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.

Hi Freshbread,

Firstly, congratulations on your baby. I know this isn't how you wanted it to be but this was always be your baby whatever happens in the coming weeks and months.

Secondly, You might want to start your own thread as sometimes people don't come on to the older threads and might get more response that way, so I am sorry you haven't had many replies.

Anyway, I just wanted to reply because our second baby was diagnosed with a cystic hygroma and hydrops at 12 weeks. We were offered and declined a termination and instead had weekly viability scans until she died at 18 weeks.

I am so glad I continued my pregnancy and don't regret that at all, even though I was and am still pretty devastated at what all happened. It was pretty clear pretty quickly that she was going to die before term given the extent of the hydrops, but before then, we had had very tentative conversations about how they might consider a late amnio (we didn't want any invasive testing to increase the risk of a miscarriage) to give a diagnosis prior to delivery to allow planning regarding neonatal heart surgery or palliative care.

A friend suggested recording her heartbeat on one of our phones at a scan, so we were able to do that and I'm really glad we've got it.

The consultant at one scan even did a 4D scan for us so we could see her. Also he told us what he thought her sex was at 13 weeks, so we could start to give her a name rather than "it". He was clear that he couldn't be completely sure, but I did joke at the time that if it was a boy, he had bigger problems to be dealing with than being called a girl's name.

Everyone was so lovely, from all the fetal medicine doctors and midwives, the anaesthetist who personally put up the pain relief drip (remefentanil) when I was induced following her death, the bereavement midwives afterwards.

It was really hard having a bump and knowing that I wasn't going to take home a baby at the end of it, but I'm really glad that all of our friends knew what was going on. I've got a couple of lovely photos of me and my bump though and I'm really glad that I've got them.

If I think of anything else, I'll add it on but think that's enough at the moment in case MN suddenly gobbles the post as it sometimes does!

Thinking of you and hope things turn out differently for you and your baby.

Hi Freshbread, I'm glad to hear that your baby is hanging in there. It sounds like you have a supportive medical team, which really helps. I hope you're getting personal support from friends and family too, because the time between scans can be very hard. One of the midwives suggested that I get myself signed off work, but I chose to stay working because I needed the distraction and I couldn't face staying and home and thinking incessantly about a situation that I couldn't do much about. Different coping strategies work for different people. It is very hard when your pregnancy becomes more obvious, but you don't know if you will have a happy outcome. I named my baby and created a memory box with scan photos in etc. I'm lucky to have a healthy son now, but the daughter I lost will always be my first child.

Take care