High nuchal and fetal hydrops -experiences please

[GaryWilmotsWedding]

Hi all

Had our 12 week scan yesterday and unfortunately had a very high NT measurement of 4.6mm and saw in the notes when we got home that the sonographer also detected hydrops in the abdomen. As this is our second child we both knew immediately the nuchal fold did not look right. Heart appeared fine and moving normally. Growth almost exactly in line with where I thought I was based on dates.

Before we had seen the notes I was doing ok at keeping calm but having read up since then I am feeling a bit hopeless. It seems very unlikely our baby will survive and that we may very well have to play a part in deciding the timing of his or her death. I have an appointment for a CVS on Friday morning and obviously will know more next week, but I was wondering if anyone could share their experiences if it's not too painful? I'm not looking for stories of miracles (although of course it would be great to think there is some hope) but rather I feel so uncertain about how the next few weeks are going to unfold and would be very grateful to hear how things happened for you.

Something else to mention: I had a very strange rash at 8 weeks pregnant that I did go to my GP about but they felt it was nothing to be concerned about if it resolved in a few days, which it did. It was all over my body and caused my face to swell up considerably. I was very tired and extremely itchy. I am now concerned I may have had Parvo virus but mentioned it to the midwife this morning and she just said to discuss it with the doctor on Friday.

I spoke to ARC yesterday who were fantastic - clear, informative and calm. Despite this and the reams of info on Google, I still feel I am in an information black hole so would appreciate any experiences you could share.

[KateRaeganandMichael]

Hi x I cant see why they wouldn't have explained more or referred you to another hospital. If you don't mind my asking - what did the sonographer say/do? Was a doctor involved in the scan at any point. I know how scary it is and must be for you xx
I know a few people who have down syndrome children (beauties) and their options were laid out pretty much as soon as the scan was done. Have you been google-ing?

[KateRaeganandMichael]

Sorry just read the last bit properly - google is never a good thing in situations like this x

[GaryWilmotsWedding]

Thanks for your message Kate. I think because we don't know what is causing the high nuchal reading/hydrops they felt they weren't able to tell us more. We immediately said we wanted the CVS as soon as possible; we both knew what the nuchal reading may mean, although I was unfamiliar with hydrops. From what I have read the combination (nuchal/hydrops) doesn't look good and frankly I am not expecting that this pregnancy will continue, either because I miscarry or we opt to terminate it when we have more information. I am just really trying to prepare myself for the next few weeks and understand how it might all play out.

[KateRaeganandMichael]

Oh absolutely x make sure that you have the right people around you as these days/weeks/months could be some of the toughest ever. Have you told many people about the pregnancy or were you waiting til after the 12 weeks x