amniocentesis

[Melly]

Hello everyone, hoping that some of you might be able to offer some advice or share your experiences on amnio. I am due to have one tomorrow and will be 16 and a bit weeks. I had an amnio when I was expecting my dd and thankfully all was well. This time round I seem to be even more scared, even though I know what to expect etc. Apart from the obvious worrying about the result, the thing that is worrying me is coping with my dd after the procedure. I've made arrangements for her to stay with relatives tomorrow and over night and will collect her on Friday pm which should give me a good chance to rest as they advise you to do. I'm wondering how long you are at risk after the procedure? DD is toddling now but still has to be picked up, carried up the stairs, lifted into her cot etc etc. Is there anything else I can do to minimise the risks? I am also getting myself into a complete state worrying about the result, which I know I have no control over, I was 37 when I conceived and am 38 now. Would be really grateful to hear from anyone.

ps - RobinW, if you are still out there...don't leave this site in a huff. All opinions are valid, but if you are going to post something that comes across as stroppy, then you have to be prepared for some come back. That is all part of the pleasure that is Mumsnet! I personally think that your comment on the 'straitjacket for children' thread was a bit petulant, and unnecessary. However, I would hate to think that a discussion such as this one (amniocentesis), which causes so much emotion, should cause you to 'pack your bags'.

Hope to see you back soon

Just a few thoughts from me. My sister has a child of almost 14 with Downs. She was 27 and he was her first child. She has 3 more now, but as much as she loves him she has always said that she would have a termination if she was ever carrying another Downs baby. My oldest child is 10 1/2, she was born with multiple problems, hydrocephalus, 2 ASD, pulmonary stenosis, valproate syndrome, developmental delay, ehlers-danlos syndrome. I was told that she would never amount to basically not bother with her. She has an averaged I.Q of 130 and is now a stroppy preteen like any other. My youngest is almost 22 months, and has spastic diplegia cerebral palsy, he is very delayed developmentally. Had I known when I was pg with my oldest the problems she was going to be born with I would have terminated the pregnancy, although she is fine now. Having more children between her and ds makes choices such as terminations a lot harder I think, but tbh I can't say with my hand on my heart that I would have kept my son had I known in advance. The day to day life of having a child with disablilities is relentless. There is weekly physio at a children's centre, weekly hydro at a children's hospice, daily physio at home, finding space for specialist equipment that my son can use, the regular medical appointments to neurology/paediatrics/dieticians/opthalmology, and soon to be regular o.t no doubt. The amount of battles we have to fight, the sheer physical exertion of moving him and carrying him everywhere, the worry of how we can keep doing this as he gets bigger and heavier.It gets very wearing and depressing. I love every fibre of his body and would fight to the death to protect him, but it is neverending, there is no rest.

Also I think that when he is older if I ask him, he would say that he would rather have been born with the ability to use his legs, to be able to sit straight so his spine stops curving, to not have a squint. Quite frankly his life is going to be great at home but not so great outside. He will have to put up with a lot of grief from people ( and there are plenty about), who look on him as some sort of freak. It takes a strong minded teenager who will be able to look at my son and fall in love with him. Yes he will no doubt find someone eventually, but how much longer will he have to wait to have his first kiss, first date etc? I'm not saying he would choose not to have been born, just that he would not chosen to have been born disabled. I would think the blind man would have chosen to be born seeing, the deaf to be born hearing, my son to be born with legs that work.

This thread will never come to a conclusion because there are too many areas of grey between the black and white.

lou33 thank you for that, interesting and thought provoking indeed.

Yes, Lou, very wise words indeed.

I think you are right Lou33, we have to remember that when we are talking about disabilities they could be either physical or mental and I'm not sure which is worse. I guess if you have a child who is physically disabled but mentally alert, they are aware of what they could be, but never will, whereas a child who is mentally disabled does not understand that they are different to other children, or if they do, they don't fully grasp the situation, which makes it easier on them.

However you never really know until that child is born just how disabled they are going to be. For instance with Downs Syndrome they can be really bad, their co-ordination can be difficult, their immune system weak and their mental abilities very low, but at the other end of the scale they may simply be a bit forgetful and have a few physical characteristics (such as the tell-tale eyes). Reg Holdsworth from Coronation Street springs to mind as one of those who suffers from a very mild form of Downs Syndrome. But when the amnio tests come through, these are the things you cannot find out. It will tell you simply that your child will have Downs, but not at which end of the scale they will be.

It is hard work. But I think looking after a child/adult with disabilities does change your whole outlook on life. As Cadi said, when she thought she was expecting a baby with Downs she made changes to her life, her baby didn't have Downs but she said that some of those changes have remained. It does change you as a person for the better, but as to your standard of living, I couldn't say. I appreciate how hard and emotionally draining it can be.

