Northfield toddler pioneers surgery for Pfeiffer syndrome - New York News

Northfield, Minn., toddler pioneers surgery for Pfeiffer syndrome

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A 3-year-old boy from Northfield, Minn., who was born with a rare condition is pioneering a first-of-its-kind surgery that could help him look like his peers.

Austin Graue just celebrated his birthday, but his family says it's hard to celebrate in public because they face a lot of questions.

"When we are in public it's the most challenging because you will have people say, 'Why does he look like that?'" Mary Graue, Austin's mother, explained.

Austin was born with Pfeiffer syndrome, a rare genetic disorder in which skull bones fuse early in development and prevent the skull from growing normally with the rest of the body. It also causes facial abnormalities that affect quality of life.

"We were devastated," Mary Graue admitted. "You plan to have the perfect little guy, and an hour after getting born, he's rushed to Children's Hospital."

Dr. Bob Tibesar is a craniofacial surgeon. He, along with two other doctors, worked to combine two technologies to place expanders inside Austin's skull using an image guidance system that helped put the spacers in place without hitting any major blood vessels.'

"There were bolts coming out of his head," Phil Graue, Austin's father, told FOX 9 News.

In the end, a much safer and more effective surgery was pioneered.

"In looking at the literature, there are no other case reports of this exact procedure for this exact problem," Tibesar told FOX 9 News.

With the bolts in place, Austin's parents needed to turn them with a key-like system twice a day for 30 days to help their son's skull slowly expand.

"It was really hard at first," Phil Graue admitted. "You are literally moving his skull, so it was like, 'Wow. I can't believe I'm doing this and it's not some doctor.'"

After 30 days, the family found the success they were looking for. Austin's skull expanded by nearly 3 centimeters and was growing on its own.

"It's unbelievable," Phil Graue said. "You look at the head MRI now from before with all the pressure."

Now, the Graue's are moving forward with the knowledge that Austin is improving, and the success of the surgery gives doctors hope because they already have another child scheduled to undergo the same procedure.

"You need parents who put their trust in us," Tibesar said. "It's a big honor to have that trust, but really, they become the pioneers and we are able to apply this technology to the benefit of other children."

The Graues hope Austin's story educates the public because the ultimate goal is to help Austin look like other kids and fit in.

"I just want him to be happy and I think all the surgeries and hospital time now is going to make that happen when he's older," Phil Graue said.

Tibesar said he believes that by the time Austin is a teenager, he'll be just like any other child.

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