Please help - much wanted pregnancy has tiny chance of survival. Deciding to terminate.

[PastaSauceHoarder]

Hello, I'm sorry I'm not sure where to put this really but I really need someone to talk to.

I'm 12 weeks pregnant with what we really wanted to be our second child. Had our dating scan today and they told us that the babies nuchal fold is measuring at 8.7mm - it has a high chance of a chromosomal issue.
As well as this it has fluid all around its head and under its skin in its stomach. A consultant told us that even if there wasn't an issue with the chromosomes it could potentially suffocate under the fluid. She kept saying its heart is beating 'for now'. There was a lot more but at the moment I can barely remember what was said. But chances of everything being okay are very very slim and we haven't got any hope.

I'm just numb. They want to send us for all the amino testings but I don't want to carry on. I feel so awful saying it but I just want it gone and over with. I told the consultant that I want to terminate but they said they couldn't do that until it was diagnosed with having a chromosomal issue, which could take another two weeks. My stomach is growing and I am still so pregnant and I just can't do this anymore.

We're going to visit my GP on Thursday to ask if theres any chance of being referred for an abortion. I'm absolutely heartbroken but I feel like its the right choice for us - this baby is very very poorly by the sounds of it. The only thing is I know nothing about abortions, I never in my life thought I'd need one. We wanted this baby so much.

Can anybody offer me any advice or a hand hold please? I never in a million years thought this would happen to us, I'm only 23 years old. I just want it all to be over.

Also if you do go surgical you don’t get the remains to bury but it helped me to think of it as a miscarriage so I didn’t need to go down this path emotionally although everyone is different.

Spaniel I don't think this is the time or place is it? I sincerely hope you aren't trying to push pro life debate.

OP is in a terrible situation and her much loved baby is very sick. If baby made it to term, and through birth, quality of life would be severely impaired. I wouldn't want that for my child or my existing children and what the OP is going through now will change her forever. A still birth is horrific and I wouldn't wish to knowingly continue with a pregnancy where that was a high probability along with everything else.

OP, I am very sorry this has happened to you. I wish you well

I don’t think OP should answer that as it won’t be at all helpful to her.
I can tell you how I felt in the same situation:
The sooner over, the sooner you can move on and start to heal emotionally.
If your baby is unlikely to survive then it’s better earlier than letting them suffer.
Also personally I was going to have ELCS due to not wanting to have a vaginal birth. I was less likely to have a vb for a stillbirth. If left until after 18 weeks I would have to have a vb. This doesn’t apply to everyone though.
Finally a plea- only helpful comments from now on.

The thing we some chromosome disorders, is that the side affects can be wide and varied some people show no ,or few symptoms other people such as my son have complex disabilities because of them which only become apparent as the child develops Op.

Still birth has a higher risk of medical complications for the mother too and there is no risk of potential suffering for the foetus.

OP I hope you are getting the support you need in real life and you can find an option that gives you the outcome you want.

Is amnio sentisis a possibility? We were given a similar prognosis and my dc is currently sitting in my kitchen eating homemade burger and chips after doing mock sats at school!

@ x2boys
With that level of hydrops we aren’t talking about someone with trisomy 21 who is otherwise healthy and with a reasonable quality of life. The baby is really ill.
This isn’t actually a situation where there’s a choice to make. No one is taking a healthy baby home after a diagnosis like this. The only decision is when, not if. The when and how has to be however OP feels most comfortable whether that’s letting nature take its course or intervening.

Spaniel, but what about the risk to the mother, physically and mentally, to carry a baby and know that the likelihood is it will be stillborn? And why put a baby through the pain and suffering it will endure if it is born?

No one going through this horrible process takes this decision lightly but we are just doing what is best for us and our babies. You don’t get to judge us at all, especially if you’ve never been through this. I hope you never have to.

Firstly I just want to say a massive thank you for all the supportive comments - the understanding from you all is overwhelming and I'm so grateful. This is a horrible situation that you're all making just a little bit better, so thank you so much from the bottom of my heart.

In regards to that previous comment I'm very glad that most of you agree that a stillbirth would be more traumatic than an induced miscarriage/termination. Having to do this is awful but I 100% know that I can get through it - delivering a stillborn baby however would destroy me mentally and I already have a little girl that I need to be there for.
Also the consultant told me yesterday that going to term (should it even survive that long) and delivering it stillborn could potentially affect my future fertility. And I am desperate to have more healthy children one day.

In case anyone else feels the need to question my decision I will say this once more: my baby is very very ill. Its extermely likely that it will die in my womb as it is riddled in hydrops and almost definitely has a chromosomal abnormality. I hate everything about this and I can't change the outcome no matter how much I want to.

Pasta, I'm sorry that you're not only in this situation, but having to field some less than helpful comments here. Posters need to recognise that diagnosis does not always = prognosis. My baby had a relatively benign chromosomal anomaly, but my consultant said I had a less than 5% chance of leaving hospital with a living baby as a consequence of the extent of hydrops (would basically have stopped development and function of organs eventually) - and my baby had a smaller cystic hygroma than yours. Somewhere I still have the chart of outcomes by size of cystic hygroma - after a certain point the underlying cause is immaterial to the prognosis.

I don't regret terminating - the thought of continuing until miscarriage or stillbirth, looking more and more visibly pregnant, and having to field comments about my pregnancy from well wishers who didn't know, is too horrible to contemplate - though I respect any woman who wishes to make that choice.

