Bad 12wk scan - ?termination rather than CVS/further screening

[not2hasty]

Have obv name changed for this.

We had 12wk scan for DC2 today. As soon as the scan started DH could see that it looked different to DD's 12wk scan (my view was obscured by the Dr's arm). The atmosphere in the room was palpable and they explained that the baby had hydrops both around the head and trunk (limbs were the only bit unaffected) as well as an NT of 5mm and absent nasal bone.

We are lucky that our local hospital where we had the scan has a v large fetal research dept and so we were reviewed by a consultant immediately who explained the seriousness of the situation. We were offered further testing (which they could do that afternoon), but explained that the scan results indicated a less than 50% chance of the baby surviving the pregnancy/having a typical life span. Despite being (or maybe because of being) paediatric nurse myself I know I've never felt I would be able to manage a child with complicated/life limiting problems, I've also watched my Aunt's marriage break up after having a child with global developmental delay (they don't have a diagnosis for him).

As you can imagine, we were (still are) devastated by the news, but our overwhelming feeling is that the CVS/further testing would delay the inevitable and that we are err'ing on the side of having a termination asap.

Have spent the afternoon googling/mumsnetting around the subject and haven't found anyone with a similar presentation, or who's posted having come to the same conclusion without having further tests - just wanting some reassurance that with such negative news it's not daft to not want to drag it out even further.

Thanks in advance x

I am really sorry for you, what an awful situation. I am afraid I have no knowledge on the subject but you need to make the choice which you both feel is for the best for you and your DC1. I hope you find some answers on here.

Thank you for your kind words candr x

I don't have any experience, but just wanted to say that you're in my thoughts and I'm sorry you're faced with such a difficult choice. Hugs.

I hope you don't mind me posting. Want to share my sisters story with you.

My sister had a baby with hydrops who they also thought was going to be born with down syndrome, they told her that if she decided to go ahead with the pregnancy that the baby stood no chance of survival.

My niece was born at 32 weeks, hydrops affecting most of her body and in High dependency baby unit for many weeks. My niece is now 11, has on going health difficulties but she is in a mainstream school, full of energy happy and our little miracle.

I understand that my niece is a very rare exception. I really hope I haven't upset you further but when I saw your post I had to reply.

Hope you are ok and send you very best wishes xxxx

This is my worst fear. Have a huge hug.

Personally I don't think you're being unreasonable at all, though il prob get flamed for that. Like you, I've already made up my mind I couldn't cope with a severely disabled / ill child. Obviously, if I was unaware & gave birth to one, I would love them with all my heart & do the best I could. But as a conscious choice...no. Poor little baby, & poor you. You need to do what is right for your family. Have the drs definitely said there's no likely positive outcome?

Thanks for the messages guys - starfish71... no upset caused, am so happy for your sister and niece, but think given the odds we're facing our mind is made up.

Know hydrops can sometimes develop/be noticed later in the pregnancy but think that with it being noticed at this stage (and with the other signs) it's not looking good. Consultant said just the NT measurement would give us 50/50 chance but with the hydrops on top it then makes it less viable.

Boymeetsworld (use to love that show!) and ratbagcatbag - thank you, am so glad that I'm not alone in being so fearful of these.

Hi there - so sorry you ate having to go through this.

It sounds like I had a very similar scan to you - baby had hydrops and 5mm NT. I was told there were 90% sure of something wrong but did go ahead with further tests. I had the CVS a week later and by then the NT was 8mm - results were that baby had Turners syndrome.

It's not necessarily too serious a condition on it's own but the baby detioiorated further (heart issues and increasing hydrops) and was unable to survive so I had a termination. I'm not sure what to advise re. waiting, I was glad we found out first though I think as you do sometimes hear of similar situations to ours where everything does turn out fine.

Wishing you and your family all the best x

I'm so sorry.

You have to decide for yourself but I think you might be better having further tests because you'll then have more information. A friend of mine had a late termination and suffered even more afterwards because she felt there was a chance that the consultant got it wrong and she'd terminated without a good reason. (FWIW this wasn't the case but I think it made it even harder for her.)

I'm very sorry for what you're going through. Would it benefit from posting in Special Needs: Children and speaking to those who have experience of hydrops? The ladies there are just wonderful and very supporting.

Hello, I had a termination on 24th sep a few days after the 12 week scan without further testing. Gross hydrocephalus and other things they didn't like the look of. I opted for a quick resolution as the hospital would do a surgical terminatiOn that way and for me, this was best. The results of the karotypIng have come back completely normal but I have no doubt it was the right thing and they think it's genetic now. Like you, I could see immediately that it wasn't right on the scan. I have a completely heathy 4 yr old and could tell the difference.

Just sending you a hug. This is a horrid thing to deal with what ever you do.

hi there not2hasty. I had a termination at 13 and a bit weeks in oct 2010. The baby had hydrops and nt measurement of 6mm at the 12 week scan. i was persuaded to go for cvs but it was irrelevant. Before my results were through I went in and asked for a termination based on the hydrops. At that point they rushed through my results and the baby was found to have downs syndrome. We talked about life with a child with downs and tried to work out what we would do but tbh, from what I understood about hydrops I was never ever going to have that baby.

My decision was largely informed by the fact that I had previously terminated a pregnancy at 25/26 weeks a few years before (for hypoplastic right heart) and I didn't want to get any further in my pregnancy and then have to give birth to a larger baby who I would have fully bonded with.

In the end i had to have a medical termination (giving birth) I held my child and was able to see the hydrops so I was relieved that i felt I had made the right decision.

I am really really sorry you are going through this. xx

I am very sorry you are going through this and that you are being faced with this decision. Ultimately I think you have made your decision, I would make a similar one.

sorry not2hasty, i didn't give you any advice last night, just told you what I did, partly because as redwelly says, it sounds like you've made up your mind. I would suggest that a cvs might help clarify things and wouldn't make it a much longer wait.

Manitz - you're right my decision is made -their going to do tests after the termination to see what was happening. Thank you for sharing your story though & to other posters for their supportive messages, it's helped me alot in this v difficult time.

Hi there not2hasty. I hope everything goes as smoothly as possible and that you have lots of real life support. You may find the support board useful in this section of mumsnet. There were times when I found it helpful to post there and to read other peoples posts as I knew noone in rl who had a termination.

Take care of yourself. x

Am really lucky to have amazing RL support from family & friends. Had been bit blasé about telling people (false security of pregnancy no.2) pre-scan.
Find it impossible to be anything but honest to them & all have responded with love & support. In this respect am feeling v lucky.

Yes I have always been clear about the choice i made and most people have been sympathetic. I have found it helpful as I hate keeping secrets and I think it could have eaten me up if I had had to lie about something so important to me.