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Antenatal tests

High risk and going to have amnio- any advice or happy ending stories greatly appreciated as we are petrified :-(

68 replies

littlewifey · 26/07/2011 20:49

I had my combined test done at 11 wk and 5 days. Nuchal was 1.3mm so looked fine and I'm only 28 so should be fairly low risk. However hosp lost my bloods so when I chased again at 14wks they said I had to come in very next day as bloods can only be taken up to 14 wk 2 days. According to MHD scan I was 14wk1 day when thry took second bloods but according to my dates and early scan due to spotting, I was 14wk2days exactly. Am now wondering if this could have effect on result. Anyway, got the call yesterday to say I am 1:150 so high risk. I feel so sick as know it must have been my blood results because other factors were in my favour and 1:150 is very high when for my age odds start off at over 1000. Has anyone else been here and at a similar age to myself? Also has anyone had amnio because considered high risk but result come back that baby is healthy? I have to wait til mon for amnio which means over a week until I'll know for sure :-( feel so scared

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lily06 · 29/07/2011 10:18

Littlewifey can we do a bit of virtual hand holding together during the wait?

I have an amnio booked for Thursday. We have been for CVS twice but the placenta wasn't accessible so have been waiting for three weeks now for amnio, and the days are passing sooooo slowly. My overall risk is 1:20, nuchal at 12 weeks was 1.6, but bloods were 4.34MOM for bHCG and 0.45MOM for PAPP-A, which puts us very high risk on bloods alone.

I really hope everything turns out well for both of us.

littlewifey · 30/07/2011 20:51

Thanks Misty, I'm going to get stuck into the washing and ironing tomorrow as a distraction! My amnio is at 10:30 so at least quite early in the day. I'd have gone mad waiting until afternoon! I'm having amnio because I was too late for cvs because they lost my first bloods :-(
Lily, I'm sorry you are going through this too. The wait is awful isn't it, but can't imagine how you've coped with three weeks. We can def hand hold together x

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misty0 · 31/07/2011 07:43

Sorry, yes you did say amnio

My CVS was by needle into the placenta through the tummy, like amnio (there seems to be 2 different ways - vaginaly and the above. I was expecting the vaginal version and didnt know wether to be pleased or not when they said it wasnt!)

You're nearly there now. Im glad its morning. Mine was too. I'll be thinking of you at 10.30 then xx

Lily - hand holding and for you too hun. 3 weeks must be agonising! Well done for still being able type! Only 4 days now though, you'd done the longest part. Talk to us here to help pass the time xxxx

lily06 · 31/07/2011 18:02

Littlewifey good luck tomorrow, will be thinking of you. Did they say how long before you get the results? I can't believe they lost your first set of results, that's awful. My appt is am too, really pleased about that.

Thanks, Misty, yes three weeks has felt like an age. Its four weeks now since we got the high risk result back. Have been keeping busy today though, defrosted the fridge freezer and just finishing off making a three course meal for my parents who are coming round tonight.

missmapp · 31/07/2011 18:23

I had a 1 in 4 risk of downs with ds2 as he had a nuchal fold of 4.8mm at 12 weeks, we had an amnio so we would be prepared for anything . I was 35 at the time. It was totally clear. Interestingly, both ds1 and 2 had high nuchal folds ( I had 1 in 35 risk with ds1 but didnt have an amnio, he was fine ) and they have both now been diagnosed with noonans syndrome, which means they have heart conditions ( fortunately not serious) and are short. I dont know wether the nuchal links to noonans, but it seems a coincidence, anyway what Im trying to say is, doctors dont know everything!!

Best of luck, thewait is awful, but you are nearly there.

scaryg · 31/07/2011 20:13

Littlewifey,

I just wanted to wish you luck for tomorrow, it?s horrid all this waiting? (and lily06 for Thursday)

I had my first scan at 12+4 weeks and my NT result was 5.7mm, the specialist midwife said there was no point doing the blood tests as they?d come back as high risk (I?m just 35), she gave me a 1 in 3 chance of a chromosome abnormality. So she booked my in for a CVS 24 hours later which was last Friday, the specialist chap that did the CVS said the NT had increased to 7.3mm and that my chances had reduced to a 1 in 2 chance of Downs, Turners, Edwards or Pataus. Luckily I got a call on Monday afternoon (24 hours earlier than I was expecting) with ?unexpectantly good news? I had tested negative for these 4 most common abnormalities.

