Anencephaly

[limast]

Hi, I had my 12 week(ish) scan on Thursday and our baby has anencephaly. We have been advised that we can go to full term but that our baby is incompatible with life and if they managed to survive birth, their life would be very short (minutes, maybe hours). We have opted for TFMR and I'm due to have a 'medical miscarriage' this week (13 weeks).

This is our first baby and we are both heartbroken. Our scan showed a very lively baby dancing and wriggling around and I'm struggling with the fact that there is nothing I can do to change that the baby we saw on the scan will never come home with us.

I'm finding it difficult that I am still very much pregnant but in a completely hopeless and upsetting way. I've bonded with my tiny bump and can't work out how to feel towards it right now.

I'm also terrified of what the next week will hold, physically and emotionally.

Any advice would be appreciated.

Thanks

How awful I am so sorry xx

I'm aware I'm the only one who has posted and have no actual advice so bumping x

I'm so sorry. My cousin had a termination for exactly the same reason, and I had a late missed miscarriage (he died at 18 weeks but not picked up until my 20 week scan), and went on to deliver the baby, so I have some idea of what you are going through. No specific advice but just wanted to say I'm thinking of you, and your little one. It's such a heartbreaking position to be in. xx

From my own experience, spending time with the baby, seeing them to say goodbye properly, naming them etc really helped. I don't know if that's possible at 12 weeks but if you have the choice, I really found it helped. We also had him named and blessed by the hospital chaplain, which, although we are not religious, which felt like an acknowledgement that he was real and had existed.

Thank you both for your comments. I'm not sure what we will be able to do at this stage after baby is born. but have decided to name our baby and try to make to most of any time we get to say good bye, including the time I have left with baby before the hospital appointment. Again thank you for taking the time to reply xx

Oh you poor thing, this has to be one of the worst things to happen. I cannot give direct advice but I will say be kind to yourself, your partner and don't think you can't talk to people in real life.

We lost our baby this weekend and I was approx 13 weeks. We found out the previous week, at our dating scan, that the baby had serious problems and a CVS showed trisomy 18, meaning our baby like yours would not survive. I found the days after the scan the hardest and whilst losing the baby was difficult, I knew that it was going to happen and had accepted that it wasn't to be.

I saw my baby and held her, I found this helped. I'm happy to answer any questions you have if you wish to PM.

It's obviously still raw and thinking about what should have been is really upsetting but for my own sake, and for my husband and family who have also found this tough, I'm trying to be positive and think that our time will come. This was our first baby and we will definitely try again.

Thinking of you xxx

Thank you for your messages. I had my baby yesterday and got home today.
We saw and held our baby in his (we think a boy) little knitted cot, made the most of every second we got with him and got every little memory and memento we could. I felt all of this really helped.. although I'm still breaking inside.

Seeing him really helped too because while there was a perfect little body with 10 fingers and 10 toes etc there was clearly a huge problem with his scull and brain. He would never have lived outside of me.

Also I can't rate my midwife highly enough. She was amazing and made the worst experience of my life a little less awful and even gave me some good memories to take away from it. Genuinely greatful to her.

I hope everyone else posting is doing okay :)

My partner and I are taking a wee break from attempting parenthood and going to spoil ourselves for a few months.

Thank you for all your kind wishes xx

Just 💐 💐 hope you’re ok

You've been through such a lot. Glad you have some memories and that you had a good midwife. Love to you both x

I'm glad you had good support. Look after yourself, take care xxx

Many years ago, I was the midwife to a lady in your situation. Saddest shift ever. My thoughts are with you and your partner

I'm glad you had a good midwife. Thinking of you, your husband and your little one.

How are you doing today?

My baby was diagnosed with Acrania at 12 weeks, meaning no skull but babies brain was fine. Acrania can lead to the condition your baby has as the brain is exposed. I had a surgical termination at 14 weeks, two weeks ago now. It's absolutely devastating as like you this was my first pregnancy. I would say make sure you and your partner communicate as much as possible. My boyfriend has been my rock through this! You will get through it, it will get easier for you (and me) ❤️ stay strong xx