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!

Yes - someone will always be the one I guess.

fifitot - actually I am so sad that children with ds are seen as problems or poor children or too much trouble to have cause we have other children to consider etc etc. I have a child with down syndrome who is brilliant. The most shit we encounter comes from others ppl's ignorance and their attitude rather than her supposed limitations.

I am sad that there are actually ppl in this world who believe my daughter does not have the right to live - that we her parents should have terminated the pregnancy - and yes I have been told that. I am also so fed up with being told how I am so special etc etc etc. Nope just a mum who struggles to be the best mum I can be to three fabulous daughters. A mum who knows that my children are able to each reach wonderful goals and aspirations and the only things holding them back is other ppl's limitations and low expectations.

I am so fed up with being asked if I knew before she was born if she would have down syndrome - why? what does it matter - she is here on this earth with the same dreams and aspirations, the same fears and hurts, the same red blood beating in her veins. She is not a poor thing to be pitied or patronised but a young lady with unlimited potential to be whatever she wants to be.

And NO - I do not live in la la land. I am well aware my child has an intellectual impairment and some developmental delay but who I am to judge her worth and purpose upon this planet - or in fact the worth and purpose of anyone so that I may say - nope sorry you have (insert whatever here) and so your worth and potential is less than someone elses.

Glad you asked now Nowadays I just avoid it.

Eidsvold - good to hear what you say. It does bother me how the whole testing debate feeds into people's prejudices. Believe me I have had to acknowledge my own.

My brother was born with severe cerebral palsy, albeit back in the 1970s, but there was no way that could have been forseen or tested for, even now.

Hello ladies. I just wanted to add a little here as someone who thought very hard and then terminated a pregnancy when a CVS diagnosed Down Syndrome. This has nothing at all to do with any prejudices, and I was actually really pleased to find helpful advice showing the positive sides (and photos) of having children with Down Syndrome from Eidsvold and others. It was important for me to find out as much as I could and then I made my decision based on that.

Eidsvold's daughter sounds lovely, and its great that she seems to be at the milder end of the Down's spectrum. However, not all children are so lucky - the harsher end of the spectrum includes very severe retardation (IQ

Littlepoot, thank you so much. You put into words what I have wanted to say, but haven't as I have been too afraid that I may word it in a way that may be hurtful to parents of children with Down syndrome. As someone who has also terminated a pregnancy following a diagnosis of DS, my decision does not mean in any way that I think people with DS have any less right to be here. I too researched, spoke to parents of children with DS and the DS association before making a decision - it wasn't made lightly. It was more being scared of what the diagnosis may mean that eventually swayed my decision. I know this is negative thinking, but that's just me. I fully understand how people would choose to continue a pregnancy following diagnosis of DS. I personally think people with DS have much to contribute to our world, however much this may sound hypocritical, and am glad there are parents that choose this path. I chose a different one.
Of course if any of my children had been born with DS or any other condition I would have loved them and been their champion throughout life - hopefully though it would not make me judge others that made a choice when there was one to make.

Although I know this actual topic is not what the original thread was all about, I'm glad it has given a chance for people to express their points of view, which I think, should all be respected.

I don't mean to be rude but just because that was your experience Emma doesn't mean it is going to be the same for everyone else. These test provide vital information for parents going through what is an extremely trying time. Everyone's experience is different, just because yours wasn't the best, doesn't mean others should not get it done, the same could be said for anything.

I have to say my amnio experience was very different, I was given a 1:86 chance that our child had downs and I had the amnio done. The doctor gave me a local anaesthetic and it was virtually painless when he put the needle in, the drawing of the amnio fluid was nothing, not to mention I felt fine afterwards. I'm glad I had it done, it put my and my husbands minds at ease, rather than phrase it as "don't get it done", it should have been "what has your amnio experience been?"

It's good to see the converse side of all the positive approach to testing though - that's my opinion I'm afraid.

All I ever see on these boards is about how amnio and cvs is 'nothing', 'doesn't hurt' etc. Well actually it isn't nothing for lots of women, who lose healthy babies and I think it's fair to present a realistic picture.

See www.guardian.co.uk/society/2009/may/16/health-nhs

www.heraldscotland.com/call-for-new-down-s-syndrome-test-after-healthy-babies-miscarry-1.889757

The picture is never that simple and I am pleased the OP gave a different view for a change. No offence to anyone but I just feel very strongly about the crapness of the testing system in most of the UK.

