Not sure how much more I can take ...... anyone who knows about amnio or has had one please come and tell me about it

[mosschops30]

So on top of everything else I have going on, the screening MW from the NHS phones me this morning, and reminds me why I should actually be someewhere there are no phones and no one can get to me

Quick background, had good NF scan (2.3mm), my background risk (age 33) was 1:353, this NF took risk down to 1:613, then bloods took it back up to 1:301. The cut off for them offering amnio at Bupa was 1:300 so we were just outside the boundary of being considered high risk.
The consultant recommended we had a marker scan at 18weeks (another £160) which would give us a clearer indication of whether to have an amnio.

Screening MW rang today as I had left her a msg, she said that if I was 1:251 on NHS results I would have just recieved a letter saying I was low risk (their cut off being 1:250 but its a different test). She also said the marker scan was not evidence based and therefore dubious as to whether it really indicates anything. She also said we could have an amnio on the NHS if we wanted.

So now am torally confused, dh thinks we should just have the amnio, but I dont know if I can put what is more than likely a healthy baby at risk.

Any advice would be great please, because I just cant deal with any of this right now

Have just had a look, no am 14 weeks now so out of that bracket.
It doesnt give any of their risk ratios though, so how do I know what Im geting for £450.
I would only make the trip to London and pay that sort of money if the risk to my baby was greatly reduced (cant remember who said some consultants have 1:1000)

I had an amnio and found it incredibly painful, the size of the needle also freaked me out (the fact that they had hand written me into their department diary but not transferred it across to their computerised diary and therefore didn't expect me, so we had to wait for 3hrs before having it, didn't help).

My result was negative, I spent a terrified 48hrs glued to the sofa.

My consultant said that miscarriage can still occur 7-10 days after an amnio.

Hi mosschops

I was in your position not so long ago. I'm now 22+3 wks pg. My risk factor came back as 1:75 after blood tests, I hadn't had a nuchal fold scan done as it isn't routinely offered on the NHS in our area. I'm 35 so age played a part in my result.

I refused the amnio because I didn't want to risk the pregnancy. Part of this decision was that dh and I agreed that even if the amnio came back positive then we wouldn't terminate. I was sent to the regional centre (QMC in NOttingham) for a detailed marker scan with a well respected sonographer (Dr Twining) who said he couldn't see any markers at all. Obviously that is no guarantee but we both feel (rightly or wrongly) that this baby has as much chance of being healthy as any other baby who has had a clear anomaly scan. I'm now relaxed about it and am enjoying being pregnant again (or at least I would be if I weren't still being sick and in pain with pelvic ishoos but that's my problem rather than the baby's) whereas before we had the scan I was a gibbering wreck.

Best of luck, whatever your decide.

Hi Mosschops,

What a difficult time this is for you.

FWIW, my risk was 1:160 and nucal fold was 2.2mm. DH and I had already decided if it was below 1:250 (NHS cut off) we would have an amnio.

My experience of amnio was pretty horrendous, took 4 attempts lasting about 3+ hours, baby just kept moving. Saying that I would have one again as I'm the type of person I need to know for sure. My results took exactly 2 weeks, the wait was the worst part.

Very sadly my little boy tested positive for downs. The MW had said my risk of mc was higher than my risk of having a downs baby and my consultant was very very surprised by my result given my risk wasn't that bad. I guess I was just that "1".

You need to decide honey if you can spend the rest of your pregnancy worrying that something will be wrong. My consultant said to me that the mc risks are far less than 1:100 you just need to make sure you have a good consultant do it, who's got lots of experience.

Thinking about you lots at this time. It's a difficult decision to make but something you and DH need to decide on together x

thank you all for sharing what are some difficult stories and experiences (especially marj)

Im still feeling that amnio is probably the best way to go given that dh is so firm on his views of termination.
Its just finding the right person to do it.

I was in the same position as you. At 37 my 3rd baby had a NF measurement of 2.4. After bloods my risk was 1:135. It was a shock because DS1 and DD1 were in the thousands.

If it was just me, I think I would have accepted the risk. But my husband likes certainty and we really didn't know what we would do if we got negative results.

