Amnio for relatively low risk - don't do it!!

[EmmaKateWH]

I just thought I would post my experiences over the past week or so. My blood tests came back with what I was told was a "high" risk of downs and I was told by the fetal medicine midwife that my results were in the "worst possible 4%", e.g. 96% of people got better results than mine. This was a risk of 1 in 175 apparently. In the same phone call the fetal medicine midwife offered me an amnio for a couple of days later which I went and had.
I have now had the results back, and the baby does not have downs (not surprising given the 1 in 175 odds!), but the amnio and the few days after it were awful. They tell you the amnio feels the same as blood being taken - it doesn't, it feels like what it is which is a whopping big needle being rammed into your abdomen with no anaesthetic! After the amnio I had pain, and bleeding and we spent most of the weekend at hospital with DH and I terrified I was having a miscarriage. Bleeding has now stopped (fingers crossed, touch wood etc), but if I had the chance to do this over again there is no way I would have the amnio. If your odds are better than 1 in 50, I would not have the amnio. If I have another baby I am going to decline to even have the blood tests - at 28 my downs risk is low anyway, and I don't need the panic!

Ok Saggar, thank you for clarifying.

I don't advocate talking about DS in more negative terms than having an amnio.

I can't say that any more.

I do try to remain impartial and just give my opinion in terms of facts and not emotive language.

I hope I didn't hurt anyone's feelings with my previous post-I realise some women may have an amnio for conditions where the baby would not survive for long outside the womb,I was just reiterating what my (very very experienced and well thought of )consultant said when I asked about Amnio,having my first baby aged 40,and wondering if it was better to be prepared for conditions that might be diagnosable by Amnio. As his response was such a strong negative re amnio I didn't have one for that pregnancy or my subsequent one.My best friend has a child with a severe and undiagnosable in utero disability and that too has coloured my views.I think that for those women for whom a diagnosis of a condition like Downs would mean a termination then an amnio is probably worth the risk,but for those who would not choose to go down that route then it is too big a risk to take in my opinion, and the op is simply sharing her experience to try and help women in that situation.Of course this is emotive,but I do feel really sad about the attitudes towards disabilty and how that translates towards ante natal tests.

great post fabhead

Busierbee - really good to have a post from someone who had this test.

My issue with this thread is the idea that someone who posts about their own experience is being 'judgy'. If a woman posted 'epidural led to forceps delivery - don't do it!', no one would bat an eyelid.. okay, you'll say, that's more common than a painful amnio.. but what about 'epidural caused excruciating headache - don't do it'. Very, very rare.. but should anyone considering epidural not be aware of the risks?

The 'don't do it' is directly related to the OP's fear and pain in her own situation. It's really irrelevant that it's uncommon. I have my own thoughts about the disability issue but I don't think they even matter here... what matters is that people are pulling a post to shreds because it's not 'pc' enough for this subforum. That I continue to find very worrying.

There's no room for censorship. There are threads here for women post-termination etc where it would be inappropriate, but this subforum is - I say again - about choice.

Also note: the thread title does say amnio for low risk, so the point about more serious/life compromising disabilities than DS seems moot to me.

Also - I know a woman who has recently given birth to a baby with anencephaly at term. When she was making her very personal decision to carry her baby, would she have been unwelcome here? If she posted to say she had given birth to her baby would that have been deemed 'insensitive' to those who termiated for the same condition? Surely much more painful for those considering termination to read this, but valid, no?

1:300 or lower is considered high risk medically, the OP was 1:175. The facts on antenatal testing should be given without scaremongering, telling someone they shouldn't have an amnio unless their risks come out as less than 1:50 is arbitrary. It is a personal decision.

1 in 300 isn't necessarily the cut off. Depends what view your local PCT takes on whether you are 'screen neg' or positive. Depends on the centre who does the testing. 1 in 175 would have been considered low risk by our local scanning centre for example.

