Anyone else made a difficult decision after Spina bifida diagnosis?

[diamonds2023]

Last 7 days have been a whirlwind going from an exciting pregnancy about to choose baby clothes and thinking of names - To then be told suddenly out of no where they have discovered Spina bifida and baby will have serious health conditions and struggles.
We have made the difficult decision of letting her go because she is suffering and we wouldn’t want her to come into the world to suffer more :(
(19 weeks currently)

I am so so so sorry - that must be incredibly heartbreaking. I am lucky in not having had to make that decision myself but for what its worth I would almost certainly make the same decision. Life is hard - but much harder with something like spina bifada. I hope you have good support around you and give yourself time to mourn the life you thought the baby might have had at this time. In your case - and everyone is different - I would try and focus on the fact that at this stage they are more of a potential human being than a full one.

I’m so sorry this has happened to you, I don’t have this experience but we were faced with the potential of some serious illnesses where we felt we wouldn’t be able to continue the pregnancy so I wanted to comment to say I would, and many others would, do the same. It doesn’t mean there’s any less love for the little one, you’ve just had to make the (very brave) decision that the suffering needs to end. Be very kind to yourself, and take advantage of any support you have x

Hi lovely. I just wanted to let you know that you’re not alone. We didn’t have the exact same diagnosis, but we faced the same prospects for him and the same choice that wasn’t ever really a choice. I’m 6 days post TFMR at 22 weeks. I wish I could offer you an ear to listen but I’m still in survival mode myself. What I will say is ChatGPT has been invaluable to me, from fully understanding complex medical information (verified by doctors when I put my understanding to them), to understanding and trusting our decision making, to understanding and working through the unique type of trauma and grief that comes with TFMR. Also the TFMR subreddit has been helpful because there’s more of an active, specific community on there. And finally, I just wanted to let you know that I was terrified of the procedures involved and didn’t know how I’d get through it. But what I actually experienced was being held and supported by the some of the kindest, strongest, most moral and inspiring people I’ve ever met. Right until the end I knew he was being looked after and protected and cared for by people that I didn’t even know I needed. I am unendingly grateful to them. You’re not alone, my love x

Sending massive hugs. I have never been in this situation but know in my heart that I would do the same if I was bringing a life full of suffering into the world. It is a brave choice made out of love.

I am so, so sorry diamonds. How heart-breaking. I've never walked that path myself but my grandmother had a baby born with spina bifida. This was in the days before screening of course. She went to pieces and had the baby placed in a 'home', then turned to alcohol. My uncles made contact with her as adults and I met her a few times. Her quality of life was absolutely minimal. She's one of the reasons I decided never to have biological children.

Sending enormous hugs.

I'm so sorry you are in the situation OP. I chose TFMR due to trisomy 13, patau syndrome. I was earlier in the pregnancy than you though. I assumed they'd do it surgically, but they wanted me to have it medically- with the pills. If you have any questions feel free to ask.
Its not what are thinking about now, but they will generally advise the 5mg of folic acid in your next pregnancy, rather than the 400mcg over the counter one.

Remember that you aren't alone and this isn't your fault x

Well done for making a brave decision xx

So sorry this happened to you OP. I would have done the same. Absolutely heartbreaking ❤️