Anyone gone straight to CVS?

[Zara1984]

Hi all,

Just wondering if anyone has gone straight to CVS screening (or amnio - but I guess CVS is first point of call because it's done earlier) and not decided based on likelihood given by nuchal scan & blood test. I am not currently pregnant but DH and I (and my GP) have talked extensively (for years) about antenatal testing. We have no obvious heightened risk of genetic or other abnormalities (I'm 28, no family history of abnormalities, would be first pregnancy), however DH and I have always agreed that abnormalities such as Downs would lead to termination for us. No ifs or buts, to the extent we have control over it we absolutely do not want to have a SN child. My worst nightmare is being the 1/10 person for the combined scan and blood test that came back with low risk of genetic disorder but then went on to have a baby with some kind of abnormality. Therefore due to worry we might go for invasive testing anyway, after the combined test. Obviously I know about the miscarriage risk. I was an amnio-tested baby myself (my mum was 40 when she had me in the early 80s), so I guess I feel confident that if I survived it my baby would too (obviously this is just my opinion, would have no bearing on actual risk of miscarriage!)!

As we live in Ireland the combined nuchal scan & blood is not offered as part of standard antenatal care under the public system - you have to specifically request it specifically and pay extra for it. Therefore I'm wondering whether, given our views, we should go straight for CVS (as it's not a normal procedure here, it would be performed by the special fetal medicine unit at Dublin's top maternity hospital - so good quality people doing it) - to get a clear diagnosis, rather than an estimate of risk. Wondering if anyone has done this? Am I just being a complete control-freak (probably!!)?

Really appreciate any comments/thoughts! :)

Just wondered if the risk of cerebral palsy means you will be opting for an elective c section as well?
It is something I'm considering this time. I have a lot of anxiety issues and have had a lot of counselling since loosing our first baby to mc and second to Downs. I will be requesting c section for mental health reasons but reducing the risk of any major birth accidents is in my mind as well.

Actually yes kind of. By the time my daughter was born I'd had 4 pregnancies - all lost one way or another. When I started losing faith in my hospital (hopeless care, never saw a midwife all the way through - only ever saw healthcare assistants despite being high risk) I made the decision to opt for maximum intervention.

I knew my daughter was likely to be very big (heading for over 10lb) so I went private and booked an ECS - basically so I could be reassured that I would have all the people I wanted in the delivery room with me. I actually wanted obs-led and maximum intervention. Although I know there were risks that way as well I didn't want the risks of just leaving it up to my useless hospital and hoping for the best. I was very afraid of being left to labour on my own and not being monitored hence my decision to book an ECS which was ok with my obs because she was due to be so big.

As it happened, waters broke 5 weeks early but I didn't go into labour and I didn't want to be induced so ended up with a CS anyway. V happy with that outcome. And it turned out the cord was wrapped round her neck twice and so tightly they struggled to extricate her - so it would have been an emergency CS anyway. And she would have been big - she was 7lb 12 oz at 5 weeks early!

I know this will all sound very odd to people who want natural births but I really felt that I had been through so much I couldn't possibly leave it to nature (which had already let me down many times) or to my hospital to get their act together. I went for the high-tec route deliberately and it worked out well for me.

Hi Zara,

I'm in Ireland and getting the nuchal fold (eary assessment) done at the Rotunda Private. It pretty routine, you just request it. Well you have to pay of course but I think it's definitely worth it for peace of mind. I would probably not go ahead with the pregnancy if there was a problem too. But I think the test is worth it anyway, it's either ?200 or ?350, I can't remember but I'll let you know as I am going in in mid December.

I think the CSV carries a 1% risk of miscarriage so that's why I am getting the nuchal fold done first. Once I see the odds I can decide what to do at that stage. I'll also be requesting my particular consultants statistics with CSV miscarriages because seemingly it varies wildly and some are better than others.

