For the confused…

After talking to some friends on the phone and having to consistently explain the same things over and over, we figured we haven’t clearly articulated all of this craziness with our son.  Here’s (hopefully) a post to put everything straight.

The main thing to clarify is that we have been dealing with multiple (and at times unrelated) diagnoses.  The first is craniosynostosis (premature closure of the bones in the skull).  That one is the one we are going to have to have surgically fixed.  The second, unrelated and untreatable, is a diagnosis of Dysgenesis of the Corpus Callosum (DCC), which means that there is a malformation of the corpus callosum, or the part of the brain that connects the left and the right side.  This diagnosis doesn’t change, and is unrelated to, the first diagnosis; so we will still be going to surgery (we find out more about that on Tuesday of next week) in Winston-Salem.

Jacqueline and I have been studying up on DCC, and what that means, so that we have the right questions to ask the doctors.  It is a fascinating thing to look into studies on the brain and how it works, because it becomes plainly obvious that even the brightest and most educated neurologists are barely wading into the kiddie-pool when it comes to having probed the depths of how the brain works.  With the advent of neural imaging such as the MRI, we (and by “we” I mean doctors representing humanity, not so much a group that includes myself… I’m a campus minister) are just starting to be able to figure out the basics.

As far as pop culture goes, a representative of a person with a corpus callosum disorder is Kim Peek, the inspiration for the character Ray Babbitt in “Rain Man.” Kim doesn’t have a corpus callosum at all, and has some other brain anomalies that Benjamin doesn’t have, but I thought he was an interesting example.