On May 21st, 2014 I found my baby girl dead in her crib. 6 months 25 days. 209 days total without her. I am not the same person I was 210 days ago. The next few days were a blur of horribleness. Signing death certificates, funerals, cremation. Words that don’t belong in the same breath as 19 month old. We didn’t know what happened to our baby girl. We put a happy toddler to bed one night and the next morning our world was shattered. It wasn’t until months later that we got an idea of what happened. After a specialist examined her brain he said this was a patient with epilepsy. It is his belief that she either had a seizure that night or some type of neurological misfire. This would of been her first seizure. We never saw her have one. Her official cause of death is affixation by aspiration. It is my belief that she had a seizure in her sleep (she never woke up) threw up, choked and died. She didn’t suffer. Words I never thought I would have to type.
Now I want to address my Apert family, I know that Apert Syndrome has a very wide spectrum and every case is different. However, I have been seeing a lot more of you talking about seizures. I don’t know if that is because I am more aware of them or if they are happening more. I want you all to be aware of what happened to us, because I don’t want you to have to walk to same path as me. Phoenix had very few of the problems that can be associated with Apert Syndrome, but yet here we are….talking about her in past tense.
There is not an hour that goes by that I don’t think about Phoenix. She really was the happiest baby in the world. I can’t wait to see her again. When I do, I am never letting her go.