just got a call bad nuchal results

[Trickysue]

Hi just received a call to discuss nuchal results which I thought was ominous as was expecting a letter. Been told that despite fold results being ok at 2.2mm when combined with bloods I am at high risk with 1:50 chance of downs.
They have immediately booked me in for an amnio at 17 weeks but I can opt out on the day if I want- results will take another 2 weeks on top or I can pay to have them earlier.
Its so hard because by that stage you are so visably pregnant and will feel baby, making any decisions so much harder.
I have worked with Downs children and adults and know how rewarding and what great lives they can have but I also have a 2 yr old daughter who it will affect as well.
Has anyone else had odds like myself or can offer any advice ???

Hi trickysue. We got our results last weds and DH was devastated (1/30 chance of Downs). I was at work at the time and had to be the strong reassuring one but broke down on my drive to the hospital.
I have a 3 YO son who is excited about having a sibling.

We are going in for a CVS this afternoon. How many weeks are you? Amnio results take longer than CVS but the risk of MC is slightly smaller, but again this seems to be dependent on who is performing it. I am more concerned about Edwards and Pataus than Downs, which is why I am having the CVS.

Nobody can tell you what decision to make but there are many options available. You can choose not to have invasive test, have one done privately, get a second opinion on scan and bloods, wait for the amnio...
I think my DS will cope if we have a downs child. Children are easily adaptable and he is a very much spoiled loved by my parents and so will not lack attention.
Sorry I couldn't be of much help and good luck with your decision.

I had odds of 1:15 after my nuchal scan. NF was 2.6mm, but my blood test results were pretty awful. Age 35.

I had a CVS done (I got the nuchal results at 12+4 and had the CVS the following day). Is this an option for you rather than waiting for the amnio? I was showing very early with my second baby and couldn't bear people knowing I was pregnant in such uncertain times, and I ended up being signed off work by my GP for over 3 weeks while I had the CVS, waited for the initial results (2-3 days) and waited for the full results (another 2 weeks). Mostly so I could avoid the world.

We too had to consider our 2-year-old DS, and for us we needed to know what was wrong and gather as much information as we could to make a decision that was right for our DS too. Luckily we didn't get to that point as the CVS gave the all clear.

As for getting the fast results, I got those 'free' as my risk was so high (think what you get varies across the country, as usual!). However, I would have paid for them if necessary, it's such a hard time and the hardest bit is the wait for the results. I still had to wait 2 weeks for the full results after that but the chances of a problem occuring in those results are very very rare so that was easier to cope with.

I'm sorry you're going through this, it's such a horrible thing to experience. I found a better way to look at it was to look at the odds in % terms - so 1:50 means your baby is 98% likely to be ok. I did a lot of googling when I got my results (not that I'm advocating this!) and found that the rate of false positives was very high, which made me feel a little better. You could also talk to Antenatal Results and Choices (ARC) or email them, I found them to be very helpful and reassuring.

Claire x

Hi ladies - god its so good to hear from people who have been/going through this.
I will be thinking of you summerpixie with your CVS this afternoon - hope it all goes ok and the wait for the results isnt too unbearable.

I spoke to the hospital again to see about a CVS but they have said with my history of miscarriages and timeline an amnio will be the only option so its another few weeks to wait, I dont think I will be able to hide my pregnancy from work colleagues much longer - you definately show quicker with the second pregnancy.

Hubbie is being very supportive but I can see he is scared - I am a strong believer in everything happens for a reason - you just know what it is at the time - but boy does this test the old emotions !

Definately think we will pay for the results to come within 48hrs versus 2 extra weeks. Just gutted we cant do anything sooner as I so want to just hide under the duvet and hope it will all be better in the morning, at least I have a 2 yr old munchkin to keep me busy. Bless her she just keeps pointing at my belly and saying baby - I just hope that its a healthy one and I know people go through far worse situations than this and I am already so lucky to have one child. Still pants though !!

I do keep thinking if I was at a racecourse I wouldn't bet on a horse with odds of 1:50 so am trying to be positive.

It is so so good to hear from you both and lets hope all 3 of us have the results back that we want. xxxx

Well, I had a 1:3 which was pretty devestating. Mostly I think stemming from a nuchal of 4.6mm but bloods were not great (PAPP-A 0.6, HCG 3.0)

Already had a DC aged 2. Was booked in for a cvs 6 days later but changed my mind in the meantime because I knew I would carry on regardless (there were no other soft markers either).

