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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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Original poster

should I have an amnio?

28 replies

allyco · 10/10/2005 15:17

anyone got experience of having/deciding not to have an amnio? I had a nuchal translucency can on Friday which came up screen positive and have been told the only sure-fire way to known for sure about Down's is to have an amnio.

Trouble is, I am SCARED. I have previously had miscarriages and can hardly comprehend I might do something which might cause one. On the other hand, I'm not sure I can manage the next 25 weeks worrying that there might be something wrong, there might not, etc. etc.

Help and advice, please?

OP posts:

Fangache · 10/10/2005 15:18

I refused all of those tests as I knew I wouldn't do anything with the information.... I mean I wouldn't have terminated so I just didn't want to risk miscarrying. Only you can decide what is best. Good luck.

ks · 10/10/2005 15:20

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Message withdrawn

madmarchscare · 10/10/2005 15:20

Just my opinion, but if the result wouldnt make a difference to the choices you could still make then dont have it.

Would a later scan be more conclusive so that yo wouldnt be wondering all the way to the end?

supersonic · 10/10/2005 15:23

allyco - I have no advice to give unfortunately but understand it is a diff. decision to make I am going for my nucal scan on 28/10 as I suffered a miscarriage previously and I would also be worried and scared about what to do and still me and DP haven't decided what we will do - whatever you choose to do will be the right choice for you! really sorry I can't be more help!

aloha · 10/10/2005 15:26

what was your risk faxctor after the nuchal fold test? YOu could have a cvs right away if you want. If I had a high risk factor I would personally want to know, but as others say, what would you do with the information?

ThomBat · 10/10/2005 15:29

Well if you wouldn't terminate and are scared to miscarry having an amnio I would say, based on those facts, that it sounds like you're best to opt out of having an amnio, maybe??? only you can really know how you feel and make that decision babes. I will just add that an amnio will rule out DS sure but will it stop you worrying about everything altogether?

I have a little girl with Down's syndrome and was so glad that I didn't have any tests the 1st time and that I have her in my life.
With my 2nd & current pregnancy we were put as high risk and given the impression that something was wrong with words like 'it doesn't look good'. i didn't want to know but my partner did so we carried on with tests and i ended up having a CVS, somnething I still can't get my head round but it happened. Anyway, we have ruled out Down's syndrome and other chromosome abnormailities. hasn't stopped me worrying though, there are no guarantess that this baby would have autism, or other soecial needs not picked up by a CVS, or an amnio.

You hve to follow your heart on this one and do what is right for you.

if you have any worries / questions about Down's syndrome then feel free to ask if it will help you reach a decision you feel good with.

TC x

Original poster

allyco · 10/10/2005 15:29

the risk was 1:195 (which is not high high I know, but still came out screen positive) The Nt apeared fine and they said it's prob my great age leading to the increase (am 41.)
DH says if anything really wrong then his feeling would be to terminate. I am more of the opinion that if anything really wrong then at least we could prepare for what was to come, ie with a possible special needs babe.

Sometimes I think the old days were best. When I had my first two there was no such thing as a nuchal translucency scan, so I didn't worry !!! lrsttsat,

OP posts:

LadyMarinaofSarfLondon · 10/10/2005 15:33

If you decide against any invasive screening, allyco, further scans by specialists (looking for one or more "soft markers" that could indicate Down's Syndrome) could help you prepare for the birth.
I am so sorry you have this worry after your nuchal scan - how "positive" is "positive" though? Was it properly explained to you that the nuchal is only an indicative test and that plenty of babies with a larger than average fold do not have DS or any other chromosomal disorder? It must have been quite a shock, but I think you should be able to speak to someone at the hospital again before you are steered towards invasive testing.
I was 40 when dd was born and chose not to have invasive testing on the basis of a reasonably good but not stunning nuchal result and the promise of detailed scans post 20 weeks. I made this choice because 1) We had a previous unexplained stillbirth 2) We already knew a DS diagnosis would not be a termination issue 3) As it happened, I know of three women who lost babies post amnio
Very best of luck whatever you decide, allyco

LadyMarinaofSarfLondon · 10/10/2005 15:35

Cross-posted. My result was only marginally better than yours allyco. I am sorry your dh is currently not of the same view as you on what you should do next.

ks · 10/10/2005 15:37

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GhostofNatt · 10/10/2005 15:46

I had quite a similar result, allyco, and went to have a further scan at the Fetal Medicine Centre (cost £130) where they do the blood test and look for a nasal bone at the same time - thsi got me to over 1/500 which was good enough for me to stop even mulling over invasive tests. It really was money incredibly well spent as far as I was concerned...

Blu · 10/10/2005 15:48

Allyco - I was in your position - I can't remember the stastical risk they gave me, but there were two 'soft markers' (echogenic locii and talipses, or club foot), and, like you, I would have been, on balnace I think, anti-termination whilst DP was very unprepared to have a DS baby.
We had amnio - mostly because they said the soft-markers could be for a range of other trisomy, non-viable trisomies etc - but also because I was a bit unsure, and simply wanted to know.

As far as I can see, in your case the statistical risks of an amnio are roughly the same as your chance of having a DS baby. Unless there was mention of other soft markers, a one in nearly 200 chance that the baby would have DS sounds like long odds, to me, and I probably wouldn't have the amnio. But that's me.

I found the whole thing v upsetting at 20 weeks (which is when they found the soft markers) and vowed that were I to be pregnant again I would do CVS at 12 weeks - at my age a nuchal scan wouyld always come up with a worrying statistic, i think.

Is it just the calculation of your age, or is it the thickness? Can you ask them what the thickness alone suggests?