Pasta, I'm so sorry for that news. We were in a similar place with a suprise but very much wanted pregnancy when our baby was diagnosed with severe abnormalities at the dating scan. We had a CSV which showed T13 and noone had much hope we would make it full term. Like you the thought of stillbirth terrified me, I just didn't think I'd be able to cope. Also I didn't want to be visibly pregnant in quite a big workplace and didn't want to be forever more 'that lady that lost a baby'

I had a referral to Marie Stopes for s surgical termination who were amazing and understanding, as were the feotal medicine team afterwards.

Yes it was a hard decision, yes it was and still is,desperatly sad and we were angry and felt cheated by life but we made it through and have never regretted the decision.

You know what is right for you, and when you make your decision, surround yourself with people that will listen and be there with you, talking really does help

Sorry Pasta, I just saw your reply from last night. I had an ERPC under general anaesthetic. I was in and out of theatre in approx 30 mins. The recovery was good, and from speaking to friends who have gone through a ‘natural miscarriage’ it was easier on me physically and mentally.

My consultant at the time said that the same condition was very very unlikely to happen again in another pregnancy and just ‘one of those things’. I did have another MC before having my DD but it was a blighted ovum so completely unrelated and just bad luck.

I went to see the GP this morning but there wasn't a lot she could do unfortunately, apparently the systems have changed. She used to be able to just pick up the phone and get me booked in for a termination but she can no longer do that. She did give me a number to ring to book it myself so I'll ring them shortly.

She did seem to think it was a good idea that we go to the CVS testing tomorrow so I think we're going to go. But then I'm not sure how its going to benefit us, we already know that the baby is very ill and we've already made our decision. I just don't know to be honest.

Thank you @Singerleon, I definitely want something I can physically recover from as quickly as possible. I'm sorry about your previous miscarriage, that is terribly bad luck on top of everything else you went through. I'm glad you had a daughter in the end though, mine has been my rock the past couple of days.

My heart goes out to you Pasta at this awfully traumatic time. And to everyone else who has been or is going through the same.
Wishing you strength.

Have the CVS. It will help because if it gives a diagnosis (like a trisomy). In a future pregnancy you’ll then know the risk of recurrence- I was told 1% which is pretty low.
To reassure you it isn’t painful and I’m a big wimp.

Hi op. I'm on phone so can't pm you, but I've been through this (very similar, baby with very severe hydrops) (he is now born and completely healthy)
If you can pm me when I'm back home I could talk to you over pm and maybe give you some advice.
So sorry your going through this. It's absolutely horrific

❤ I'm so sorry pasta

We've decided to definitely go to the hospital for the CVS test tomorrow afternoon. As well as that I rang the number my GP gave me earlier and it turned out to be BPAS which I'd read about a lot when researching. A nurse is going to ring me on Saturday for a consultation.
So we've got two things going alongside each other - tests at the hospital and planning a termination at a clinic. No-one can give me an exact timeline of when this will all be over so I've just got to hope that it will be soon.

I'm dreading seeing it on the scan tomorrow. It barely moved during the two scans I had on Tuesday, it wasn't wiggling and moving its arms and legs about like you'd expect to see. It was just curled up and swollen. It looked awful. I feel so sad for it.

I'm sorry @justforthis6473, I'm not quite sure how to PM on here? Amazing to hear that your son is healthy after having hydrops, I imagine you must have had a very worrying pregnancy though.

Thank you for the reassurance @ValleyoftheHorses, it seems like quite a scary test so I'm glad you said its not painful.

And thank you all again for all the supportive comments. Its been hard but its actually been very therapeutic to write everything down on here.

@PastaSauceHoarder neither am I!
Hopefully someone will help us! But I'll log on to the computer version and hope my pm comes through.
Can I just ask, where roughly in the uk are you? Are you near to Birmingham?

I've pm'd you @PastaSauceHoarder

How did it go?

Hi pasta.

Iv been thinking about you today.

I hope you don't feel pressure to come back on here but remember if you need support there will be people here if you need them.

Thank you @ValleyoftheHorses and @Ginkythefangedhellpigofdoom, I appreciate you're asking about me. Its been a very busy day today.

We went to a hospital in a different city to have the CVS test done this afternoon. I had to be scanned again by a consultant and a midwife which was very difficult, as for only a few seconds we heard the baby's heartbeat. We definitely weren't expecting it so it really took us off guard.
Then we went to sign the consent forms so they could go ahead with the procedure. Only we told the midwife that whatever the outcome would be with the tests we had already decided to terminate anyway and had spoken to BPAS due to severity of the hydrops. She seemed surprised and informed us that in that case we didn't have to have the CVS test done and instead she would speak to the consultant and ask if we have grounds to terminate (which our local hospital didn't think we did on Tuesday). I think she saw herself how ill our baby was on the scan.

She came back with the consultant and he explained that in only three days our baby's hydrops had gotten far worse - they're now developing around its lungs and theres more fluid in its stomach. He said that theres definitely grounds for termination with our local hospital and that they can test it once it has been passed for the chromosomal abnormalities. He rang them and arranged for me to begin the first stage of medical termination on Monday.

I'm so relieved that I'm now allowed to have this in hospital, and both the consultant and midwife were so reassuring and completely supported our decision. And now theres finally an end in sight, by Wednesday night all of this will be over.