From what I've read on rollercoaster my guy is really good though but I will wait and see what my nuchal fold and blood results say.

early assessment

zara I'm not sure how easy it would be to get referred directly for cvs here (also in Ireland) just because you wanted it (as opposed to risk from nuchal, family history of cystic fibrosis etc) - we had one, after a 1:11 downs risk from nuchal fold - we had it the same afternoon, also in the Rotunda. Fergal Malone did it - and he is excellent and the trailblazer for pre-natal testing in Ireland (he's my hero).

given how strongly held your views are, you might also want to consider/research options for termination - you will have to leave the country and certainly when we were thinking about this, that seemed very difficult as a prospect (we already have one child). It's also pretty much taboo - and hard to talk about, even within families. I know you know all this, but it felt so much harder and lonelier when we thought that we might actually have to do it

as it happened cvs was fine (and we weren't charged in the event for either nuchal or cvs) and dd2 is due in 10 days.

Just to add something else to think about, ive been given odds of 1:40,000 for downs after combined test. If you were given similar figures would you really want to go through cvs and put your baby at risk? Also ive been told that the vast majority of congenital abnormalities would be highlighted by certain indicators on the scans.

Also, i realise you have very strong views on sn children but my ds has mild cerebral palsy which was only diagnosed when he was 12 months old. Although it was a shock and obviously i would rather he didnt have it, he is such an adorable, happy, cheeky and intelligent child (now 2 yo) and he totally lights up our lives. So even if you do end up with a sn child, it really isnt the end of the world. I wouldnt change him for anything.

Not sure if that is helpful but just wanted to add my thoughts and experiences.

There's also the integrated test, which is non-invasive and screening, like the combined test but with a better detection rate, 95% rather than the 85% quoted for the combined. We paid for it with DD1, it was offered at our hospital at the time, Queen Charlottes in London, by the FMC there. It involves a second blood test after 15 wks.

Pregnant now with DC2 and could have had a CVS if I'd wished (we've moved, in new area can have CVS on the NHS even if not high risk so was booked in just in case), however after our combined test, I was low risk and couldn't justify the risk of MC (quoted as 1:100, although with the guy I'd have seen 1:600). Only when I got home and chk'd DD's paperwork did I remember about the intergrated and I've since opted for that (went back to old hospital & another scan & blood test since).

It's not diagnostic and I understand you don't want to get into the minefield of statistics but if, when it comes to it, you can't take the 'unecessary'

Thanks all for your further responses - sorry it took so long for me to reply, Friday was quite a busy day and then was sorting out a trip to visit family in the Antipodes this morning.

Re: ECS to avert risk of cerebral palsy - this is indeed something I have (and am) thinking about. I have one friend who quite explicitly had an ECS to avoid birth-related injuries/damage to the baby. After I get pregnant I want to talk research this more in detail - actual risk, if you intend to go VB at what point during labour should you start thinking about CS etc etc etc. I have no fixed views either way on what kind/style of birth I want - one that is safest for baby and me is my objective.

Thank you very much rhetorician and shock for more info on the Irish situation!! Much appreciated!! Interesting that I might not get to choose to go straight to CVS. This is a question that will be first on my list at first appointment with my GP after a BFP!

Thank you all so much for your thoughts - this has been extremely useful and real food for thought. I think where I am roughly at right now is to get the combined test (although am VERY keen to know more about the integrated test mentioned by oltob - and whether it's available at the Rotunda here in Dublin - will do some research on this. I think they just offer combined though), and then am fairly certain I'll CVS unless the risk of m/c is significantly higher than risk of something not being right with the baby. My position may well change!! But thank you again so much for sharing your thoughts/experiences - so fantastic as I don't really have many people in RL to discuss this with in such obsessive detail!

just as a further point, Fergal Malone at the Rotunda has a miscarriage rate of 1:300 - that's from his own mouth and I would totally trust him with the procedure (we did!)

It's my understanding that the miscarriage risk attached to CVS is not an absolute - i.e. your consultant should be able to give you a specific risk based on for example the position and size of your placenta, and so on. There are two different ways of doing the CVS - one is a straw method via the cervix and the other is an ordinary needle test - the miscarriage risk is different again for each of these.

Very interesting to know Jane - and TBH honest, makes complete sense! Excellent that you can narrow down further your particular risk of MC. :)

I was told by my consultant that she never does CVS vaginally anymore as the mc risk is too high, she said 5%.

That's interesting.. cousin had CVS twice (both optional, incidentally) and said the vaginal one didn't hurt whereas the one thru the abdomen was very painful.
Neither resulted in m/c

My tummy cvs didn't hurt at all.