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Amnio tests

(22 Posts)
sparkle Tue 29-Jul-03 19:59:43

My sister has just found out that she is in a high risk category for Downs and Spina Bifida and is being offered an amnio either tomorrow when she sees the consultant or in a few days when she has had time to think it through.

I just wondered if anyone had any information about risks of the test (she is 17 weeks) or how they made the decision to have/not have the test.

I've tried a search on the subject but not really found what I was looking for. Any info or advice appreciated. Thanks.

pie Tue 29-Jul-03 20:06:21

I had an amnio at 16 weeks for the same reasons as your sister. Following my scan I was put at a 300/1 risk for DS and higher for Spina Bifida.

At the hospital I'm with 300/1 was the cut of point between high and low risk. Do you know what odds your sister is given.

The official statistic for miscarriage after amnio is 100/1. And in some hospitals they won't offer an amnio unless your risk is the same or higher. My hospital had a 300/1 miscarriage rate so that was why their cut off point was the same.

If your sister does decide to have an amnio tell her to insist on the most exoerienced doctor, as that makes all the difference to the risk factor of miscarrying.

As to having the test, if she can wait to think about it that would be best. I didn't, I felt completely lost. DH wanted the test. I think though that if we had more time to think about it we wouldn't have had it.

The reason I say this is that there is no point having the test unless you know what you are going to do with the result. If it comes back positive would you have a termination or use the info to prepare. If you would have the baby no matter what then there is probably no reason to run the risk of miscarriage, and you would still be able to research, even if at birth the baby was ok.

Hope this makes sense!!

sparkle Tue 29-Jul-03 21:16:08

Thanks for the information and advice Pie. I think my sister was given a risk of 150/1 and told that this was the lower end of high risk (if that makes sense)although this is double the risk of your result isn't it?

I'm not sure if they gave her different perecentages for DS and Spina Bifida though. I'll check with her.

sammac Tue 29-Jul-03 22:02:43

Agree with pie re risks of 100/1 after test. Most important is doctor's experience- this is the thing to insist on- don't settle for anything but the best, tell your sister and get her to ask about the doctors experience. Anyone worth their salt will happily answer any worries.

I had time to think about it and used the internet to find out (too much!!)about it.

I had an amnio because of my age=high risk for everything, never even had the earlier test as doctor said it would come in high risk anyway! When it came time for the amnio it wasn't my consultant but someone who came in 'twice weekly to do the test' I was very upset about this as I knew the risks re miscarriage were down to the doctor. I explained this and my consultant managed to get away to do it. All well, but I stayed in bed for the rest of the day and the next day to be on the safe side. Also got preliminary results in 3 days, so not to long to wait, this was probably the worst time- waiting on the call.
Now have a gorgeous 19 ds month old running around!!

Batters Wed 30-Jul-03 13:44:29

Message withdrawn at poster's request.

CAM Wed 30-Jul-03 13:56:14

sammac I wonder how old you were to be told the early (presumably blood) tests would come back high risk. I had these tests when pg with dd2 at 39 and they came back "negative" as did the nuchal scan. Refused amnio on this info although it was routine at my hospital for over 35's. Sparkle I wish your sis the best of luck with her decision.

bunnyrabbit Thu 31-Jul-03 12:47:42

I also had Nuchel Translucency. Am 36 and did not have an amnio. I have a feeling that they cannot do the Nuchal Fold past a certain gestation.... but it wouldn't hurt to ask.

One thing to remember is that the mc rate they give will not all be down to the amnio. As we all know, unfortunately some people do have a mc for no apparant readon, and part of the figures they give are due to these and not because of the Amnio. Statistics always sound awful.

Sorry, this doesn't sound very positive does it? It was supposed... basically I wish her good luck whatever the outcome.


arabella2 Thu 31-Jul-03 17:39:10

Hi Sparkle
I came in with a result of 1 in 10 for Downs for ds when I had the triple test and subsequently had an amnio which showed ds was fine. I think the triple test is highly unreliable - even if the results seem very good the baby could still have downs for example. I had the amnio (after going once for the test and coming home again, then going the following Monday) because I could not face the next 5 months of not knowing but I would not have had a termination. I agree with Pie that there is no point in having the amnio if the baby would be kept anyway in the case of any handicap (I think in any case that babies should be "kept" unless extremely disabled but this is for a different thread...). I regretted having my amnio too as I was very worried I was losing amniotic fluid after though I don't think I ever was. Seeing ds I can't believe I put him through the risk I did put him through (even if small). I agree that the procedure should be carried out by as experienced a person as possible. The amnio itself was painless.
I hope this helps in some way and I wish your sister the best of luck.

marsup Fri 01-Aug-03 13:26:44

I think the nuchal can only be done at 12 weeks (around there?) and I'm told it is much more reliable than the alpha-feta-protein test. Unofficial rumour (via a friend working doing research in a related field) has it that the government is considering revising hte way the a-f-p tests are done because the results are so unreliable they get different results with the same sample sent to different laboratories across the country.

