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.

So sorry. No advice but a handhold and I’m sure someone will be along soon with advice

No advice, but a hand hold. It sounds like an impossibly difficult situation for you to deal with. I am so sorry. I hope you get the support and help of your GP or other professionals. Thinking of you.

I think you're being very strong in your determination to end the suffering as soon as possible and I hope your GP gives you help and support to comy with your wishes.

I’m so sorry OP what a lot to take in.
My thought is that it might be worth waiting for the diagnosis in 2 weeks so you know more clearly what the situation is. But it might be worth checking in with the GP as well about your decision. Hugs to you.

I'm very sorry OP - I had a similar experience in my first pregnancy. We did have a CVS, and the baby did have a chromosomal anomaly, but we terminated because of the fetal hydrops (fluid buildup) rather than the chromosome issue per se.

I'd suggest googling antenatal results and choices (ARC) - they have a very knowledgeable and supportive helpline.

I have a chromosome abnormality. I'm here, I work, own my own house, drive a car etc etc.

www.arc-uk.org/

Do you live somewhere where you need a referral for a termination? You're still fairly early on in the pregnancy (though I doubt you feel that way) I'm surprised you can't just book the appointment yourself.

For what it's worth, I'd do the same in your shoes. Hoping it gets easier for you and that this time a couple years from now you're holding your two babies tightly.

Thank you all. I don't feel very strong, I just feel very stuck.

That was it @offbeatgirl, the baby is covered in hydrops. Its head, its neck, its stomach... They consultant was really concerned about them. I'm really sorry this has happened to you too.

I'm glad you lead a normal life, @Bigdreams. Had it only been a chance of a chromosomal abnormality then we would've considered all the options. Unfortunately as I said there is a potential of the baby suffocating in the womb and its heart stopping during pregnancy - it could be stillborn which is a risk I am 100% not willing to take.

Thank you for your kind words @Rtmhwales, right now they mean a lot. I'm not sure about the referral, I don't really know where to begin in regards to having a termination. I thought the GP would probably know how to help me though, plus shes a wonderfully understanding woman.

I'm not very knowledgable I'm afraid, but you've only just had this scan today. It's a massive shock and you understandably don't want it to be like this. However give yourself time to think and to let it sink in. Maybe see if you can get another scan next week to see if the situation has changed.

As your baby's loving parent you are looking at all and any options that is best even if that means saving your child from thjngs like you have mentioned before it's born.

That is a very brave decision because even though your heart is breaking you are putting your child before you. No one could ever ask for a better parent than that.

I'm very very sorry you find yourself in this situation, nature has taken the decision for you so please don't feel like you are choosing anything or that it's somehow anything you are to blame for or even in charge of.

The go will be able to advise and probably refer you. Your gp is likely the best placed first port of call for you. She will I assume know about the scan and the situation.

I am sending you as much support as I can pasta.

Hello,

I had this in my first pregnancy. Cystic hygroma and hydrops found at the 12 week scan. I’m sorry to say that at my follow up scan the week later we discovered the heartbeat had stopped. But the hydrops has clearly got worse for the baby during the week so it was inevitable in our case.

That was nearly 4 years ago, I now have a DC and am 8 months pregnant so it wasn’t the end of our story.

Sending you and hoping that whatever happens you have support in RL

Also meant to say that we were researching termination for medical reasons during that week but the decision was taken out of our hands with the heartbeat stopping. I understand completely the position you are in right now x

I'm sure I won't be as much help as some of the ladies on this but couldn't read and run.

I've been through an abortion at 12 weeks where the feotus was incompatible with life. It would not had survived. This was a planned abortion but very strong hormones. Kinda felt like choice had been ripped from me and was very sad. It got better for me, but it was heartwrenching at time. I hope it gets better for you soon xx

Thank you so much, @Ginkythefangedhellpigofdoom. You're right, nature has made this awful decision for us. Everything you said was really comforting, thank you.

I think the consultant was heavily implying that that was most likely to happen to our baby, @Singerleon. I'm so sorry that it happened to yours.
Do you mind if I ask what happened to you afterwards - did you naturally miscarry or did the baby have to be removed? I'm really sorry, they're not very pleasant questions, I'm just not sure what would happen if it ends up being the case for me.

Thank you @Dommina, I'm so sorry that that happened to you. I'm glad to hear it got better for you though. I've cried a lot today but I still don't feel like its hit me properly. I'm dreading it.

I'm glad pasta, I can't begin to understand what you're going through but I know just by how you talk how much you love your child and can see you are trying your best to do the absolute best you can for your child even if it's the most nightmarish situation for you, you're willing to face that if that's what your child needs and that is commendable pasta it really is.

[flower]

I am so sorry you’ve had this news. This is my day job so perhaps i can help a bit.

Did they offer you a CVS today? You can have one any time from now and the initial results take 2-3 days.

It’s very very likely your baby will pass away over the next couple of days. Either way, the baby will not currently be in any pain or suffocating in any way at the moment.