Well there is no real cut off - you could be told 1:2 but still decide not to have further testing. Or you could be told 1:3000 and still ask for an amnio/cvs - you would get one in my PCT (but not all I am sure). You could still go private. But the potential risks and possible discomforts of any invasive testing would be the same. Again, personal choice.

Completely agree with fabhead.

Strange OP

People have different perceptions of risk. 1/175, 1/1700 etc are just numbers. You can have a DS baby with either of them. If you don't want to bring a baby with genetic abnormalities into the world and would abort, have amnios. If not, don't. Blood test results are only indications of probability, not terribly meaningful.

I had amnios with 1/1750 and 1/250. Both were painful but neither left me terrified. Second time around, I had the amnio booked before the blood test results came in. The only thing that changed was that social security paid for the amnio because I was under cut-off point.

1/175 is high risk for a 28 yr old, by the way. I would think that for you it was a good call to have the amnio.

Fabhead: "Secondly, the assumption that people only have invasive testing to detect Downs - it also detects other conditions, some of which are incompatible with
life and some of which mean very short survival time after birth." Absolutely. But the problem is that when we talk about amnio, in general, it is talked about in terms of downs rather than any other disability. I suspect that the reason for that is that Downs is a more visible disability and people can identify with it more. It's not unusual to see children with downs out and about/in the shops/the park/perhaps even at school, or an adult with downs working in a local shop (there is a lady with downs who works in my local tesco). Whereas other chromosomal abnormalities such as edwards aren't commonly know because in general, babies with say, Edwards syndrome or some of the other chromosomal abnormalities that are detectable via amnio never make it out of the hospital, or they die so young that they were just babies, iyswim, so not as visible to someone who hasn't been through the personal experience - ie they don't know about it so it doesn't have to be mentioned.

Perhaps if we were more open about exactly what disabilities we're talking about other than downs then it wouldn't seem like just a test for the detection and iradication of downs (as opposed to anything else) by those who feel that downs isn't actually a disability to be all that scared of.

" Even for Downs testing, some people wouldn't terminate but would want to know early on
in the pregnancy so they had time to prepare and find out more information about the condition, meet Down's children etc." I think that's a noble sentiment, but sadly the reality is far from that. Fact is that 92% of pregnancies where downs is detected in utero are terminated. So while for some people amnio is about awareness and preparation, sadly that is a tiny, tiny minority, and the reality is that in general, testing is about detection and termination.

wannaBe Wed 05-May-10 15:39:53

"Are women really told that there's a greater risk of miscarrying a non disabled child than there is of being told their baby has downs after the amnio? I don't imagine so somehow."

I certainly wasn't. Midwife looked totally taken aback when I pointed out that given my stats I was far more likely to miscarry a non-Downs baby due to amnio than actually having a baby with Downs. Got the impression I had said something slightly shocking and totally irrelevant.

I don't think anyone should be made to have counselling before amnio: that to me smacks of anti-abortion.

But I do think statistics should be presented in a more straightforward manner.

And then midwives should just accept that women will draw different personal conclusions from this- to some dealing with a baby with Downs syndrome is a less bearable thought than possibly miscarrying a healthy baby, so that is a risk they will be prepared to take. Others won't. Midwives should be non-judgmental.

But not explaining what the risks involved actually are seems dishonest to me.

I guess everybody?s experience is different but the risks of having a CVS were made very clear to me when I had the procedure last year - and this was despite being given 1:2 chance of a chromosomal abnormality.

It was pretty clear from scans that my baby has a condition that meant she would not have survived so the risk was levels were somewhat unimportant to me ? it was about finding out what the problem was rather than hoping for a good result. However the 1-2% chance of miscarriage was still hammered home and I had to sign a consent form to that effect too.

Sad situation to be in really and I feel for any women who has to go through such a stressful worrying time

I signed a consent form, too.

Doesn't everybody?

I definitely did yes, and as I said the chances of miscarriage were told to me several times.

