Can I ask people's opinions on antenatal testing without it getting too sensitive / heated?

[FrannyandZooey]

You know when you need to decide if / what tests you are going to have at the scans and so on. Would people feel comfortable telling me about how they made a decision on this? I need to stew it over.

I don't think you're being naive, F&Z.

I think it depends on whether you would want to act on the results.

I'm also 36 and pregnant with no2. Decided not to have any tests for either of them as the results wouldn't have made any difference, and if the risks came back high I would just stress and worry through the rest of the pregnancy.

Emkana I think the experiences of parents like yourself are most useful to me. That is really helpful, thank you.

Misdee yes I can see why you decided that.

Oh yes, I can see how that could happen.

Mind you, and I really dont want to alarm or anything, but I have known of someone having the lowest risk rating for DS you could have, and still go on to have a baby with DS. It utterly shocked her because she thought she was relatively okay.

Is there a particular thing you are worried about Franny?

Do you know how you might feel with the results of these tests?

yes yes agree completely that our decision with ds2 wou;ld have been different than that when i was pg with ds1

we were making a decision for 3 the first time around, for 4 the second

Franny know how you feel as I've just turned 35 and I think risk has just jumped to something like 1 in 400 for Downs at 35 - it is something like 1 in 100 by time you get to 40 so goes up quite steeply year on year but I think that curve gets very steep after about 37.

FWIW I do want to know as I'd like to be prepared - I have already been through tx of one pregnancy after finding out there were abnormalities that were not compatible with life . So horrible as it is to go through tests/scans I would still rather know than not. But its really a highly personal thing

the other thing to say I was fortunate to have scan at FMC in London - I don't know if what they do is different there to other scans but they went through (both at nuchal and 20 weeks) quite a range of tests on scan (and blood test) that told a fair few things. I am not sure I'd be quite so bullish about tests if I hadn't had such a professional and sympathetic experience (if you can call finding out bad news that turned out to be 100% correct from scan to post mortem) from another source.

I had no tests. DH and I had decided that we would have the baby regardless, and I chose blissful ignorance rather than run the risk of getting told I had a high risk of - well, anything (I was 37 at the time) and then being depressed for my entire pregnancy. We figured that we would deal with any situations as they arose after DS was born.

My friend was told that she had a very low risk of Downs after her nuchal fold, and her DD was in fact born with Downs Syndrome. The baby has to have open heart surgery soon and one of the consultants she saw said "scans are rubbish, all pregnant women over 35 should have amnios as standard, then we wouldn't have to sort out these messes" (fucking bastard )

VVV no I don't have any specific worries. Except that I am being naive about the reality of living with a disabled child, when we say "oh no we would not terminate anyway."

I also agree the tests are not foolproof and have heard of cases where the mother was told to abort as the child could not possibly survive, she refused, and the child was born perfectly healthy, etc etc

i got pg at 35 and gave birth at 36. had triple test but was a month too young for nuchal scan. i was feebly clueless about the whole thing but with hindsight would have preferred to have had a nuchal just to know. triple test not very helpful as age factor skews it. i wouldn't do a cvs or amnio.

f&z i don't see how or why this pg should make any difference to your testing prefs, why not more comfortable with your choices? they seem based in sensibleland.

I had nuchal in first 2 pregnancies, triple in 3rd (at 33/34). I wasn't bothered about Down Syndrome, but I wanted to decrease the risk of anencephaly. I would have terminated for anencephaly. Had potential problems been picked up I would have probably requested more detailed scanning (to try and prepare). I knew that ds3 was at high risk of being severely disabled, I knew there was no test for it, and I knew that I wouldn't be able to be certain he was in the clear for approx 2 years after birth so there really didn't seem to be much point fussing about conditions that were compatible with life (terminating a baby with DS for example might have meant going onto have a child with a more severe problem).

Aged 36 your risk isn't that much higher than at 35. It's just that the rate of % of babies born with DS at 36 starts to increase after 35 - so the risk increases more rapidly with each year than before 35. It doesn't make much difference to a 36 year old but it does if you're 40+ iyswim. Hard to explain without a graph to point at.

I remember getting all het up about this when preg with dd. but I decided to have all the major non-intrusive tests, and then make a decision about amnio based on the results of those. I probably would have refused amnio unless the risk was quite high. I don't know whether I'd have terminated or not: I don't think you ever really know that unless you're in that situation.

