Experiences of Amnio - anyone had one?

[rosyleecupoftea]

I'm thinking of having an amnio as my nuchal fold scan/bloods did not show as low a risk of Downs as I would have liked. Also its my 4th baby and one that dh didn't really want to have - I had to really twist his arm. And I'm 38. So all these factors together mean it would be good for dh and me to have a definitive answer as to the state of this babies chromosomes.

However I feel apprehensive about the procedure and wondered if anyone had any experience of it. I'm 13 weeks pregnant so still have a few weeks to make a definate decision about whether to have it or not. Also how long does it take to get the results? Any advice would be gratefully received.

I went for an amnio after a triple-test came back 1 in 4 for the really scary one they don't mention beforehand (Edwards anybody?). So would've been about 17 weeks, and after crying for 2 days waiting for scan and amnio we paid something like £40 to get results in 48 hours. Which was a gamble as was flying to family wedding when results came through - not sure what I would have done if it hadn't been good news... Equally though I think standard return time was 2 weeks and couldn't have waited that long.

Procedure was straightforward if scary. Scariest thing was watching (still ridiculously grabby DS) hand reaching towards the needle, so you may want to have the computer screen out of your eyeline . And following few days were a bit scary too, checking knickers and loo paper for spotting (and giving myself a huge scare until I realised that the hotel loo paper had a faint pattern on it which only showed up when wet - wtf was that about?).

But all fine - hooray - and just one of the reasons I'm not doing this again

I had one with dd1 and all was fine, with the procedure at least. It did hurt, esp when the needle entered the uterus, but was very reassured by seeing baby on screen a safe distance from needle. I did have quite bad period-pain type cramps after, but was told this was normal, and they did settle down.
I had done my research and asked for FISH analysis (fluro-in situ-hybridisation) that sort of paints the chromosomes with flurescent markers, showing up the the most common chromosome abnormalities. I was so glad I asked for this (no-one had mentioned it) as I actually had a culture failure with my full sample, hence never got a 'true' karyotype. Just something think about - if you just have the regular analysis, there's a 1-5% chance of culture failure, then you face the trauma of going through it all again.
As notreally says, def worth paying for fsat results. The procedure is nothing compared to the waiting after! Best of luck to you; I'm sure all will be fine.

hi there
I had one with first DD (when I was 35). I dont know whether you would be planning it on NHS or private ? My advice would be to (if possible) go somewhere where they perform them frequently and are experienced at it (obviously easier if private). At the hospital I was at they were not done that often and therefore the procedure was not as quick or as painless as I think it should have been. The consultant performing it also made it clear that she felt I shouldnt be doing it - which wasnt helpful as you can imagine. As a result this time around I decided that if i needed one (or a CVS) I would chose where it was done more carefully (luckily nuchal/bloods better this time aged 39 so didn't go ahead).

I had no problems after the test and we paid (approx £150 i think) to get prelim results back 2-3 days later which was a great relief (and good in hindsight as they mislaid my main results in the NHS hospital and it was nearly 3 weeks til i got them). I am still glad i did it as personally the stress would have been too much for me if not, but of course the bottom line is whether you would act on results or not (and how high your risk levels are - fyi I had a really good nuchal (privately) and then high risk NHS triple blood results 3 weeks later which is what sent me into a panic).

As you are only 13 weeks it might be worth considering a CVS instead if you did decide to go ahead with further tests as it can be done earlier? Although as you say, the amnio gives you a few weeks breathing space to make a decision.

hth

I had an amnio with ds due to my triple test results. A midwife turned up at my house one Saturday morning to discuss my triple test results then I went for the amnio the Monday after. It didn't hurt but felt odd when the needle when into my uterus. The 3 week wait afterwards was very scary but in the end he was fine & we knew for certain I was having a boy which was a surprise as I was convinced I was having a girl. Good luck whatever you decide

Thanks, thats helpful. How did you find out about FISH? Was it via the internet?

I'm having one tomorrow. We have a higher than normal risk of downs syndrome and made the decision after speaking to our consultant.

Our hospital turns the results around in 48 hours on the NHS (at least, they do when it's not a bank holiday). With the bank holiday we have to wait five days.

