Ive now got 4 weeks to make my decision, amnio or not? How did you decide?

[nosleepwithworry]

I have pretty much made up my mind to go ahead with the amnio.

Lots of reasons, but dont know anyone who has had this.

We have spoken to the specialist midwife, know of the risks etc, but still feel awkward and unsettled.

What got you through? What were your thoughts on the lead up to the amnio?

What about after, were you sore? How long did you take off work?

Sorry for the million questions, just need to talk to some one who has been where i am going.

Thanks xx

Ok I had an amnio at 16 weeks (now 31 weeks) due to bloods coming back with a risk of 1:71 of Downs. We decided to go ahead with the testing as I didn't want to spend the rest of the pregnancy wondering. I was very worried about the procedure but was reassured that the person doing it was the expert in this part of the country.

Procedure was very quick & a bit painful but not as horrendous as I'd imagined.

I was advised to rest for 24 hours after the procedure so had booked the next day off work. However when I went to work the day after this I had a few stomach cramps so went back to the anti natal clinic & was advised to go home & rest for the rest of the week. I also had a nasty allergic reaction to the antiseptic used on my stomach.

Sorry can't remember what else you asked.

I had my bloods done at 12 weeks and came back with 1:50 risk.

I decided not to have an amnio. The reason being was I wouldn't have aborted anyway so to me it seemed pointless risking a mc to find out something I would find out in a few months anyway. Plus I asked for a more detailed 20 week scan instead.

I had one at 15 weeks, I was dreading it, imagined it would be really painful (i read too much on the web) and also terrified about miscarriage so was a bit of a wreck before the proceedure. The actual proceedure was quick it actually feel much at all- it wasnt painful or even uncomfortable. I had it on the tuesday but took the rest of the week off and got the results on the Friday. I didnt have any particular pain or cramps just worried myself silly. Hope yours goes well.

I had one because there is a history of spina bifida in my family. There was no real question of me not having one because I wanted to know one way or the other as soon as possible.

As regards the run-up, I can honestly say that I hardly thought about it. It had taken five years for me to even get pregnant and then I had bad bleeding in weeks 13 and 14, so by the time the amnio came round in week 17 or so, I had pretty much got to the stage of "what will be, will be" and was entirely relaxed about it.

I have pleasant memories of the amnio itself. The doctor was very concerned to put me at my ease and spent ages looking at exactly where DD was and examining her and pointing things out. Then, when the anmio was done, the ultrasound image was projected onto the ceiling above me so that I could see it all happening - and DD even waved at the needle!

I remember having to rest for quite a while at the clinic afterwards, but I don't remember being sore at all. I was signed off work for about two weeks, but I am not sure what is standard. It may have been more for me as the pregnancy was high risk and my blood pressure was through the floor most of the time.

Without wanting to sound patronising, I think my advice to you would be to try and remain positive about your decision. The likelihood of everything going swimmingly far, far outweighs the risk of something going wrong.

Best of luck

xxTRQ

Hi Nosleep

I am familiar with your story from a couple of other threads and completely understand why you are contemplating an amnio.

After my 12 week scan, I was given a risk of 1:112 for down's; this is classified as high risk, but is a slightly better risk than based on my age alone (which at the age of 40, is 1:85 I think)

I was booked in for a cvs, with a view to not going ahead at the last minute if I didn't feel comfortable. After speaking with the consultant (at a fetal medicine centre), they recommended going for the amnio instead due to the position of the placenta (this would reduce the risk). This is booked for the end of next week (with the option to not go ahead if we change our minds)

So nothing terribly helpful to tell you, apart from I am still going through the decision-making process, and whilst the docs can't make the decision for me, they have helped me work towards my own decision.

My appt is on a thursday, and don't plan to return to work that week, so will have 4 days to recover including weekend. I am worried about potential pain afterwards as tend to worry about most things anyway.

Good luck with getting information and reaching a decision - it really is not easy!

Ahh thanks everyone.

eagleray it seems that i have some great friends following my story, so nice to see you on here xxxx

Im not worried about the actual procedure tbh, i am confident that the skills of the sonographer are sufficiently high enough to ensure that it wil be safe.
There are only 2 that do it at my local hospital and they do them week in week out.
They had NO miscarriages last year at all.