Ended up having an amnio at 16 weeks because DH really wanted to know, but it wouldn't have changed anything and I would still have carried on.

As it was fast results back on the Friday (I had it on the Wednesday) all clear for Downs, Edwards, Patau, full results I think were two weeks - again all clear. No-one mentioned paying for the fast results - but I would have given the choice.

I did not appreciate at the time that this doesn't mean all is fine and there might still be a problem, but no way of telling what until birth and still waiting that one out....

Don't know what advice I can give you other than to say 1 in 50 is not so bad - 98% chance all is fine. I was pressured into the amnio really - if it was just down to me I would not have had it. I don't want to put you off if you decide it is the best thing for you, but I found it very stressful, but not painful. If you wouldn't terminate, is there anything to be gained from knowing?

I remember getting the call and expecting a letter. Totally knocks you for six. As soon as I saw the number on my phone my heart sank and I spent most of the rest of the day crying and or in shock.

My odds were 1 in 60 for Down Syndrome - like you, all in the bloodwork. I got an appointment at the Fetal Medicine Centre in London for a more detailed NT scan. Although it came back clear and my bloodwork actually didn't seem as bad, they gave me 1 in 34 and recommended CVS.

I couldn't face the risk of miscarriage and so we declined invasive testing. That was 20 weeks ago.

The third option that isn't always offered is what I had today at almost 32 weeks. A late amnio, where the risk is preterm labour rather than miscarriage. For me it is a good compromise between knowing before birth and having time to prepare and not really risking the baby - although of course if there is any consideration of termination it's not a good solution.

It's been a long, hard wait getting to this point and I will not pretend it has been easy. But we really needed to know in advance. My current mental health is a testament to that - the obsessing has done me no good at all.

Good luck making your choices!

Thanks ladies I have had the tears and I am sure there will be more to come nearer the amnio time but I am also absorbing all of your stories and its so good to know that I am not the only one.

I am feeling a bit more positive and am trying to concentrate on the the 98% chance that it will be ok rather than the 2% (easier said than done but I realise people have had a higher risk than me) - its just the wait thats hard and realising that I will probably be feeling the baby move by then.

Sparklies - I hope you don't mind me asking but how was the amnio procedure?

I will be thinking of you all in the wait for results xx

It's always hard to try and convince yourself you can't be "the one". Especially as 1 in 20 women screen positive so you've already been one "the one". But the statistics are just that - statistics. It's our own anxieties and fears that often make the numbers seem that much worse and there are good days and bad days. Trying to see it logically is what we're supposed to do to cope with it (and often men seem to manage it better especially as they don't have the baby growing inside them!) but it doesn't always work like that. We're only human!

The procedure was fine - almost an anticlimax compared to the big deal that is made out of it. It didn't really hurt - some discomfort as the needle went in, but no worse than a blood test, just different. They scanned throughout and I could see the needle on the screen - it did not touch the baby (they choose a pocket of fluid far away from the baby)

Most of the risk went after the needle came out - for me at 32 weeks there is a 1% chance of preterm labour (national figure, the reality is probably a lot less as it was Kings College) and a 1 in 1000 risk of infection. For a pre-viability amnio, the 1% preterm labour risk turns into a miscarriage risk, and obviously infection will probably not end well either if you can't take the baby out safely. There is a HUGE variation in the risk of losing the baby depending on which hospital/clinic you go to.

Good luck with your wait for the amnio.

sorry if brief but just wanted to add my story and support.
i had a 1:10 at 16 wks and the panic and fear were overwhelming at first but a few days later arriving for amnio i was a lot calmer and more convinced that the odds were still in my favour.
the amnio itself was fast and painless. i was terrified at the risk but remember the general risk to the population is far greater than your personal encounter with that highly specialised dr will be. i talked to the dr before amnio and felt very reassured. the dr had never had an amnio at that hospital result in mc in her 5 yrs practice.
after the amnio i took a taxi home and basically stayed in bed for 48hrs, i think 24 was recommended but i wanted to be sure not to increase risk of mc. the all clear result came in 48hrs. it's outrageous you've been asked to pay for faster result. but i would do too if necesary.
ok just wanted to add my similar experience and reassure you a little if possible.
most midwives i've talked to about these blood tests have said they cause more panic than they're worth to an extent. the net is cast so wide and the risk ratios are quite meaningless for the majority of pregnancies
good luck and try not to worry, the horserace analogy or job interview odds are great

Thank you and thank you again for all of your posts - you have helped me so much come to terms so much with everything - like you say its the shock that you are at risk which hits and I guess thats what you hear first and then start to question why , but from hearing from you all it goes to show that its not as rare as I first thought - maybe its just another thing that many people go through but dont necessarily talk about. It was amazing when I had my first miscarriage how many people came out of the woodwork and told me that they too had had one.

