What happened
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.
5 Comments
Patty
December 17, 2014I have suspected Ayshe has seizures for years, but her eegs are normal and the dr.s are saying that her episodes are too far apart to medicate even if they were seizures. We are on a watch every 6 months with neurology and it makes me so uneasy because I am afraid they are missing something.
I want her dr’s to know about Phoenix and I will l print this out with your permission and make them read it. Aperts is so rare, that I bet most neurologists never even have an apert patient in their entire career. They need to remain teachable and listen to
I remember one morning when we checked on Ayshe and she had thrown up in the night. Her bed was 4 feet from me and I am the lightest sleeper imaginable. I am used to checking on her multiple times in the night since she was born. I heard nothing and was so shocked to see her little face and bedding in the morning. She doesn’t throw up hardly ever, but when she does there is no sound at all.
I will never forget your little Phoenix or your family. Thank you for educating us and trying to help us with our babies. Thought we have never met, your family is always in my prayers.
Beth Coleman
December 17, 2014Yes, please print it! If anything good can come out of this I hope it be that other parents are more aware that seizures really seem to be an issue for some of these kids.
KT
December 23, 2014I’m very sorry that your precious daughter died. I hope that you find comfort knowing she didn’t suffer. Thank you for sharing the details of her passing. My daughter, 3, also has Apert and is mildly affected, so it’s good to know have the information you’ve passed on to those of use in the Apert community.
Lauren
December 27, 2014I still think of you and your family often. My prayers will continue as well. I am thankful she did not suffer, though I know it does not make your pain go away.
Veronica Indihar
January 20, 2015beth,
Thanks for sharing what happened to Phoenix. I can’t even imagine how hard is to go through all this. My daughter Juliana is just 3 months younger than Phoenix and has Apert as well.
Apert is difficult as it is but what you went through is just too difficult to even describe with words. Be strong!
I will keep you and your family in my prayers.
Veronica