I'm not counting my blesings yet as I now have to wait for the full test results which?ll take 2 ? 3 weeks and I have another scan booked for week 16 to check for heart defects. The waiting is the most horrid thing ever, I just kinda presumed everything was going to be ok just like everyone I know who has had a baby but not so and I keep thinking ?why us'.

I?ve started telling my nearest and dearest as whatever the outcome we?ve a high possibility of having a poorly baby and as they?ll want to help and support us we wanted to give them as much notice as possible.

pixiestix · 31/07/2011 20:20

Will be thinking of you tomorrow Littlewifey and hoping for the best x

misty0 · 01/08/2011 07:57

Thinking of you littlewifey - you'll do just fine xxxx

littlewifey · 01/08/2011 12:10

Am back from amnio and it really wasn't as bad as I'd worked it up to be in my head. They had to take two samples because the first was blood stained so would stop the fast result but luckily the second was clear. Have slight achey period pain now but am resting on bed with feet up. Doctor was really nice and looked for nasal bone for me but baby had hands in front of face and would not cooperate! She said she thought she saw nasal bone but couldn't be certain without better view. Now is just the awful wait :-( will be thinking of you on Thursday lily06 and thanks to all you lovely ladies for your kind thoughts- it has meant a lot x

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misty0 · 01/08/2011 13:35

There you see?! I knew it wouldnt be as bad as you thought Well done.

We're not going anywhere so if you need to vent/chat/stress here while your waiting, go ahead. When did they say the results would be ready?

x

littlewifey · 01/08/2011 14:23

Thanks MistyO, they said results should be in thurs afternoon, well the initial ones anyway. I am so scared!

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misty0 · 01/08/2011 19:09

Of course you're scared hun. Its natural. Just try to avoid sitting brooding over the next couple of days if you can. Its very hard, i know. If you havnt been through it, you cant imagine how hard it is.

Lilly, you must be an expert at this now? Not long now.

Find things that make you smile. On the telly or whatever. I had my CVS on a Friday morning, and had to wait till Monday afternoon for the results. It was that hot spell in April and OH and i went for a long walk every day (we were lucky enough that he could stay off work to be with me) and he kept my spirits up by keeping the communication between us open and thinking positive thoughts to get us through. I had exhausting bouts of tears out of no-where and then half an hour later i'd be laughing at something like nothing was wrong in our lives at all. Dont feel guilt about having the odd 10 mins when you do actually think about something else!

You do have the strength to get through this The outcome is not set in stone. Love and thoughts are with you and your OH.

Yours too Lilly. Hang on in there xx

lily06 · 02/08/2011 16:45

I'm pleased it went ok for you yesterday, will pop back thurs hoping for good result for you, hope the time passes quickly for you until then.

misty0 · 03/08/2011 20:55

Good wishes for you Lilly for your amnio tomorrow xx

Will be keeping every thing crossed for you too Littlewifey. Hope you're baring up xx

littlewifey · 03/08/2011 22:37

Good luck for tomorrow Lily. Thanks Misty, feel like I'm going a bit insane and am petrified to take the call when they ring but at least hopefully I will know tomorrow one way or the other.

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lily06 · 04/08/2011 10:48

Thanks littlewifey and misty. Amnio done plus blood test and anti d jab. Hoping for results late tomorrow or otherwise Monday. Any news yet littlewifey? Keeping everything crossed for you.

misty0 · 04/08/2011 11:03

Well done Lilly, its over with xx Hopefully they will hurry up and get your results tomorrow for you. FX

Little w - everything crossed here. I do hope you get brilliant news xx

littlewifey · 04/08/2011 19:37

I am really struggling ladies- not sleeping and barely managing to eat. Thought I would know today but got call to say samples were late going to the lab Monday so now won't know til tomorrow at the earliest. I broke down on the phone- felt so stupid but I am really not coping and was so hoping to know by today. I am convinced I am the 1 especially since doc wasn't certain she could see nasal bone and that my femur length is only in 5th centile so only just on graph. Also the fact that my bloods were so bad and really it's only my age giving me the 1:150 odds which I don't feel means much. I feel the only positive was our nuchal and that alone isn't going to be enough. I have already started researching termination and am petrified about having to deliver baby. So sorry for babbling but I can't say this in 'real life' as no-one except dh and inlaws and parents know but my parents are on holiday til sat. I don't want to upset dh anymore as he is struggling too.
Lily, I am really glad that your amnio went well and I truly hope you get good results xx

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misty0 · 04/08/2011 20:14

Oh little, i've been clicking back here every so often wondering how you were getting on.

