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!

I guess amnios like any tests, affect different people in different ways.

I had one because my risk of downs was one in 24. You're right, the amnio is not like having blood taken, I was much more scared but had a really good doctor who explained everything in advance, did a brilliant job of getting me to relax and got me through it without any ill effects at all. The worst I can complain of was pins and needles in my hands which the doctor said was probably me being stressed.

I spent the rest of the day with my feet up (baby was first so I could) and everything was fine. It's not something I'd do for fun though.

agree with riven. Also wish they'd tell women that for every two babies that are detected that have downs, three "healthy" (i.e. that do not have downs" babies are miscarried.

I was given a fair amount of info before I decided on an amnio and they were pretty good at answering questions that they adn't covered.

The thing that made me cross was that they told me my risk was 1:24 then having gone through all the questions and answers and I'd concluded with dp that we wanted the test, they gave me a brochure for a private clinic and advised me that it would cost £500. They gave way when I said I would put my request for an amnio to the trust board via my solicitor and looked forward to answer in writing but that's not the point. I'm stroppy but some people aren't especially when under pressure. It just seemed like very bad practice to me.

I was going to write a long post, but honestly can't be bothered. justa is right, your post is very judgy and inflammatory.

It's up to each individual woman to weigh up the risks/pros/cons themselves and make an informed decision with the information they are given.

FWIW I have had two amniocenteses and a cvs with minimal discomfort. But then that is only my personal experience as is yours.

I don't see why it's judgy.

There is far too much balance in the direction of the need for tests/scans/amnio/termination and not enough on the other side of the argument.

If it's ok to say that a baby with downs would be a tradgedy/that other people (i.e. siblings etc) should be considered then it's ok to say that amnio is horrific too.

I refused an amnio on the grounds that the results made no bloody difference anyway. A scan would have shown if my baby had had something completely and immediately incompatible with life (such as no heart or no internal organs etc) and really, that would have been the only situation in which I'd have considered a termination at that point.

And actually, Ds1 has ADHD and Autism anyway, which you can't spot with an amnio OR a scan, and impacts heavily on his life.

The title "Don't do it" is pretty judgey to be honest. "A real life description" might have been a better title.

When it comes to this stuff IMO no-one should be told Do or Don't do it. It's quite hard enough as it is.

"It's up to each individual woman to weigh up the risks/pros/cons themselves and make an informed decision with the information they are given." the problem though is that the information people are given is rarely balanced, as the medical profession is far to heavily weighed in favour of iradication.

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.

And the problem is that when women decide to have an amnio at short notice it is usually a quite emotional time for them because they are being faced with the prospect that their baby is disabled. So they have to take on board that information at the same time as needing to make a decision about whether they want an amnio/whether they will want to go through with the pregnancy or have a termination should the amnio not give them the result they hope for. That's a lot to take on board in one hit, and when you have a medical profession that does not encourage the continuation of pregnancy where downs has been detected, to the extent that I know of women who have been offered a termination before they've even had the amnio "as you had a high result" (the result being one in 150), everything is stacked against you in terms of being able to make a balanced and informed decision.

To be honest with you, Downs syndrome would be nothing to me compared to what I was being tested for.

I certainly wouldn't terminate for a downs syndrome diagnosis, but women that come onto a board looking for information on this subject normally are in that situation and are emotional and vulnerable.

I just don't think it's appropriate to push your own views on people, the same way I wouldn't if someone wanted reassurance/support that they didn't want to have the procedure.

"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."

This is very emotive and for some people it's just not going to help.

well if people don't like it they do have the option to hide the thread.

The thread title is pretty self explanatory, people know before they open the thread that they might not like what's inside, if you change the thread title then they won't and might read that description.

Just because something is emotive doesn't make it a lie, and actually, the OP is as entitled to post her experience of being hurt and terrified as anyone else is to post their experience of everything being lovely. It's not her job to be helpful!

