1 in 2 for downs, 8mm nuchal, problems with heart

[Sothisisshit]

Hello all. I have just had the scan with very bad news. I am thinking of going straight to termination without waiting for confirmation from cvs. Just don't want to be pregnant for a minute longer than necessary with this awful result. But I guess there is a tiny and minute chance that this is ok and I have to know for sure. Anyone been in this position?

Yes, that's where I had the scan. And that's who handed me the Marie stope website address at the end of this really traumatic day. It was so weird in some ways, like I'd come in off the street with an unwanted pregnancy, rather than having this quite devastating news after so much hope. It all felt a bit casual I guess. I can't remember if I've said this but the room was full of doctors for the cvs, who were laughing and joking. But I guess I could try calling them tomorrow.

Ps. Did you all cry? A lot? I am trying not to be such a wuss. I think even my family, although sad for me, think that I should count my blessings and all that. It IS much less bad given that I have two kids already, I do totally see that. But ... this is harder even than I'd imagined. I keep having half an hour of normality, then having to hide from the kids and sob in my room.

I'm so sorry you are going through this. Yes, crying all the time is normal! I did all the time.

I had a tfmr 6.5 years ago due to T18 (Edward's) at 14 weeks (my dates, 12 theirs, but that was because the baby was so small and deformed). I had a CVS the same day the scan showed all the anomalies and the hospital arranged for the termination a week later. I opted for a surgical termination as I didn't want to be left to deliver at home which is what would have happened. It was carried out on a gynae ward so no sign of any other pregnancies. The only issue was that I didn't conceive again for 18 months despite trying straight away. I don't know if the termination had anything to do with that.

I don't understand why your hospital/midwife/consultant have left the organisation of a termination up to you. That's terrible! Do you have a midwife or a consultant? If so please contact them and ask them to help, not that you should have to.

Get in contact with ARC (antenatal results and choices). They were really helpful in helping me come to terms with what had happened.

It's a devastating diagnosis regardless of children or not so don't feel even slightly mitigated! I cried non stop for a few weeks and then it tapered slowly from there but I wasn't able to properly function for a while. I still cry now even though I had my rainbow. The cvs will tell you boy/girl so think about whether you wAnt to know and maybe name him/her. We got a lovely plant in the garden to remember her and I take comfort in caring for it and sit there sometimes when I feel sad. I know that's a long way off for you but give yourself time to cry and come to terms with everything.

Am angry at the hospital that they aren't being more proactive! I would ring them again and ask - maybe ask your partner to do it if you can't face it?

Thanks both. Peaches, what a horrible trauma for you too. I don't think I was complacent about this sort of thing before, but now I see even more clearly how many people are carrying these scars, even if they remain hidden from public view.

Yes, I am trying to understand why the hospital have done this. It does seem really unusual. I think I was slightly in shock by the end of the day on Friday. Maybe I was acting 'OK' and so they thought I'd be fine to organise this myself. It seems especially strange that they directed me to Marie Stopes, which has failed a recent inspection, on safety grounds as far as I know and isn't even offering many procedures. The doctor who did my CVS was quite insensitive though and told me, while she was going the procedure (having essentially written my baby off) that she was going to shag the pilot on her way home to Brazil, so that she could get pregnant too! I think this was an attempt to 'lighten the mood.'

Yes, I think I will get my partner to call them tomorrow, as I don't seem to be able to get through a phone call without sobbing.

Oh sweetheart :( I would be tempted to formally complain about that. She should be nowhere near women in such a horrendous and highly sensitive situation

I still cry 20 months later. Tbh I think I've only just started functioning fully again after loosing dd2, getting pregnant and loosing ds all in the space of a year.

Allow yourself to cry. I tried to be 'strong' and it didn't work.

It is strange the hospital are expecting you to sort it. How far are you? I know after 13 weeks if you want a surgical procedure the nhs have limited doctors to perform the procedure. If you're opting for a medical management then I'm stumped as to why they would.

I had a medical management for both my tfmr and my mmc. Dd2 was 22 weeks so the medical management was the only option and similar to labour, just shorter. The medical management at 14 weeks was very different, much easier physically. I could have had it on the gyne ward but I asked to go to labour as there is a specialist suite at my hospital for stilbirth and late miscarriage, I'd used the suite before with dd2 so felt more comfortable there. I think I'm in the minority.

My only advice would be to do whatever it is you are 'comfortable' with and whatever your gut tells you is the right decision.

Could you get hold of your hospital yourself? It's really strange that they've done that as that hasn't even been mentioned to me.
And as for laughing and joking that's disgusting!! They should be more sympathetic, I get they do this type of thing every day but for you it's a complete and utter shock, and if you are anything like me hadn't even ever thought this type of thing would ever happen.

It's normal to cry and it is no less devastating if you already have children. I have a dd that is 5 my ds would be 2 in January...just because I already had my dd didn't make it any easier or mean any less, every baby is unique and you shouldn't be made to feel like you aren't allowed to grieve etc just because you already have dc.