If you are told, as you always have to be legally, never mind that it is all over the literature, that the mc risk rate is 1%, then anyone that can do maths can work out that that anything more than 1:100 odds means statistically the chances of having a baby with a genetic abnormality is less than a mc. But as I have pointed out, for CVS at least, the mc statistic is very misleading as the background mc rate in ANY pg at 11-13 weeks is 1% as well.

IMO it is not "noble" to continue a pg where the baby has DS and it is not "ignoble" to terminate one. It is a question of personal choice and circumstances and nobody can really know what they would do until they are in that situation.

I sympathise with parents of DS children wanting the condition to be as normalised as possible, I really do and I think that is how it should be, but I find it odd that the same people who are seeking tolerance and understanding about DS are the ones on this board (not necessarily this thread) calling people "nuts" etc for having antenatal testing, never mind terminations.

I take the point about the literature often just mentioning Downs but anyone that has had an amnio/cvs knows it tests for other conditions too.

You make absolute sense fabhead.

mrsbean78, several people on the thread have said they have had the test, not just busierbee.

I completely agree that low risk is very subjective and no one but the person dealing with it can determine what is a reasonable risk for them. So 1/175 may be low or high to different people.

Amnio/cvs definitely do test for other "common" (as it was said to me conditions. Again "common" will just mean out of the percentage of conditions diagnosed via cvs/amnio.

And again as others have said and I myself found, there are a lot of syndromes/conditions that can't be tested for, or that happen at birth.

I can sympathise with the OP, an amnio is not a pleasent procedure, the waiting for results even worse and I can see the point she is trying to make which seems to be think carefully before going down the testing route.

I myself went down this route and my baby was diagnosed with DS at 16 weeks via amnio I too was 28. He is now 21 months old and yes tolerance and understanding of his condition are always at the forefront of my mind.

I don't however think that people who test for these conditions are nuts and a termination, whilst I find sad, is something that is a very personal choice. As others have said it was other conditions that scared me and a diagnosis of DS for us was almost a relief but that was us.

As long as up to date and accurate information about conditions is given at the time of invasive testing or diagnosise then the parents are in a better position to make an informed choice.
Unfortunatly this is not always the case you often hear of women feeling almost forced in to having invasive tests and terminations being booked at the same time as results are given without the parents say so and with no time to go away and think. Until this changes it may be that milder conditions such as DS will always be a genuine fear for many pregnant women and also society in general.

I was given no information about DS tbh - just more or less routinely booked in for an amnio by the hospital because of my age. I was told very bluntly that ' there is no point in doing bloods as your age puts you in high risk right away so we'll book you in for an amnio.'

If I hadn't had the nous to investigate private nuchal screening (which is not on offer here on NHS) or to read up on the whole genetic testing issue I would have gone straight to amnio. It may have been fine but if it hadn't and I had had a m/c I doubt very much I would have got pg again at my age.

I got alot of information from this section of mumsnet and tbh the OP wouldn't have offended or worried me when I was debating an amnio. I find her openess quite refreshing really!

^its not pushing views. So many threads are about termination after amnio or risking amnio when DS isn't such a big deal.
Once ina blue moon someone says 'disability isn't that awful you know' to try and present the other side and they get shouted down.
Surely people want to hear the other side? ^ this is so true - to the point that I no longer share my wonderful experience in raising a fabulous daughter with ds cause I am sick to death or being patronised with statements about how that is me and not that person or I am obviously a better person blah blah blah blah blah. So I actually now feel I can no longer post in this section and share the information and experiences I have had with my daughter who just happens to have down syndrome.

Eidsvold - I often wonder how parents of disabled children feel when they read some of the stuff about testing. You've answered my question.

A friend of mine had a nuclear fold test + bloods result was risk 1:2000.
baby was born with down syndrom, not picked up in any of the other scans...
she is an absolute delight and developmentally not far behind her peers.