I am worried about the results.
We have just come SO far, its a miracle we have got to 12 weeks, it truly is.
I know that we would abort if abnormalities were proven.

Oh God, its so hard.

Sorry I know a lot of your questions are directed at people who have had the amnio and I can't help there. If this is what is right for you then you go for it, you are the only person who can choose - but you asked how I decided so here goes:

It completely depends on (a) what your prob from bloods is (b) how certain you are to abort if the amnio comes up positive and (c) how easy you think it would be to conceive again.

My risk from bloods was 1 in 200, which was considered by my HCPs as relatively high, though not massively so (they consider it high at 1 in 250). I didn't have the amnio though. My understanding was, that if you had 200 women in my position (with the same probability) then one of those 200 would have a baby with downs, the other 199 would not. However, if all 200 had the amnio, then 2 of those 200 women would miscarry as a result - almost certainly these 2 would not be the one whose baby had downs - as I was already in mid-30s but from a family with some history of early menopause, and not certain of how much longer I would be fertile for, I perceived the amnio as basically tripling my risk of tragedy.

If my risk had been 1 in 10 I think my decision could have been different - in that case in this group of 200 women, 20 would be carrying a baby with downs, so the additional risk of provoking a miscarriage is less dramatic. I think I would have gone for the amnio then. Even so - that is still a 90% chance of all being well, and if I was unlikely to successfully conceive again I might just take the chance and hope for the best.

Oh I didn't even notice at first that it was you nosleep - I have been a delighted reader of your what the jeff thread elsewhere and I understand your anxiety better now.

Isn't there another test, other than the amnio, that you could use instead? I'm sure I've read about another test where they find tiny fracments of the baby's blood that has crossed the placenta within your own blood, and test that. Pretty sure it's not available on the NHS but might be privately. Worth looking in to perhaps?

My risk after a full nuchal screen was 1 in 250 which not deemed high risk but because I eas over 40 the nhs hospital booked me in for amnio. (had nt privately). I agonised, rang up arc, talked about til blue in the face but still didn't know what to do.

Don't know your risk but mine relatively low so just went on gut instinct in the end. Turned up for the amnio, just did not feel right so went hpme! Baby was fine.

Whats your instinct?

Thanks elephants, your reasons are interesting and help me eliminate some aspects.

Ive had no bloods, this was purposeful, i do not want probability, i want definitive answers. Amnio guaruntees this 100%.

I am 42, we would not consider concieving again.
This is our last and final attempt. (very complex background..got a thread going "Holy mother of crap" on the miscarriage board)

After 7 miscarriages and being told by the reoccurring miscarriage experts that the cause of my miscarriages may be chromosome related (they genuinely did not know what causes me to mc) i feel i have a higher than average chance of prorblems. This is regardless of any tests.

Thanks, this is really helping me work it through in my head.

hmmm and wagon wheels are NOT helping me with this!

I hope whatever you decide to do, it all works out for you as you want.

We had a 1:45 risk given with DD so went with the amnio, as we were due to move abroad and needed to know either way basically.

Not too painful. Consultant did loads and said he thought the risk was low for miscarriage when done with new fine needles, better ultrasound etc. He also suggested that he thought those babies that did go on to miscarry were probably more likely to be the ones with abnormalities.

Had it on a tues, took rest of week off as in very physically demanding job. Panicked throughout, with lots of crying and winding myself up. Got most results within 48hrs, all fine:o though she did decide staying inside was overrated and popped out at 34wks, under 4lb! DD 8 now and one of 3lights of my like :)

I think the important bit to remember is why you are doing it and whether the results will affect your decision to continue or not.

Good luck,x

I am also considering an amnio, to be carried out at 18 weeks, the decision is not hard for me as it's not testing for downs but for toxo infection. If the amnio shows my infection has passed to foetus, I will need to take a certain combination of drugs to treat baby. So I want amnio so baby can get treated ASAP. Wouldn't consider termination unless scan shows lesions on baby's brain (maybe not even then). Apt for amnio and scan is almost a month away but I am already petrified thinking about it. Think miscarriage risk lessens considerably depending on doctor's experience. I have googled extensively and the consultant doing mine seems to be one of, if not the most experienced at antenatal testing in general in my country, which I'm taking comfort from. Have you researched your doctor?