And she's right. I wasn't given the statistical risk of miscarrying a healthy baby when I was offered an amnio.

The reason I opened it was because I thought there might be new information available (not that it would be applicable to me, but I am interested).

Obviously that is not so, so I guess that the thread title is not really very self explanatory, or rather people might not all take it at face value.

Colditz, I appreciate that.

It's not that it is a lie, but that everyone will have a different experience of the same thing (like that old elephant fable).

If you weren't given the full risks when you had an amnio then I am sorry. For me it was the opposite way, I was given the facts over and over again. I am in Ireland though, so maybe that's why?

So.

If I posted a thread saying "Buying a parrot - don't do it!"

And upon opening the thread, you found that I had posted details of my good-pet-gone-bad, in that he pecked my child's finger off and we ended up in a&e, and has caused 3 nights of pain and misery and untold worry...

Would you then be saying "Well, that's not very helpful to people who might be considering buying a parrot, is it?"

I was offerd an Amnio this time around as babys long bones are short. 2 possible causes (aside from just being short limbed) were dwarfism and downs. Even though my bloods had come back as 1/2600 for downs they were suprised I said no to an amnio, and this was past 24 weeks. At 28 weeks the consultant said something about cataracts, and I asked the consultant I see at clinic (the other just scanned me) and he looked at my notes and saw I was 28 weeks but still implied termination was an option for cataracts. (ended up being a misunderstanding, the consultant has said you could (hypothetically) see cataracts as she had some eye student with her). Every scanning appointment she rb ings up amnio again - 1/100 risk or miscarriage isn't it? When my baby could just be short (like 5'3" me). I have no doubt amnios are horrific, but we do not need to be wrapped in cottonwool. I had a termination years ago and was swept along with "ending your pregnancy" blah blah. People need to go into things with knowledge.

Well perhaps if there was a separate parrot section for people to discuss these things and buying a parrot was a life or death situation for you then I might agree with you.

As such it's not even similar.

As I said before most of this isn't even applicable to me, I carry a much higher risk for a genetic syndrome and it's far more severe than Downs syndrome.

I just happened across the op and thought it very harsh. Normally I err on your point of view, it was just the wording that made me post.

With DD (who is now 4) I was given a 1 in 30 chance that she had Downs Syndrome following my blood tests.

I wasn't asked whether I wanted an amnio. The midwife phoned me at 9pm with the results, and told me to come in to "chat" with the consultant the next morning.

When I got there the consultant was obviously under the impression that this "chat" involved performing the amnio as he had everything set up!

I firmly told him that I did not want an amnio due to the risks that came with it. I knew that if the results did say that she had DS I wouldn't terminate, so the risks seemed silly to take.

I was basically told that I was being irresponsible, and that I should think about my 2 other children and how they would cope. However, having worked for a number of years with children with disabilities I knew that we'd cope!

From that moment on I didn't get a scrap of support from the consultant. However one midwife was brilliant, totally supported my decision, and when DD was born she arranged for a paediatrician to see her straight away to see if she appeared to have DS.

She didn't have DS, which made me even more sure that I made the right decision. But even if she had she would still have been my little girl and I would never have terminated.

With hindsight I shouldn't have even had the bloodtests, and if I ever have a 4th I don't think I will bother as they just caused moths of unnecessary worry.

I wouldn't judge anyone else's decision, but just thought it might be helpful to share my experience.

You don't get a nuchal scan where I live, just one at 14 weeks (booking in scan) and then if you need one further along.

I had an Amnio with DD and I was told the risks of m/c (although I cant remember the exact risk now).

I was given odds of 1 in 140, and I decided to have the test, not because I would have had a termination, but because 20+ weeks of not knowing would have bloody killed me. I needed to know either way.

Its a personal choice and its up to each woman to make it. I agree the thread title is a bit insensitive. I know that people can hide the thread, but they will have already seen the title.