CVS? Anyone been there, done it?

[frazzledoldbag34]

Am pregnant with DC3. My brother has Downs and the docs are not sure whether it's hereditary. My 2 other DC's are fine, had an amnio with the first and detailed scanning with the second (wasn't allowed CVS or amnio with her as bleeding constantly throughout preg). Keen to find out about CVS as worried about Downs Syndrome (plus I'm mid-30's now too). Any experiences, advice etc very welcome. Thanks

[thisisyesterday]

no personal experience but I think the cvs has a slightly higher risk of miscarriage than amnio, can't remember why though.

[Vulgar]

My friend had it with no problems. Her DD was fine.

i have heard that you shouldn't have it done on or before 11 weeks as it may cause a problem with the growth of the leg bones.

Not sure if this is just heresay tho'.
hope I'm not scaring you.

good luck

[frazzledoldbag34]

Thanks. Does anyone know the best place / person to do it in Scotland? Apparently Dundee and Edinburgh (nearest to me) only do about 30 per year which doesn't sound like very many to me. Somewhere where they do them more often would be better I feel?

[Ohforfoxsake]

I had one at 12 weeks. The higher risk of miscarriage is because it is done earlier, when there is a higher risk of miscarrage in pg anyway.

It was fine. Using ultrasound the Dr positioned the needle, which with a wee shove as it went through the uterus, she took a sample of placenta. That was it.

For the next few days I had a niggling pain in my hip, a dull ache. It was uncomfortable but not painful.

I had it done whilst on holiday in Australia, which doesn't help I'm afraid.

HTH

[frazzledoldbag34]

Ohforfoxsake - thanks for that. Australia's a bit too far for me to go for it though.......I was thinking more like Glasgow, Aberdeen or Newcastle!!! Glad it was ok for you though.

[Vulgar]

My friend had it done in Kent which doesn't help you either. .

Does Glasgow have a really big hospital?

[greenlawn]

I had it this pregnancy, no problems - the worst was waiting for the result. After it was done I had about an hour or two of mild cramping, but no bleeding. Had it done late - 13 + 6 - the consultant I had prefers to do it later than earlier and this was the last possible date.

I got the result through in 2 days - had it on the NHS due to previous history/age.

My understanding is that the mc rate depends very much on the skill of the person doing the procedure, is this something you've time to research?

[elkiedee]

I had CVS in this, my 2nd pregnancy, as my combined test results here in London came back high risk. My hospital has a big screening programme so I think the consultant who does them does them quite regularly.

It can be done between 11 and 14 weeks, (amnio is 16 weeks and I didn't want to wait that long to find out for obvious reasons), my scan was at 12 + 1 so my CVS was at 13 + 4, this was at the late end but as mentioned it does mean you're out of that first 12 week period so the miscarriage risk drops a bit. Experience of person carrying it out is also a good thing, and my consultant on the day told me at the end it had all gone very smoothly in terms of collecting the sample cells from my placenta, so the risk had already dropped.

It hurt a little but I was more concerned about whether baby would be ok/the results.

My test results were all clear but of course you do have to think about the possible outcomes and think about what you'd do.

Rest is advised afterwards - can anyone go with you to handhold, carry bags and/or drive if that's something you need? I took 3 days off work as sick leave.

[frazzledoldbag34]

Thanks everyone for the info. I'm imagining that discomfort-wise it will be similar to the amnio I've had previously (which I thought was pretty horrific but in hindsight probably just freaked me out as I was watching the needle going close to my tiny baby on a screen which probably made the disomfort worse).
I am only about 7 wks so yes, have time to do research but just wondered if there was anyone in Scotland with a good reputation? Have done a couple of internet searches but London keeps coming up. I could go to London for it but would rather not unless absolutely necessary.

DH will come with me to hand hold etc so that's no prob. I'm just nervous about it really. Not going to bother with any of the blood tests or anything will just go straight for the procedure as I don't find any reassurance in being told 1:500 chance or whatever as I could be that 1! My mother had my brother with Downs age 25 (presumably would have come up low risk) and I know someone else who at the age of 22 had a Downs baby boy having been told that her screening risk from the bloods etc was 'very low' - can't remember her exact chance but it was 1:1200 or something. I just need to know one way or the other as with 2 DC's already I would definitely not proceed with the preg should it be DS or Edwards or something. Having grown up with SN in the family I wouldn't do it to my kids. Sorry if that sounds harsh but that's the way it is for me.
(Sorry am ranting, must be hormonal or something this morning!)

[SixSpotBurnet]

Could we just please have a bit of sensitivity here - there are many many mumsnetters who have children with special needs, Downs Sydrome amongst them, and a little bit of tact would be appreciated. Bear in mind that there are many kinds of special needs that can't be detected on a scan either.

Thank you, and best wishes - I hope that you get the outcome that is right for you and your family. I have to say that in many ways having a younger brother with autism has been a very good thing for my older two DSs, but obviously I respect your own experiences.

[mslucy]

I had it done at 12+6 at UCH by the Professor of Fetal Medicine, Eric Jainaux.
He is very skilled and said that his m/c rate was 1 in 700, which is pretty amazing.