If I had to wait 3 weeks I'd pay extra.

Everyone says it's painless but I'm not expecting it to be.

Good luck and hope you can decide what to do between you.

Good luck, hope it goes OK

thanks - I'm not looking forwrd to it, obviously, but it's the right thing for us to do.

The consultant said "would you ever get over miscarriage at 17 weeks?" I replied that it would be terrible but yes, perhaps one day I'd get past it.

He then said "would you ever get over having a DS baby?" and I said "no, never".

There was no decision to make, really. Not everyone feels the same but this conversation was very helpful when I was trying to make up my mind. In any case, our risk of DS is higher than the risk of miscarriage. That statistic sort of helped.

Mogwai can you let me know how it goes and what its like? For me its a hard decision whether to have one as my risk of downs is not higher than the risk of miscarriage. But dh (who is a doctor) really wants me to have an amnio and really doesn't want to have a baby with downs. I feel more open minded about the whole thing but obviously as a family it would be much much better for us not to have a child with a disabilty that would potentially take up alot of our (particularly my) time and greatly affect our other children. Think I've probably just talked myself into having the amnio.

I kind of wish I'd never had the screening and just gone straight for the amnio, then I wouldn't have to keep weighing up the odds, risks, percentages etc.

Hi Rosy, re: FISH I actually read about it in Practical Parenting mag of all places, but think it's a fairly well-established form of analysing fluid now so should be lots on the internet.
One thing I wish I had done was to think more about how I got the results. The midwife said I'd get a phone call, probably in the evening after she's finished at the hospital, and as a result I was a nervous wreck every time the phone went for weeks. I think that particular hospital now ask you to come in to get the results, either way, which seems better IMO.
Good luck with it all. I opted out of all testing this time, even though I am older, having done the lot from nucchal to triple to amnio with my 3 dds, but I do remember how difficult a time this is.

I had amnio done with my last 2 babies.
The procedure itself was very straightforward and not painful at all. I went to bed once I got home and stayed there all the next day too as a precaution.
FISH was offered by the hospital so got some results back after 3days.

I wasn't asked if I wanted the results back quicker than 3 weeks so I don't know if everywhere will let you pay to get quicker results. I was told I would get a phonecall if everything was ok or a home visit by a midwife if it wasn't. Can't tell you how relieved I was when the phone rang & it was someone from the hospital on the other end. I was so relieved she had to guess that I wanted to know the sex of the baby as I couldn't form a coherent sentence to ask. I don't know how I would have felt if I'd had a knock at the door instead. We're currently ttc & I don't want to have any screening next time as my whole pregnancy turned into a nightmare due to problems mainly linked to the triple test. dh doesn't agree so will have to discuss it when the time comes.

Hi Rosy

By coincidence, my dh is also a doctor. He was more relaxed about the statistics we were given as he deals with risk all the time as part of his job, whereas I was just adamant that I didn't want to have a child with DS.

I work with children and have worked with many DS children and seen what the families can go through. I know of people who felt they could cope if they had a DS child and opted not to have any tests (or to have tests so that they were forwarned) but the actuality of having a DS child was harder than they had thought.

As with many things, there is a huge range of ability in the DS population and you just have no guarantee about how severe the problems might be. My opinion through experience, not everyone would agree though.

I actually had my amnio this morning. I was very nervous about (a) potential pain (I'm not great with needles or pain) (b) complications. DH gave me some co-codamol about 20 mins before the procedure.

The sonographer lay me on the bed and had a look at the baby. She asked me if I wanted to see the screen and though I wasn't sure beforehand, I realised I didn't want to see the baby today. DH didn't feel the same (and on another level I don't think he'd ever seen an amnio performed before so probably had professional interest) so he actually watched.

First she checked the position of the baby/placenta and then had a look at the uterine wall to see whether it all looked "glued down" as she put it. Then she went to get the consultant and when he arrived she put a straw onto my stomach and applied some pressure to make a mark where she wanted the needle to go. The pressure of the straw was worse than the needle, actually.

