Petrified. Just got 1 in 38 chance of Downs from Nuchal scan blood results. Advice please.

[HeyThereSantasGirl]

I'm 38 years old and am 12+4 pg with much much wanted DC3.

I've just been called by Babybond with results for my scan and blood test for my nuchal scan. For my age I have a 1 in 112 risk of Downs, my hormone levels give me a 1 in 240 chance, but the adjusted score for me personally is 1 in 38. This is high risk.

I've just come back from seeing my GP who was lovely, but said that she thought it was a serious enough result to warraant a CVS.

I am PETRIFIED. I don't know what to do. I think I'll probably hve the CVS done. Although I know this carries a risk of MC. Although I don't know what I'll do if the CVS comes back positive for Downs. I have 2 other DD's (7 and 3) and a lovely DH who is incredibly supportive.

I've had 2 m/c before this pg, so it's incredibly hard to get these results.

DH and I are seeing private OB/GYN on Saturday to get some further information.

I'm just a soggy weepy mess at the moment.

Any advice would be very gratefully appreciated.

Thanks.

[jeanjeannie]

Santasgirl - so pleased you got your appointments all sorted. Sounds odd but you'll feel calmer just by knowing you're doing someting! The man himself is a very nice chap and the whole procedure is such a non-event. I truely didn't even have as much as a twinge afterwards - just thought I'd let you know in case you have the CVS! x

[HeyThereSantasGirl]

Hi Guys. Thanks for all the kind wishes and lurking! I am indeed feeling a lot calmer. It's just knowing that I've done something positive and that we'll get some answers soon. I really hope that this is a horrible nightmare episode that will come to an end soon.

All of the information that I've been given by you lovely ladies (and the stuff I've found on the internet) has been so helpful.It has really empowered me. I can pass this on to other women who might be in my situation. MN is a powerful tool for women. Thank god it exists.

A friend was saying that I've probably ended up knowing more than my GP now!

Anyway, if you're interested, I'll post on Tues or Wed. Just continue to keep everything crossed for me. We're not out of the woods yet, but we can see a glimmer of light at the edge of the trees. xxxxxx

[mogwai]

glad you feel better.

When I got my NT results I felt dreadful, couldn't think straight, felt disempowered, confused, in the hands of the gods. I had constant visions of us having a DS child I felt I'd never be able to cope with.

Two days later I decided on the amnio and after that I relaxed a bit because I knew when we'd have an end to the speculation and I wouldn't spend the rest of the pregnancy wondering.

I think you're doing the right thing you know, and hopefully the result will be favourable and you'll be back here with some good news to share.

Have everything crossed for you!

[SantaKLAWs]

A bit late to this but wanted to share my story.

I was 36 when I had an amnio shortly before Christmas. My bloods came back with a risk of 1 in 13 after adjustments. I had the amnio, although I have no idea what I would do if there was a decision needed to be made about termination.....

Anyway, the wait for the initial FISH results was the most most difficult 2 days of my life. Spent sobbing on the sofa, barely daring to move in case of mc.

Fortunately the results were good and I now have a healthy, happy, bouncy 3yr old.

With hindsight I now would be more proactive about when the testing is done as the bloods were taken according to the dating scan which brought me forward by 9 days. I wonder how much the risk would have been if the bloods had been taken according to MY LMP, as the timing of bloods does play a factor in what the results will be, iyswim.

Best of luck with your tests. It's not an easy time for you

[HeyThereGeorgieGirl]

Hi SantaKLAWS. It's funny you should mention NT scans and LMP's becasue I'm really wondering whether they did mine too early. BY LMP I would have been 10+3, but an early scan at 6+3 week put me at 7+3, so therefore NT scan one week ahead of LMP dates. I don't know if I'm clutching at straws. But it's all I've got at the moment.

At least I only have one more day to go before heading off to Fetal Med Cen to get detailed scan and bloods taken. Then the CVS on Wed. Am crapping my pants, but it's something that needs to be done.

Most worring thing is how I'm going to cope with DD2's 3rd birthday party on Saturday. Have nine 3 yeas olds scheduled to come over for fun and frolicks. Hmmmm, think we'll play by ear!

[ephrinedaily]

Hi Santasgirl - only just seen this thread. Hope you are feeling ok. Just to let you know you're not the only one - was told on Christmas Eve my baby has NT 3.5mm giving us a 'score' of 1:27, after bloods 1:140. Am 28.