I had no bleeding but a bit of cramping for a few hours.

I got the result in 2 days and it was fine.

I am very, very glad I had it as it gave me the peace of mind I needed.

[evie78]

I had a cvs done with my last pregnancy in ninewells hospital Dundee! as my other daughter has a genetic disorder called spinal muscular atrophy and there was a 1 in 4 chance of my third having it .Test wasnt painful more uncomfortable and just watch the screen not the needle! they may ask you to fill your bladder and if the baby is lying in an awkward way they might ask you to empty again! I was even asked to empty my bladder so it was half full!! because the baby was sitting in an awkward position they couldnt get it that day and I had to go back a week later got test done at 12 weeks and got results in two days . hope this helps good luck x

[frazzledoldbag34]

evie78 thanks for that. Can you remember who the consultant was that did yours? Glad it all went well for you. I was just concerned that they (apparently) don't do many at Ninewells so perhaps the Consultant would have a higher miscarriage rate, but maybe the Consultant does them at more than one hospital?

sixspotburnet I'm really sorry if I've upset you with my comments. I really don't mean to sound horrible and insensitive, but having had a difficult family life with my older brother who had DS I just would prefer not to go through it all again myself or put my other kids through a similar experience. My brother was quite 'difficult' - ( slept for 2 hours max per night for the first six years of his life, for example), very hyperactive, disruptive, angry, violent, etc etc. Maybe I'm a bad person, but I'm just not sure I could cope.
Of course I do understand we could have a child who develops autism or indeed one of many other conditions and obviously would accept and live with that and that would just be fine.
Again sorry, didn't mean to offend. For me, a CVS will just hopefully give me peace of mind (for now anyway).

[evie78]

I really dont remember to be honest my little girl is almost 3 now! I met him on the day and he was lovely he seemed to know exactly what he was doing I had no cramping afterwards or anything! I would recommend ninewells and I would assume that the docs that do these do them all over scotland.
I was due to have another cvs in a few weeks but unfortunately lost the baby last week , so the cvs couldnt have been that bad or I wouldnt go back for more !! good luck

[frazzledoldbag34]

Oh evie78, I'm so sorry to hear that. [hugs]

I do hope that things work out for you in the future
Thanks for your advice on this. You've definitely made me more confident about just going to Ninewells and not trecking to London (where it costs about £450 I think).

[evie78]

thank you! it just wasnt meant to be! ive got three beautiful girls 12,7 & 2 so i am lucky!
just use good old NHS thats what its there for! any other questions just ask x

[sloveshockey12]

evie, I have had a child that passed away at 7months into my pregnancy with a genetic disorder and have to do a cvs if I get pregnant again. the chances are 1 in 4 again. can you please email me if this reoccurred again to you? I have one child that is fine. thanks for your information. my personal email if you could please respond there is [email protected]. thank you.

[doodleduck]

Had CVS at the Fetal Medicine Centre in Harley St. Blood test/age/leaking heart valve made high risk and I wanted to know.
Prof Nicolaides who runs the centre is a leading light in the field. Also does NHS at Kings (I think).
Risk is high IF the person who does it doesn't do the procedure very often or if the placenta is in an awkward position.
Not sure about places in Scotland but I wonder if the Centre might be able to give you a list of private places?

[herbaceous]

I'm going for my nuchal fold and blood tests next week. I'm expecting to be high risk, as I'm 43 (just) and lost my last two pregnancies to trisomies.

But it's so difficult isn't it. I couldn't bear to have another miscarriage. What if my 'risk' comes back as 1:100, and the risk of miscarriage from CVS is 1:100. What on earth to do?

Also, where can you find stats on the experience and thus miscarriage rates for various consultants and hospitals? I'm with the Homerton in East London. They've assured me they do loads of CVSs, but I'd like to find an independent source...

[damask]

Hello herbaceous - I had my cvs done recently at Homerton. Mr Ed Dorman was the consultant. The people there were great. My understanding is that Mr Dorman is vastly experienced, and that the miscarriage rate there is at most 1 in 200.

Certainly my experience was fine. I had mild cramps for the rest of the day and no bleeding at all.

Good luck to you.

[herbaceous]

Thanks Damask. That's really good to know. I hope I have Mr Dorman! I trust your result was all OK?

[ladymac]

I am 23 weeks pregnant and had a CVS done at 11+3 due to my age. I'm in London so can't help you with hospitals I'm afraid but my consultant reassured me that actually the miscarriage risks are hardly any higher than they would be at that stage of pregnancy anyway.

She also looked at the nuchal fold whilst she was scanning me before the procedure and said the measurement was really good which was also reassuring. I had a bit of pain afterwards but no bleeding and got the results in about 2-3 days.

I think you just need to go to a big teaching hospital in a big city where you'll probably find a consultant that does them regularly.

Herb, I was exactly the same as you, I was terrified that the cvs would cause me to miscarry a baby that may have come from my last viable egg. But I really needed to know if there were any potential problems. Mine was done at the Whittington by Miss Paul, who trained under Prof Nicolaides (he invented the test I think). I would highly recommend her if you wanted to transfer there.

[ladymac]

Miss Paul's risk is half the national average.