Amnio vs CVS - how to choose?

[missmarie85]

We are beyond heartbroken to have received our NIPT results today and found out that our baby is highly likely to have Down’s syndrome. We have been offered a ‘confirmation test’ of CVS or amniocentesis, but I’m struggling to understand the difference - can anyone explain it to me? I know CVS can be done at 11-14 weeks and amnio after 15 weeks, but are there any factors I should consider beyond that? I’m 13+3 and don’t know whether I should get CVS now or wait for amnio - the doctor was pretty vague when I asked if one would be better for me than the other (and I was a bit too emotional to take anything in anyway), so any guidance would be much appreciated.

This must be so worrying for you, I'm sorry

I didn't want to read and run despite having no similar experience. It's really bad you haven't been given much guidance and googling always risks throwing up unhelpful stuff.
Is a good place to start with these two pages from the NHS?

www.nhs.uk/conditions/amniocentesis/
www.nhs.uk/conditions/chorionic-villus-sampling-cvs/risks/

Then noting down any questions and asking your midwife?
Sure others will have some more advice from experience.

@JuneySunshine

This must be so worrying for you, I'm sorry

I didn't want to read and run despite having no similar experience. It's really bad you haven't been given much guidance and googling always risks throwing up unhelpful stuff.
Is a good place to start with these two pages from the NHS?

www.nhs.uk/conditions/amniocentesis/
www.nhs.uk/conditions/chorionic-villus-sampling-cvs/risks/

Then noting down any questions and asking your midwife?
Sure others will have some more advice from experience.

Thank you so much for taking the time to reply @JuneySunshine. You're right about the dangers of Google, but the NHS links have taken me in the right direction, so thank you for those and for your kind words x

CVS can be done sooner so they will try that first but isn't always possible due to the location of the placenta.

If they can't do CVS, then they will do amnio.

I went through this last summer, they couldn't do the CVS because baby was hiding behind the placenta and it was a long, long 3 week wait till the amniocentesis could be done.

The team at my hospital were absolutely lovely, hopefully yours will be in touch with more information and support. Hopefully you are doing OK during this difficult time.

I'm sorry you're having to go through the O0, it's very stressful and not at all what you expect when you go for your first scan.

Have you thought of having the Harmony test OP, if I remember rightly it is just a blood test. We had ours at the Fetal Medical Centre in Harley Street after having CVS for our first 2 DC.

My DD is now 21 and professor Nicolades did the one with her as it was very new, with our second (DS 17) it was done at Kings, they're really lovely and professional and make you feel very secure about the whole procedure.

I chose CVS because I could find out for sure ASAP. I'll be brutally honest, it was awful. But I got the result I wanted so didn't undergo amnio. I gather the risk of miscarriage is higher with amnio. Good luck

I would do cvs so you can find out sooner.

I don't know about your case but we were told very high risk and cvs came back completely normal.

It was very scary but the procedure itself wasn't too unpleasant but the waiting was absolutely horrible so I would go with whatever you can do quickest.

💐💐💐

I chose CVS, I wanted to know asap and it is basically 100% accurate.
It wasn't the most pleasant of feelings but the whole situation for me wasn't great to be honest.
Sending you support whatever you decide, if you ever need to message me feel free. x

@VitalsStable

I'm sorry you're having to go through the O0, it's very stressful and not at all what you expect when you go for your first scan.

Have you thought of having the Harmony test OP, if I remember rightly it is just a blood test. We had ours at the Fetal Medical Centre in Harley Street after having CVS for our first 2 DC.

My DD is now 21 and professor Nicolades did the one with her as it was very new, with our second (DS 17) it was done at Kings, they're really lovely and professional and make you feel very secure about the whole procedure.

NIPT (non-invasive prenatal testing) is the generic name for the Harmony test. OP has had this.

I have no experience of this OP but just wanted to send you best wishes at what is a stressful and difficult time.

Hi, I was reading the book "expecting better" by Emily Later and there was a section on choosing between the two - basically she's an economist who loves data and did a load of independent research into various aspects of pregnancy. I've taken a photo of her conclusion... She does say the risks are a lot lower than the 1 in 100 chance of miscarriage from either procedure (which is based on outdated info apparently). I hope that helps and sorry you have to go through this x

Emily Oster*

Just to add to what’s already been said. I couldn’t have the amnio (was 17 weeks) as it was dangerous to my baby due to something not being sealed within the placenta (as I understood it) it was a traumatic time so I may not quite have understood it exactly but the CVS was do-able and gave us - sadly - the result we were expecting which was the same as the NIPT.