I had an amnio as was 1-4 risk for Edwards. Was a no-brainer for me as I figured a definite result was the only thing that would stop me sobbing. All a bit terrifying, especially watching Ds's hand reaching out to the needle on the screen... He's still got his hands into everything at 8yo if that helps?!

Hi nosleep just saw this thread and thought I'd share my experience.

I'm 44 and currently 35 weeks pg with dc2, being aware of risks associated with my age we booked a private NT scan just as we had on dc1. However I was stunned when my overall odds came back as 1:36. I felt that the bottom had fallen out of my world and like you really didn't know what to do. I'd picked the NT scan as I didn't want an invasive test because I'd previously had 3 miscarriages. However after speaking to the private clinic and my mw I realised that I just had to know what if anything I was facing - I couldn't continue blindly not knowing - obviously some people can but I couldn't.

Anyway we decided on having the amnio privately simply because it would be done by Wales' top ob consultant and I just felt happier about that, also the test can be done at 15+ weeks not the 18+ that the NHS insist on. He was wonderful explained everything scanned me really thoroughly and explained that my risk of miscarriage was actually no higher as a result of the amnio than anyone else's. The risk of miscarriage with amnio comes from Damaging the placenta or foetus, rather than the usual miscarriage reasons.

I won't pretend that it was painless but it really wasn't anywhere near as bad as I thought, and I ached pretty badly for 24 hours and took paraceptamol throughout. The next day was much better though and when I got my all clear results on day 3 I felt fantastic.

Altogether I would recommend an amnio if like me you really need to know what you are facing, I'm not sure what we would have done if the test had shown anything was wrong but luckily for us it was ok.

Goodluck with whatever you chose to do, it's not easy to decide x

hi nosleep, have seen your other thread.

I had a CVS after downs syndrome odds of 1:104 and Edwards/Patau syndrome odds of 1:42. I would quite likely have terminated if the results were positive which is why I had the testing done.

I made the decision very quickly, once we knew our Edwards/Patau risk was 1:42 (which I only knew from having a private scan) I knew I wanted to have a definitive test. DH completely agreed luckily. Had the CVS the same afternoon.

It helped me to get on with it quickly and not mull over the decision too long (I am terrible for overthinking decisions). If you are the same, would you consider a CVS (which can be done from 11.5 weeks) instead of an amnio?

I found it very helpful to watch the whole procedure on screen (seeing where the needle went and that it wasn't near the bean) but others prefer not to watch. It didn't hurt other than a quick jab when the needle went in - my hospital don't numb the area but some places do. I wasn't sore afterwards and had no bleeding or cramps. I rested (CVS was on a Friday so I rested over the weekend) but didn't go to bed or anything like that.

I understand that you don't want a risk result before deciding on having invasive testing. However in my local area they will only give you a CVS or amnio above 1:150. Does this mean you will have to pay to have the CVS/amnio done privately?

Best of luck with your decision.

Hi!

Info i have gathered thus far:

Amnio will be done at 16 weeks, on the NHS without having any probability testing first.
At my local hospital it is not done by any Drs or consultants, it is done by sonographers.
This does not worry me as they do them week in week out and there are only 2 of them that are trained to do the procedure. They are expert.
No miscarriages last year at all.

Miscarriage i am told is caused by infection. Usually contracted during the procedure itself.
My history of miscarriage does not influence this at all, i will not be more prone to miscarriage as a result of the amnio.

My fear isnt the procedure, my fear is the results. What will i do? How will i cope? How will i carry on?

Its the final injustice and kick in the teeth, its just too awful to contemplate.

I will almost definitely abort this longed for, loved, patiently waited for little baby.
My desperation for a second child does not extend to doing anything and everything to maintain a baby that just isnt going to be.

nosleep the vast majority of those that have CVSs and amnios get good news - and those are people who have had high risk results, which you haven't had. Try not to worry about bad news until and unless it happens (easier said than done I know ).

