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Original poster

1:5 risk of Down's given...hand holding and advice/experience needed,please

101 replies

AngryBeaver · 21/06/2012 09:00

I had a thread the other day after I had a call from the midwife saying she was concerned about a few things on the scan. Nuchal fold at 3.4mm and no nasal bone present. I had bloods done and just got the results. 1:5 chance. I am in shock. I had convinced myself after reading loads of positive similar stories,that it would be ok.
The mdwf is sorting an amnio out tomorrow morning (I am not in UK,it is night time here) I have to travel 3 hours to have the amnio done.
I just feel this is not going to end well.

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Original poster
AngryBeaver · 22/06/2012 23:30

thanks for the info daluze thats really helpful.
I had to wiki it ghislaine and prettyflyforawifi,(I've only been here 6 months so my Maori is poor!)but thanks,I'll try...
Kia pai tō rā Smile xx

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Original poster
AngryBeaver · 22/06/2012 23:30

Oh don't know where the numbers came from!

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drcrab · 22/06/2012 23:44

We have a friend who was given 1:3 chance of downs. The girl is now 5? And v normal!! Odds are just odds. I know easier said than done. Good luck whatever you decide.

Original poster
AngryBeaver · 25/06/2012 07:45

I have the cvs tomorrow.The mdwf just rang to tell me the hospital had rung her to make sure she had told me that I was "very high risk and the results were unlikley to be good" Sad

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Theas18 · 25/06/2012 07:54

Just to hold your hand and remind you a 1:5 chance means that 4:5 babies born with exactly your combination of results would be normal .

PrettyFlyForAWifi · 25/06/2012 08:43

Good luck AB, I will be thinking of you. I think the hospital would routinely say that kind of thing to make sure you understand the odds and know what you're possibly facing. Sometimes people block it out.

The amnio procedure itself is not too bad, you can ask them to turn the screen off if you don't want to see too much, also try and get lots and lots of rest afterwards and distract yourself if you can while you wait - I watched box sets back to back and did crosswords and randomly reorganised my wardrobe (no idea why).

I am hesitating whether to say this, as I do not want to sound pessimistic and as others have said, there's a 4:5 chance that your baby will be just fine but with the benefit of hindsight/experience I would also say to get as many photos as you can, as these small momentos come to mean so much should the news not be good. I hope that's not insensitive; I am of course praying that your little one is going to be okay. Your NT is not great but it's certainly not the worst, and the soft markers are notoriously unreliable. As the doctors said to me so many times 'without hope we have nothing'. So I am hoping for you. Love x x

Original poster
AngryBeaver · 25/06/2012 10:17

Thanks,I just feel that it won't be good news. I am praying to God,to my Grandparents to anyone who will listen,to please let my baby be ok...I just don't think anyone is listening

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PosieParker · 25/06/2012 10:19

I had a 1:9 mainly due to nuchal, as I was under thirty and a healthy weight. But had my CVS and my little boy is 9yrs and perfectly healthy with no abnormalities.

Original poster
AngryBeaver · 26/06/2012 05:42

They coudn't get to the placenta,my bowel was in the way,so no cvs.Have to go back next tue for an amnio.
After the scan the consultant spoke to me and told me that the baby was small,and had a collection of fluid on the spine. Which sometimes indicates the baby is "sick",she also saidthere may not be a heartbeat next week when they scan before the amnio.Has anyone had a similar experience? Am about to google...cluching for straws Sad

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CheerfulYank · 26/06/2012 05:47

Oh AB. I have no experience with this (other than my little cousin with DS, who was a total surprise...my aunt had five "normal" children already and she didn't want the tests) but I am so sorry you're going through this. :(

I don't know what to say, but I'm here.

Original poster
AngryBeaver · 26/06/2012 08:21

Can't find anything relating to fluid on spine...getting pissed off now.I asked her if she thought it was spina bifida,but she said no...need some clues

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WipsGlitter · 26/06/2012 08:39

Angrybeaver I know it's hard but try not to google. There is so much information out there some academic some anecdotal that it's hard to separate out what relates to you and your unique situation. I know you need/want to know but unless you are a medical professional trying to piece together a diagnosis from the internet won't help.

Is this your first baby?

Original poster
AngryBeaver · 26/06/2012 08:59

I just need to know what fluid on the spine might indicate.And might it have dispersed by the next scan...Basically,I know it looks bad,but is there any hope?
No, this is my 5th pregnancy but the last pregnancy was a mmc...we found out at 14 weeks (my 12 weeks scan was late). I was absoloutely devastated. Almost derailed me emotionally and I just can't belive it's happening again.

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WipsGlitter · 26/06/2012 11:21

I'm so sorry. Have you tried the charity ARC? It's so hard, downs syndrome is one thing, but if it's something totally different then you might have different decisions to make.

