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In the winter of 1988, I was born with Pfeiffer Syndrome, just one member of the family of craniofacial syndromes which
includes Apert Syndrome and Crouzon Syndrome (click here for more information on Pfeiffer Syndrome). I had several surgeries as a child, just as all "craniofacial kids"
do, including sagittal synostectomy, coronal synostectomy, two canthal advancements, lambdoid synostectomy, and a cranioplasty. Basically, a lot of head surgeries, doctors appointments, and hospital time.
Because we lived in a state devoid of craniofacial specialists, I did a lot of flying to and from major
cities in California. I dealt with all the social issues like teasing, staring
in public places, rude questions, etc., that I'm sure you have gone through as well. I also started wearing a
bone conduction hearing aid as a baby since both ear canals ended in a blind pouch. Later,
my right ear canal was opened and I had an ear drum grafted so I could wear a behind-the-ear hearing aid. My tonsils were also removed when I was younger in an (unsuccessful) attempt to help me breath and get
rid of sleep apnea. The most major surgeries were yet to come.
My parents and doctors all
knew I'd be having a midface advancement sometime in my life, but it was assumed that this would be in the form of the traditional
LaFort III procedure. Sometime between then and 2001, medical science was advancing as surgeons began applying an
old medical principle--gradually moving bone and allowing it to heal as it moved--to a new area of the body: the mid face. Two
forms existed: internal distraction and rigid external distraction (RED).
My surgeon
felt that I would do well with the internal distractors, so in May of 2001, I went into surgery and began
the distraction process (see the About RED page for more details on the process itself). After the usual unpleasant recuperating that
surgery requires, my family and I noticed that the distraction had not yielded much change despite the
fact that the screws were turned regularly. It turns out that something had "slipped out" internally which
caused the process to not work correctly. I went in for a second surgery as an effort to fix what had happened. About
a week after the surgery, we realized that this still did not work. That was when I went in for
the third surgery that month to have the RED put on. I then went through that procedure over the next
month and a half or so. Finally, with a short fourth surgery, my surgeon removed the RED.
The results
proved that the entire ordeal had been worth it. I could breath through my nose, people didn't stare at me as much
as they had before, and my eyes finally had the protection they deserved. It would be lying to say that the entire process
was simple and easy in any way, but, then again, that's why this website was created.
Since
RED and the creation of this website, I've had several other surgeries with more to come. I know how "fun" all
of this medical stuff is so I hope that you can trust that I understand what you, as a craniofacial patient, are going
through. Feel free to email anytime! I love hearing from you guys!
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