November 10, 2010

Craniosynostosis Report


Charlie met with his Cranio-Facial surgeon yesterday.  His Craniosynostosis condition is stable for the moment, with no real urgent need to operate.  He will be meeting with the doctor again in March for a pre-op appointment to assess the best timing for surgery.  Again, Charlie's skull prematurely fused in the womb (a condition known as Craniosynostosis) and will need to be separated so that the brain has room to grow as Charlie grows.  Surgery will likely occur sometime between May and August of 2011.  The surgeon would like to perform the surgery before Charlie's first birthday.  He also said with confidence that the fused skull has nothing to do with Charlie's brain hemorrhage and that the two are not linked in any way. 

What will the surgery entail?  Charlie's surgeon works in tandem with a neuro-surgeon who will assist in separating the skull plates and lifting them out of their current position.  The surgeon will then remove skull from the back of Charlie's head and swap it with the front skull plates in an effort to create a flat ("normal") looking forehead.  Charlie will only be in the hospital for two days and then return home without headgear.  Charlie's parents are very happy with this course of action and are confident that this will get him out of the woods for health issues presented by his fused skull. 

Charlie will be meeting in the coming weeks with his geneticist, who is still trying to piece together Charlie's patchwork health issues.  He'll also have repeat renal and cardio ultrasounds to assess the state of the duplicate collecting system in his kidney and the enlarged PFO and murmur in his heart.  Thank you all for your sweet notes, continued financial support and love.  Charlie is rewarding us all with steady progress and big smiles.

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