To Amnio or not?????

[fifitot]

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.

[kidcreoleandthecoconuts]

You have to ask yourself, how would you cope if you didn't have the amnio and you had a baby with Down's Syndrome?

If you know deep down that this is something that you wouldn't cope with then I think you should have the amnio tbh.

It's such a difficult decision isn't it? How does your DH feel about it?

[fifitot]

Thanks. He's as indecisive as me!

This is one of the worst decisions I have ever had to make in my life! If only life were simple.

[negrilbaby]

In my PCT high risk is 1 in 150 - so you would be classified as easily low risk.

[babynumberthree]

I am in a similar position with slightly highter odds and have found the decision equally difficult. I'm 37 and my results have come back as 1:190. I know this is classed as low risk but it is not no risk. There are lots of arguments for and against amnio but after reading the entire content of google on the subject and speaking to prof nicolaides at the fmc, as well as racking my brain for the last few weeks I can only tell you what helped me to make up my mind. I can not live with the uncertainty of not knowing as it would change the outcome of my pregnancy as it would yours. The only certain answer is to have the amnio and it seems to me that the risk of miscarriage is substantially lower that the generally quoted risk of 0,5-1%. So I am having the amnio tomorrow, knowing that it doesn't guarantee a healthy baby even if normal and hoping with all my might that it doesn't affect the pregnancy. Good luck with your decision, it is the one of the hardest decisions I have ever had to make.

[fifitot]

Thanks to all of you. Babynumberthree - if you don't mind posting on this thread again I would love to hear how it goes and how you find the process.

I am still conflicted about what to do but what you say does resonate with me.

Good luck with everything.

[Carrotfly]

My gut feeling was that everything was fine.

DH was worried because of my age, so I did it for him, mostly...

The procedure itself was fine, much better than I expected from reading things about it.

In the end everything was fine.

Sometimes you just have to do the things that scare you. I continued the rest of my pregnancy witthout worry (ish)

[cece]

I had a risk of 1;50 when I was 40. I refused further tests due to the risk of mc. At 18 and half weeks I mc anyway. I was so pleased I didn't have it done.

[BelleDameSansMerci]

I had very low risk and didn't have the amnio - I was 41 at the time. I did have nuchal fold scan and was told I had same odds as 19 year old so v low. That did help me to make the decision. I just "knew" my baby would be fine and she was...

I think kidcreole is spot on with the advice though.

[fifitot]

I think what worries me most is the the threat of mc is around for up to 2 weeks. Though I think the immediate risk goes after a few days. Anyone know?

[cece]

After my high risk screening I had an appt with the consultant who explained all of the risks and statitics to me. I had to ask for it though. The mw who phoned me to tell me my result sorted it out for me and it was within 4 days of getting the result.

[elvislives]

I had my DD at 43. My bloods gave me a risk of 1:24. My gut feeling was DD was fine but DH really wanted the amnio because he didn't feel he could cope with a child with DS.

The consultant did a detailed scan of DD's heart (in colour) before we started because she could see I wasn't happy about the amnio. It isn't foolproof but she thought we might get some clues.

In the end- despite misgivings- I had the amnio. It hurt and they had to do it twice. I worried sick about miscarrying and didn't even feel reassured once I got the all-clear. With hindsight I wouldn't do it again, under those same circumstances.

You are the only one who can make the decision. FWIW your odds are good. In your shoes I wouldn't have the amnio, because the risk of MC is 1:100 compared to your odds of 1:254. But even with odds of 1:1000 you could still be the 1.

[fifitot]

Thanks ladies - still grappling with the decision. i doubt I will be sure right up to the day the test is scheduled.

[babynumberthree]

Fifitot just writing to update you on my day. Set off this morning for amnio only to abandon the car after a mile due to heavy snow and walked home feeling utterly defeated. Amnio now booked for next wednesday as this is the only day prof nicolaides does it at fmc. Some doctors have a much lower miscarriage rate than the generally quoted ones. Unfortunately that leaves me with another week of nightmares and anxiety waiting for the test.

