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

(69 Posts)
littlewifey Tue 26-Jul-11 20:49:59

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

BikeRunSki Tue 26-Jul-11 20:53:35

yes, friend of mine, everything high risk, bloods, age, nuchal... Decided against amnio.

Her 3 yo DS is fine in every way.

rhetorician Tue 26-Jul-11 21:05:56

yes, us: thread a bit further down. 1:11 for down syndrome (bloods, age, not great nuchal), had cvs immediately - no chromosomal problems, now 21 weeks, no problems seen on detailed scan. The waiting sucks like nothing else. Good luck

mybrainsthinkingfuckyou Tue 26-Jul-11 21:06:25

Higher risk DD1 - told would be spotted on the anomaly scan - turned out she was fine.

No. of 'false positives' on bloodtesting q.high but I didn't know that at time.

DD2 amnio - as 39 it was par for course where I am abroad/no blood tests done - it was fine - i asked for speed results (cost me 130 euros)

Amnio itself was okay - having had an epidural with DD1 I am good at keeping
still - it didn't hurt. I forgot that chatting/laughing (i sometimes make jokes when nervous) also causes movement and I had urgent need to cough just because I knewI couldn't - but it was fine and done quickly.

Unlike my mum in the early 80s who walked straight back to work after her amnio (sister fine btw) I laid down and did nothing for 3 days. Also no sex or orgasms for a week I was told.

DD2 absolutely fine. Ridiculous I know as I was distraught with the red flag with DD1 - slightly older than you at the time, similar odds for spina bifida -
but it all turned out okay.

Do NOT start researching on the internet- you WILL drive yourself crazy.
Un-mumsnetty hugs x

littlewifey Tue 26-Jul-11 21:09:24

Thanks. I can understand why she decided against amnio as I am worrying myself sick about the risk of miscarriage from it which is approx 1% putting it higher than the 1:150 risk I was given :-( Anyone else out there considered high risk but should have been low because of age?

Doodlez Tue 26-Jul-11 21:10:51

1 in 4 chance with second pregnancy (Barts test). Had amnio. Had private testing (48 hours wait instead of NHS two weeks). All fine. DD now 8.

misty0 Tue 26-Jul-11 21:12:52

Hello lovie

I'm sorry you've got this worry over your head now - this will seem like an awful long wait for you till Moday <hugs>

I'm afraid i have no advice for you re: odds/amnio/age, but would like to offer a virtual hand to hold while you're waiting - i know how it feels xx

I had cvs at 13+5 (like amnio, but the needle is put into the placenta, not the amniotic fluid) and would like to reasure you at least, that it was fine. I dreaded the proceedure, but it was over very quickly with no more pain than with a regular bloodtest. So dont worry your self about that.

Keep us informed, hun, and chat here if and when you need to. Every thing crossed for you that all is totally fine with baby - theres still a good chance this will turn out well xxxxx

PeterSpanswick Tue 26-Jul-11 21:13:03

Hi, I posted here a while back after receiving borderline results from the triple test ( 1 in 251 which put me just above the marker into "low risk" category which was not what it felt like at the time, especially given that only two years ago my results for ds1 were 1 in 2000 odd!) The nuchal scan isn't offered here so that was based on bloods alone and we paid privately to have a quad test done (more bloods).

Scans were both clear for any markers or potential problems but the further tests placed our odds of ds as 1 in 6 which terrified me, especially given that I am only 25, low risk for potential problems etc so was convinced that there had to be something really wrong with my bloods for our odds to be so high.

We decided to go for the amnio as I was desperate to find out for certain what problems we might be dealing with and luckily the results were clear.

Can honestly say those were the worst few weeks of my life and I know there isn't anything I can say to help but somebody on here actually worked out the odds for me to show me that the chances of something being wrong were still relatively small and told me to imagine standing in a room with five other people and why it was so unreasonable to be convinced I would be the unlucky one.

Please look after yourself, there are so many positive stories here to help no matter what the results turn out to be, whether you decide on further testing or not. Your chances are so much better than mine were and I still got the all clear so please be reassured if you will allow yourself to be - best of luck with your pregnancy.

mybrainsthinkingfuckyou Tue 26-Jul-11 21:13:58

Sorry I lost thread of my sentence - Ridiculous I know...but do try not to worry.

Also don't know about UK but even paying for a speed result I had amnio on a Thursday and got results on following Tuesday (These were initial results not 100% confirmation -got those a couple of weeks later).

The lab has to grow the tissue they get from the fluid so you will still need to wait after Monday. Sorry.

You will see extra scan though.