I wasn't over 35 btw. but I don't think I'd have done anything differently if I had been.

I'm also in Germany and I've opted for absolutely no tests, I've even rigorously policed the blood tests. Apart from certain bloods, all I will have is a 20 week anomaly scan. I'm 40, I am well aware of the risks of problems, but for me the chances that everything will be okay still far outweigh the possibility that they won't be. If the anomaly scan shows a baby with serious physical problems, I will consider my position (unlikely as at 17 weeks I can already feel it kicking )

Tests would be too stressful for me as would potentially difficult results.

Agree with Emkana about there being so much they cannot test for. Hold that thought.

Franny. With my first 3 children i did not test but was 20;s.I do remember asking but the consultant when pg with dc3 (28) he said 'would you terminate?' I said "no" he said - dont bother then'...truly the conversation was that.

4th time i was 35 and did do nuchal and bloods 'admark' i think they call it very accurate.this time i was more worried about the effect a baby with special needs would have on my family.My results always seem very low for Downs syndrome i think in the early 20,000 for last 2 babies.
5th time i again did nuchal - and whilst i was very relieved at the results (low probability again) i would definitely not have terminated for downs syndrome. I am older - maybe wiser - but certainly more philosophical. I want to know ....but am not sure why. Cross the bridge when and if is my feeling...
a lot of folk say you need to weigh up what you would do ..but really you only need to do that before considering an invasive or potentially risky procedure.The nuchal is more of a guideline imo..

also i'm bumping because i could swear there was a thread on here once with some of the more knowledgeable MNers about how some forms of Down's are 'mosaic' and could actually escape detection on some amnios depending on how the test is performed.

f&z, my mum was told to terminate my sister (lisad123 on here) as they were insistant she had spina bifita(sp??). my mum refused. lisad123 perfectly ok.

Oh dear, some cross posting there, some rather unfortunate on my part

sorry, this is a difficult subject and I really appreciate all the posts very much indeed.

Poppy thank you for those figures and I am very sorry to hear that you needed to have a termination. Glad that you were treated well and professionally.

yes, emkana!

thank you for reminding us about your experiences.

Many more posts, thank you all

I think I am happy with my choice to not have any tests

I just wanted to check this was not ridiculously naive decision, and also just to talk it through because, as I said, it surprised me that I feel the same way now we have ds - I thought I would feel differently now there are 3 of us as you put it Tutter.

yeah that's what swayed it for me franke. Aged 28 I had a 'perfect' (he still is to us, but in anyone's terms) baby. Now he's 8 I have a child who is far harder work that any child with DS that I have every met (I haven't met them all!, I only mention DS as that's the main test) and who is unlikely to do anywhere near as well as the son (with DS) of the person I sit opposite at work. There's no test for my son's condition. And if there was it wouldn't tell me much. Even coming back with a positive doesn't tell you that much- as most conditions encompass a wide range of severity with no way of saying where a particular child would fall.

As a friend said to me 'it makes life interesting'.

I think you also have to ask whether you could go through a termination. I knew I couldn't unless the condition was incompatible with life. Thought it would screw me up much more than a disabled child.

franke is right - whilst we get worried being older mums , there are still very good odds that things are going to be ok (I hold onto this thought). And I'm sure the list of things that can be life altering and you can't test for is far longer than the one you can test for.

Franny, you seem very capable and level headed. Your DS is also school age. He seems like a lovely, bright boy and I am sure he would cope just fine with a sibling who was somewhat more demanding. So even if the worst case scenario played out - you'd be just fine.

I think you wouldnt notice the difference in difficulties between going from one child to two, than going from one child to two with the second one requiring 'more' from you.

mosaic I think can give a confused result with cvs, but a clear one with amnio. Although a mosaic result is a bit of a nightmare as the indvidual is likely to only be affected mildly. But of course you don't know how mild is mild.

we decided that we would have the triple blood test and pay for a nuchal scan. I was only 30 when pg with DS1 but have a cousin with downs syndrome and felt that if we were carrying a child with disabilities that we should be as prepared as possible and find out as much information as possible.
The results to these tests (aside from the amnio) aren't always certain but they are an indication.
The thing I find with all these things is that it is a totally personal decision you have to do what you are comfortable with.

my MIL had an amnio with DH, but now says she regretted it.

she almost miscarried him afterwards and he was born at 35 weeks.

it is a very low miscarriage risk, but i suppose if it's not 0 someone somewhere down the line will have problems afterwards.