Whilst I understand Fifitot's passion based upon very real experience, I also note (in the hope of painting a realistic picture) that the linked articles contain inaccuracies which may mislead. Of course, my best wishes to the OP after everything she's been through. It's certainly not easy.

news.bbc.co.uk/2/hi/health/7620742.stm

This is the same article on the BBC website featuring my daughter who was 1 at the time. She is now a very active and wonderful almost 8yo.

What inaccuracies - would be interested to know.

BTW eidsvold - have seen that picture before, she's gorgeous.

I had an amnio when I was pregnant with ds1. The risk of him having Downs was about the same as the risk of miscarriage from the amnio. I decided to have the amnio as I couldn't bear the thought of going through the rest of my pregnancy wondering if he had Downs & didn't want the first thing on my mind on giving birth to be whether he had Downs or not. I think I would have had him regardless of whether he had Downs or not although obv I can't know that for sure. The risk with an amnio also depends very much on the practitioner. Mine was carried out by someone very experienced which reduces the risk of miscarriage significantly. I didn't find it painful although it is a very odd sensation & I wouldn't advise anyone to look at the needle like I did. Spent the rest of the day relaxing & was rewarded with my first big kick the next morning which made me cry with relief. The 3 week wait for the results was absolutely horrendous. I decided with ds2 not to have the triple test & was lucky enough to be living in an area where I was sent for a detailed scan (nuchal fold among other things) once I explained the situation with my first pregnancy.

Regardless of the rights and wrongs of amnio / CVS testing, I just wanted to say that when I had my CVS test it was relatively painless, I've no idea how big the needle was as I didn't look, and I had minimal discomfort afterwards. It was one of the hardest decisions I've ever had to make and I don't envy anyone in a simlar position.

From my point of view of just starting to look at all the pros and cons, I'd like to say thank you to the OP for posting about a bad experience.

It's useful info and I never would've assumed from the title that it was anything but a personal opinion based on personal experience. It won't even mean much to me against the evidence based info for and against amnio, but at least I know that if I did go for it, it might be painful and lead to bleeding afterwards - 2 things that haven't really been talked about in the info I've read!

"I am sad that there are actually ppl in this world who believe my daughter does not have the right to live"

eidsvold - I am shocked that you have been told that, that people have come up to you and used the words 'your daughter does not have the right to live' There are some really horrible people out there if that is truly the case.

However most people who would make a personal decision to terminate their own pregnancy because of something like Downs Syndrome are NOT making a judgement about those people who decide to continue the pregnancy. It's a personal choice and as much as I would not expect another parent to judge me for terminating such a pregnancy, there is no way I would ever judge someone else for not doing so.

Good to see the opinion expressed that an amnio is a very big deal and potentially unplesant. We decided not to take part in any screening for DS at all, as we felt the likelihood of miscarriage from an amnio was possibly higher than our chances having a DS baby and that didn't make statistical sense. So we figured we'd save ourselves the potential heart ache and just not test at all. The midwife was very supportive of our decision once I'd explained, but I felt like we were going against the run of what what expected.

I expect to love my baby, whatever its abilities or limitations. I don't take it as a given (although most it is most likely) that my baby will be healthy. Riven, I was really interested to see your stat about 1 in 7 babies having some sort of 'disability'. I think it is important that, whilst hoping for and expecting a healthy baby, expectant Mums do know that there is a possibility that their baby may have a problem and be prepared to deal with that.

I had an amnio yesterday for a risk of in 1/187 (similar to the OP). I decided to go ahead because I didn't want to spend the next 23 weeks of my pregancy worrying about the baby. (And being 39, and this is my first DC, I want to be prepared, that's all)

I had read this thread about a week ago and then stayed away from these threads, as I personally found them a bit offputting.
(I guess for the same reason I haven't read any childbirth threads, each person's experience is different.)

For the record, the actual procedure was okay. Not pleasant, but so quick, including the anaesthetic - 2 minutes; I just took a few deep breaths, and shut my eyes as I am not keen on needles, even for blood tests.

I would say that anyone considering an amnio, should not really factor the details of the actual procedure into their decision making - compared to delivering a baby, I would say it is a very minor procedure. Just consider the risk factors, (risk of Downs/ other conditions / miscarriage rate) based on your own personal circumstances and then make your decision based on that.