With my first, I had a false positive and had to have a scan which was still indefinite...and had to wait another 4 weeks for the anomaly scan. The waiting does feel like torture but you will get through it.

CombineArvester Tue 26-Jul-11 21:15:19

Me when I was 29 ish but my nuchal was high as well. Combined was also 1:150 (or was it 149) but chances on nuchal alone was 1:27. The fact that your nuchal was 1.3mm at 14 weeks is fantastic imo.

There are lots of false positives to do with the bloods. Have you got the numbers they gave you, is it that the PAPP-A is low or is the beta HCG high? Have you had any bleeding in the first trimester? Are you under or over weight? They are finding out now that lots of things can affect the blood result. TBH I wouldn't risk an amnio on just the bloods , 1:150 still means 149 have no probs.

Let us know what your numbers are x

DandyGilver Tue 26-Jul-11 21:17:59

Yes, NHS lost my bloods and having told me that they would only contact me if there was a problem, I didn't chase it.

I was also 1: 150 - but older than you, I was 36.

Amnio went fine ( we had a private 3D scan booked for the same morning supposed to be a "fun" thing to see more of the baby. We were in bits it was terrible)

It was the longest weekend of my life. It was done on Friday and we got the results back on Monday. All well. He is 3 now and absolutely fine/normal/perfect.

Hope things work out for you.

reikizen Tue 26-Jul-11 21:21:04

I had a 1:95 risk with dd2 so decided to go for the amnio. It was much less stressful than I had anticipated and not painful at all. The wait for the results was horrendous and nothing can change that for you. However, at the time I was pretty ignorant about Downs Syndrome and now I am better informed I would not be nearly as scared as I was then. I know we would have loved our baby and coped whatever had happened, and that there are much worse things that can happen than Downs.

hellymelly Tue 26-Jul-11 21:26:55

My best friend had odds of 1/120 when she was 28. The baby was fine (she didn't have an amnio).The nuchal fold result is a good sign,and try and think that you have a 149/1 chance of having a baby with no problems. (and I agree with the above poster that there are much worse things than Downs).Wishing you all the best.

littlewifey Tue 26-Jul-11 21:48:34

Thanks everyone for your responses and for sharing your experiences. I don't yet know what my Papp-a and hcg levels were as we are on holiday so haven't seen report yet, just had phonecall to say I am high risk. I did phone back today to ask for numbers but they couldn't find my report!! Said they'd find it and call back but they haven't done so, think I will chase again tomorrow. I did have very slight spotting which was why I had an early private scan and that showed area of darkness said to have been a bleed near to baby. Can bleeds affect the result then?

CombineArvester Tue 26-Jul-11 21:58:13

Yes bleeding can affect the PAPP-A result and make it lower than it otherwise would have been, don't ask me why but this is what I was told.

If the PAPP-A result is below 0.4 MoM then it might be a predictor of future placental problems rather than genetic abnormalities so it would be worth having a doppler scan of placental blood flow at 24 weeks.

To be honest it sounds like you need to be seen by someone decent who can give you all this info and doesn't bloody lose the results - how can you trust that they've done it properly if they can't even find the shitey paperwork fgs. Sorry but it makes me really angry. Have they referred you to the specialist midwife, might be called the fetal medicine midwife, or the consultant from the fetal medicine unit?

Have you called Antenatal Results and Choices? They are v v kind and helpful.

littlewifey Wed 27-Jul-11 08:20:49

Right have just got my blood results the hcg was 2.85 which midwife told me is very high because 1 is considered normal and the Papp a was 0.3 which again is very low when normal is 1 :-( she said if my nuchal and age weren't in my favour I'd have even worse odds. This has made me feel much worse :-( is there anyone else out there who has had similar rubbish bloods but baby turned out healthy? I'm still holding onto the hope that bloods aren't too reliable because they were taken at 14wks 1 day almost three weeks after nuchal measurement and only one day before cut off point that these bloods can even be taken. However midwife said this isn't a factor :-(

misty0 Wed 27-Jul-11 10:38:47

Oh God! The worry of it all! Hang on in there littlewifey - I do hope someone can come and reasure you a bit more about this. 14+1 is a little late for bloods. I had my bloods done at 10 weeks - i booked a private scan around then (ready for when i was 13 weeks) and the consultant wanted me in right away to take my bloods, saying 10 - 11 weeks is ideal. She gave the results when i returned for the actual scan 2 weeks later.

The imcompetence of hospitals is astoundig sometimes. Sadly we had to terminate at 14+3, in April just gone, and after 3 months of faffing around the hospital have now admitted they have completely LOST the autopsy report on my baby sad Unbelievable.

