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To Amnio or not?????

46 replies

fifitot · 05/01/2010 13:20

Please help me come to a decision! I am in my 40s and so was booked in for an Amnio. IN the meantime have had a full NT screen with bloods that has given me odds of 1 in 254. I know this is good as my risk before the screen was very high due to my age. The cut off point for an amnio based on risk in my PCT is 250. There was nothing of concern on the NT screen - all there that was supposed to be there and the measurement was 1.1mm.

Just really don't know what to do! I have spoke to the consultant, the sonographer, ARC and an obs that I know - they all give me a really balanced argument but obviously can't make the decision for me - which basically is what I want!!!!!!

What would any of you do? My gut instinct is that baby is fine. If I did have a positive result for Downs I probably would have a termination (rightly or wrongly, please don't judge me on that, there are other people I need to consider in the family). Really scared about mc rate in Amnio not particularly about the result.

Any words of wisdom? Thanks.

OP posts:
bidibidi · 09/01/2010 17:30

My 16 wk scan at the FMC (London) was much more detailed than any of of my NHS 20 wk anomaly scans.
But only an amnio will give you certainty.

babynumberthree · 14/01/2010 08:33

I thought I would update if anyone is interested. All the threads had ultimately helped me reach a decision. I had the amnio yesterday. Not painful and very quick but nevertheless a weird, shocking feeling unlike any I've had before. Prof N at FMC truly amazing in my opinion. Scan still shows no soft markers at 18weeks that theoretically halves the risk as 50% of babies with down syndrome will have no soft markers on scan. Very happy that scan is normal and content with my decision. Having a day off resting at home which I'm not very good at. Feel a bit tearful today and as allways worried about something going wrong and the risk of miscarriage. Should get the results tomorrow. Everything crossed.

shangrila · 14/01/2010 11:43

Babynumberthree - Nicolaides does have an 'interesting' bedside manner, doesn't he? But he surely knows his stuff. You cannot go to anyone better, in my opinion.

Another great thing about the FMC is that you get the results really quickly, so when they say tomorrow, they mean tomorrow. Rest up for now. I read rubbish books and watched mindless TV in bed for two whole days, although I'm sure that was more down to me indulging myself than pure necessity!

Hoping for the best of outcomes for you.

babynumberthree · 14/01/2010 19:40

Thank you shangrila. Is exactly what I'm doing although struggling to concentrate. Nicolaides certainly doesn't have a conventional bedside manner. I liked him but I can imagine that not everybody does

babynumberthree · 15/01/2010 12:14

Hi fifitot - thought I would update. Feeling much better today and also just had my results and have been given the all clear!! So far so good. Still feeling nervous though but trying to take it easy and think positive. For me it has been worth it having the amnio to have this certainty re chromosomal abnormalities but the risk of miscarriage, however small, is very hard to live with.

I hope you have reached a decision that you are happy with and wish you all the best with your pregnancy.

fifitot · 15/01/2010 14:30

Thanks for the update and so glad you got the all clear. I am starting to think I won't have the test now. Got another couple of days to think about it and probably won't decide until the actual day.

Take care of yourself. I was planning on staying in bed pretty much for 3 days if I go for it! I have read that if you are OK the day after it is pretty likely you will continue to be OK but not sure where I read it.

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busierbee · 15/01/2010 21:58

Right fifitot
I have had two - maybe three glasses wine.
Am also in forties.
My odds were high, have had two DS pregnancies.
Your odds are enviably good, and all indicates a healthy baby. Having said that, if you feel that you cannot live with any concerns about any detectable abnormalities then have the amnio.
I have had two cvs, two terminations and a miscarriage. ( I have three big, healthy kids too). If the consultant is a respected one, then have it done.
If you are more worried about the amnio than the abnormality, well then do not.
Or get thee on the train to the FMC and get the all clear from the Godlike Prof himself.
Boy, there are no easy answers are there?
Hit me with the bloods - are they roughly the same measurement?
Good luck.
And happy pregnancy.
B x

fifitot · 15/01/2010 22:12

Thanks! The bloods are around 1 MoM I think. Nothing of concern as far as I know .

Can't get to FMC and anyway am nearly 16 weeks now so it's amnio or nothing really. Scanning place said not much to be added by a soft marker scan so not bothering.

As time has moved on, not so sure I could go through with a termination so maybe better not knowing. Who knows?

All these comments help though.

Enjoy your wine - wish I could have some!

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fifitot · 15/01/2010 22:16

Just checked and bloods were 1.183 and 1.194. So yes similar - is this significant?

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busierbee · 15/01/2010 22:39

Those are good bloods my dear.
You know what, my instinct would be... be greatful the results are so good. Nothing seems to be of concern really does it?
Surely you are suffering the concern we all feel when we conceive post forty.
Hard to know what one would do until confronted with the results. Believe me, not as black and white as one might think.
Maybe if you can, if you can and not easy I know, try and enjoy being pregnant?
Wine is really rather over- rated!

LillianGish · 15/01/2010 23:07

I'd have the amnio - in fact I wouldn't think twice. I have posted on this many times - I had one with dd (bloods showed high risk - esp when combined with my age, 35) and I had all the misgivings you have. I Went ahead with the test which showed she was fine and had no adverse effects. In fact it was no big deal. Two years later when I was pregnant with ds I was actively hoping to be called for an amnio and two years older - even higher risk - I got my wish. Ds also fine and again no adverse effects. The consultant told me the risk of miscarriage is usually much lower than they tell you - you get national stats whereas stats for an individual hospital may be much better (none at all in hospital where I had mine done). I'm the sort of person who hates uncertainty, I just had to know - I also found out the sex of both my babies at the same time! Good luck whatever you decide and enjoy the rest of your pregnancy (you'll enjoy it much more if you have the test).

fifitot · 16/01/2010 15:36

Thanks Lillian, thanks for posting. I just view the amnio with trepidation not least because it is highly unlikely I would get pregnant again at my age so really don't want to take risks.

