My story is a long one but I would greatly appreciate anyone who could take the time to read it!

I was away one night and the fire alarm went off in the hotel. I had to walk up and down many flights of stairs and after I had some bleeding. It was the middle of the night so only hospitals were open. I went in and after many hours found out that my baby had a severe brain malformation and problems with his spine. That was all we found out at first.

Fast forward a few weeks later and many tests later, we found out what was going on at a high risk pregnancy clinic. Our baby had a severe brain malformation and spina bifida. We waited more and had more tests done. At 28 weeks we were told that because of these two issues that he would not have any physical function from the hips down, no fine motor skills in his hands either. On top of the fact that his brain malformation would make him mentally disabled. We felt like there was nothing left. No quality of life.

We were absolutely heartbroken. We still have no idea how it wasn't caught in any of my scans. My new OB told us it should have been caught at 8 weeks. We were told that if it had been caught before 20 weeks they could have done fetal surgery to possibly correct at least the spina bifida. It was too late. We were given the impossible decision of choosing between continuing the pregnancy or ending it.

If we continued, he would need surgery right after birth to try to remove the sac of spinal fluid and close it, otherwise he wouldn't even survive. And even if they did there was no guarantee he would survive the surgery. He would be in the hospital for the next few months and after that would need to come in at least once a week for the next few years of his life and every few weeks for the rest of his life to drain his shunt and monitor his mental disability. We decided to end the pregnancy. The only thing more painful or impossible than doing that, was not doing it. We couldn't bear to watch him suffer, and he wouldn't even be able to communicate it.

We lost him on May 21. I had to carry him after he passed for a day and a half. I gave birth to him on May 23 at 29 weeks and was in labour for 14 hours. It was traumatizing. We had been trying for almost 2 years before we got pregnant. It was the happiest I've ever been in my whole life and now I'm absolutely devastated. It's three months later and we are still waiting on his autopsy results to find out if his conditions were genetic and the chances of it happening again if we were to have more kids.

I still feel like we made the best decision given the circumstances, but I feel so extremely guilty and heartbroken. If anyone reading this strongly disagrees with what we did just know you can't make me feel any worse than I already do, please speak kindly. I really just needed to tell my story and hope for some kind words. Thank you to anyone who took the time to read this. ❤️