(Private?) Screening available for monochorionic twins?

[TametheDragon]

Hi all,
I haven't done much research on this as yet as I am scared of putting myself into a bad place by roaming the internet.
Unsure whether to post this in here or in the multiple births section.

I am 14+3 with monochorionic/diamniotic twins and had the combined screening as offered by the NHS, the results of which all come back as low risk. When at my 12 week scan I was aware of the sonographer measuring and remeasuring the nuchal measurements of the one baby but the screening came back fine so I tried to put it to the back of my mind.

I had a second scan yesterday with a fetal medicine consultant due to suspected TTTS and as well as the TTTS there is now a question mark over chromosomal abnormalities due to the fluid at the back of the neck of the bigger twin.
This may be a symptom of issues created by the TTS but they obviously want to check. They are suggesting amniocentesis at 16weeks. (Does anyone know how long it would take to get results back from this?)
I am seeing a specialist next week with regard to the TTTS and possible surgical intervention for that.

Just wondering if there was anything else screening wise out there that I could access prior to 16weeks? I looked briefly at the panorama tests but I'm unclear as to how much more they would tell me than the combined test that I've already had, or whether I am already too late for that anyway at 14 weeks.

Feeling very worried/confused/vulnerable and just want pointing in the right direction without scaring myself.
Thanks in advance.

Just to add that CVS is not available due to the positioning of my placenta.
I have a feeling that the twin element barrs us from most screening available but just feel I need to try just in case I'm missing something.

Hi - the nuchal thickness isn't as accurate after 13+6 which is the NHS cut off usually for doing that measurement?

So it sounds like you are having identical twins? In which case you could pay privately to have the NIPT panorama test.

I'm having twins (di/di ones) and opted for the NIPT - not every NIPT is suitable for twins but the Panorma one is - it's about £400 though. Blood tests actually get sent to America so it can take up to 2 weeks to get the results

As my twins aren't identical I could only get the down / edwards / pateus results but because yours are identical you should get results for a much wider range of chromosomal disorders?

Hi, thanks for your reply. Yes my twins are identical.
I probably wasn't very clear in my post, sorry about that.
The nuchal thickness was unusual at my 12 week scan but by 14 weeks there were pockets of fluid visible.
I'll do some more homework on the panorama NIPT.
Thanks again :)

Have you had the results yet from your NHS screening tests?

I am expecting twins and had the Panorama NIPT at 11+4, I decided to do NIPT regardless because of my age. I have DiDi twins too and it just gave me risk for the 3 trisomies and X Y abnormalities. Both sets of results came back low risk overall but there was a difference in the results.

It might be worth a chat with a clinic offering Panorama to see if it’s suitable for your gestation.

OP - sorry you’re going through this, twins can be stressful all round! Hope you have good support around you. I’d suggest that you should talk again with your fetal medicine clinic - a specialist midwife or one of the doctors should be able to talk through your options, as your story is a little complex! It may not make too much sense to pay for NIPT just now as that only covers the most common aneuploidies, and amnio will give much more information. Also I think you need to chat with your team about how that would affect your decision making going forward, for example if needing the TTTS treatment. If it wouldn’t affect your decision to go forward with laser treatment then there’s also the option of having an amnio done at the same time as the laser - so no extra procedure required. But as I say it’s a bit complex, please reach out to your team, that’s what they’re there for.

@TheMagicDeckchair I decided to hold off in the end until I’d spoken with the specialist. My combined test screening had all come back as low risk. Wishing you the best of luck with the rest of your pregnancy

@TenThousandSpoons0 thanks for understanding. Like you’ve suggested, I’d decided to wait until seeing the specialist tomorrow. I think early last week I was just panicking and wanting any info I could get as soon as I could get it.
The fetal medicine consultant I saw on Monday had implied that I would potentially be a candidate for the fetal laser ablation at 16weeks, at which point they would do the amniocentesis too. But that sort of forces me into surgery which might not be the decision I would choose given all the facts, but she suggested that I may not have the luxury of time to decide. Very stressful.
All I can hope is that the specialist I am seeing tomorrow is experienced enough to be able to make an educated guess as to whether the fluid that we’re seeing on the bigger twin is in fact ‘just’ a symptom of the TTTS/TAPS and not a chromosomal abnormality, though reading more about the TAPS it seems that if those are the symptoms exhibited this early then we may not have a viable option to progress the pregnancy anyway. My heart is breaking.

@TametheDragon how did your appointment go? I hope things became a little clearer and you’re doing ok just now!