Hi

Whilst I waited for the result of my NIPT I used this website.

www.arc-uk.org/tests-explained

From memory though I thought the NIPT was very accurate - depends whether you are continuing with pregnancy and whether you do need further confirmation.

Thank you so much everyone for such thoughtful replies, and for making me feel less alone today.

@soughsigh I'm so sorry to hear you went through this too. I've decided to go ahead with CVS, but thanks for the warning that there are some instances where it's not possible – at least I'll be a bit more prepared if that happens to me.

@VitalsStable The Harmony test is a brand name for NIPT, which I've had and which very sadly suggests my baby does have Down's syndrome. The CVS/amnio is just the NHS's suggested follow-up as they class NIPT as a screening test, not a diagnostic test, but they have warned me that as the NIPT is so accurate with Down's they expect any further tests to give the same result.

@PurpleEchoLamp @doadeer @YumLemonCheesecake I've followed your lead and told the hospital I want CVS as it can be done more quickly. Waiting for the NIPT results was horrendous so I don't want to prolong things even further. Thank you so much for sharing your experiences and your kind words.

@NotMyDayJob Thank you so much for your kind words too. Every single lovely person here has felt like a lifeline to me today in a time of utter darkness.

@chillichutneysarnie That is hugely helpful – thank you so much for finding and sharing that. I've told the hospital I want CVS now and that makes me feel much more confident in my decision – thank you.

@Margaritawithlime I am so deeply sorry to hear you went through this too. If it's not too personal a question can I ask if you continued with the pregnancy? I've been told to expect CVS/amnio to confirm my NIPT results rather than change anything so we have some difficult decisions ahead.

@Thefuturestory Thank you for this – the screening midwife has recommended the same organisation and I'll definitely check them out. The NIPT is deemed very accurate for Down's, but as I am sadly unlikely to continue with the pregnancy I have to have either CVS or amnio to confirm the diagnosis.

Thanks again everyone for taking the time to reply. This is the hardest thing I have ever gone through and not many friends even know I'm pregnant yet, let alone facing this, so the support I've found here helps hugely x

@missmarie85 we didn’t. It was a diagnosis of Edwards syndrome and incompatible with life. I was lucky that I managed to get referred for a medical procedure right on the cusp of it being too late (lucky in that it was the way I wished to proceed but for others it may not be what they want understandably)
Another thing to be aware of - if you opted for your NIPT to keep gender out of the report and you wish to know, the CVS/Amnio can tell you. Or not. We knew but I remember getting the CVS report and not realising it would say it there too and thinking it was fortunate we already knew.
Massive massive love to you. It’s just the worst.

Oh and to repeat what another poster just said, ARC were amazing. Utterly amazing. Give them a call

[quote Margaritawithlime]@missmarie85 we didn’t. It was a diagnosis of Edwards syndrome and incompatible with life. I was lucky that I managed to get referred for a medical procedure right on the cusp of it being too late (lucky in that it was the way I wished to proceed but for others it may not be what they want understandably)
Another thing to be aware of - if you opted for your NIPT to keep gender out of the report and you wish to know, the CVS/Amnio can tell you. Or not. We knew but I remember getting the CVS report and not realising it would say it there too and thinking it was fortunate we already knew.
Massive massive love to you. It’s just the worst. [/quote]
I am so very sorry to hear what you went through. My heart goes out to you. I also want to thank you for mentioning gender. We haven't found that out yet as we we wanted to keep it as a surprise until our baby was born... but in the circumstances we're now in we do desperately want to know, and I didn't realise the CVS would be able to tell us until you mentioned it. I'm booked in for CVS now and will ask them about it. I'm going to call ARC tomorrow too. Thank you. I can't tell you how much it means to have such kind words from someone somewhere who understands x

Meant to tag you in reply above @Margaritawithlime x

All of the hugs - if you decide to go through the medical procedure and you need to talk just reach out through PM.