Maybe if I was younger it would be easier. At first I thought I would definately terminate if it was a 'bad' result, now not so sure so not sure if anything to be gained by putting myself under the stress of an amnio.

Still time to change my mind of course!

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fifitot · 16/01/2010 15:39

Also - thanks busier. I like your approach!

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jardins · 18/01/2010 18:31

Dear fifitot, I've just read your thread and I wanted to see how you were getting on with your decision making. I really understand where you are coming from. I am currently 39+3 weeks pregnant with my third having turned 41 two months ago. We moved to another region here in France when I was 11 weeks pregnant so I didn't know anybody. Luckily it transpired that the specialist who performed my 12 week (and all subsequent) scans has an excellent reputation. ANYHOW my nuchal scan result, combined with my age came back 1/344. The specialist told me that in my shoes he wouldn't bother with the tripple test as my age would give me a 'false' high risk reading. Nevertheless following a very confusing appointment with a genetics counseller I went ahead with the tripple test and, sure enough, the result for that was high risk - 1/189. However the combined result of the two, confusingly, was more promising - 1/1043. I had 24 hrs to decide whether to have an amnio or not as around the 15 August everything closes in France. I was totally lost as my medical contacts from my old town were all on holiday so I had virtually no one to advise me. Plus my results confused me: I'm not very good with numbers!! I suffered a miscarriage just before conceiving and I was afraid of throwing it all away were I to opt for the amnio and then mc. I also knew I would not have the courage to start conceiving again were this to happen.

I almost settled, reluctantly, for an amnio until my husband had a brainwave and called the doctor who had carried out the 12 week scan. He suggested a detailed anomally scan at 18 weeks which is exactly what we did. He was very reassuring and even went as far as to say 'if I find out this baby has DS I'll change professions'. I have spent the rest of my pregnancy feeling serene with my choice. Unfortunately today I have just found out on my old antenatal thread that one of the ladies who went through the same questions as myself at the same time re amnio or not in July/Aug has just given birth to a DS baby. Please don't misunderstand me. I KNOW how much joy her lovely baby will bring her especially as she seems to be in good health. I say unfortunately SELFISHLY for being so near my due date with the natural fear of giving birth descending on my I find I am unsettled about the possible outcome of our child having a disability.

I hope I haven't confused you with my post. I simply wanted to emphasise how much I can relate to your dilemna.

Please keep us posted.

saintlydamemrsturnip · 19/01/2010 10:23

fifi - given that you fear you wouldn't get pregnant again and that you think you might not terminate for a disability anyway I think I'd bin the idea of an amnio. Well I did when I was in those shoes iyswim.

In my first pregnancy the most important thing for me was having a baby. I was completely paranoid about infertility (no reason to be, I was in my 20's, no particular problems conceiving once worked out cycle correctly - just one of those irrational things) and we decided that we would rather parent a child with disabilities than no child at all so we decided against invasive testing. (In fact scans were clear, stats were very good and when ds1 was 2 we found out he has a disability that affects him far more than he would have been affected by DS- hey ho).

For ds2 and ds3 the decision making process was different (they were at a very high risk of having the same condition as ds1 somewhere between 1 in 3 and 1 in 10 so it seemed pointless fussing about DS when we could terminate for that then go on to have another child as severely affected as ds1 iyswim).

No idea whether that helps, just our thought process when we were concerned about being unable to conceive again.

Bucharest · 19/01/2010 10:31

It never crossed my mind not to have one. (I was almost 38)

I just needed to know one way or the other.

fifitot · 19/01/2010 12:34

Went for amnio this morning, still undecided. Went through to sign the consent forms and promptly burst into tears. Quite uncontrollable ones at that embarassingly. Couldn't go through with it.

It might be the cowards way out but after trying to rationalise this decision for the past month and reading everything there is to know on the internet, have just gone on my emotional response rather than a rational one. At the end of the day my gut instinct is as valid as anything else.

I am happy the pressure is off. Doesn't mean I won't worry but there is always something to worry about somewhere!

Thankyou for all your lovely replies, it has really helped.

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saintlydamemrsturnip · 19/01/2010 12:44

I think for something like this you can only go with gut instinct fifi because ultimately that tells you what you are able to live.

Hope you feel better now the pressure for a decision is off iyswim.

fifitot · 21/01/2010 08:35

Thanks saintly.

I had hoped that if people read this they would have something to say about my decision whether they think I did the right thing or whatever. Not that it can change things now of course.

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saintlydamemrsturnip · 21/01/2010 18:30

Well you made the same decision I would have (indeed did I guess). Not that that matters but I understand it.

I don't think it was the coward's way. I think it's brave to listen to your gut. (the last time I did that for a difficult decision it was about stopping a therapy ds1 was doing - I felt we ought to carry on, but my gut said it was wrong for him and we needed to stop - over a year later now and I know very clearly my gut instinct of stopping was right for him - different situation but one where I remember very clearly trying to wrestle against gut instict - when i should have just gone with it from the beginning).

sarah293 · 21/01/2010 18:49

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