I am just trying to keep myself busy and planning activities whilst waiting for the amnio and am pleased that I have heard from real women about their amnio experience and it being quick and not painful as opposed to an NHS booklet.

Thank you once again hope to have good news in a few weeks and hope that everyone here gets the results we all wish for.

Hi Trickysue,

Just wanted to join you in the wait for the amnio - when do you have yours booked in for, i know you said 17weeks, but how far away is that?

I have a slightly different situation to you. my risk factor for downs is 1:5 and that is mainly due to a nuchal measurement of 7.4mm :( also my age (36 now, 37 at my EDD) probably doesn't help!!
My bloods were both a little on the low side (around 0.40MOM each) but i think it's the nuchal fold that is really pushing up the risks.

Like you i'm finding it really difficult not to worry but i'm trying to see the positives too - 80% chance that this baby is going to be ok.....although in my case with a measurement that high they do suggest that even if the amnio comes back ok there is likely to be heart problems.

my amnio is on Monday, and i'm hoping to get the results back in a couple of days. i'm having it at my local hospital with a consultant so praying she is on top form that day!!! then next friday i go to oxford to have a cardioscan, so busy week next week.

will be thinking about you and praying everything turns out ok for you - i've heard lots of really good news stories about risk factors like yours so keep positive and do let us know how you get on xxxx

Hi Mrsbigz,
Good luck for Monday I will be thinking of you and really hope it goes ok - depending on my results I too will be heading to Oxford as well. Please do keep us updated with how you get on - unfortunately I still have a 3 week wait but I am not sure whats easier - lets face it we all dread any medical procedure when we have babies in our tummies - but I have been reassured by the posts on here.
I guess we always think it happens to really old mums but none of us are that old at all and it just goes to show you can never tell who is at risk and who isnt.
Still seems weird to me that when I was born 33 years ago that scans didnt even exist - just a doppler and now we know so much ...maybe a little too much sometimes.
I am here if you need to chat anytime and fingers crossed all goes well for you - sending you lots of positive thoughts and virtual hugs xx

thanks Trickysue!!! i'm supposed to be the one offering you support on your own thread LOL but really appreciate the virtual hugs - can't get enough of them right now!!!
will def keep you posted on next week - and will also let you know what Oxford is like for the cardioscan!! whereabouts do you live - i'm in Northampton so only about an hour-ish drive to get there (and prob another hour to park!!!!)

Hello

I had a NF of 5.8 combined with odds of 1 in 2. The results came back as Downs and we decided to terminate as I to had experience of working with Downs children, and whilst many are ok, many have other associated probs such as heart conditions etc. We could not afford to step into the unknown with reagrd to other associated conditions, as we have a 14 month old, and I have a sister with learning difficulties who I care for, and we have no supportive family.

It is horrible feeling the baby and knowing there may be a problem, and i had a bulge so everyone knew I was P. Then I had to tell everyone I wasn't anymore, and now everyone keeps asking when I'm going to try again!! Quite annoying.

It is the scariest thing waiting for results and my heart goes out to you. I have my fingers crossed for you and hope all is ok - people kept saying that I needed to be kind to myself at the time, and it's true. It is a nasty waiting game, and although the amnio isn't nice, it's not as bad as i thought. Keep us posted - all the best x

Evening ladies - well my plan to keep my pregnancy a secret for a little longer didn't go quite to plan as it seems that nearly everyone now knows I am expecting - sometimes the one person you trust cant keep their mouths shut ! Still I have said that there are complications and the baby isnt growing as well as we had hoped - hopefully this will limit the endless questions and if I need time off or am a little teary they may be a bit more understanding or keep their distance.

Mrsbigz - we live in between Aylesbury and Buckingham so not far away at all, Oxford is great except for the parking which is always a lottery.