The wait between 12 weeks and 16 weeks was the worst. I had savage cystitis, upset stomachs etc. I think brought on by the stress of my heart saying why are you risking this baby and my head saying we need to have all the facts to make the right decision for us.

My obstetrician said risk of miscarriage 1:300 and it is infection to watch out for. He said rest for 24 hours but would be fine after that. I had an amnio and it was fine. The smallest prick, then a couple of minutes with my eyes closed and deep breathing. I've had worse blood taken.

The results came the next day, everything fine and a weight lifted off me.

Maybe call the FMC - they are very experienced and may well be able to give you much lower stats.
Think amnio very much safer these days in any case.Best of luck to you and your husband.

dh is home, being all manly about it again , just wants a low or high from our consultant and then he'll be happy
Im wondering if I surgically removed his ears would it make any difference when I speak??
Really, thank you all for sharing your experiences on this, I will keep you posted

Hi Mosschops, sorry you are going through all this. I didn't have amnio but had CVS done at 13 weeks, my risk from nuchal scan was 1:2, lots of fluid visible on the scan. The CVS was painful while it was being done, which was only seconds, then no pain afterwards, and the consultant told me it was worse than amnio, so imagine it won't be too uncomfortable. I felt fine afterwards, although was told to rest.
I chose to have the test because it was clear something was wrong and we needed to know what it was. In your case, I would think the nuchal test indicates that things will be fine, although I understand that you now have that worry.
I have read with interest some of the other comments and I agree with Riven, that disablitiies can also happen at birth and for me having a child having a child with DS wouldn't have been the end of the world. However, our baby had Trisomy 13, had a hole in the heart, calcified liver, extra limbs, brain had not formed properly and many other things picked up later and would not survive, so we did not continue the pregancy.
I don't want to get into a debate about it all, but I think that testing can help prepare parents for what is ahead or make decisions about what to do about the news and I think it is good that that screening is available to those who want it. In my opinion, if we hadn't have known and then lost our baby late in pregnancy, or had a stillbirth, or had the baby only to lose him hours later, the pain would have been far worse than the incredibly awful, heartbreaking pain of letting him go before all the suffering.
I think you are right to also consider your marriage and the impact. And I'm sorry but it's not the same thing to say what would happen if the child was born with a problem, obviously then you and your DH would deal with things the best you could, but I understand his need to know now.
I wish you all the very best with your pregnancy, i think that if you are going to bbe stressed not knowing, that won't be good for you or baby, so perhaps it would be better for your peace of mind. I hope everything works out.

I had a 1:50 result after a good nuchal result of 1.6mm. The bloods changed this to the high risk result I got.

I decided in the end not to have an amnio due to the risk of mc. I then went on to have a late mc at 18 and half weeks anyway.

Having ecperienced this, in this pg I have had no testing whatsoever. There is no way I would risk another late mc.

I had a 1:4 Barts result. I was 36 years old. Second baby.

I was scared witless but I needed to know.

I did ammnio at hospital but sent the sample off for private testing (48 hours wait instead of 2 weeks).

It was fine. I cried and cried and cried. Tension & adrenalin was huge.

DD is 6 tomorrow.

i did not have the amnio just the blood for downs ? and was1-250 ds is 29months now has gdd got to have a blood test for fragile x but thats another story

Yes DH disagreed with me about the lack of testing this time. We were still 'discussing' it in the scanning room... The sonographer told us we had to make our minds up as she was about to start

He thinks we wouldn't cope with a child with a disability. I grew up with a sister with a disability so don't see it as such a big issue I suppose.

So difficult, the question of what you would do, no one can make the decision for you and the subject can be debated forever on a forum like this. My DH takes the same view as yours, I was less sure during my pregnancies, both of which involved "scares" from scans and tests. The problem is if they do identify, say Downs Syndrome, there are so many degrees of problems that the child could have, that you can't predict. You also have to consider the effect on the children you already have of course. Personally I needed to find out for sure before I could really decide what I might do about it (if anything). In the event, both DC's perfectly healthy and after happy results from CVS with second, I felt like I could relax and enjoy it more than I did with DS who I worried about for the last seven months .

