very scared of going for amnio

[eggybrokenoff]

I have an amnio tomorrow morning after a high risk blood test result. I'm 18 weeks and I'm most frightened about the risk the test poses to the baby. I just can't stop thinking about it. Any advice would be very welcome

[jimjamshaslefttheyurt]

Would you terminate if a problem is picked up?

I think you do need to ask yourself that.

If you would then perhaps you don't really have any choice but to go through with the amnio but at least you know why you are doing it iyswim. Amnio has been around for a long time and pregnancy losses are rare from it (although a 'positive' DS result is also rare from it - most come back clear).

If you wouldn't but just want to know to prepare yourself then you might want to read yesterdays Observer first of all which discusses the risks surrounding amnio and CVS. If you just want to know either way then there are other options that can give a very strong indication (very detailed scanning for example).

[bamboostalks]

Think carefully about testing, if you do go ahead make sure you have a very experienced doctor as this makes a huge difference to the risk of miscarriage.

[pussface]

Hi there, I had an amnio, and I was also very nervous and anxious about the chance of miscarriage. There's nothing I can say to stop you worrying (as you just do) I had it and it was scary but if you need to know for whatever reason you can get through it. The consultant was amazing and all the nurses treat you with tons of kindness and sensitivity. The main thing is to relax the best way you can. You have a scan first then the consulantant needs you to stay v stlll when he puts the needle in your tummy, but before that they wait until you are ready and ask your permission to proceed. The positive thing is you get to see your baby on the screen for so much longer than you do in a normal scan. My advice is don't look at the needle just watch your baby on the little tv screen they put next to you and hold someones hand very tight. I would advise you to just focus on a positive outcome rather than the negatives. I googled amnio like crazy before mine and it didn't make me feel better and I just came across loads of posts saying their baby was fine and there appears to be are a large amount of false positive results for this test which is why they need to back it up with an amnio. My baby's result was a false positive and was born in great health. You will know in your heart what to do whatever the result personally i would rather know in advance now we have the technology. Take care xx

[eggybrokenoff]

thank you so much pussface - that really helps.

[janinlondon]

I also had an amnio, and agree with what pf says. Do rest as much as you possibly can for the day or two afterwards. The procedure itself is not as scary as you are probably anticipating. I wouldn't decide whether take a step like this on the basis of a newspaper report - especially one based on an as yet unpublished piece of work in a non-peer reviewed journal.

[jimjamshaslefttheyurt]

The journal says it is peer reviewed. And Nicolaides comments suggest he is taking it seriously.

Not an issue if you would terminate for a positive result as I said in my first post, but definitely an issue if you are having the amnio just for further information. Especially if the 'high' risk result is actually something quite low like 1 in 250 (which from Nicolaides comments seems to be where the problems are arising).

[snowleopard]

How high is "high" risk? I was told we had a high risk of down's when that risk was actually 1 in 190 or so - not what I consider high - and I was pretty forcefully pushed towards having an amnio - they pre-booked the appointment for me without asking, strongly recommended I have it etc - I could not see why. I would not have terminated for a down's result, and I was terrified about the risk to the baby who was probably 100% normal.

I went to the appointment, went into the room, listened to their arguments in favour of an amnio, but finally with DP decided I couldn't do it and walked out. DS was born with no conditions btw but even if he had had down's, I would rather have had him than risked the amnio.

I don't know your exact situation and the odds you've been given but remember the amnio is your choice and the medical profession do often seem to have an inexplicable desire for you to have tests at every opportunity, when it might not be what you really want or need.

Whatever you decide, good luck and remember everything will almost certainly be OK.

[wannaBe]

iirc the risk of miscarriage is approx 1 in 100. So if your risk of ds is higher than that then there's more chance of losing the baby than having a baby with ds.

I know someone who had a mc following an amnio and the baby turned out not to have downs. If you are certain you would terminate if the baby had downs then obviously amnio would be something you feel you have to go through with, but if it's just because you feel you need to know/be prepared then imo it's not a risk worth taking.

[jimjamshaslefttheyurt]

That seems to be the issue snowleopard. This is from the Observer article

"To detect as many Down's babies as possible, the initial screening threshold is set wide, which means that more than 95 per cent of women defined as 'high risk' will not be carrying a baby with the disorder, yet most go on to have the amniocentesis or CVS tests."