Look after yourself while going through this waiting - and i know you must feel desperate at the moment, but please remember there is still a good chance of everything being ok. We're waiting with you xx

CombineArvester Wed 27-Jul-11 14:03:33

Right. The increased risk comes from your PAPP-A being lower than 0.4 MoM and HCG being higher than 2.5 MoM. So your PAPP-A is only just lower than the borderline and that could well be due to the bleeding. Does that sound any better? It's done in multiples of the median rather than the number you're given representing the actual amount of the chemical in the blood, does that make sense- it's how far away you are from the median not the mean? It's like the nuchal translucency, my baby was 3.5mm but the borderline of normal was 3mm, so it wasn't massively outlandish, a bit like your blood results, but of course you only meet people whose NT was 1mm!

So your blood results although only just over the border of normal indicate an increased risk of trisomy 21 (down's syndrome). In the other main trisomies (13 and 18 - I think that's Edward's and Patau's syndrome) the Beta HCG would be very low (below 0.4 MoM). But your nuchal translucency is very much within the normal range and your age is on your side and your blood results are only just outside the normal range. The nuchal translucency is the most influential part of the test on risk calculation.

I think you need to have a think on what you would do if the amnio / CVS was positive for Down's syndrome. Make sure you have all the information you need to make the decision whether or not to have the amnio, and make sure you call ARC on 020 7631 0285 they are really helpful.

CombineArvester Wed 27-Jul-11 14:04:20

Oh and yes the combined test which you had really shouldn't be done past 13+6.

CombineArvester Wed 27-Jul-11 14:07:58

Oops I'm wrong its 14+1 according to ARC but my consultant said between 11-13+6.

littlewifey Wed 27-Jul-11 14:30:07

Thank you for sharing your experience misty, it means a lot to hear what others have experienced and helps me to process my own thoughts and worries.
Combine, thanks for all the information that you have given me. You have made me feel a lot more positive. Me and dh are going to have a long think about what we will do if amnio comes back as DS.

WasSparklies Wed 27-Jul-11 21:39:32

If you eventually decide you wouldn't terminate for DS but still need to know before birth, you could always consider a late amnio at 30-32 weeks. The risk of loss becomes a risk of pre-term labour, and it's generally considered "safe" in as much as these things can be. I did this with my 1 in 34 (all was clear). I won't lie to you, the wait was horrendous but for me (and this is such a personal thing) I knew I couldn't live with myself if I lost the baby to amnio.

Just throwing it out there as an option as not many people know about it or to ask for it - I did get mine done on the NHS for free.

Hope all goes well with whatever you decide and whatever results!

littlewifey Thu 28-Jul-11 07:10:00

WasSparklies- thanks, I wasn't even aware that was an option. I wish the NHS would inform people of more. I am glad everything turned out ok for you.
Mistyo- I also meant to write yesterday that I am so sorry for your loss, I can't even imagine the strength you must have had to find to go through that. I too am constantly astounded at the incompetence of certain healthcare professionals/systems x

lktoday5 Thu 28-Jul-11 09:50:36

littlewifey I was in exactly the same situation as you 14 or so weeks ago. Whilst I'm 35 I had a fine nuchal, no anomalies on scan but horrific bloods (on my bloods alone we were 1:8 i seem to recall.) Our overall odds were given as 1:20. I dont have them on me but from memory hcg was 4+ and papp-a about the same as yours.

Similarly my bloods were taken very late in the CVS window but i dont believe this was an influencer. After a very scary few days (including 1 failed attempt at a CVS where the consultant wouldnt go in because of my 'unusual' gynaecology, and 1 successfull) I'm very pleased to say our baby is all fine, no abnormalities at all and now kicking away like David Beckham.

I did a LOT of reading about this time and in my (completely uneducated) opinion from going through many months and years of forums on here and other sites it seems that high bloods with no other markers often turn out to be fine. Of course I cannot possibly say that is true in every case and it is completely my own opinion but please rest assured that there are many others who have been in the same position, desperately searching for information and help combine is completely right about arc - do call them, I've heard great things about them.

Please also do PM me if you need any more hand holding or support, more than happy to help.

littlewifey Fri 29-Jul-11 08:00:07

Thank you for your kind words lktoday. The wait is definitely the worst thing ever. We are on holiday at the moment and, although we have tried very hard not to let it spoil things, it has def put a dampner on things. However, I think the wait for my amnio on Monday and the initial results Thursday will be much worse from tomorrow when we are sat at home with nothing else to think about! I really appreciate all you lovely ladies sharing your experiences, it has helped me and dh a lot this week.

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