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!

For the first time since well, forever I disagree with wannabe

I had an amnio because I was 38. I'd had no prior odds given to me about the risk of Downs or other genetic problems, and would in all probability (but I don't know, because it didn't happen) not have contemplated tx had the results come back indicating some "problem".

My reasons for having the amnio were to know. So that I could prepare myself if necessary. I don't do "patient" or "wait and see". Even had the results come back indicating a problem, I would still have been more at peace than going through the next 4 months not knowing, but worrying.

I had cramps, contractions and a spot of bleeding 3 days later. I was shit scared I was losing the baby. I'd still have another amnio tomorrow.

I had an amnio 13 years ago and it certainly wasn't like having a big needles stabbed into. Yes it was a big needle but it didn't hurt.
The OP could just be a drama queen, we don't know her in RL

My odds were 1 in 60 and the point of having it was so that we could prepare ourselves, not to have an abortion if she did turn out to have Downs

I have issues with the way the OP is worded.

A title such as "my experiences of an amnio" could have sufficed to be honest.

The OP's experience is by no means universal. I have had 2 amnios. Neither was painful in any way, the consultant performing the amnios had a miscarriage rate of 1 in 500.

Over all I found having my amnios a painless and ultimately reassuring experience, as I knew that my dcs did not have DS and it was something I had been worrying myself sick over , given my very high risk derived from the bloods/nuchal.

Having said that I I would neber post a thread which said "amnios are fab and painless - just have one". That would be ridiculous - just like the title of this thread

Well the nuchal scan and the blood tests if performed by an accredited sonographer IS quite accurate (up to 90%) but seems to be that what the NHS offer which can be a rag tag of tests isn't that helpful and that is what scares women.

I don't think the OP is being harsh. It's just her experience. TBH I am often shocked at the ease with which people seek an amnio. I grappled with this myself and it found it very difficult. Other women I know just took it as simply as any other blood test.

I think part of the problem as others point out is that people are so terrified of disability, it makes uncomfortable reading for others. I was probably guilty of this myself (despite having severe CP in my family in the past.) Also not sure if enough thought is given to actually what someone will do if the amnio comes back positive for Downs or another Trisomy.

It's a difficult area. When I was researching it all for me I found a great site which is American. it has a series of articles and a forum. There was some good stuff on there. The doctor on the site always seemed to be erring on the side of caution re amnio and reading everything there helped me make a decision.

Finally - I hate the fact that you can't post an opinion on mumsnet without being called 'judgy'! I had never heard of the word before coming on here!

So say you had to have counselling (as we had to) before you went ahead with an amnio, would that be better?

Or rather more acceptable to actually have an amnio...

I think it was irresponsible of the OPs midwife to say she was 'highrisk'. Her odds would put her outside of that category in some PCTs.

I think it's disgraceful that people are suggesting that the thread title is 'judgy'. It's not. The OP had an experience she found clearly traumatising and her sincere advice was to other pregnant people in the same situation hoping that her experience would help them.

All this pussyfooting about helps no one. If you thought the thread title was judgy well then.. don't click on the thread!

So do you mean that different areas have different risk percentages? Ok, that should definitely be uniform surely?

I had an amnio with ds because my results came back as high risk. Dh and I agonised about whether I should have it or not but in the end as someone else said we had to know one way or the other.

I do agree with the OP though in that it was a thoroughly unpleasant experience and I have never had pain quite like it before during the procedure. It was made worse by the fact that the staff had made me an appointment in a written diary but forgot to transfer it on to their computer system, therefore I turned up and they weren't expecting me. I had to wait 3 hours to be seen.

Yes different areas do have different risk cut offs and in some areas you don't get told your risk factor, only if you are 'screen positive' or negative.

Some PCTs do a nuchal scan, some don't. Some do it without combining it with the blood tests. Some have taken on board the rafts of research into this area to offer a good service, others haven't and women have to pay to have a really good NT screen using the latest research. It's a bit of a mess as far as I can see.

I was booked in for an Amnio with very little input from either a midwife or doctor - simply because of my age. You wonder how many other women are in that situation but then don't have the time or the knowledge to go on to investigate the facts.

But the OP experience is not a normal experience, it needs balancing with other people's positive experiences.

I know women who have had bad experiences of amnio. Maybe they don't post them? I don't think there is anything wrong with offering a different perspective.