Nicolaides appears to be saying that it is essential to improve detection and so set those screening thresholds to be narrower.

The article also says "Studies in the past have shown that loss rates following amniocentesis are six to eight times higher among inexperienced practitioners." As bamboostalks has already said an experience practitioner is essential. If you go ahead with an amnio don't hesitate to ask how experienced the person is and demand someone with a lot of experience. It's not a time to be polite, or contribute to teaching and experience.

[TotalChaos]

have you had a scan recently? just wondering whether a detailed scan before the amnio might alter the odds one way or the other to hopefully take you out of the high risk group.

[janinlondon]

I think we are all presuming the high risk is for Down's syndrome, but I don't think the OP has said this? It may be for another disorder....?

[snowleopard]

It was really quite intense, the pressure they put on me to have it and for no good reason. There was very much an air of "well it's best to know, just do it and then it will be out of the way, and then you'll KNOW" etc. I remember clearly that the doctor who was going to do it was pregnant herself and said gaily "I've had mine, it's so great to know everything's OK" and I felt she diddn't understand me at all - I just did not want the needle in there, I wanted to protect my baby.

I remember thinking what if I was depressed and not in a mood to stand up for myself; what if I didn't have good English and didn't really understand? They would have just bundled me in there and done it, and it wasn't necessary.

[escondida]

The amnio may hurt a lot, I know they say it's only 'uncomfortable', but I thought it was quite painful. Take paracetamol before you come in, it's a kind of deep intense pain. My tum hurt for days afterwards in my case, too.

The worst thing is the doctor told me to grip his arm during the procedure, and I gripped pretty hard it hurt so much, so I'm still worried that I made his arm shake as he poked the needle in! Baby is fine (now 7 months old), but if I had to do it again, I'd grip something else.

I don't know what to say about the worry, if anything can distract you from thinking about it, then do it (like watching a funny movie, whatever). At end of the day, the risk of m/c is still very small. Try to hold onto that thought.

You could look into getting the amnio done privately, one of the fetal medicine centres which officially have same risk of m/c following amnio as rest of NHS, but unofficially their reputation is for much lower m/c rates. It costs a lot to get done privately, though (£450 or so), and I would imagine in your case, you don't want any more delays. Good luck.

[snowleopard]

Yes I am just talking about my experience with a down's risk. I might have felt differently if it was a very high risk of something incompatible with life, because I might have terminated for that if it would save the baby suffering, for example.

Can you say what the situation is Eggy?

[eggybrokenoff]

yes it's high risk for downs. We are pretty decided to have the test. whatever we decided to do I can't cope with the anxiety for months on end - I want to enjoy pregnancy again, and I can't get on with anything when I'm this worried. But I am terrified of the risk the test poses.

I'm going to ask lots of questions first about doctirs experience etc as suggested, and know that it is ok to leave if I'm not sure right up until they do it.

It helps to know in advance it might be painful afterwards as that would have made me panic! I'm going to ak lots about what to expect after as well.

thanks for all the advice

[pussface]

When I went to have my amnio last year the hospital said the rate of miscarriage from amnio is now 0.5% not 1% as wannaBe stated above, also the hospital stated that their rate of miscarriage was even lower than 0.5% which was the national average. Find out what the rate is at your hospital, ask your mw as it may not be as high as you think. This is a common procedure and with an experienced consultant the risks are very low.

It really depends on whether you want to take any risk at all or be safe don't have the amnio and have no risk. As wannaBe pointed out it can be devastating if it goes wrong for you and your baby turns out to be okay. It is your decision which you can change at any time. Please make an informed one based on the medical professionals not on stats advised by other mum's (don't mean to cause offense wannaBe) as they are not always up to date however well intentioned they may be. I know it's tough I've been there and there will be those who've had the bad experience who want you to avoid it and those who've had the good experience who want you give you confidence if you want to take the risk. Do what you feel is best for you and your family as everyone is different. xx

[handbagqueen]

I had amnios with both my DDs they both were fine. Follow the advice from pussface.
Make sure you rest afterwards - its a good excuse to put your feet up for a couple of days and have your DP look after you. Definately take someone with you for the procedure and to take you home afterwards. It can be a bit scary, but remember the consultant who carries out the procedure has done thousands of these procedures - they ususally use the best most experienced consultants for the amnio and CVS's.
The most difficult bit is deciding on what you would do if the procedure detects a problem, this is a personal decision not something you need to tell or justify to anyone else, but I would recommend you and your DP discuss and decide what you would want to do in advance - not nice but necessary.
The positive side is if you want to know your baby's sex the amnio will give you a 100% accurate result so you can deck out your nursery!

