anyone had an amnio and can give advice?

[wendyredhead]

I've decided, because of my age, to skip the tests and just go for an amnio and hope for the best. Just wondered about any personal experiences you might have had.

FioFio: now I'm asking you not post here anymore if you're going to behave like that. F hell I am not patronising you. That's 2 people you have misunderstood. OK so you're understandingly sensitive about this but it's obvious that you are too quick to react. Goodbye.

ah sorry not in that way; I was thinking afterwards because I was thinking in mouse terms I wasn't very clear. If there was a problem making eggs (and there wouldn't necessarily be) there would be a possibility of a higher rate of very early miscarriages- rather than a problem getting pregnant in itself (in mice this translated into litters of 3 or 4 babies rather than say 6). It wouldn't necessarily happen like that though (would depend on how the bits have swapped over), and of course I have never seen your dd's notes! Just sounds similar & something I would ask a genetic counsellor more about if the opportunity came up.

Really I just meant that from what you've said I wouldn't anticipate any other scary potential problems at all. I suspect they were worried antenatally in case a part of the chromosomes had been lost during the transfer- but as she's fine and 21/2 in your shoes I would assume that nothing was and the tests can just be relagated to a dim and distant memory of a worrying time.

choklit- you sound as if you're being very hard on yourself. I think when you're pregnant they're not quite real as such - lots of what ifs, once here they become very real. CVS is a routine procedure that comes with a small risk- but it probably seems larger once the baby is here and you're holding him (as in 'oh my goodness what did I risk?') . I don't think anyone would call you reckless though (I say that as it sounds as if you think you were). Enjoy him, and don't feel guilty. I think you raise a very good point that it can be hard to get off the conveyor belt once you're on it. I do know people who have had to convince doctors that they would be keeping their child with DS (one was callled selfish!)

arbs - I think I may have what yr daughter has - is it a balanced translocation or 'apparantly' balanced translocation? A bit of my 5p chromosome has broken off and swapped over with 14q.

Been told its fairly common - about 1 in 500 people have it (involving any chromosomes). It doesn't usually pose any problems to the individual with it unless some vital gene has been disrupted (hey, I am gorgeous and BRILLIANT. Passed A levels when they were HARD. Straight A student, career high flyer.. :O)

Can pose problems when it comes to breeding. DD has inherited an unbalanced form of my translocation and had problems. It probably wouldn't have been picked up on standard amnio / cvs. Can't really be arsed to into it here - I'd probably get 'oversensitive' like Fio and be asked not to post on the thread anymore (pffff FFS!)

ejb: it's not a case of being annoyed at somebody's over-sensitivity, more the fact that it's really not neccessary to shout your mouth off at folk who had made a seemingly innocent comment. And if somebody accuses me of something then I have every right to explain that they have misunderstood me. Nothing wrong with that.

Haven't read the entire thread, but the title struck a cord. I really wanted to know about DS in particular and I was 36 and paranoid. After a lot of soul-searching (me and dp) went ahead with amnio. We paid extra (something they only told us was possible on the day) to get the result quickly (2-3 days). Didn't have any money with us except plastic, but they let us post a cheque. Actually got the result the next day before I'd started worrying about it! Then full results and baby's sex a few weeks later.

But, I found out too late there is a private test in london that looks at the baby's nasal bone and has a high success rate. Midwife hadn't told me about the panoply of private tests available which I was a bit pissed about. I was totally ignorant, and felt I was catching up for the first (most important) part of the pregnancy.

I found a website that I found really useful, as I was very aware that once you start testing you are on a conveyor and it's hard to get off it. www.Dipex.org - it has a section on antenatal screening, with interviews with couples who've been through finding out bad news.

Anyway, it's a totally individual choice, I'm still not sure what I would have done if she had turned out to have any genetic conditions, but I did want to know.

Would I do the same again - I would be even older so probably yes, but with even more reservations.

Wendyredhead I have tried to CAT you kind of hoping you'll wait for my message before this thread blows up any more.

I had an amnio after the blood tests were very high - but the delays in getting the blood results caused undue stress as i was 22 weeks when i was finally given the results of the amnio. Having said that the amnio itself was fine and carried out by incredibly caring staff - so no complaints.

Wish you well in whatever you decide

Abidabidboo: yes I read about the checking of the nasal bone being the latest in research which seems more accurate. Thanks for your useful input and the link which I'll check out. It is such a rollercoaster isn't it. Like you I just would like to know as much as possible, just the way I am. Can't believe how quickly the results came back for you! No time to worry there. Glad it was all OK for you. And it is a dilemma for sure!

BethanG: on the other hand you had a really long wait you poor thing. Glad all was OK and thanks for your wishes.

Escondida: Oh dear, what went wrong?! Humans hey! I even wrote in my post in your defence that humans so often misinterpret text messages and yet I still got blasted aswell! Personally I think text can be dangerous as even when we are face to face we often misunderstand one another. I've seen a few instances where a similar thing has happened on this website.

I just don't understand it myself. None of us are here to cause any trouble or grief and I was only trying to help....should have kept my fingers out!

Seems Fio's messages have been deleted which I'm glad about as I don't think I would like to have read their contents. I've not done anything wrong so I will not be falsely accused of something and just take it lying down. She is bullying in my opinion.

Also, not sure what CAT means - I'm new to M/N and now I'm not sure if I like it anymore! Maybe you can tell me what CAT is all about?

Anyway, not to worry, thanks everybody for their fabulous advice on this emotive subject.

ejb and gess - thanks for the messages, v.reassuring will wait and see.

