

Hi there
Glad to hear your good news. Thought I would share my story with you. Was told I had a nuchal measurement of 6mm, no nasal bone, and cystic hygromas around the brain and spine. Was told it was def Edwards if I was lucky def Downs Syndrome. Had a cvs 3 days later which came back clear. Had a heart scan at 16 weeks which came back clear. The hygromas dispersed around 24 weeks and was told I had a normal baby at 30 week scan. I was scanned each month which was sometimes reassuring and at other times depressing as sometimes they said nothing new.
I now have a beautiful daughter who is 15 months old and perfect. She was born with a very thick neck (rugby player)and a squidgy nose, it took months for her neck to thin out and even now is a bit chunky.
Good luck to you and I hope all goes well.
Happy Easter
xx

Thanks chocogirls for your support we have had our second set of results and it came back clear. I am relieved but we have been told that we are not out of the woods yet. We now have to check for heart defects. Our scan is on Wednesday so fingers crossed. I can't help but feel that it has to be something else if it isn't a chromosome problem.
Keep you posted.

Had my nuchal scan on Tuesday at the FMC which was 5.5 and a risk of 1:2. Have searched and searched for all these positive stories (had a CVS done yesterday) and am sitting here waiting for the results on Friday. Five years of trying until IVF, I feel that it is so unfair although I know it is only nature. Can't believe that it comes down to flipping a coin. They found a nasal bone but said it was still very soft (hadn't calcified as much as she expected). Not sure what this really means as on the results they put nasal bone found

I had a 1 in 2 chance of downs and a high nuchal fold too. I went to Prof Nikolaidies (sp?) and he was fab. I'm also in my 40s and was told not to get my hopes up - but i'm now 31 weeks and all looks fine. Fingers crossed for you - it's a horrendous time and I feel for you. x

Hi Sugr - how many weeks are you now? I had a high risk NT scan result a few weeks back and to calm myself did lots of research on the web and found some very positive stories - try babycentre.co.uk (dare I say that?) and search under high nuchal scan result. Good luck everything crossed for you x

Just got back my results and everything is OK! Can't quite believe it and am still in tears but at least I can hope now for the future

Great news, sugr!! I had the same risk as yours so I know about flipping the coin.. results were ok. Out of curiosity, did you ask the sex of your baby? I've been reading these stories for months now (since my cvs) and have a feeling that healthy girls get caught more often than boys with high nuchal transluency.

great news Sugr hope you can relax and enjoy the rest of your pregnancy now :-)

Thanks for the positive messages, it was really helpful. It is a girl (surprised me as I was convinced it was a boy) so maybe there is some truth in that

Hi sugr,
We have finally got to 22 weeks and so far there are no abnormalities and no problems with the heart.There is still an increased amount of fluid and we will have to keep having scans. But I feel that 10 weeks on we are so lucky so far that hopefully we will be ok. we didn't find out what the sex is so i will have to keep you posted on that one. Keep as positive as you can and try and enjoy your pregnancy now:-)

What was the outcome of your pregnancy please if you wouldn't mind sharing? My baby's nt was 13.4mm so looking for any positive storys

@Samjbrown hope you are doing okay. Did you end up getting a lot of tests done. Just did cvs yesterday after a result of 8mm.