Rhubarb Fri 01-Aug-03 14:13:23

My sister was told she was at a high risk of having a baby with Downs, 1 in 100. She's over 40 and already has a little boy with the syndrome. She had a nuchal fold scan at 19 weeks which came back clear for both DS and SB. It's not as accurate as an amnio, but a lot less painful and intrusive. If the scan is a good one, they can be 95% sure of the results. She can always choose to have an amnio afterwards if she wishes, but she has to outweigh this against the obvious risks of miscarriage which, though low, are still there.

I hope everything works out for her.

zebra Fri 01-Aug-03 16:36:55

Rhubarb: that doesn't make any sense; the nuchal fold results were only calibrated for being made at about 11.5-13.5 weeks. Doing nuchal fold outside those dates means it's not reliable.

throckenholt Fri 01-Aug-03 16:51:42

I had the nuchal fold test with my twins (since the blood tests don't work for multiples) and my consultant said that it was only valid if done between 12 and 14 weeks. I am definite about that because one of mine had a borderline thick fold, and I wanted him to check it again and he refused because it was about 15 weeks then, and would no longer be meaningful

CAM Fri 01-Aug-03 17:46:38

But I had the nuchal scan at 10 weeks and I live in an area where it is given as a matter of course as it is a midwife training hospital.

sparkle Fri 01-Aug-03 20:16:06

Thanks everyone for your replies. My sister ended up having the amnio, she felt she needed to know whatever the outcome. Thankfully, she heard today that the test for Downs Syndrome is negative as are some of the other things she was tested for but she has to wait another 2 weeks or so for the complete test results. She is also having a scan next week to hopefully rule out spina bifida.

Thanks again for your help. Sparkle.

sammac Fri 01-Aug-03 21:17:48

good news for your sister- she can rest alot easier over the next few months.
Cam- I was 40 when pg and the consultant- who is the director of the hospital- quite matter of factly told me that the results would be high anyway, so save me from going through added stress and anxiety, just skip it. He put no pressure on at all to have the amnio, and it was entirely our decision( after lots of thought)

CAM Sat 02-Aug-03 14:27:08

That's interesting sammac as I had the triple test at 39 and it came back very low, they described it as negative.

Dahlia Sat 02-Aug-03 20:36:30

Its an awful decision to make - I had an amnio as my blood test result came back as a 1 in 80 risk - my hospital's miscarriage rate was slightly lower than 1 in 100. We had already discussed what we would do in the event of a high risk result and so we went ahead with the amnio, which didn't hurt at all but was psychologically very painful, but my consultant was utterly brilliant and I trusted him completely. We then got a fast track result in 48 hours (you have to pay £60) and everything was fine. Good luck to your sister, I feel for anyone who goes through it.

Rhubarb Mon 04-Aug-03 10:36:26

Sorry Zebra, but that's what happened. My sister is a week behind me, and she had her nuchal fold scan at 19 weeks, same time as I had my abnomaly scan. And I can only repeat what she told me, that they were 95% sure of the results. She had it done at Alder Hey hospital and repeated at Whiston.

Rhubarb Fri 19-Sep-03 10:20:50

Just had to resurrect this thread when I came across this article whilst searching for something else amnio article . It's certainly an eye-opener and I would recommend that anyone thinking of having an amnio read it first.

eefs Fri 19-Sep-03 10:53:13

that's shocking reading

suedonim Fri 19-Sep-03 16:30:48

You might also be interested in this BBC item and radio programme, Rhubarb.

josshy Fri 17-Oct-03 14:17:54

sparkle I went to the hospital today due to getting a high risk result at my age 41. I had already decided I would not be able to terminate whatever the result so due to this I refused any futher tests. After going to the hospital and discussing my 1 in 30 chance of having a downs syndrome the way in which the statistics are calculated did not convince me to change my mind. I was also told that 90% of high risk women usually opted for futher tests and most of them came back normal. Also at the hospital I am attending only three women gave birth to downs babies and one was under twenty out of 2,300 babies born that year.The baby will still be loved

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