Most of the stories on this board turn out well but we can't pretend they all do.

I thought this area was set up so that woman who wanted to talk about testing without prejudice could do so?

This thread is very judgy IMO, particularly the subsequent posts about disability and parents who want a perfect baby.

I am pregnant after IVF and considering my options RE testing, particularly for downs and this thread pisses me off a great deal.

I still can't shake my original feeling that this thread (or the title at least) is very inapproprate.

i

But why, DuelingFanjo?

I understand perhaps that you might not like the bit about the 'perfect baby', fair enough.. but I really don't see how the OP was 'judgy'. She seemed in shock to me.. she did something and it worked out but it terrified her and worried her and she wants to share that.

I don't particularly understand the purpose of a section of the forum where people can only post happy happy, nicey nicey outcomes from antenatal choices/outcomes. There are very many threads here that show that you can have a outcome you are happy with from undertaking an antenatal test, but of course there are risks and some people do find amnio difficult and disturbing.

If you are considering your options, you should not simply be considering best case scenarios. Balance is a good thing, no?

She had a bad experience, she posted it. Where is the problem? She isn't judging anyone, just giving her view.

99% of threads on here don't give such strong views but tbh it's refreshing to see that someone can be honest enough to admit that amnio isn't always a walk in the park. I think some women might benefit from hearing that because mostly you hear that 'it's nothing' - when there is alot more to it.

When I was considering amnio I don't think it would have upset me at all, I would have seen it as one woman's experience.

Bucharest I think though that to an extent having a planned amnio due to circs such as age for instance is slightly different because you have time to think about the procedure, and if you are having a routine amnio (as most women over 35 are offered routine amnio) it's essentially just another test.

I think in those circs people generally don't actually consider that the result might come back as positive for any kind of abnormality - as humans we generally seem to err on the side of optimism and have a "it won't happen to me" attitude. I know that when I for instance went for my 20 week scan it never occurred to me that there could potentially be anything wrong - I just saw it as an opportunity to see that the baby was actually there (I'd had recurring dreams that they told me my pregnancy was all a lie ) and for my dh to see the baby.

The issue arises when a test, ie nuchal/tripple test comes back with a "high risk" result and you are then thrown on to this rollercoster of not knowing whether your baby is going to have a disability/whether you feel you can cope/whether you will end up terminating your pregnancy. And if information you're given is not positive, you're already in a difficult place emotionally and so it can be hard to take a step back and look at all the facts objectively, especially when you don't have much time to weigh up the possibilities/come to terms with everything you're having to go through.

Obviously for some people they do just have the tests to find out one way or another, but let's be honest - for the majority testing is all about terminating. 92% of pregnancies where downs is detected are terminated. I wonder how many of those people are pressured into having terminations by less-than-understanding consultants.

I understand that for some disabilities termination is seen as the only option. I would have terminated for anencephaly for instance. But we do need to get past this mindset that

A, finding out your baby is disabled should automatically mean termination.

B, That having a clear amnio does not equal having a non disabled baby.

But I went into another specialized area (for example special needs) and said "don't do it" my experience was horrific etc etc, I would be shot down in flames - look at Julia Hollander.

Please note that this is only an example and I don't really feel this. (almost feel as if I am betraying my DD writing that)

There is a way of letting your experience be known without being as inflammatory as the op.

She has not posted it as one woman's experience, she has posted a warning against having an amnio and that is unfair to those people who have decided to have one where the risk of abnormality is high.

I would feel the same about someone posting advisng women not to have an HSG just because their experience was bad. I had an HSG which was straightforward and not painful. I wouldn't have appreciated someone posting a thread telling me not to have one because they found it painful.

As I said, those posting RE perfect babies and in opposition to those who would choose to terminate a pregnancy where the foetus has a disability is - while not at all unexpected - not in the spirit of why this part of the forum was created.

And again, some sort of counselling would obviously be positive in the NHS.

Completely agree with DF

"But if I went into another specialized area (for example special needs) and said "don't do it" my experience was horrific etc etc, I would be shot down in flames "

THIS ^

exactly my view on things. Fine, the OP was badly worded and perhaps could be changed but PLEASE can some posters not use that as an opportunity to come into this area and start banging on in a judgemental way about the choices other people make about continuing or not continuing a pregnancy where a disability is a high or definite outcome.

It's not helpful and it's not what this area of mumsnet was set up for.