PrettyFlyForAWifi · 26/06/2012 11:55

I think the problem is that there are several different reasons for fluid on the spine and therefore several different outcomes. I would email ARC and see I they can offer you any advice because they see a multitude of anomalies and they may well have seen this before. Could you also ring the hospital back and ask for some more information? It's very hard to have to wait a week for more answers so I think that'd be a reasonable request.

The thought of another loss is unbearable, I know, and I'm so sorry that you're having to even consider this. xx

AdiVic · 26/06/2012 15:58

I went through this with my 2nd, I had 1 in 2 chance and it did not end well, I chose to end it. I was also warned at CVS there may not be a heartbeat the following week at a scan, but there was. He was big and strong, but had chromosomal disorders. I was so hoping mother nature would intervene. It's a horrible time, the worst:( Hang in there, and if you have ANY questions, get on the phone! You deserve to be given all the info, write a list a of questions and make sure you get all the answers you need. Does your hospital have a co-ordinator, or midwife who deals with this kind of thing? Fingers crossed and big hug. ax (p.s. there are happy endings, either at this stage, or in the future)

Original poster
AngryBeaver · 27/06/2012 08:23

Ok,thanks everyone.I looked at ARC.
I rang the senior mdwf this morning.She rang me back this pm and said she had reviewed my scan and the fluid didn't look abnormal,although there was a slight odema around the neck. She also said although the baby was on the 25 centile it wasn't freakishly small (as dr had led us to believe)
She said the odds hadn't worsened.
I (through tears) asked if there was any hope.She replied "yes,ther's definitely hope hun!"
So now,I'm, angry with the dr. We came away feelinglike we had ahad a load more bad news...and the mdwf today tells us not so?
How can they fuck with our emotions this much?Dh cried in the car on the way home.I've not seen him cry since he was 19.

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PrettyFlyForAWifi · 27/06/2012 09:35

Oh my goodness, I can't even imagine the rollercoaster of emotions you're on right now - I would be livid too, it's not fair to keep telling you different things while you have this with for the amnio. Really glad that you got to speak to the midwife. In my experience professionals only offer you hope if there is actual hope, I've found my consultants very unwilling to look on the positive side of things, I think because they don't want to get your expectations up. So the fact that she said that is encouraging. Thinking of you x

Original poster
AngryBeaver · 27/06/2012 09:49

Unbelievable. But I still don't dare to hope. I think there is something wrong,no nasal bone and the odema...plus I usually have big babies. It desn't sit right.
I think she was telling me there is hope because of the odds. i pray that I will get the all clear next week...but all these things not right?I just can't feel it in my heart

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PrettyFlyForAWifi · 27/06/2012 11:01

Yeah I know that feeling. I've had it twice, where I just couldn't relax into the pregnancy and constantly expected something to be wrong, couldn't shake the worry. Once was with my very normal and healthy dd, and once was with my dd who died at 23 weeks gestation (from congenital heart disease). So I don't know about gut instinct...I think that miscarriages leave us the legacy of fear and mistrust of our bodies and that plays itself out on our subsequent pregnancies.

Thing is, you're just not going to know until after next week and if your feeling is that you'd rather not hope in case you get too optimistic then that's fine. Hope you've got lots of distraction on the go (like 4 kids isn't enough!) and try and make some time for you and dh...you need to stay close over this, these things can pull you away from each other. x

AKMD · 27/06/2012 20:29

How awful to have to wait another week, I really feel for you. Are you and your DH at work? Have you considered asking for compassionate leave if so?

Original poster
AngryBeaver · 27/06/2012 20:46

So sorry to hear that prettyfly. Life can be extremely cruel,as I am learning.
Thank you for all your support and guidance,it realy is much appreciated.

akmd dh works,his boss told him to take monday off,and then he had tue off to take me for the cvs. He has next tue and wed off,to take me for amnio on tue and then look after me on wed.
This waiting really is excruciating.I feel on a constant level of heightened anxiety and like I can't take a full breath.

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WipsGlitter · 27/06/2012 22:58

Have you been able to think beyond the amino? Have you and your DH talked about what you want to do if it's not good news? Just I think there can be pressure to make decisions very quickly.

Original poster
AngryBeaver · 28/06/2012 00:36

Yes,if it's bad news we will have to end the (much wanted) pregnancy. It kills me to say that.I never thought I would be the tpye. We have always refused NT tests in the past as we have agreed It Wouldn't Matter.
This test was done in error...and now we have changed our minds. I think it would be the right thing to do for the rest of the children.
I do worry about my mental/emotional state if I am forced into that position,though. Sad

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CheerfulYank · 28/06/2012 03:36

Do you want to talk more about why you feel that way?