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.

I had an amnio with my second pregnancy (just gave birth 5 weeks ago) and my son is a toddler and I am 39. I had it done on a friday in the am and took the afternoon off work and the weekend. I stayed at home and didn't do anything strenuous, but I don't remember worrying about whether or not to lift my son. The risk of miscarriage with an amnio comes from the hole where they poke through not sealing up and infection getting through to the baby. The risk of this is highest in the first 24 hours and decreases after that. My understanding is that there are pretty clear signs (fever, bleeding, pain, leaking) of infection so if you don't have them in the first 24 hours i wouldn't worry too much. I also paid for the Amnio PCR which was nice to have in advance, but probably not worth the money (i think it was £90). As it turned out, it takes a week (not 2 days) for the pcr results and 2 weeks for the normal results so the difference wasn't that great. Also, the woman who did the amnio was so positive about what she could see from the scan while doing it, that I really wasn't worried. I too was all ready to be angry at having to pay to get early results and "why couldn't the nhs just get them earlier?", but when I asked further it turned out that the Amnio pcr results are done in a different way and are not complete. In fact it does actually take the full 2 weeks to grow the cells to get the the complete results, so it's not the nhs, just the current state of biology. Good luck to both of you tomorrow.

Melly, do you know what you would do if the result was positive? If you would keep the baby regardless, maybe it's not worth putting yourself through all of this, especially with the risk of miscarriage. It does sound a scary procedure and I'm not sure that I would elect to have one, but then I would probably keep the baby no matter what. I hope all goes well for you whatever you decide, and that you go on to have a healthy baby!

Melly & Bundle - hope everything went fine yesterday. I've had two amnios, and after both I felt some discomfort, a bit like period pain, during that day, but nothing else. Then I stayed at home for the rest of the day, watching TV etc. I think Sofia is right, and that if you are going to miscarry, it will happen whatever you do, the advice to rest afterwards is just for your comfort.

I had the preliminary results back after about 36 hours, but I understood this was a relatively new technique they were using, just looking at 3 pairs of chromosomes. Then the full results were confirmed a couple of weeks later. Anyway, hope both of you are feeling well.

Thanks for all the good wishes. Have been good and rested for 24 hours in bed and now just "pottering". Dh has been great and I haven't had to worry about lifting dd at all. Amnio went ok and so far so good. Am now just worrying myself over the results, which I suppose is inevitable, like SofiaAmes says, the PCR results actually take nearer to a week to come through rather than the 48 hours they state.
Are you are doing ok Bundle, thought about you yesterday and hope that you are feeling ok and taking it easy.

Bundle, Melly, how are you both doing - hope all is well with you?

Hi Marina, it's really nice of you to ask because I remember you have recently been through a very difficult time. I am fine and actually rang this am for my results - I just couldn't contain myself any longer. Good news, all is well, I know there will be the back up result to come in about 2 weeks but I certainly feel optimistic having had the all clear from the amnio PCR.
I'm hoping that Bundle has had good news also.

What a relief for you Melly! Now all we need is to hear similar from Bundle.

Bundle, any news, sorry to hassle, just concerned and have been thinking about you. Hoping to hear good news from you soon.

hello everyone. thanks for thinking of me. Like Melly, I got the all-clear on the PCR results - so there's no Downs, Edwards or Patau's syndrome(amnio Thurs, results Monday 4pm...how long can a day last!!!???) so just have to wait for those cells to grow. Spent the rest of the week off work with dd in nursery and rather indulgently going to cinema with dh, eating too much ice cream
The amnio itself was fine, my consultant was very kind as well as really professional. The scan she did before/during the amnio was very detailed - Edwards babies usually have crossed-over fingers and she kept saying what lovely hands my baby had! and it was fine size-wise (Edwards babies are small for dates). she's also booked me in for her own clinic for my anomaly scan this week at 19 weeks, because the normal sonography clinic couldn't fit me in till 21 weeks. Glad to bring you good news and I'm really pleased that everything is looking good for you too, Melly.

Phew, that is good to hear, Bundle. Hope all continues to go well for you!

That's brilliant news Bundle, I'm so pleased for you.

Just had my nuchal scan today and got a score of 1 in 254. This is apparently the best I could have got for my age (40)so really it is a very good result. But for some reason I'm much more worried about Downs (and other chromosomal abnormatilites) this time than I was with dd so have booked an amnio anyway. I feel completely split down the middle about whether I really want one (terrified of having it, terrified of not) so thought I could spend the next few wks thinking about it, then cancel if I don't want to go ahead. I'd really appreciate any advice/views from others who may have been through the same dilemma and especially any experiences of the Harris Birthright Trust which is where my appointment is. Friends have told me that the miscarriage rate there is lower than national average of 1 in 100 but apparently they still have to quote the national figure (while laying it on with a trowel about the risk as far as I can judge from this morning). Has anyone else heard the same?

I had a nuchal scan (age 42) and had a score of 1 in 300. This sounds low, but since the age related odds were something like 1 in less than 100 without the scan, I felt it was actually very good. We dicided against the invasive stuff based on this result and DS2 is now a happy, healthy 14 month old.
Good luck with whatever you decide to do.

Article on tests in Practical Parenting (Dec 2002 issue) quotes re CVS rather than amonio: "The miscarriage risk is 1%, with any miscarriage occuring within 5 days. The rate of miscarriage, however, depends on the expert performing the procedure: Professor Kypros Nicolaides, at King's College Hospital's Harris Birthright Trust, says the rate of miscarriage becomes just 1 in 300 in his hands."

