Amniocentesis

[Richie]

Hello fellow mumsnetters!
Anyone able to kindly give me their views on "how worried should one be, regarding the risks of having an amniocentesis? i.e. miscarriage risk?" (Appreciate it's only about 1%, but can't help thinking - what if????) Any advice on how to minimise risk? And help/advice regarding having the actual test, which is a terrifying prospect! Any info out there that can help?
As always, I'd be eternally grateful for all your views/thoughts/help.
Thanks in advance.......

[Fimbo]

Hi Richie,
I had an amnio about 2 years ago now and have a happy, healthy 18mth old son. My local hospital had a dedicated professional (sorry don't remember her exact title - but she was formerly a midwife before doing this role) who we had an appointment with after the initial screening tests revealed my baby may have had ds, she was also available to call prior to having the amnio, perhaps your hospital has the same type of person? She was a great help to my husband and I. The Dr peforming my Amnio was extremely nice, my dh & I sat the night before and typed out a list of questions that we wanted to ask her, because I knew as soon as I went in the room I would forget. This was also a help to us. After having the test, I basically sat on the sofa for the next 48 hours and did nothing whilst my dh looked after me. My dr did say that the first 48hrs afterwards are crucial but it takes about 6 weeks to be sure that you are not going to miscarry. My dh was also granted compassionate leave from work so he could be with me, as I was very frightened about being alone in the first 48hrs incase a miscarriage started it.HTH. Good Luck

[Blu]

Richie - sorry if I have missed the background to this on another thread - can you point us to it, or fill in a little more detail? Like why you are considering amnio?

I did have amnio because of a combination of 'soft markers' which showed up on the 20 week scan.

As far as I understand it, the statistics can actually vary according to the particular person doing the test. I asked when I would know whether the test had caused a problem - i.e how long afterwards I would have to worry - and she said she would know straight away, because they can see whether the needle has accidentally gone somewhere it shouldn't. But I have since heard that people have had problems afterwards that ewren't obvious at the time of the test - or maybe bot admitted at the time??

I don't think there's anything that you can do to affect the risk - perhaps insist that a v experienced person does it, who has a good 'track record'?

It was moderatley painful - the needle going in - and I had a mark and bruise afterwards.

[tamum]

I agree with other posts- have a rest afterwards, and check the credentials of the person doing it. I think the 1% rate has been given for years (certainly the last 15 or so), and at that time many people used to do amnios without simultaneous scanning; add in the risk of miscarrying spontaneously anyway and it becomes rather better odds IMHO. I think the pain varies enormously- I found it pretty well pain-free.

[jabberwocky]

When I had mine the doctor discussed the risk of having a baby with genetic problems at my age (37 at the time) vs. the risk of miscarriage and said that since the risk of problems was higher than the miscarriage it was worth considering. I was actually surprised at how uncomfortable it was. The needle did not really bother me but extracting the fluid created a funny pressure type of pain that I did not like at all. However, the peace of mind that I got from a good report made it all worth while to me.

[Thomcat]

Where do you live? Can you get to the Fetal Medicine Centre in Harley St? If so, go there.

[SofiaAmes]

I had an amnio with my second pregnancy even though my nuchal scan came out just fine. I did a lot of research and it seems that in fact the 1% that is quoted (they quote .5% in the usa, by the way) is really a very rough figure that takes all amnios into account. My understanding was that in fact most of the problems happen if the amnio is done too early in the pregnancy. Also, don't forget that many problematic pregnancies can spontaneously abort, and therefore some amount of the miscarriages attributed to amnios may in fact have happened anyway. I was very nervous beforehand, but found the whole process very simple easy and painless. AND you get a really awesome scan while they're doing the amnio and if you do want to find out, you can know the baby's sex for sure (I was thrilled to find out 20 weeks into my pregnancy that I was having a girl as I had already been buying pink clothes for weeks and was a bit worried that I was going to have a boy in drag).