Your GP is definitely an option but the benefit of waiting a bit is you will get the full testing done on the baby afterward if you want to.... and this could inform what testing and plan of care you have for when/if you have another baby. The entire process will be owned by the fetal medicine team so it’s a bit more joined up. We also have a “sensitive” pathway at the clinic we have funding with that they run for our referrals. So lots of benefits for waiting a bit but of course do go to your GP if that’s what you need to do.

ARC is amazing so do get in touch with them.

Thank you for commenting @OhTheDramz, I appreciate hearing it from the other side. It feels terrible to wish but I do hope that it just passes away shortly as you say. This is the worst thing I've ever been through.

They have offered me a CVS for Friday, I'm going to still go to the GP on Thursday to see what she says but until then we're potentially keeping our CVS appointment. I just can't bare the thought of all of this any longer.

I'm suddenly very worried now - what are the chances of this happening in a future pregnancy? I have a beautiful little 21 month old girl, and she has always been perfectly healthy. But now I'm also worried that maybe she isn't as healthy as we thought, what if she has any issues we haven't discovered yet?

I managed to fall asleep okay which I was dreading, but I woke up only a few hours later. I can't do this.

You are very brave and strong and I really wish you all the best. You are making the decision that is right for you and your family, including this baby.

This happened to us, nuchal 10mm, severe hydrops. It was a clomid baby, no children already. We had CVS and it was trisomy 21. We had a tfmr at Marie Stopes because I wanted surgical management. Arc are amazing, please ring them. It’s likely to be chromosomal, in which case it’s one of those things and your have a pretty high chance of a healthy pregnancy next time. We now have a 6 year old son who is healthy and beautiful. At the time it was probably the worst thing that ever happened to me but I don’t think about it much now, the pain does go eventually. Thinking of you.

We had similar news at our 12 week scan with our second child. It was very obvious that there were severe abnormalities and it definitely made the decision to terminate easier as it was obvious our baby would not survive. We had the CVS and found out that he had T18. It helped me to know the reason behind the abnormalities and also to know that it was just one of those things, that shouldn't Affect subsequent pregnancies.

I would recommend carrying on with the pathway through fetal medicine. They are used to dealing with situations like this and so we found we were always treated with care and respect. It also gave us access to their bereavement midwife for counselling and the consultant said we could call him with any questions at any time in the future. When I was pregnant with my third child, they contacted us to offer additional testing/scans to help us through the worries of early preganancy. I know you want this over and done with as quickly as possible but it’s definitly worth considering the longer term impact in your mental health and future pregnancies.

I've faced this. Third pregnancy after 2 MCs. Chromosome issue, plus every other marker showing abnormal on the scan, kidney, brain, facial, hydrops. I was given the option of wait and see til being rescanned at 20weeks, as hydrops and some of the other issues can recede (but can leave unseen damage). I was given a minimum 40% chance of late miscarriage/still birth. I just couldn't take that chance as I knew I would never get pregnant again and would never be a mum. So we made the very difficult decision to terminate.

I now have two beautiful girls. Even if we didn't I think we made the right decision for us. I totally understand your desire to just get on with your decision. Waiting for the results of the CVS was the longest few days of my life. You can and will recover, just be kind to yourself.

I'm sorry this has happened to so many of you but I'm so very grateful for you all sharing your stories with me. I feel a bit less alone.

I've looked into the different ways you can have an termination and my preferred method would be a surgical abortion whilst asleep. I'm not sure if that would be offered to me but I'm desperate to just go to sleep and wake up when its over.

I was thinking its probably worth me keeping the CVS appointment even after going to my GP beforehand - would the hospital still do the test even though I'm quite sure I want to go through with a termination as soon as possible? No matter what the outcome of the CVS says, its still a very poorly fetus that isn't likely to live. However as previous posters have said it might help me in a future pregnancy to actually know the results of the test.

I have been through a similar situation.
At the first scan (13 weeks) I was told the baby had cystic hygroma (NT was 11mm) and hydrops.

The doctor did not want to tell me about a prognosis so I did my research and found the baby had about zero chance to survive.
I decided to refuse CVS and let nature take its course. I learnt at 18 weeks that the baby's heart had stopped beating at 14-15 weeks. I chose to give birth to him so I could say goodbye and so that he could have a proper funeral (I don't know about the UK, but in France he would have been treated as medical waste).

We have since had a perfectly healthy baby girl.

Take your time and do what you feel is right.

Pasta, I felt the same as you about surgical management but the nhs in my area were really struggling to arrange it. BPAS/ Marie Stopes can do it though so it might be worth ringing them and tentatively arranging it for next week, you can cancel if the nhs come through for you.
If you go to Marie Stopes, insist that the NHS book you follow up as we didn’t get any and I really needed counselling.
They should offer for your next pregnancy to be consultant led by a fetal medicine consultant, at least until 20 weeks or so. We had fortnightly scans from 6 weeks but were very high risk- ICSI pregnancy, bleeding and later a placenta praevia. DS is something of a miracle!