I would recommend FMC too - the prof there (also at Kings) is Prof Nicolaides, he devised the nuchal test and performs in-utero surgery, an incredible man. It would most likely be him doing the amnio or one of his personally trained and very experienced doctors. I have been there during both of my pregnancies, the second of which I had CVS.

Thanks sleep. Im still toying with ideas of what to do, I might phone ARC again today as I found them a great sounding board last week when I rang them.
I dreamt about testing and having an amnio. When I woke up I thought I had decided against having anything done, but I dont know. I just hope dh gets to speak with our consultant today so he can get things clear in his mind

Haven't read all the posts, but I would have one. In fact I have had two myself - the first time full of anxiety, rather as you sound yourself now, the second time I was actually glad to be called for one. I have posted on this before - the man who performed my first amnio told me "We have to tell you the risk of miscarriage, but I can tell you we have never had one at this hospital". I did it for myself because I wanted to have peace of mind. I don't know what I would have done if the results had shown downs - they didn't on either occasion and both babies were fine. I'm the sort of person who once the seeds of doubt have been sown I need to have reassurance asap - that's why I was so glad to have an amnio with no 2. It wasn't a big deal and I wouldn't hesitate to have one again.

thanks lilian, did you have the amnio at a specialist hospital or your local hospital?

bit disappointed that having phoned the FMC, they say they dont have individual statistics for amnio at their centre, she just gave me the national avreage of 1%

I do not think it is right to comment on peoples descisions unless you have been in a position like this yourself as it is horrible.

I had a amnio with my ds who is now 4. The risk for me was 1/100 which was high at the time as I was 25. The amnio itself was ok and I wasnt too concerned about the amnio because if something had have happened that was gods way. They dident take enough fluid when they did my test and I had to wait 4 weeks to get the result as they had to grow the cells. Everything turned out just fine and all was well.

We as a couple made the descision to terminate if something was wrong that was our choice. I tell you what though you realise who your friends are we were called various names by a set of our friends who were struggling to conceive at the time. Its easy to look on the bright side when you arent in that position yourself.

At the end of the day its your choice and your life. Good luck

Mosschops- my story is similar to the poster on the first page (sorry, mind gone blank- I can't remember her name)
I was almost 38 when pg for the first time- it never crossed my mind not to have an amnio. I would have been a nervous wreck for the duration of my pg with the not-knowing.

The procedure was over in 5 mins, hurt like feck when the needle goes through the flab () but once it's into the amniotic sac it was painless...a couple of days resting up afterwards...I did go back to work straightaway and had some cramping and so whipped myself back to the hospital for a scan and was told to lie on the sofa for another few days.

I can honestly say that prior to having the amnio (and prior to the amnio having seen a "lentil" sized blob on the sonographer's screen at the early scans) I was convinced that had there been some anomaly I would have terminated. Once I saw a real baby on the screen during the amnio, I knew that no matter what the outcome of it was, I would not tx.

You need to do what's right for you.

Actually both my babies were born in France - at my local hospital in Paris. Really feel for you as I remember it felt like such a huge dilemma when the midwife called me up to reccommend an amnio with dd - if only I'd had mumsnet in those days! Everything is going along nicely and suddenly someone tells you there might be something wrong with your baby - it felt like the end of the world. In fact if you flip the odds around you can see that they are very much on your side. For me I know I couldn't have enjoyed my pregnancy until I had a definitive answer. Funnily enough I think one other thing which really helped me was the fact that I'd actually miscarried my first pregnancy. After the initial trauma I was quite fatalistic about it so I thought in the worst case if I turn out to be a new statistic for the hospital it's obviously meant to be. On reflection I'm not sure how helpful that last point is, but I'll leave it in anyway.

laughalot, I havent commented on anyones decisons, I have been thankful for people sharing but I havent made any judgements

Mosschops- I don't think Laughalot means you!

Mosschops noooooooooooooo I am on your side and dont want people being nasty to you about your descision