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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To ask what you would do in this situation?

22 replies

OhWhyOhWhyOhWhyy · 16/07/2020 20:19

Currently pregnant, 10.5 weeks. I have had a large number of miscarriages previously but this is the best and furthest we have got so far and our Dr seems really hopeful that this could be the one.

I have been offered CVS testing next week as I have a 5-6% chance of my baby having a genetic condition (not DS) but can be very life limiting and cause severe learning disabilities.

The risk of miscarriage with CVS is 1% I'm told.

I am so torn on this. I would absolutely be devastated if I miscarried due to the test after already having so many and this being the only one that seems to be going anywhere however I'm equally aware that the risk is higher for the genetic condition being 5-6%.

I know this is a personal decision but I'm interested to hear from others WWYD?

Not really an AIBU but for ease on voting

YABU - I wouldn't have the CVS due to the increased miscarriage risk.

YANBU - I would have the CVS despite the risk.

OP posts:
yeOldeTrout · 16/07/2020 20:23

Is the genetic condition not just life limiting, is it unpleasant to live with for the person who has it? I could imagine seeing it as my duty to not bring a child into the world who I knew was going to mostly suffer in their waking hours.

Original poster
OhWhyOhWhyOhWhyy · 16/07/2020 20:27

@yeOldeTrout

Is the genetic condition not just life limiting, is it unpleasant to live with for the person who has it? I could imagine seeing it as my duty to not bring a child into the world who I knew was going to mostly suffer in their waking hours.
So I've been told that it can range from mild to severe in which case yes it would be unpleasant to live with and can cause death at a young age. However, it can also be mild and not have a huge impact other than minor learning difficulties. We've been told there is absolutely no way for them to tell us how affected any baby with the condition would be though, just whether they have it or not of which there is a 5-6% chance.
OP posts:
Bluebellpainting · 16/07/2020 20:28

It is hard to say OP without more information I suppose the first question would be- what would you do if you have the CVS and the baby does have the genetic condition? If you will continue the pregnancy anyway then I wouldn’t have the CVS. If the answer is end the pregnancy then is the CVS the only way of diagnosing the condition- will it show up on ultrasound at a later date? How do you feel about not knowing for longer- would it then be harder for you to have a termination later on. It is a very tricky situation. So in all honesty I don’t know what I would do. Congratulations on the pregnancy and I hope for you that all is well.

Original poster
OhWhyOhWhyOhWhyy · 16/07/2020 20:29

I'm hoping that I'll be able to actually discuss it properly with the consultant performing the procedure but so far I've just been told where to go on the day and at what time.

According to the dreaded Google, the risk can be associated with how experienced the person carrying out the procedure is so I would want to ask and have opportunity to discuss it before going ahead on the day.

Fortunately I am seen by one of the top UK hospitals who have a specialised fetal medicine unit but it is still such a worry.

OP posts:
Original poster
OhWhyOhWhyOhWhyy · 16/07/2020 20:31

I've been told that there are sometimes indications on ultrasound but it's not the norm and they wouldn't use that as a way to diagnose it.

If the test came back positive I would probably consider termination yes.

OP posts:
JudithGrimesHat · 16/07/2020 20:31

If you had the CVS and it came back that the baby did have the genetic condition would you terminate? If yes then I would have the CVS but if you wouldn’t have an abortion then I would not risk the CVS.

CottonSock · 16/07/2020 20:31

I had multiple miscarriages and opted for no testing. Personal decision, but each pregnancy was too precious, and also precious in its own right.

nothingcanhurtmewithmyeyesshut · 16/07/2020 20:31

I agree, it depends on the outcome. If a positive result would cause you to end the pregnancy then have the test. If you would continue regardless then the result is irrelevant and therefore the test is unnecessary.

Tappering · 16/07/2020 20:32

What would you do if the CVS confirmed an abnormality? If you wouldn't terminate then I'd question whether it's worth the (small) risk attached to having the test.

Iwalkinmyclothing · 16/07/2020 20:33

If it was a condition I would consider terminating for then yes, definitely, I would have the test.

user1493413286 · 16/07/2020 20:34

I think you need to decide what you would do if the condition was present; if you’d continue the pregnancy regardless then don’t risk the procedure but if you’d feel you couldn’t continue the pregnancy then have the test.

BovvyDazz · 16/07/2020 20:35

I understand risk to be ‘up to 1%’ but in reality much lower.

This study concluded ‘With regard to CVS, our results demonstrate that, there is no significant procedure-related risk associated with undertaking this procedure‘

www.obgproject.com/2019/06/17/do-amniocentesis-or-cvs-really-lead-to-increased-risk-of-miscarriage/

Bluebellpainting · 16/07/2020 20:37

Yes definitely talk with the consultant. Would an amniocentesis diagnosis it? They are done later in pregnancy and have a lower miscarriage risk. Still not low risk but lower than a CVS.

Crunchymum · 16/07/2020 20:40

Can you ask for a NIPT, or pay privately for a Harmony test?

Daisylookslost · 16/07/2020 21:03

YABU

CoRhona · 16/07/2020 21:21

I did have CVS when I was told there was something seriously wrong, but I didn't have it to decide whether to abort (or not) as I had made that decision irregardless.

Op, it's a truly awful decision but whatever you do is right for you.

Just hold on to that thought Flowers

MollieMaeve · 16/07/2020 21:32

If you can, press further on the actual miscarriage rate for your hospital?

I had the test done due to potential abnormalities seen on a scan (turned out to be nothing) and the miscarriage rate at my hospital was much much lower than the standard 1% quoted.

I too had multiple losses before this so I really do empathise with you. Wishing you lots of luck Flowers

crosser62 · 16/07/2020 21:34

Hi.
Following multiple miscarriages I became pregnant and managed by some miracle to successfully carry a pregnancy.
Due to my advanced age (43) I agonised over whether or not to have an amnio.
I researched my hospital. Stats published stated that their miscarriage rate following amnio was

DDiva · 16/07/2020 21:52

I had multiple miscarriages and opted for no testing. I would have tortured myself if the worst happened and mc after the test and would have torn myself apart with guilt had we decided to terminate after the results.

okiedokieme · 16/07/2020 21:55

The way I looked at it was would I abort if the test came back positive? In my case I had decided not (was told 10% chance)

poilymo · 16/07/2020 22:05

If you would terminate based on the results have the cvs.

wildone84 · 16/07/2020 22:25

I'd have the test.

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