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Tibesar likened image guidance to using a GPS in favor of a paper map. “When you’re trying to get somewhere using a map, you may not know exactly where you are; sometimes you have to make your best guess. With GPS, you know exactly where you are at all times. The same is true with image guidance. During surgery, we know exactly where we need to make each bone cut.
“For Austin, and for many other kids to come, this represents a significant advance in terms of precision, and, therefore, safety for these types of surgeries.”
Austin would become a pioneer.
In the operating room, Tibesar and his colleagues opened Austin’s skull and attached four “distractors” over his head from ear to ear – these distractors would allow Austin’s skull to expand and grow. At the completion of the surgery, four small key holes protruded from Austin’s head, and his parents were entrusted to turn a special key twice a day to slowly expand his skull, causing little to no pain for Austin.
"It was really hard at first," Phil said. "You are literally moving his skull… I couldn’t believe I was doing it.”
After 30 days back home, Austin’s skull had expanded nearly 3 centimeters and was starting to grow properly on its own.
In February 2013, Tibesar and his colleagues removed the distractors in order to allow the bones of Austin’s skull to fill in more completely. Since the surgery, Austin has experienced few complications and has only been back to Children’s for routine check-ups.
According to Tibesar, the next-closest place that offers surgery for kids with Pfeiffer syndrome is in Chicago. Thankfully for Austin and his family, he would be able to be treated less than an hour from home.
“Things have been normal,” Mary said. “We have our daily worries, but otherwise Austin is going to school, talking more and making friends. As time goes on, we are getting more normal around here.”
For other parents that will face a similar journey, Mary encourages them to “take things one day at a time.”
Austin will have to undergo another surgery in a few years to ensure that the bones of his face grow along with the rest of his skull, but he’s well on his way to a much more typical life.
"We need parents who put their trust in us," Tibesar said. "It's a big honor to have that trust, but really, [the children] become the pioneers and we are able to apply this technology to the benefit of others."