The consultant put some cleaning gel on my stomach and positioned the needle just below my belly button (the position of the needle obviously depends on position of everything else - sonographer said it's more painful if it's closer to the cervix due to increased number of nerve endings). The needle honestly didn't hurt (I find blood tests painful) and I couldn't tell at what point it entered the uterus.

He showed me the fluid while it was still in the syringe (I didn't actually look though!) and then pulled the needle out (also not uncomfortable) and that was it. The sonographer had another look around and said everything looked okay (including the heart). Consultant said he was very pleased with how it had gone.

I was allowed to leave right away. They gave me some phone numbers to ring in case of spotting or loss of fluid. The results for DS will be available on monday afternoon and the full culture will be available in 3 weeks time.

Felt a bit faint afterwards and a bit tearful but think it was a combination of relief it was over and the effects of the co-codamol. I'm now at home resting (with the laptop, obviously!) and just keeping everything crossed. The statistic we were given was 1/168. We now also know the baby has a nasal bone and the heart looks okay.

Hope this is helpful

I had one with DD2 as I was 40 and I knew that I wouldn't go ahead with pregnancy if there was a genetic abnormality.

Second the advice to go for someone who has done a lot of them. I asked the midwife or registrar at previous appointment specifically and got an answer I was happy with about the doctor's competance.

I think the co-codamol is a good idea, as I found that it was a little painful, but it was over quickly.

Not too traumatic, but I needed to rest after. It meant I didn't worry so much for the next 23 weeks though....

bumping for Rosy

I had one with each of my two boys. The first time I was a bit crampy afterward and the procedure itself was rather uncomfortable. Second time it didn't bother me at all either during or after. I think it does depend a lot on the skill of the practitioner. A lot of people were surprised that we went with it but I was 38 with the first pregnancy and 41 with the second and just really wanted as much information as possible. The first time I didn't know about FISH and it was a long, fretful wait. Second time even waiting 2 days was hard so I can't imagine having to go the full 2 weeks. I was so glad to have heard of FISH on MN

this is true, of course Riven, and even if we get a clear amnio result back then this doesn't preclude other issues such as CP, autism.

However, it reduces the chances of us having a disabled child. With a 3 year old daughter to consider, we'd rather use whatever means to reduce the chances, even if you can't eliminate them.

Personal choice, of course.

I had an amnio in both pregnancies. It hurts like a bitch, but it's worth the peace of mind a clear result brings. (Who are these people who claim a 6-inch needle going into your tummy is "not painful but just a bit uncomfortable"?!? )

Regarding how long it takes to get the results. Most of the UK should offer either FISH or PCR to get a quick result in 2-3 days (ie. the London area uses PCR). These tests will only pick up the most common chromosomal problems eg. those leading to Downs, Edwards and Patau's syndrome. In many areas these tests are done as standard and you won't need to pay extra for them.
The cultured result (karyotype) looks for other chromosomal problems and in the London area (and a couple of other places) will only be offered if the baby has had a problem seen by the ultrasound scan (eg.a large nuchal measurement). Most parts of the country will do both tests though. The culturing of the cells takes 2-3 weeks.

I honestly didn't think it hurt, you know. I mean, last time I had blood taken from my arm I actually cried with the pain.

This was nothing in comparison. Perhaps depends on the skill of the person doing it??

Well hand on heart I can say that my 2 amnios didn't hurt at all. In fact, apart from the initial pushy feeling when the needle touched the top skin, I never felt a thing.

Another one here who had no pain with the needle going in. The only thing that bothered me was on the first amnio it seemed like I could feel the fluid being drawn out iykwim and I didn't like that at all. The second time was quite honestly a breeze.

My amnio didn't hurt either. I was expecting it to having seen the needle but it just felt a bit odd when the needle went into my uterus. Wasn't painful at all.

Thanks everyone, its very helpful to hear of other peolpes experiences, especially as they seem to be mostly positive.

Have decided that I'm going to have an amnio and feel better having made that decision. The local hospital does lots so I'm confident that the consultant would be very experienced. Don't know about FISH/PCR yet but plan to pay for it if its not available on the NHS.

I know a normal amnio doesn't necessarily equal a healthy baby, but most other things are impossible to test for. As Jabberwocky said we would like to have as much information as possible. If it was my first baby I would probably feel differently.