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Bentley has encephalocele which is usually 100% fatal, babies that have it usually dont survive to birth and ones that do usually only live for hours to a day. Its a random birth defect where the top of his skull didn't close properly and his brain was pushed out into a cyst like sac that protects the brain with skin.
We'll be finding out at the end of December if any of the brain is functioning thats in the sac when they do a mri. Once they know more about whats in there the teams will come up with a surgery to either remove the entire thing (if no brain in it is functioning) or a surgery that puts it back in his skull. Either way they will cover the hole in his skull.
They wont do the surgery until hes at least 6 months old so until then he will be fitted with a helmet once he starts squirming around on his own.
They have no one to really compare him to so the effects of it on his mental abilities will be a mystery, but as of now hes doing everything a normal new born should do.
We'll be finding out at the end of December if any of the brain is functioning thats in the sac when they do a mri. Once they know more about whats in there the teams will come up with a surgery to either remove the entire thing (if no brain in it is functioning) or a surgery that puts it back in his skull. Either way they will cover the hole in his skull.
They wont do the surgery until hes at least 6 months old so until then he will be fitted with a helmet once he starts squirming around on his own.
They have no one to really compare him to so the effects of it on his mental abilities will be a mystery, but as of now hes doing everything a normal new born should do.
Organizer
Jamie Krownapple
Organizer
Sugarcreek, OH