ThomBat · 10/10/2005 15:49

thta's where I went the Fetal Medicine Centre is in Harley Street and was brilliant, very, very quick and where they tested for the nasal bone as well as nuchal and bloods. It was where I was told it didn't look good though and given the fear, but turns out no chromosome abnormalities with this baby.

Blu · 10/10/2005 15:51

We were at the Harris Birthright Trust feotal medecine centre in Kings - where the amnio risks are low. As ks says, the individual experience of the person who does it counts for a lot - as does the quality of scanning while they do it. A lot of older statistics about amnio risks are based on old-fashioned scanning, I think.

catj · 10/10/2005 16:51

I had a NT scan about 4 weeks ago & it gave me a risk of 1:14. (I am 35:-34 when I conceived). For us personally an invasive test is not an option as it will not change our minds. Of course it still put us in turmoil as it had never really crossed our minds as we have 3 other children. The information is now "filed away" in my head to be dealt with if neccesary. Only you can decide what is right but it did help me to post on here at the time- thank you yo Thomcat etc

ThomBat · 10/10/2005 17:02

How's it going catj?

aloha · 10/10/2005 17:44

Bear in mind that one in 195 is equivalent to about one in 400 at term as so many babies with the DS gene spontaneously miscarry. Did they see a nose bone? That is a very good sign. At your age (I had my dd at 41 too) the results of a nuchal will never be very low. My dd's actual fold was very slim and the vast, vast majority of babies born with DS have a nuchal of over 3mm, and 70% don't have a nasal bone at this stage. I found those two stats helpful in making the decision not to have invasive testing. I think my own risk at 40 (when I had the test) was about one in 300 or something, had it been one in 50 or so I would have had CVS the next day, but even though prior to getting pregnant I said I would definitely had CVS, after seeing our daughter on screen and discovering she was a little girl, it all seemed so real so I did research instead and decided not to have the invasive tests because of the m/c risk. I had a phenomenally detailed scan at 20 weeks which reduced my risk much further as there were no other markers such as heart defects etc.
But the decision has to be yours. It's so hard, isn't it?

laligo · 10/10/2005 17:58

allyco, we were given a risk of 1:187 for downs, as a result of the triple test. i was recommended and i would even say pressurized to have an amnio, but didn't want one - firstly because it didn't seem like a high risk to me (despite being labelled "high risk"), and secondly because i couldn't bear the thought of losing the baby because of an amnio. instead i read up on downs and prepared myself - which i guess i should have done anyway!

at the birth i asked the midwife if ds had any signs of downs and he didn't and does not have it, though totally honestly at that point i didn't mind one way or the other - i was prepared to accept him whoever he was and that was a lovely feeling - for which i'm ctually grateful the whole risk issue came up.

catj · 10/10/2005 19:24

Aloha that's helped me as the measurement was 3.1 (so I guess that's only just over) and the sonographer did point out the nasal bone. I'm just preparing myself for the 20 week scan but everything else seems to be going fine. My hormones seem to have settled down thankfully!

swizzles · 10/10/2005 20:21

I was told I had a 1 in 200 chance of baby having edward's syndrome and offered amnio. The chance of miscarriage following amnio was also 1 in 200.

If the odds hadn't been equal I might have decided to have the amnio.

If the odds had been equal and the potential had been for Down's Syndrome, I'd have had the amnio.

Baby was fine - glad I decided against it

3PRINCESSES · 10/10/2005 20:38

I had an amnio with my 3rd, unplanned, shock pregnancy because I had a high double test result and as we were having a hard time getting our heads around the idea of a 3rd I wanted to know...

The amnio was HORRIBLE. I'd been warned it wasn't pleasant but hadn't expected it to be so brutal. The consultant drew the massive syringe out afterwards and it was filled with blood, and he said 'Oh dear, that's rather a lot of blood. I had someone else last week who bled more than that... she did miscarry though'.

On a positive note it was one of the first things that made me realise I did really, really, really want the baby, no matter what.

Don't want to scare and confuse you even more, but wanted to tell you my experience of the procedure. Sorry you're having to go through this. xx

aloha · 10/10/2005 20:40

I admit I was still a bit worried right up until the day she was born. It is a very, very hard decision.

tessasmum · 10/10/2005 22:56

With DD we didn't find out I was pregnant till 15 weeks (don't ask!!) Because of my age, 40, I was given triple test almost without telling me what it was for and really pressured to have an amnio. Refused amnio at that point but was told I would change my mind when the tripple test results came back as it would be high risk because of my age. Was able to do a great "Yaa boo sucks" to grotty registrar when I came back as low risk!!

This time, at 43, I refused all tests and have had a brilliant and supportive consultant.
Life is a lottery and there are so many things that an amnio can't tell you as already mentioned on here. It is however a very personal choice.
I do still worry but that's part of being a mum isn't it? At least in about 4 weeks I can stop worrying about all the things that might go wrong whilst this baby is inside and really start to concentrate on the scary real outside world worries!

FauxVampire · 10/10/2005 23:03

Just to balance 3PRINCESSES, I had amnios with both mine, and found them very simple, painless procedures. I did make sure I had very experienced people doing them - I agree with posts saying make sure of that. I was told that if the consultant had done over 100 amnios, the risk was negligible: I was confident that I was unlikely to miscarry. I did find they diminished my worries.

milward · 10/10/2005 23:04

had a cvs & amnio with dd3. Awful time. she was fine.
I refused an amnio with ds4 after high risk from nuchal test & triple test. I wouldn't have terminated & didn't want to risk a miscarriage. Went against what my doc was telling me to do. Worried especially at end of preg. when ds was born didn't look for any signs of abnormality - just so happy to be with him. that was my first reaction. He doesn't have any of the problems we were told he could have.

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