The paragraph on amonio mentions again that the risk depends on the skill of the doctor.

I went to Harris Birthirght for my nuchal scans, and I have had 2 friends who have had amnios there. It is a great place, and a true example of excellence in the NHS. The only drawback, is that because they do their job so well and thoroughly, and give you all the counselling etc that you need, appointments do tend to over-run - up to 4 hours is not unknown. That said you will always be seen.

Harris do advise further tests for anyone with a risk factor greater than 1 in 300.

Good luck with your decision and the rest of the pg.

It might be worth getting PP this month - they also mention a new non-invasive test known as the integrated test - combines a nuchal scan plus blood est at 10-13 weeks followed by the quadruple test at 15-16 weeks - picks up 8/9 out of 10 babies with Down's and 4/5 of those with a neural tube defect.

The Harris has an international reputation, Jodiesmum, so it's very likely that the quote MiriamW found is true. Not sure if all amnios are done by the Professor himself, however. It must be one of the least risky places in the UK to have the procedure because the staff there are already specialists in the UK or their home nation. Good luck, hope all goes well for you.

Yes I went to the Harris Birthright Trust for my nuchal scan and thought they were great. They offered further tests, but we didn't get the impression that they felt that we should have them - and as I said below, we didn't.

Had dd2 at age 40 so was "told" I would be having an amnio. I said no, I will decide after non-invasive test. Nuchal scan at 10 weeks showed nothing wrong and blood tests came back negative risk (as they put it). Obviously realised not a guaranteed result but did not want to take even smallest risk of m/c so did not have amnio. In my case, I would not have chosen to terminate anyway so academic.

Thanks everyone for the good wishes and thanks MiriamW for the info on Harris - that's just the sort of thing I was hoping for. WIll definitely get a copy of PP and read up on other tests but our thinking as this minute is that we will go for the amnio (though still have 5 wks to go to the appointment so will probably change our minds ten million times before then.

Jodiesmum, i agree the advice you get is conflicting and confusing. My consultant at the Whittington quoted her own miscarriage risk - about 1/200 (maybe it's hers, maybe the hospital's, she did mine both times). I weighed it up by thinking about the risk I had of the baby having a chromosomal abnormality (this time it was 1/30 for Edwards syndrome) and me being able to live with uncertainty in a vaguely sane manner (0%!!!!) - so it's very personal. I'm sure whoever is booked to do yours will talk all of this through with you first - and exactly what will happen in the procedure. I have a friend who miscarried (a health baby) following amnio, so didn't tell her about my decision to have one both times until I'd had them. Before you have it, I think it's a good idea to know what you'd do if you did get a 'bad' result - would you opt for termination (I would have)? or carry on with the pregnancy? obviously lots of people do decide to carry on regardless of the results but I think it's good to talk it through with your partner first so you both know where you stand. good luck

My DD had soft markers for Downs Syndrome, we declined the amnio on the basis that we would have carried on with the p/g regardless of any special needs she might have and I was not prepared to risk losing her- she didn't have any special needs but we did spend that p/g worrying about her. The miscarriage with amnio rate does differ greatly between Consultants as people have said.

Next baby I didn't have any blood tests etc. as I I wanted what to me was a less stressful p/g - it's like others here have said it does depend on what you would do with the information you would get from the amnio and whether that action is worth the risk of losing your baby - a very individual decision and a very difficult one.

The crucial advantage of having an amnio is that is does give diagnostic information about chromosomal abnormalities - not just a nebulous probability. I feel a lot of people are persuaded into the non-invasive tests, because there is no risk to the baby, only to find that they don't know what to do with the information they've got - it doesn't rule anything in or out for definite. If you choose not to go for an amnio after a 'positive' nuchal or whatever, then you have a very stressful pg worrying about the baby.
With ds, I felt I couldn't knowingly put the pg at risk, knowing I might not have another chance. HAving ruled out having an amnio, I opted against all the non-invasive tests precisely to avoid the possibility of having to spend the pg living with a 'positive' result. However, if I were in a different situation, and very much wanted to know whether the baby had a chromosomal problem, I think I would consider going straight to amnio rather than having the non-invasive tests - because a negative test isn't absolute either.

The other thing I always bear in mind,is that however many tests you have, a healthy baby is not guaranteed - ok, it may not have down's, but there are lots of other problems which cannot be tested for, or your baby may become ill later on. If you can accept that, then it may help to put other risks like Down's into perspective.

It is a not a nice thing to have to think about. I know I enjoyed my pg much more once I had made my decision.

I had a nuchal scan at the Foetal Medical Centre in London, it's linked to Dr Nicholaides I think. It was probably one of the worst things that I've done. The scan came back with a 1 in 1500 risk. Delighted, dp and I went to sit in the waiting area for the blood test result. When this came back we were told that there was now a 1 in 254 chance, at 32 this was high risk. We were shocked, and the doctor we talked to said that we could have a CVS the following week and terminate the week after if we wanted to. We left there jibbering wrecks. Having spoken to my midwife she made an appointment to see a consultant at the local hospital. He said that a 1 in 254 stat was kind of meaningless and didn't really mean much. They didn't usually look at women unless their risk was greater than 1 in 250. We decided to have the amnio to be sure, but were advised to wait a few weeks before having it. Although those weeks were awful, I'm glad we had it done as I think that I would have worried throughout the whole pregnancy once the doubt had been placed in my mind. Dd is perfect and is now 9 months old. I don't know what we'd do next time around. Is ignorance really bliss? Good luck with whatever you decide, I'll be thinking of you