[geekgrrl]

Richie, I've not had an amnio but I have had a CVS. Make sure you get it done at a large teaching hospital or where Thomcat said. My CVS was done in Leeds at the LGI, by Yorkshire's answer to Prof. Nicolaides (can't remember his name though, it's been over two years, but he is well-known here as the fetal medicine expert for the North). He also did a nuchal and a nasal bone scan beforehand.
Anyway, he told me that the miscarriage figures are the total loss figures, so include those that would have occured anyway.
Ask your consultant how many procedures he performs and what his loss rates are - my consultant had something like 1 in 300 loss after amnio (when the test result was normal) and 1 in 150 after CVS.
Of course those figures are good - but someone has to be the 1 person out of 300, and you have to consider that it might be you.
Lastly, do make sure you know something about the main conditions they are testing for, and not just information gleaned from a leaflet you read in the waiting room, have a look at the Down's Syndrome Association's website , that sort of thing, so that you can feel you are properly informed about the decisions you make during this pregnancy.

Pain-wise, the CVS didn't hurt, I had a bit of bruising and cramping for a week afterwards which was uncomfortable.

Good luck and enjoy your pregnancy.

[fifilala]

I had a lovely doctor who did the test - we had only just got back from hols and we had a letter through the door (the midwife was aware of my needs following the blood tests)The test itself was painless and quick, an ultrasound at the time tols us that it had gone ok.

I went straight to work afterwards, my doctor said that doing normal things did not increase the risk of miscarriage, and also it took my mind off things.

[Blackduck]

Ask what his/her 'success' rate is -
You need to weigh up the what if I miscarry against what would I do about a positive result. I had a friend who would never have terminated, so pretty pointless to go through the test adn risk the miscarriage. The guy who did mine was wonderful. He asked loads of q's before he started to check we had thought it through, then he scanned for position of baby, midwife held scan whilst he inserted needle (weird stabbing pain down into bladder), and then he got me to check the position of the needle so I could see it was no where near ds. Had afternoon off and went back to work next day.

[gallileo]

Richie just wanted to say I and many others know how you feel, it is a terrifying thing to go through. I had an amnio just over a year ago and now have a wonderful healthy ds. I was advised to take things very easy for at least 48 hrs which I did, spent much of the time in bed. The guy who did my amnio (it was at the Rosie hospital in Cambridge and they were fantastic) told me that risks are minimal after 48 hrs have passed. I must admit though that I didn't stop worrying about the m/c risk until was about 35 weeks pg Although it is well known that practitioners who carry out the procedure every day have a much better success rate than those who don't, in my experience they would not discuss or disclose an actual 'success' rate and were keen to make me aware of the risks, however small. I think that is NHS policy.

[PeachyClair]

I ran away from my amnio two years ago because I was scared of the risk, and decided a baby with Downs would be better FOR US (it's an individual choice) than losing a baby. Harry was born without Downs, byt ultimately it was the right decidion for us. I'd say get as much info as you can on your consultant, tell your midwife and the one in the amnio unit how you feel and listen to everything they say, then go with what your heart tells you. The chance is minimal, but because it's there you need to be sure.

Good luck!

(ps my situation was exacerbated by the impossibility of me resting with two lads under 3, one with Aspergers)

[Blackduck]

gallileo - I asked how many he had done (or how often he did it) and how 'successful' he was (can't remember exact phrase I used....He said ALL women should ask such questions.....and he answered them...

[Thomcat]

I have a little girl with Down's syndrome. I'm pregant again. I decided I wasn't having any tests this time round. However, DP didn't feel the same way. I had a nuchal as a comprose thinking I could stop there. Had an awful few weeks, peopl saying all sorts, thinking all sorts, no-one really knowing anything. Phases liike 'I have to say it doesn't look good, i'm sorry'. I wasn't happy but made on spot decision that I would have a CVS. he did it on the spot, no going home and making another appt, he did it there and then so i had no time to mul it all over. It was all awful. I hate testing, it's so worrying. However the results came back that everything was ok. I suddenly realised, very clearly how it can be so important to know, one way or the other. i still wish that testing didn't exist, i wish i hadn't gone through any of that, but it does exist and once i'd started on that road i couldn't stop till I knew. Ultimately I'm glad I did it.

Good luck and lots of love to you.
TC x

[geekgrrl]

same here - Gerald Mason (I've remembered his name, hurrah) was very upfront about the figures and asked me to let them know the pregnancy outcome for their auditing purposes.

[gallileo]

Thomcat just wanted to say congratulations to you! You were so helpful to me when I was considering my amnio last year. Sorry to hear you had so much trauma with the testing, delighted to hear all is well.

[Thomcat]

Thanks gallileo

[hester]

Richie, just wanted to say good luck