Straight to CVS?

[Colinthecaterpillar35]

Hi all

I'm a real worrier and I like facts rather than predicted risk. Is it possible to bypass the combined test and NIPT and go straight for a CVS? I appreciate this would have to be done privately but is it possible to have a CVS without a known high risk result from combined or NIPT test? I know CVS carries a risk of miscarriage and some may think I'm completely stupid for even considering this but even if the NIPT gave a low risk result I would continue to worry so I'd just rather know either way as being honest, the result would make a difference to us.

Has anyone gone down this route?

@Colinthecaterpillar35 what is your biggest worry? It is worth considering that sometimes tests in general can increase anxiety rather than relieve stress. Hence if you are wanting tests to take stress away, you may not achieve this... I mean this in a kind way as do not wish for you to open a can of worms and feel more stressed.

I imagine if you were to request CVS, given the lack of clinical risk factors, the only way anyone might undertake that procedure would be privately and not the NHS.

Also CVS can give false positives due to Confined Placental Mosaicism for instance. Hence it doesn’t necessarily provide an accurate/relevant result either. In our case we did not rate the CVS at all due to having a positive test for Edwards, being told baby was “incompatible with life”, then a long terms mosaic result. All of that heightened our anxiety a great deal, then having to have amniocentesis and constant monitoring for the duration of our pregnancy.

The fact is that no pregnancy comes with certainty of a healthy baby. No test can provide you certainty or guarantees. I really hope you’re ok and find some peace. I suppose this depends on what your motivation for testing is.

@Colinthecaterpillar35 CVS as you said it does come with it's risk of miscarriage, how low would your chances need to be in order for you to feel reassured?
I took a NIPT test a few weeks back with Melio, I didnt know how I'd feel when my results came back because I'm a huge worrier. all my results came back extremely low, in the thousands and that did come with a huge sense of relief.

Yes I did this - opted out of the screening route and went straight to a diagnostic test on the NHS. In my case I chose an amnio. Guy Thorpe Beeston did my amnio at the Chelsea and Westminster, so going private was not at all necessary. I had no high risk factors, but made an evidence based case. The Hospital were fine with this option.

As someone who had a CVS test in my 2nd pregnancy (as DC1 had a chromosome abnormality - of which we weren't carriers) I can tell you that the CVS is unlikely to stop your anxiety. Even though my results were clear, I was still stressed and did not believe my 2nd baby would be OK until I'd seen him in the flesh.

@RuthieJ85 although obviously it cannot be ruled out, the more recent research indicates miscarriage risk with invasive procedures is really overstated obgyn.onlinelibrary.wiley.com/doi/10.1002/uog.20353

@janinlondon that is interesting if your trust policy varies. My experience is procedures will not generally be recommended or funded on the NHS unless there are existing risk factors or obstetric reasons for doing so - even at least higher risk age bracket etc. Always interesting to hear exceptions to those rules.

SarahD19 - I know of women at three other hospital trusts in London also requesting and receiving diagnostic tests instead of screening tests. If the woman clearly articulates her right to a more accurate test, and that the denial of that test is an action against her best medical interests, most trusts do tend to agree. I am thinking that the legal ramifications of denying a diagnostic test are not inconsiderable.

@janinlondon generally the policy is a medical intervention is offered on a balance of risks. The standard guidance generally states it’ll only be offered in the event of higher risk circumstances. Many women in higher risk brackets DO have a choice to request it (e. g. Aged 35, higher nuchal measurements or existing conditions etc), but it is not offered as a standard. As many women are choosing to have children later, I know a number do opt for invasive tests over screening. However I do know of a circumstance where a person who was not considered higher risk was declined.

I’ve attached guidelines below. Obviously women have a right to make requests, but whether a person would be eligible for procedures without risk factors is not a given.

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

SaraD19 - yes I know the guidelines, but I also know what hospital trust legal departments do when litigation is brought over birth defects that were not detected.....which for a lot of trusts trumps the guidelines.

I think we are getting off the point here - OP yes you can get a diagnostic test. You may have to fight. But you can get one.

@janinlondon I agree it is getting off topic. My initial point was about purpose. Some trusts may well be intimidated by threats of litigation. However my original point was what the benefits would be for OP and trying to consider whether CVS would be genuinely helpful.

Two people have discussed CVS heightening anxiety on this thread. I’d still go back to, regardless of logistics, what purpose would a CVS procedure serve in this instance? What are the benefits versus the drawbacks? It is a personal choice and matter of weighing up what is genuinely in the best interest of OP.

SaraD19 is right OP - you do need to have a very clear and articulated reason for wanting the diagnostic test, and you have to be able to explain what you are seeking and how the result will address your concern.