High risk combined test and baby showing Cystic Hygroma

[PigeonDuckGoose]

We had our 12 week scan and initially were relieved to see a wiggly baby with a heartbeat after multiple losses.

However baby had an increased nuchal translucency and a cystic hygroma.

Our combined screening test has come back already with a 1 in 2 for down syndrome and 1 in 39 for Edwards and Pataus.

My mind is all over the place, I've read the documentation sent to us by the screening midwife multiple times which covers the three syndromes and the next tests available (we have opted for the NIPT test next).

We've been given no information on the Hygroma so I've been left to Google which seems to imply even if our baby doesn't have any of the three syndromes they will likely be non compatible with life.

I have no idea what to expect next, I am so overwhelmed by this ans possibly having to make the horrible decision of carrying to term a baby that won't make it or choosing a TFMR.

Has anyone experienced anything like this before?

Thank you for the response. I joined the Facebook group after I saw it mentioned here and it is very helpful.

To update.

Currently 31 weeks with baby girl. So far so good.

Flagged as a concern for gestational diabetes but passed the glucose test.

Have a scan next week to check on size (unrelated to the hygroma, due to my maternal age and weight).

I know you don't need the reassurance anymore but in case anyone else comes across this thread.
Had I think 5.5mm NT and cystic hygroma at 12 weeks. Saw the fetal medicine consultant a few days later who also saw problems with baby's heart. Opted for the cvs that came back clear.
Was then seen at fetal cardiology at GOSH, where they saw serious heart problems but it was very early to properly diagnose (14 weeks)
Was seen a few more times at GOSH, where the prognosis improved each time.
Baby needed 2 heart surgeries but was done by 6 months and is now a very healthy adorable cheeky 2 year old.

That's amazing, thanks for sharing! Was your baby's cystic hygroma isolated or had it spread all over? Our feral medicine specialist has been very negative about our outcomes. We have amniocentesis booked but the waiting and thinking the worst is awful

Pure never progressed past being down the back. It just got smaller.

The amniocentesis wasn't as bad as I expected, I built it up in my head. The worst part was waiting for the results I think.

Sorry I meant to directly respond to Bergmum 🙈 thanks for responding anyway x

That's amazing, thanks for sharing! Was your baby's cystic hygroma isolated or had it spread all over? Our feral medicine specialist has been very negative about our outcomes. We have amniocentesis booked but the waiting and thinking the worst is awful

If I remember correct it was isolated and resolved itself after a few weeks.
They said that the raised NT could have been caused by the heart defect.
The consultant we saw at first was also pretty negative and was sure it would be trisomy 13 or 18. The fetal cardiologist was always more promising and reassuring though. They have an absolutely wonderful caring team at GOSH.

@PigeonDuckGoose I’m so sorry I didn’t see your post earlier.
My son had a very thick nuchal fold with fluid all down his back to his hips.
It was suggested I terminate because he wouldnt make it to 20weeks. I chose to wait for it to happen naturally had the Nipt and amnio - both clear and by 20 weeks the fluid had resolved and he is now 3 and fhe happiest child you will ever meet.
He has had a few other health concerns and seen more specialist than most people have in there life (everytime younsee one you get referred to another).

It was such a traumatic pregnancy, but he is wonderful