Have decided not to go for CVS but have detailed heart scan this week. I know how scared you must be feeling. Am trying to reassure myself that the chances are still high that baby doesn't have DS, and even if she/he does, hoping that there's nothing wrong with the heart. Hope things go well at FMC - we were considering going there as well but got referred to Guys anyway, Good lucj,

[ladyhelen2]

Hi Santasgirl, have also just seen this thread and can totally understand all you are going through.

In October at my nuchal, I was given odds of 1 in 28 for downs. DH and I had not really given the nuchal much thought ( I have a history of miscarriage and so was just pleased to get to 12 weeks) and when we got the odds, the shock was numbing. The hospital we went to were great however. They didn't tell us to do anything, just gave us options and after a few hours, I decided that I had to know one way or the other and opted for CVS. Another scan would just have given more odds and I had to know.

It does carry a risk of mc but it depends on the skill of your doctor and my history had no impact on the level of risk.

The procedure itself was quick and painless. It felt strange - a pulling sensation that was all. And we had results within 24 hours. All was well. So we went from shock to just relief within 5 days. I was on bed rest for about 36 hours afterwards as it felt like I'd been kicked in the stomach bit that was all. The worst was definately the wait for results.

DH and I never had the conversation about what we would do had the baby been downs. We figured there was no need to torture ourselves as it may be unnecessary and I still do not know what we would have done had it been a different result.

I wish you all the best with your tests and by Saturday, hopefully all this will be behind you.

Take care of yourself.

[Nekabu]

Good luck for tomorrow, HeyThereSantasGirl!

[BalloonSlayer]

Any news Santas/Georgie girl?

Have been thinking of you.

[HeyThereGeorgieGirl]

Wow. There's so many stories of this happening. I had no idea how common it was. It's a bit like miscarriage isn't it. You just don't know how many women have been thru it til you've benn there yourself.

I just hope with every fibre in my body that I get the same result as everyone on here.

LadyHelen Thanks for the info. My mum is one red alert. She's up tomorrow to look after the DD's and knows that I might be on bed rest as of Wed night. Funnily enough, not scared of the procedure. Don't mind needles. It's the damn results that petrify me!

Will try and get on here tomorrow or Wed after we've had scan and CVS.

Thanks once again for all the kind thoughts. And best of luck to Ephrinelady for your scan this week.

[n5rje]

Just to add my story - I was 42 and pg with no 4, due to the risk if mc I didn't go to the doctors until I was about 10 weeks and by the time I got my first scan at the hospital it turned out that the baby was too long for an accurate nuchal fold result ( I had no idea there was a length limit) so I had full blood tests which came back with a 1 in 9 risk of DS. Consultant couldn't have been nicer and passed me to a colleague who explained all about risks of amnino/CVS which due to the fact that I was about 15 weeks by then was actually v low for mc (can't remember exactly the figure). I had an amnio which was suprisingly painless and only had to wait a few days for the results which thankfully were clear. DS4 is now a v healthy 10 mo. I do hope all goes well for you this week.

[mogwai]

I just got my amnio result today and found our baby does not have DS or Edwards or Patau syndrome. I'm so relieved we had the test.

[Klaw]

GeorgieGirl (SantaKLAWs without Crimbo outfit on) as you have a birthday party to deal with on Sat I'd be asking all other parents to do what they can to help - bring food, stay to supervise, organise the games, etc, in light of the fact that you will have had CVS on Wed. I'm sure that once explained most mums will be only too happy to help so that you can have a stress free day for dd2.

[HeyThereGeorgieGirl]

Mogwai Woooooooohoooooooo. Great news. Thanks for letting me know. Am sooooooo pleased for you. Now, if you'd be so kind as to pass some of that good luck in my direction, that would be great!

Klaw Seems as if we've all lost of festive fancy dress! I've got my ma and pa drafted in to help. Plus DH will be there and all the mums will stay as some children only 2. Will play by ear and if I don't feel up to it will postpone for next weekend.

n5rje Thanks for sharing your story. I want my outcome to be the same as yours please.

[mogwai]

Georgie Girl I have everything crossed. What a horrible four weeks we've had. But when you get the all clear it feels like winning the lottery

[Cazzywazzy]

What hell they put us through! I had 1/17 chance given to me and had 3weeks of hell - just over - what does the strees a sheer terror do for mother & baby. Had decided to stay with pregnancy whatever the results and definatley would NOT have the NF test again which was offered with no councelling and sold as 'a brilliant thing'. Sooooooo glad things are good for you now though I think you could do with a hand for the party xxx

[Zoebo]

Hello all, just registered on this site and wanted to say how suportive you all are to each other I think that is great. I have a CVS tomorrow really nervous Nuchal fold is very large at 7.6mm, bloods fairly normal. So worried has anyone heard of Nuchal fold this large. Im 29 this month. I wish all of you going through this nightmare all the best.
x

[deleting]

yes zoebo, ours is massive at 8.7mm, bloods normal. been to see prof niklaides, got a 90% chance of something wrong. had cvs, all okay, still ...