Im so so sorry you are being messed about like this. It is byond the pale to be expected to hang on and on waiting. You and your DH must be frantic.

I totally understand when you say you want to lean less heavily on him at times for fear of upsetting him more. I said those exact words on my thread when i was in your position. Its normal. Lean on us.

There is nothing anyone can say to make this any easier for you, except, maybe, that this is an administritive error. It hasnt worsened your odds. You're just understandably very very stressed and struggling to cope. Who wouldnt be?

I understand the need to research worst case scenarios too. I did the same! Its all about self preservation and gaining a sense of control. Please - (and i dont want you to think im saying this becasue i think you'll get bad news ... i dont, i think you'll be fine) dont hesitate to ask any questions about termination if you think it would help. If your mind is racing and in a spin you'll be imagining all sorts of awful things just now.

I can honestly say that even though sadly my own story ended with a term. the worst part of the whole event was the part you're in right now. The not knowing. Please look after yourself little. Eat light snacks and try to get cat naps. Dont expect too much of your self and try not to keep googling! Sometimes that doesnt help.

All my best wishes for tomorrow and to you and your DH.

mrsbigz · 04/08/2011 22:06

hi littlewifey,

i've been following your posts and i'm sorry that i've not posted much before now.
i'm so sorry that you didn't get the results you were hoping for today. i remember that feeling of waiting and waiting and having a particular date sat in your head that is the date you will 'know'. as Misty said, the worst part about this whole process is the not knowing, the feeling of not being in control, and trying to stay positive while having a (very healthy i might add) need to know all sides of the spectrum, just in case.
i'm sure you have done a lot of research - dr google can be both your best friend and your worst enemy, so if you have any questions, like Misty said please ask them here, as we have all been in the same situation as you have. The positives of your situation are your age, and that you had a very 'normal' nuchal - which are both really promising. the bloods are obviously what have raised your risk, BUT there are many many reasons why bloods can be higher/lower - and they are certainly not all to do with problem with the baby. bloods can also be 'environmental' in that they can be swayed but things currently going on with you.
I have every faith that when you get your results tomorrow all will be fine, but in the meantime please talk on here if you just want to vent, or have questions. like you and Misty i didn't want to burden my dh more than i had to as he was both suffering and also trying to be strong for me (a difficult combination!!) - so i spent a lot of time on here when i went through my experience, and also i found writing down how i was feeling very cathargic - it helped me to make sense of my own feelings and come to decisions. Unfortunately like Misty my own experience ended in a termination at 17wks - so if you have any questions about what that entails then i am more than happy to talk to you about it. FYI i had a very high nuchal (7.4mm) which was the main cause of my babys problems as we found out after amnio.
I know it's really hard, but please try and take your mind of things tonight - watch a silly film, eat, play a game on your phone (i did that a lot!!) and tomorrow, if you've not heard by lunchtime and you're getting worried, don't be afraid of calling the hospital and chasing your results - they will understand how you are feeling and am sure will do their utmost to get them to you as soon as possible.
thinking of you and sending many positive thoughts your way,
xxxxxx

lily06 · 05/08/2011 08:12

Littlewifey I'm so sorry you didn't get your results yesterday. And I know exactly what you mean about not wanting to burden your DH, just the same here. Also mine is very optimistic about things where as I am always very pessimistic. Keeping everything crossed that you get your results today and that they are all clear. x

Misty and MrsBigz I would really like to hear your experiences of termination if its not too painful for you. I too have been googling for the past few weeks, and my main question is whether the surgical option still exists at 16/17 weeks plus or whether labour is the only choice.

blacktreaclecat · 05/08/2011 13:17

Good luck to both of you.
Bpas, Marie Stopes etc can do surgical up to 24 weeks. NHS hospitals the cut off is officially 13 weeks although they would have done it for me at 14.
xx

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lily06 · 05/08/2011 13:38

Thank you blacktreaclecat I didn't know that. Do you know why the nhs don't do them later but the other places do?

Any news littlewifey?

lily06 · 05/08/2011 15:35

Bad news from me I'm afraid, just had call to confirm downs.

misty0 · 05/08/2011 16:10

Lilly, im so sorry to hear that news lovie. Such a hard thing to find out. I wont go on and on, i dont know if you've made any deffinate decisions yet.

I'll just say that in my case too i had the option for surgical only up untill the end of the 14th week. I got my appt. just in time for this.

Love and thoughts with you and your OH xx Stay in touch.

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