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!

Seriously, I think you are over analysing the choice of words here. I think the 'don't do it' is in relation to her own shock that (for her) an experience she expected to be straightforward was more traumatic than she had expected.

As before, I understand why you might feel uncomfortable with the posts re: disability. I don't feel that your anger with that needs to be transferred to the OP who I think is speaking totally gutturally out of her own experience.

KA, I don't know who Julia Hollander is. I don't agree, however, with you equating this subforum with, say, special needs. This subforum is 'antenatal tests and choices'. I'd imagine that choice to include thinking about the disability angle for many women. If it wasn't a consideration, why would this forum exist? I don't know that it's necessarily supportive of women who are undecided to shoot down one negative report of a procedure (however much you might feel that this personal experience is not representative).

Just want to point out that I am not angry at the OP. and Congratulations on your pregnancy and hope you are recovering OK from the Amnio. It doesn't sound like it was very nice

"But the OP experience is not a normal experience, it needs balancing with other people's positive experiences." Isn't it? Approx one in 100 amnios result in a miscarriage. Now that is a small minority, but unless your downs risk is less than one in 100 it is actually a fact that you are more likely to have a miscarriage than a baby with downs. And yet it's seemingly not acceptable to talk about that.

If someone posted on here that they were having an amnio they would be reassured, of course they would, but if someone dared point out the very real risk of miscarriage they would be shot down for that.

You can't tell me that this op is the only person on mn who has had a negative amnio experience - and she didn't even have a mc.

I would bet money that there are posters on mn who have had mc as result of amnio, and other posters who have had bad amnio experiences, but who don't dare post about them because the amnio is all about the disability.

DF, I get it now. Just wanted to stand up for the OP because I really don't think she meant to be insensitive in her wording.

Wannabe, I have never said that the op could not post their experience - of course they have a right to do that. It's just a case of being more sensitive.

If it hurt it hurt - no need for the description used and even if it did end in miscarriage then come and say so, I have no problem with that.

It was just really the title - even if TMI was used it would have been better.

Yes congratulations on your pregnancy and I wish you all the best in whatever you decide.

I'm sorry that was lost sight of.

WOW! I am amazed at how cross people get about some things!! As I said at the outset of my post, I just wanted to share my experience. I thought that was the whole point of MN? I wish I hadn't had the amnio, and I wouldn't do it again - that is my point of view, and MN is for women to use as a forum to share their points of view.
As for me being in trouble for saying that the amnio was physically unpleasant (can't remember the name of that particular poster) - all I am going to say to that is have you been on the childbirth threads at all??? I would have rather known beforehand so that I could be prepared for something worse than a blood test - again, just sharing my experience. If this results in lots of people getting stroppy I shall keep off this website from now on!!! Thanks to those who sprung to my defence, and those in the majority who simply didn't take offence where none was intended.

I think that all anyone wanted was that your title and original op was more sensitive, yes I have been on the childbirth threads - I have had three children.

Some people have worse births, some have better, some have pain relief, some don't, some have c sections, some have natural births etc etc.

Again I'm sure if I posted your thread title in the child birth section then there would have been a different reaction.

But just to reiterate, congratulations and I wish you the best.

I think that you are being very unreasonable, KiddingAnxiously.

This is about CHOICES. People making a choice do not need to hear only one side of the story.

"Some people have worse births.. etc" - YES and all experiences can be posted.

I find it very worrying that there's an ix nay on saying anything potentially upsetting to those considering amnio on this subforum. Yes, this is a sensitive topic but there should be room for people to be blatant and honest in their responses to their own choices.. as wannabe says, perhaps there are others who see a reaction like this and feel that they can't contribute their own experiences.

That's fair enough mrsbean78, I don't need everyone to agree with me.

It's not the opinion I found insensitive, it was the wording used to express it. I have made this clear from the beginning.

I have never disagreed with people having choices either and feel that I am being misunderstood. My whole point was about expressing those choices with a thought to others.

Mrs Bean - thanks!
Kidding anxiously - perhaps you are being oversensitive rather than me being insensitive? Chill out!

KiddingAnxiously - I agree with you, I think that the title is judgy and insensitive.

OP - no-one is critisizing your opinion, just how you express it.

EmmaKateWH, what if the results had been different, would you be here now saying the same?

Again as I have previously said, maybe counselling, a uniform spectrum for results and more information would be a way of lessening panic and the need for amniocentesis but certainly not the information given on this thread.

FWIW I don't even think the statistics given are accurate now? They are certainly not what I was told both in Ireland and in the London hospital I went to.

Like I said I think I am indifferent, I think everyone is entitled to do what they want to do. I just care about people that haven't dealt with anything like this before. I don't need to "chill out"

And once again I am glad you are happy and I hope your pregnancy goes well for you.