I had an amino last August following a 1:112 risk of a DS baby. I was 37 at the time. We have two children already and my pregnancies with them were entirely straightforward so it was a huge shock to discover something might be wrong.

The worst part was the time between getting the news of my risk factor and actually having the amino 2 weeks later. I had several conversations with the screening nurse which answered questions that I thought of during that time and I also spoke to a lady at ARC who was also incredibly helpful.

The test itself was actually ok. I had the loveliest consultant and it wasn't particularly painful during the procedure. That evening and the following day I was in a little discomfort but I had booked the day off work and stayed in my pjs for most of the day. I was fine after that but didn't do anything strenuous. The morning the results were phoned through I was a wreck but it was good news and we now have a perfectly healthy and beautiful 6-month old boy. I am glad I had the test and would do so again. In fact I wouldn't bother with the blood tests and nuchal scan and would go straight for the amino.

I hope everything works out for you.

Why do you want an amnio if you haven't had bloods or nt? You don't know your risk I guess? Seems you want a definate answer so there's your decision. If you would terminate then my view is that you might as well have the test. I think you have made your decision........

Btw I know 4 women who had the test and none tested positive for anything and none miscarried.

Remember though that the amnio can't legislate for all disabilities. Good luck with whatever you decide.

I had amnio with ds2 (aged 39) as I didn't like the uncertainty of the blood tests and I knew my partner would not want to continue with a downs diagnosis.
I'm not sure what I would have done if it had shown downs, but I wanted ti have all the facts so I'd be best placed to make a decision.
My partner knew a couple who had a downs child and it was both the additional health risks (heart disorders as with this friend's child) and the issue of having a child with developmental delays/issues.
Mine would have been practical issues like first child feeling left out if more attention required with downs child and whether child are would be available. I don't know if I could have gone through an abortion. I did know that keeping the child would meant the end for me and the dad - as it turned out we didn't last 6 months beyond birth of healthy fs2 but that's a separate matter.
I didnt worry about the risks of miscarriage but some of my family were shocked That i had amnio despite the risks.

Thanks everyone for advice and for sharing your experiences, its really helping me.

nellyjelly i have been ttc for 5 years. I have had numerous tests for re-occurring miscarriage and for infertility.
I have no time and no patience for probability, i need to know definitively.

nt & bloods are probability, im not interested in that, waste of everybodies time and NHS money.

Going to go on holiday then book the procedure....desision is made...i spose

Good luck! I'm sure it will all be fine - the vast majority of women who conceive at your age and get to this stage of pregnancy go on to deliver a healthy baby, so do keep cheerful wjilst on hols.

I hadn't clocked previously that you had a DC1 to consider. Given this, I understand why you need absolute certainty - you understand the risks, but if it was me I would definitely think that the duty of care to DC1 outweighed this, because the huge difference in possibilities for DC1's future life and options depending on whether DC2 was healthy or not would not be something I would be willing to take a gamble on.

Let us know when your appointment is and all mumsnet will keep everything crossed for you. You are being so amazing through all of this, I really admire you.

I had a CVS done by my consultant on the NHS, In 20 years he has not had a mc on his books because of CVS or amnios.

I asked him about the mc risk and he had a theory.

He said the highest risk time for a mc is around 12 or 13 weeks, which is when a CVS takes place ( and amnios around 2 weeks later). He said that often women who need amnios are in the older category which is higher risk for mcs anyway. His theory was that patients who have amnios are often in a high risk group, with either a family history they want checking out, or because of being older. They are also at a high risk "time" in their pregnancy.

In other words, the mc figures may be statistical rather than a sympton of the procedure.

Since he has done these without a mc for 20 years, I gave this credence.

Often people don't realise that an amnio or CVS isn't just for Downs or Edwards or Pataus but can flash up unexpected problems too. In our case it was chromosome 7. Very big duplication with massive implications for our baby. I terminated the pregnancy after a very grim prognosis. It was a total surprise with no family history on either side. Had we not known, our daughter would have been born severely disabled and life limited. This would have been traumatic for our then 3 yo and we had to consider him too.

However, the second time I had an amnio, it was great news and DS2 is fast asleep upstairs.

I would say do it and I wish you happiness.