Hi Wendy, sorry this happenned to your post when you just wanted some information. I just wanted to tell you that the process can be relatively straightforward and informative (though clearly isn't always as can be seen from this thread). I had a CVS at 12 weeks, was made fully aware of statistical risks, what would be tested, possible problems that might obscure the results (mosaicism), had the test on the Monday which went absolutely fine and got the results on the Wednesday. This was sufficient in my case and I subsequently went on to enjoy a pregnancy relatively free of worry (though with no guarantees of course). Don't get too bogged down in all the possible things that can go wrong, the chances are your pregnancy will be fine and any tests you have will be straightforward. I have been on mn for a while and was shocked and a bit irritated by what hapenned on this post as all you asked for was some information. I understand why it is an emotional issue for people that have been through the mill with their babies but it shouldn't stop people asking for help and information and making their own judgements and decisions. Good luck.

Hi wendy, sorry your thread went wonky when your OP and title could not have been clearer as to what type of discussion you were after. I forgot to add to my post that there are some studies that CVS could cause amniotic banding. This is not at all conclusive, however.

In the end, as I stated previously, I decided to go with amnio over CVS even though a result that would lead me to terminate at that point (around 16 weeks with an amnio) would have been harder than deciding earlier in the pregnancy. Personally, I think it is great to have all of the information you can in order to make decisions and/or be as prepared as possible. Life can still throw you a curve ball but at least you can rule out worrying about certain things.

I think amniotic banding was associated particularly with early cvs which is why they changed the earliest date at which they would recommend it (used to do it from 8 weeks I think, although check).

Or is that bullying to pass on that information

Wendy, I haven't read all of this thread, but just wanted to reassure you that the likelihood is that all will be well.

I know this is an emotive topic but I have gone ahead with a termination following CVS. At my nuchal scan my baby was found to have Trisomy 13. This was confirmed by CVS, but in fact the CVS was done to check that it was a 'one off' occurrence as opposed to a genetic factor being involved. My point is that the 12 week scan itself revealed the problem. In the many stories I know of women in similar situations, generally (though of course not always) it is the scan that has highlighted the abnormality and further testing has confirmed it. So in your case, you do not need to worry unduly. I was 31 when it happened to me-odds were something like 1 in 850 that it would happen.

I hope the rest of your pregnancy goes well.

Hi Wendy!! Have just read thru all the info you've been given. It is fantastic that there is so many people giving you advice and telling you their experiences. However at the end of the day you and your pregnancy is completely unique and I think it would be really benefitial for you to speak to you genetic councellor, m/w or consultant to answer all your questions and deciding on the best way forward for you there is so much different info, it is easy to get it all confused

Hi Wendy, I had an amnio in my last pregnancy as I wanted a conclusive test rather than a 'risk' assesment. My bloods were 1 in 1200 at age 38, yet I still went ahead and had the amnio. I can't pretend I found it easy, and if I am totally honest I felt a massive amount of guilt afterwards, sometimes I still do. The results were fine and I now have a lovely little daughter!

I am sorry to read how judgmental some of the posts have been, it's one of the reasons I steered well clear at the time of my amnio because folk can be so harsh. You have to develop a thick skin sometimes to post on Mumsnet!

Oh, and I have to disagree totally with a post saying that down syndrome is a 'walk in the park' - in our family, our experience of down syndrome has been far from a 'walk in the park'.

Wendy, best of luck in your pregnancy, hope you are relaxing as best as you can and taking it easy!

Abidadboo: Thank you for alerting me to the research about the nasal bone. I got a 1/240 in the blood tests/nuchal scan but they didn't look for the nasal bone even though you can clearly see it in the scan photo. I feel angry that the NHS seemingly don't look for this and come back with the risk assessment which can, and has in my case, caused worry and concern. I feel reassured by seeing the nasal bone, and am going to speak to my midwife about this next week. Thanks again.

majormoo, that was my point with my doctor. She was rather pushing the triple screen blood test initially (even tho I was 41 ) and said, "But what if you get back a risk of something like 1 in 2000? Wouldn't you feel fine?"

Ummm, unfortunately no. I am a terrific worrier and someone is that one, so I do need to know.

gess, thanks for the information about amn iotic banding. No one seemed to know much about the risks when I was pg w/ds2

I don't see many judgemental posts. See lots of different experiences. Agree with kelmcd. You need to then take people's experiences and relate them to your own.

When did you have it jabberwocky? I read about it when I was pregnant with ds1 (9 years ago!) Although as I think they stopped doing the very early CVS before then because of the problems.

Incidentally geerkgrrl said that DS was a walk in the park compared to many other conditions- which is a little different from saying its a walk in the park, and was exactly what dh said when he came back to recount the story re the neighbour telling us about her daughter's termination in front of DS1. It's a valid view.

Sorry, I will clarify my earlier post - in our experience, down syndrome has not been a 'walk in the park' - and I disagree with the statement that it is a 'walk in the park compared to other conditions'. That too, is a valid view.

Barbamama, Jabberwocky, Pacinofan, Kelmcd, Majormoo: thank you all so much for your personal experiences & views which is of great support to me and I really appreciate your help. I will just laugh at and ignore the little "digs" from various folk who can't keep them to themselves and as I really don't wish to develop a thick skin, although this is an amazing resource, I think, for me personally, I will stay well clear of M/N for the rest of my pregnancy! At least it's not as bad as Yahoo Answers though!