[herbaceous]

Can I tell my story too?

I had the nuchal fold and bloods done three weeks ago, and even though the measurement wasn't too bad - 2.6mm - they gave me a 1:16 risk of downs. Must have been my age However, the blood results were good, which brought it down to 1:99.

However, once we'd seen him on the screen, there was no way we could have had a termination, so we decided not to do the CVS or amnio, as we would not act on it. And as the risk of miscarriage was the same as the downs risk, it wasn't worth it. Particularly as I've had four miscarriages in the past three years. And as I'm 43, so this is likely to be my only child.

And then when we thought about it some more, it's all presented like woot woot woot risk risk risk as if it's a 1:99 chance of the baby dying, or having two heads, or of killing you as its born, but it's only a 1:99 risk of not being entirely perfect. It's not the end of the world, and he'd be loved whatever happened. And they only screen for those few chromosone problems, not any of the other things that can go wrong, before birth or after. It's all part of the deal. At least, that's my justification! Naturally I'm terrified of the 20-week scan, in case they find out there is something wrong...

[Nekabu]

I know what you mean, herbaceous! I've had nothing but "Of course at your age you do have a high risk of DS and so you need to have the test." Every single person I have seen has gone on and on about it. I did know I had an increased risk because of my age but even if I didn't, I don't think I need to hear it again and again and again and again. My midwife went on so much that I ended up saying "Yes, but it's not actually guaranteed is it." and she finally stopped going on about it. I did have my NT yesterday (1.1) and am waiting for the blood results.

[HeyThereGeorgieGirl]

I think you are so right Cazzywazzy. We are put through sheet torture when we get these test results. We have a 97% chance that everytihng is ok, but our first reaction was, sh&t, 1 in 38.

Zoebo Best of luck with the CVS tomorrow. I have mine too. Where's yours? Not scared of the procedure. Just scared of the results.

Herbaceous You are one strong lady. And what you say makes a lot of sense. Am hoping that everything is ok with your 20 week scan.

Deleting Wow, that's a large nuchal. Makes me think they are panicing over mine, which is 2.4mm. Really glad that your cvs came back clear. You must have felt like you'd won the lottery when you got yuor cvs results back.

Nekabu My fingers are crossed for your results. Nuchal fold measurement looks good though. That's a step in the right direction. Let me know how it pans out.

I've just come back from the hospital where I had my booking in meeting with the midwife. Made the decision to go as I wanted to see it as a positive portent of what will be a good pregnancy. Roll on 3.30pm and the scan. xx

[herbaceous]

Hey there Georgie/Santa

I'm not really brave - I spent a good few sleepless nights after I got the results, and was tempted to have an amnio, just to know one way or the other. But once me and DP had agreed that we loved Cromwell (absurd name for bean) anyway, it seems easier. And my mind seems to have a limit for worry - I'll get into a total lather about something, then a switch flips in my brain when I can't take it any more...

[HeyThereGeorgieGirl]

Herbaceous I seem to be doing the exact same thing today! It's like a blissful total melt down! Am adopting the fingers in ears, lalala, I can't hear you approach! So far so good. Although I can feel anxiety levels rising the near it gets to 3.30pm. Deep breath in, deep breath out, in, out......

[HeyThereGeorgieGirl]

Dear All. Just got back from the Fetal Medicine Centre and very pleased to say that after a detailed scan, there are no soft markers for Downs and our risk has been adjusted to 1 in 786. (I can now allow myself a celebratory smiley face) .

We're taking this new figure with open arms and have decided not to tempt fate and go for the CVS. We will instead have a detailed echo cardiogram at the 20 week scan to rule out any cardiac abnormality.

It's been a truely horrendous week. But I am sooooo glad that we've been able to come out the other side.

At the risk of sounding like a snivelling Gywenneth accepting the Oscar. HUGE thanks for all your support, love and information. You have all made this nightmare of a situation more bearable. If you ever need anything from me, come and find me on Emmsys thread on conception.

I hereby pass on the baton of good luck to the next woman that needs it.

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