[jimjamshaslefttheyurt]

The most up to date information on m/c rates is in the Observer piece from yesterday. Nicolaides will be talking about the research (he didn't do it - he will be commenting on it) on Channel 4 news apparently, but unfortunately not until tomorrow evening.

I can confirm that the research is published in a peer-reviewed journal (I work with one of the editorial board- he is very well respected).

[snowleopard]

Wishing you well eggy - as I haven't had one I'll bow out, but the advice here is great and will ensure you have the lowest possible risk.

[pussface]

I agree with handbagqueen you do get an experienced consultant for this procedure, I think they even try to reassure you before you go in as I was told I had the top senior obs consultant who was the best in the hospital. I don't think they were exaggerating either he was amazing and really commanded the room and had alot of respect from his team.

[jellybeans]

'I would no more terminate for a disability than I would for the wrong gender or different hair colour.' The thing with this statement is that I said the exact same thing until faced with a real choice was presented to me, ie when I had the luxury of it just being hypothetical, I was extremely 'pro-life' (for myself) until we were faced with a horrid diagnosis. I actually refused an amnio at first after bad news at a scan as we 'would never terminate' but I had to have one as my babies condition could be treated in utero with surgery if the chromosomes came back 'normal'. If not, the condition would be fatal as the underlying problem could not be treated. I had the amnio as I was sure it would come back normal and we could get on with treatment.

The amnio was uncomfortable but bearable, I rested for 3 days. The 3 day FISH results were good. Sadly 10 days later there was a very rare chromosome which meant our baby had no hope of survival and there was nil hope of her lungs and heart growing as they were squashed with fluids. It was either carry on and wait for the baby to die and explain this to my other DDs, there was also a risk of the massive fluid causing extreme high blood pressure for me, or we could go through a late termination which is horrendous. There was no 'right way' both seemed wrong. It seemed like we had got on a conveyer belt and were not really prepared that it may be us getting bad news.

In another pregnancy, we got a 1 in 75 for downs but declined the amnio. We didn't feel we would terminate unless the diagnosis was lethal/very severe. Because we knew what we would have to go through/live with. DD didn't have downs.

Anyway just sharing my experience, miscarriage from amnio is very rare, my large hospital has only had one lady in the last few years. Hope it goes OK and you get a good result and can then enjoy the rest of your pregnancy.

[eidsvold]

what exactly is it about down syndrome that makes you want to know for sure. As others have said - if you know hand on heart you would not terminate the pregnancy if the baby has down syndrome - I think you are putting yourself and your body through a lot of unnecessary stress. If you are sure that if the result comes back that your baby does have down syndrome that you would then terminate the pregnancy then I think you should have the amnio.

I can't talk about what it is like to have an amnio BUT i can talk about what it is like to be told at a 20 week scan that your baby has a heart defect and might not survive beyond teenage years. I can also talk about subsequent scans that detected that it was a different heart defect BUT which had the fetal cardiologist say to my husband and I if our dd1 was born without down syndrome it would be very very rare indeed. In hindsight we were probably looking at around a 1 in 5 chance.

So we sorted out care for when she was born - saw the fetal cardiologist a few more times and then got on with being pregnant and preparing for the birth of dd1. This was our first pregnancy and so whilst from 20 weeks we had things to prepare and sort out - we were still able to enjoy being pregnant and take joy in dd1's movements and the preparation for the birth of our babe - you know - buy the moses basket, prepare the nursery, wash the little baby gros, decide on names, change our mind, decide on different names and those things that are what every pregnant woman does.

She was born very quickly through emergency c-section and she did in fact have down syndrome. My husband and I were well aware what it is like to have a family member with down syndrome. We knew families who had family members that had down syndrome.

I wrote a long post on an thread about nuchal translucency screening results. If you want to do a search you can find it.

If there is anything else you want to ask about down syndrome - feel free to email me at eidsvoldsn at yahoo dot com dot au.

[eidsvold]

long post is on this thread

this is the picture of dd1 at one