There are no answers on this thread. But I'm glad everyone has stayed friendly and open-minded about it all.

Thanks for replying , Rhubarb, soupdragon, www, I thought I had killed this thread completely! I have always thought the same thing about reg holdsworth too, and am convinced that the bloke who played grant in eastenders is his son! Sorry to sound so frivolous, but just had to say it .

Robinw, as the person who started this thread way back in October, the fact that I haven't posted again is not particularly significant really. The thread was originally started by me as I was having a major case of the jitters about having the amnio itself and how I could minimise the risks afterwards associated with miscarriage etc. As usual I got brilliant support, especially from Bundle as she was going through the same experience. Inevitably threads take on a slightly different direction and I don't see that as a problem. I haven't posted before regarding pro or against termination in response to some of the latter posts as I feel exactly the same as Bundle and don't feel I need to ask advice about this aspect as I have always been 100% clear, I certainly wouldn't bother going through the trauma of an amnio if termination wasn't an option, but it's such a personal subject and I respect all the diferent views that have been posted here.
I hope you continue to post and haven't left Mumsnet as a bit of debate is very healthy.

Hello everyone, I am in the very early stages of pregnancy (6 weeks) and I don't want to tell friends about it until I get the "all-clear". I was told by the doctor that they don't insist on amnios unless you are 36 years, I am 34 but still think I want one. Has anyone got any advice on the procedure? (ie is it uncomforable, did you have your partner with you at the time etc). I am a bit of a wuss when it comes to this type of thing but I can't ask my friends at this stage...help!

Hi bozzy,

I had an amnio in my last pregnancy. It doesn't realy hurt (and I am not good with pain), but does feel a little 'odd'. Dh was with me for support. The medics were also very supportive. I took a portable CD player with headphones to listen to some music to relax me which I found very helpful. I was told to take it easy for 24 hours. The procedure was fine. I hope this info is helpful.

Best wishes

Melly - thanks for your kind words, it's good to know we can all help each other out...and we both got a good result
Bozzy - I agree with hmb to a degree..but I'd say it did hurt - my toes actually curled up (& stayed that way until the very end!) when (sorry if your're squeamish) the needle actually went into the uterus wall. my consultant said this was an involuntary action, because of the trauma on the muscle tissue. It took a minute or so to drain enough fluid (pale yellow) and yes that felt a bit weird. I took it very easy for the rest of the day (doc said: "well, you can't avoid picking up a toddler, but I wouldn't take her swimming"!) but didn't suffer from any of the cramps she warned about. I'm glad I did it though but wouldn't have bothered unless I'd had some sort of indication of increased risk eg high nuchal translucency measurement (which I didn't have) or in my case low HCG in my quadruple test which can be an indicator of Edwards syndrome. there should be a genetic counsellor at your hospital who could take you through this in much more detail and help to interpret any tests you might have - but not make your mind up for you.

oh and bozzy, they don't 'insist' on amnios anywhere...it's your choice and it does carry a risk of miscarriage...quoted as anything between 1/100 or 1/200 depending on which hospital you go to/who does it. they should also use continuous ultrasound to see what they're doing all the way through the procedure. good luck

It might be worth asking the unit what their m/c rate is. I was quoted 1 in 300 by the doctor who did mine. That way you will have more info before you decide.

thanks hmb and bundle, the thought of miscarriage is also a bit worrying but it gives me some food for thought...I guess the best thing to do is to have a talk to a genetic counsellor as you suggest. Is it more unusual to have an amnio or do you think most women (say over 30) have them?

hi, bozzy - the amnio I had was 10 years ago (almost exactly) so my memories aren't too clear. It was done by the senior consultant at the hospital I was attending, so I felt pretty well looked after; there was "not a lot" of amniotic fluid which was a bit worrying, and it was uncomfortable, but the ultrasound was on all the time and he was very careful, and I have had worse experiences at the dentist.

HTH! Good luck!

Hi
I haven't read the entire posting but would like to add my thoughts for what they are worth - they may help somebody or at the very least I will have shared them. I had an amnio at around 16 to 17 weeks when I was pregnant with ds (who is now 13 months old). I was 32 when pregnant but my results to the triple test (which I would never have again) came back with a very high result for downs syndrome - 1 in 10. At first I was not going to have an amnio but then I decided that I could not spend the next 5 months not knowing if my child was handicapped so I had it (I would not have had a termination). Basically I didn't think long enough about the triple test before having it. It is highly unreliable both ways and my results prove it as ds does not have downs syndrome or any other chromosomal abnormality. I was angry with the hospital for not counselling me longer about the triple test and also for their attitude re the 1 in 10 result (told me very seriously with prepared downcast faces...). There is a small risk of miscarriage after an amnio and being a paranoid type I became convinced I was leaking amniotic fluid (it was probably discharge) and spent one night in hospital. All in all it was a very stressful few weeks and I never want to go through it again. It did make me think about downs and what having a downs child would mean. Worse of all, I can't believe I endangered my pregnancy even if only slightly when I see my lovely ds. That is the hardest part about it. So in any subsequent pregnancies, if there are any I am not having any kind of chromosomal abnormality screening (triple test, nuchal scan or amnio) at all. If one would not have a termination anyway, there is very little point in all the other tests - something I should have thought about more before having the triple test. I thought it would reassure me - little did I know! On a more practical note, the amnio itself was painless and very well carried out.

