Might be just me, but I think that if a serious medical condition like this is discovered in utero, the more humane approach is to abort the pregnancy.
We'll never know if we made the right choice, and I wish with all my heart this kind of surgery was available eight years ago, holding her corpse broke me completly. At least she is not suffering.
No, you're not alone and that is a very very common opinion.
It's an opinion that very quickly evaporates in my experience when somebody becomes quadriplegic, is about to have a child with a potentially debilitating disease, or is otherwise confronted with the reality of severe disability. Not the intellectual realities of disability that I think anybody reading this on HN can imagine what the difficulties might be for a quadriplegic, no I mean the actual pain filled, shit covered, fear inducing, inconvenient and potentially crappy reality a severe disability. You have to be alive to realise how bad things are, which is kind of a wonderful thing I think.
To be honest, it's something I hope you never have to confront. I really do my Friend. Be well. :-)
Edited to Add: You lot should stop down voting him in my really not very humble opinion, that's a super common opinion that I don't feel has an ounce of malice behind. But rather curiosity.