I seriously feel like going around to various sensitive threads and posting "Don't do it" on them.

Thanks ShadeofViolet, I feel like I am seriously out of kilter here, but inside I just don't feel it was right.

I think the title is judgmental. It's a very personal decision.

I've had an amnio, I've had 3 nuchal scans, I've had 2 CVS procedures. I wouldn't deter anyone from having any of these. Do whatever keeps you sane for the 40 long weeks.

I agree with Riven and wannabee here.

There's a lot of talk about sensitivity to posters having an amnio. There's litte senstivity (generally speaking) to parents of children with Down's syndrome. How do you think those parents feel when they read threads discussing Down's as a 'risk' and as some dreadful thingto be avoided?

And yes I do wish that it was made clearer that a clear amnio doesn't equal a healthy baby.

My consultant actively advised against an amnio when I told him I wouldn't terminate a downs baby.He said the risk of miscarriage was too high.I don't see why downs is portrayed as so terrible either,we all want the perfect baby but in our hearts I think we just want to give our children happy lives,and that can be true for any child,with or without a disability.Motherhood doesn't have a lot to do with perfection in my mind,more with loving the child you have and accepting them for who they are.

I hope I'm not being referred to with regards to DS, I have actively said that I don't think it's very bad and think the same sensitivity should be given to anyone that wishes not to have an amnio or keep a baby given any sort of diagnosis.

This isn't a discussion about the good and bad of terminating for downs is it? it's about how much an amnio can hurt?

I have a couple of problems with this post. One the statistics that for every baby detected as having Downs with amnio, 3 screen negative babies are miscarried. The statistics are now 0.5% for most clinics and the published rate is based on an old study when they did not do the procedures under ultrasound guidance (!!). Also, the guidelines say that a mc in the 5 days after an amnio/cvs has to be attributed to the procedure when, in actual fact, the background risk in any pregnancy at about the time CVS is done (11-13 weeks) is 1% (as this is the time when many chromosomal abnormalities become incompatible with further development - I don't know what the background rate is for about 16 weeks when amnio normally done, slightly less I should think). The incidence of immediate mc due to the actual procedure is very, very small now with well trained people doing the procedure under ultrasound - the residual risk afterwards is from infection introduced as a result of the procedure. Even this does not necessarily mean mc as can be treated with antibiotics (but not felt to be high enough to routinely prescribe antibiotics after a cvs/amnio).

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. 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. Less overwhelming than having it all thrust upon you at the birth with hormones and emotions running high I would have thought.

I don't think invasive testing should be taken lightly - it is a significant procedure with risks. But equally I think people should be given all the facts and risks accurately without scaremongering so that they can make their own informed choices for their own personal reasons. I do take the point about the OP being entitled to her opinions and it is not something that should be taken lightly, but I think the tone was somewhat insensitive in a forum topic that specifically has threads in it offering non-judgemental support to people who have chosen to terminate, for whatever reason (possibly instead of letting a baby die a prolonged and painful death).

I do think the NHS should be consistent in it's approach though - the quality of the screening does seem to vary enormously. You always have the option of not having any done at all of course, but I think people who want to know should also be accommodated.

My post wasn't aimed at anyone in particuar KA. It's a general observation that it seems OK to talk about Down's in less than positive terms but apparently isn't OK to do the same about having an amnio.

The blood test & scan risks are just numbers. The risk could be 1 in 2 or 1 in 2000 & it could still be that the baby has downs. An amnio is the only way to know for sure plus on other conditions. It's for the parents to decide the risk. imho You can't put the blood/scan risk against the risk of amnio miscarriage as it's an unknown status against a impossible to predict event.

I think it wasn't the most measured of thread titles, but surely since it was based on the OPs own experience, then that should give her more leeway. Btw my cousin had an amnio, and she also found the procedure v. scary. Best wishes for the rest of your PG, OP, and sorry that you have been through such a scary time with bleeding after the amnion.

I am one of the women who has had testing.
I think that the original poster could not have predicted that she would have created such a storm. It sounds as if she was not given great medical advice; as if she was trying to highlight how perplexing, painful, confusing it can all be.
It is complex. It is individual. It is to do with the advise and support one gets at hospitals. The provision varies enormously.
Testing exists and it is every woman's choice surely to decide which way to go. I imagine she was trying to share what has obviously been a trialling time. Fair enough. She had a good point to make. Words are important and they are the ones she chose. She has every right to, I feel. It is okay to say that it hurts to been injected i the abdomen. It does hurt. I imagine that she is feeling upset now that she had caused such a furore when it seems to me she was trying to share her experience in order to help others. I hope you are okay EmmaKate; things can get inflamed and impassioned in this particular corner of mumsnet. Well done for posting at all.
I wish you well with your pregnancy.
B