Have a look at the help and support Arc provide. Honestly it can be one of the safest places xxxx

Could you get hold of your hospital yourself? It's really strange that they've done that as that hasn't even been mentioned to me.
And as for laughing and joking that's disgusting!! They should be more sympathetic, I get they do this type of thing every day but for you it's a complete and utter shock, and if you are anything like me hadn't even ever thought this type of thing would ever happen.

It's normal to cry and it is no less devastating if you already have children. I have a dd that is 5 my ds would be 2 in January...just because I already had my dd didn't make it any easier or mean any less, every baby is unique and you shouldn't be made to feel like you aren't allowed to grieve etc just because you already have dc.

Have a look at the help and support Arc provide. Honestly it can be one of the safest places xxxx

Hi all. I am going to try the hospital today. The private clinic are currently saying they can't do the termination for up to two weeks. I really don't want to wait that long. I feel in a bit of a nomansland at the moment, I don't know who is responsible for my care. Actually I don't think anyone is, perhaps because it is still relatively early. Perhaps I'm being a bit precious about it.

I'm just over 12 weeks. I know quite a few of you went for medical management rather than surgical, and I think that is partly because you were further along in your pregnancies. I would prefer to go for the surgical option, just so that I don't need to know much about it. And I'm a total wimp about pain. But does anyone know whether surgical termination has a different/worse impact on the likelihood of getting pregnant again, and is that one reason why more people seem to select medical termination?

Anyway, I guess I will be able to ask ARC some of these questions.

Thanks everyone xx

I had surgical at 15 weeks
It didn't cause any issues for me and I have since had a healthy baby

I couldn't read and run as was in a very similar situation back in January of this year. Two healthy DCs already and the 12 week scan in early Jan revealed a very high NT (11mm), hydrops and issues with other organs, all pointing to a baby that wouldn't survive the pregnancy. We were seen the very next day at St George's for a specialist scan where the consultant confirmed there was no hope for the baby with a NT that high and the other issues. We chose to turn down any further testing like CVS and went straight for a TFMR which they did about 4 days later at my local hospital. I had the procedure probably second week in January (surgical) and am now expecting DC3 in December. All looks perfectly healthy this time around. Hope this gives you hope OP.

Darling 20 years ago we had a baby diagnosed with hypoplastc left heart syndrome and a poor nuchal fold result. I couldn't terminate in case of a miracle. He was born at 27 weeks too poorly to survive. Sometimes I think it would have been easier to terminate but I loved him and still cry but not very often any more. DD was born 51 weeks later. She was, is and always has been perfect.

There aren't right or wrong answers but there is support and love as this thread has shown.

I hope it all works out for you and that your life is filled with love.

How you getting on sothisis?

You've been in my thoughts

Hello all, thanks so much for your concern, and for sharing your stories, and congratulations too. So I had the termination last week. I am in a bit of a mess to be honest. I feel as though I should be able to move on and be OK, but feel a bit paralysed to be honest. Can't seem to get any work done, which is making me feel additionally stressed. And mostly I'm obsessing about whether to try again, but I feel a strong superstition that we have been sent a message, or a warning, and that we were asking for far too much. It's weird, because I am not normally superstitious at all. The potential joy of another baby seems to have completely disappeared, and it just feels like heartache. So I am sad about the baby that we have lost, but I had stupidly started to visualise our three DC family, and am now struggling to come to terms with the fact that won't be happening. My DH and I keep arguing too, as he says that we can try again 'if that is what I want' - in other words, he doesn't. I have to respect that, but feel resentful too. God, this is harder than I expected when I was imagining bad scenarios prior to the scan. Meanwhile I feel as though I am neglecting my current DC, and putting both my marriage and job at risk. But things will get better, I know.

I'm so sorry.

Give yourself time. It might not be what you want to hear but it took me months before I stopped feeling that fuzzy headed feeling and not being able to do anything.

I felt the same about ttc after dd2. We held off for a while so I could recover a bit mentally and physically. Our subsequent pregnancy, while fairly short, was stressful.

I ended up being signed off sick for about 6 weeks after dd2 and then doing a phased return. My doc and boss were fully supportive of this (in practical terms in meant my boss could access money to cover me) is that a possibility for you?

I found taking things right back to basics helped a bit. Do the minimum to get through. Greif is overwhelming and exhausting, your brain process a lot in the background which is why everything feels such a struggle. Allow yourself time. Feed, clothe and get the kids where they need to be, kisses and cuddles when they need them and forget everything else. My house was a tip for weeks after, I couldn't cook a meal or even decide what I needed for the shopping. Ask for, and accept as much practical help as you can. It is much, much harder than you might think (and others might think) but you can get through it. Life is very different but you find a new normal.

Sands are brilliant. I found I was very lonely afterwards, like my world had fallen apart and no one understood, then I went to a sands meeting and met people who did understand. It has helped me hugely.

Whatever you do don't beat yourself up, be kind to yourself and do whatever you need to to get through. Greif isn't just tears and heartache, it's confusion, fuzziness, anxiety, anger and a whole world of other emotions. 💐