Hi Genia and Janh, thanks for your advice and for letting me know about your personal experiences. The problem I have is that I am in the US for a few months and therefore do not have a doctor here I know and trust. I am not covered by insurance and can't get it now since it is a "pre-existing" condition! Now DH may be here for a year which means I will have the baby here..the doctor I saw who confirmed my pregnancy ($200 later..) said that I could have an amnio if I wished so I will need to find someone to talk to here! Didn't even know about the triple test but I think my friend in England had that and then had to have an amnio which I remember her saying was very stressful. I don't really want to tell my friends yet as it seems too early but it is great to hear your experiences and is very reassuring to hear from those who have experienced it themselves! Thanks!

Bozzy there is an earlier test you can take at - I think - around 10 weeks which tests the placenta. I would have that if I got pg again.

Not sure, but I thought the reliability of the triple test had been discredited. It was called the Bart's test when I had it - presume this is the same thing.

Bozzy, I was 36 when I got pregnant and amnio was never discussed.

bozzy, have they given you any idea how much it costs to have a baby in the US?

Had DD1 there 20 years ago, luckily our insurance did cover it as it was a caesarian - $6000. And that was just the delivery - no idea how much all the ante-natal care cost as we were in a HMO (operated like the NHS though we paid monthly premiums for it) and never had bills.

We did have to pay $22 for the bedside phone and ceiling-mounted TV...

Tinker, the Barts test is also known as the quadruple test, ie the triple plus one other hormone (don't ask me which, I haven't got the leaflets with me!). they do seem to have reasonably high figures for % abnormalities detected Downs, neural tube, Edwards & Patau's syndrome. My risk of Edwards (turned out clear) was 1/30..which if you think back to yourself in the school classroom with about 30 others doesn't seem that high..but unlike Genia, I did want to know and would have terminated with Edwards (usually fatal within 1 yr anyway).

Just had my amnio today and feeling very stressed out and upset - not about the results (yet) but about miscarriage. The doctor who did it was very curt and in a big hurry to get me out so I didn't ask as many questions as I would have liked. Does anyone know how long you're at risk after the procedure? The doc said the biggest risk is actually during so if nothing goes wrong when the needle is in (which it didn't), the worst part is over. She also said to watch out for signs of infection/ fluid leakage,now that it's all done, but gave no indication of how long for.It would be great to know that if I can make it to - say - the weekend, then everything's likely to be OK. My tummy is really uncomfortable this evening which is not helping my anxiety levels at all - though I think half of it is because I've also got cystitis.

Jodiesmum, just seen your message about your amnio, and know I sent a message to you early december about the procedure (I am pretty new to mumsnet so I dont like to butt in too much as a lot of you seem to be regulars!) Please try not to worry, when I had the amnio done up at Kings College the consultant told me as,in your case, everything went fine which was good and just to watch for fluid leakage, or pain like in your case. He said this would be very unlikely as the procedure went well again like in your case. He said to me at the time that if nothing happened after a couple of days then things should be fine but a week ie five days would put me in the clear and he was being generous with his time scale and that I would be okay. To be honest I know it is hard and easy to say when you feel worried and down but the best thing I did after the procedure was look forward to my 20 week scan rather than dwell on the what ifs etc because all you will do is worry about every ache and twitch which we all get. It is all over now and you have jumped the hurdle just look forward. I had a 3 year old to take care of at the time but all I did for a day or two was to try and not get too stressed maybe something to do with being 39! I can assure you that in a few weeks time when you reach 37 weeks as I am now you will be worrying about the next stage - birth will it be the same as last time!!!! Anyway take care.

Saw your message Jodiesmum and just wanted to say I hope your feeling better today. Take care.

Thanks so much Susieblue (and Jessi too for your good wishes) , that's exactly the kind of info I was wanting and didn't get at the hospital. It makes all the difference in the world (for me at least) to have a timescale and something to aim for. It's a shame the consultant I had was so unwilling to talk as just a couple of minutes would have put my mind at rest - luckily you've done it for me anyway! Thanks also for the message in Dec which helped me make my mind up to go ahead with the amnio. Really good luck with the birth of your baby and I hope all the 'easier second time round stuff' is true for you.