We didn't know his brain was being replaced by cysts at this time. 🕊️💙

Multicystic encephalomalacia is a reality I wouldn’t wish on anyone. It allows a child to look outwardly healthy toward the beginning of the disease process, all while quietly writing their future from the inside out. When we received the diagnosis, I did what any terrified mother would do: I searched the internet, desperate to find just one other family who had walked this path. I looked for any shared experience, even just a small amount of hope. Instead, I found very little - just a few case reports or journal articles. I hope this video brings a little more humanity to this diagnosis. I can appreciate the reality that this is an end-stage pathology, but it’s also a family’s lived experience. #infantloss #griefjourney #neurology #medtok #nicubaby