Adivic - thank you so much for sharing your story and I am so sorry that it didn't work out but I completely understand your decision and I know should we have to face it ourselves it certainly wont be straightforward - especially when you have other children to consider - thank you for your support though it is really appreciated .....if I hear of another person in our office saying about their plans for a honeymoon pregnancy and a large family I think I will scream as I think we can all appreciate its never that easy , if only. I have had a number of miscarriages so I can fully appreciate the questions on trying again or why we haven't given our daughter a brother or sister - or quality comments like - well your body has been pregnant before so can do it again....you have to do what is right for you when its right for you should it be having a family of 7 or no children at all.

Anyway early night for me as I am knackerooed xx

Well ladies - I have been checking up on everyones progress and have cried at some of your posts and also received such strength. This baby lark really is a roller coaster.

Well we have our amnio tomorrow morning and I am feeling anxious but not hysterical (yet anyway). Just be glad when we get the results good or bad - the waiting has been tough and my tummy is visably pregnant and baby is moving lots (just wished I couldn't feel the movement and its just that extra bit of attachment). Still debating whether to find out the sex with the amnio results - if its good news happy to know if bad news not sure I want to give it identity - not sure if there is a box for that on the form.

Still what will be will be and what I have learnt is that most of it is out of my control.Just wish I could fast forward to the results. Will the final ones really take 2 weeks??

Hi trickysue,

I have cvs tomorow morning at the JR oxford. I have odds of 1:3 as of yesterday's 12+5 week scan.

I only stopped crying a couple of hours ago! So i'm no source of strength to you .... sorry just wanted to send you all my best vibes, and to know that you're not alone tomorrow. (hugs)

You're obvious inner strength is inspirational xxxx

Hi Misty - gl for tomorrow and I will be thinking of you too. I cried for days when we first got our nuchal results so dont think you are alone on the tears front - I think the biggest thing is the shock and all the questions that run through your mind - especially the Why me ???

Sending you huge hugs for tomorrow and please keep us updated how you get on. xxx

trickysue - hi!!! just saw you posted again and wanted to wish you all the best for your amnio tomorrow. it really isn't painful, just a little uncomfortable. i know what you mean about finding out the sex too. not sure if you have read my updates on my situation but i won't go into them on here. just wanted to wish you all the best for tomorrrow and hope you get the results you want xxxx

misty - also good luck for tomorrow x

MrsBigz - how sweet of you to remember me - I have been following you on the other thread (god I sound like a weird stalker lol- I am not honest). I have started typing so many posts to you but everything I wrote sounded silly. I have shed many tears from your updates - firstly tears of sadness for everything you have had to go through but also tears of admiration for your candid posts - you are so strong - even though at times you probably dont feel it. It must be very painful still but in time the tears and pain will be replaced with smiles and laughter ( dont feel guilty when this does happen as Noah is with you at all times and I am sure he is looking forward to seeing his mummy and daddy smiling in time). I love the idea of your tree and it will be so beautiful when it blossoms.

Well ladies - we had the amnio this morning and I was very emotional at the scan and then seemed to pull myself together for the actual procedure. Aside from my husband and I we had 3 staff and all were so lovely and by the end I found myself breathing a huge sigh of relief. Just the waiting for the results now. They also remeasured the baby and said it is slightly small and will book me in for more scans - she had a good look at the brain and heart then reassured me that the baby has a big head - did I need to know that ?? after the birth of my daughter I think they stitched me up for life and I I was hoping for cone slim head for easy exit - tmi.

Trying not to think too much about the results but easier said than done - keep trying to analyse what she was saying but in reality she wasnt really saying anything.

Misty hope your CVS went ok this morning xx

MrsBigz just read your post and I am so sorry for you and so shocked at their mistake. Eve is such a gorgeous name and everything I put above still stands - they say that only the strongest are tested by life and all I can say is you must be Iron Woman as you have had such a tough time but still inspire us all - hope you managed to get some sleep last night and that the sun shines this weekend so your tree can grow. xxx

trickysue, thank you so much for your kind words. i don't feel like i'm iron woman at all, but certainly have found an inner strength i did not know existed. i still have my moments though (plenty of them) when i'm just a sobbing mess.
am hoping you've had the results of your amnio now and that all went well - please forgive me if i've missed an updated post somewhere.
sending you lots of love xxxxxxxx

I've been checking the threads regularly and seeing how everyones doing but hadn't posted our results. Feel so guilty because so many are having tough times, for us the initial amnio results have come back clear - we are so so lucky. Just hope we can give others hope that amnios can have good outcomes. Love to you all xx

Bump x