[SmacOnTheLipsUnderTheMistletoe]

if you would terminate then the only obvious answer is to have the amnio because although your risk is relatively low you could still be that one. As elvislives says you could be the one even if your stats were 1:1000.
To answer one of your other questions about the threat of mc. I was told to expect cramps like period pains for about 2 days and if I woke up on the 2nd morning feeling fine then I was very unlikely to miscarry or if I did then it was unlikely to be the amnio that had caused it. As cece unfortunately discovered you can miscarry anyway even at that stage.
I am 36 and my results from the triple test came back as 1:55 and I chose to have the amnio as I needed to know. I would have worried and stressed through the rest of my pregnancy so slightly different situation to you. The results came back clear and I have been much happier. I was a nervous, anxious wreck in the days following the blood results and waiting for the amnio results. I just wanted to burst into tears the whole time and I'm not normally like that.
Good luck with whatever you decide.

[SmacOnTheLipsUnderTheMistletoe]

babynumberthree sorry to hear you have to wait even longer. The waiting is horrible. Good luck to you too.

[fifitot]

Oh babynumberthree that is awful. After psyching yourself up to it as well and another week of anxiety.

I didn't realise prof nicolaides was doing it. I would be happier if someone like him were doing mine though I have no reason to doubt the consultant I am having - or not depending on what I decide.

I know an obstetrician and he told me that the miscarriage rates are based on information from a good few years ago when amnios were done without the scan due to the scanners being so big and unwieldy. He reckons the mc rate is probably less than 1%.

Still......it's scary. Good luck for next wednesday.

[saintlydamemrsturnip]

This research was published just over a year ago. It was fairly controversial at the time but does present I suppose the figures in a slightly different way (in terms of loss of non-affected children rather than detection of DS). I saw Nicolaides interviewed at the time and he said that the numbers bring lost were 'unacceptable' (or similar words) so I suppose the figures were broadly accurate.

If you are information seeking you could ask about having a more detailed scan. There are soft markers that can be checked out - and can give you further reassurance. Often they're not much use if someone is considering CVS as they need to be carried out at a later date in the pregnancy, but they could provide another option before moving onto amnio.

1 in 250 is pretty good odds. Your current odds for having an autistic child for example are 1 in 100 (ish). Slightly higher if you are carrying a boy. Not wanting to worry you about that, just presenting the information about DS in a slightly different context.

[Wiseoldelf]

I was given 1 in 35 when pregnant with DS. Coupled with only being 26 at the time I went ahead with the amnio.

I was absolutely terrified to tbh didn't really allow myself to think about what we would do if the resuls came back as a problem.
The clincher for me was there was no way I could continue without knowing if there was a problem. The 4 days between having the bloods back, having the amnio and getting the all clear passed in an absoulte fog to me. I don't know how long I could have taken not knowing if there was a problem.

I know my circumstances were different to you, but I was glad I had the amnio (but as I said, if the results had been different, I don't know what I would have done)

[pacinofan]

My odds were 1 in 1200 and I still had an amnio, primarily because I am a need to know type and the figures are merely a 'risk' assesment, nothing definite. We would have terminated a downs syndrome pregnancy, so for us the amnio was a clear decision, although not without a lot of heartache. DH's family were aghast we were having an amnio, and telling them was something we really regretted as it placed a lot of pressure on us. It's a really difficult time, and I wish you well with your amnio, hope all goes ok.

[fifitot]

Saintly - the link was helpful. I did have the soft markers checked at the NT scan - heart valves, nasal bone etc. All seemed fine.

Still undecided but everyone's post is useful and welcome. I am still dithering and change my mind hourly! What a dilemma.

[fifitot]

Spoke to ARC again today who were very helpful. They said 1 in 254 as a percentage is only 0.4% (I think- can't work it out!) which is a different way of looking at it.

Also made a suggestion that I could pay for a soft marker/anomaly scan at around 20 weeks. Anyone any experience of this - do they differ from the NHS anomaly scan, is it just more detailed?

[katiecubs]

Hi fifitot - correct me if i'm wrong but the risk of downs at age 40 is 1/100 so your scan has dropped your risk level significantly which is really positive!

Have you heard of the fetal medicine unit? It's run by a world expert called Professor Kypros Nicolaides - they do very detailed scans/tests which may be able to help you make a more informed decision.www.fetalmedicine.com/

I have to say with your risk taking into account your age i would be hesitant to have an Amnio and risk miscarrying a healthy baby. I think if it were me i would wait a bit longer and opt for further scans first.

Good luck with whatever you decide xxx

[fifitot]

Thanks Katie. I know about the FMF and indeed the clinic I went to here in the North is accredited by them. I am older than 40! So my risk is more than 1/100 but you make a good point!

I may wait until I can have an anomaly scan at around 20 wks before deciding on amnio though realise that is very late on in the pg. Just need to know if the private anomaly scans are more detailed than the ones the NHS give us.