New hope for people living with hydrocephalus thanks to a boy leading the way

New hope for people living with Hydrocephalus

RIVER FALLS, Wis. — Three in 1000 people are born with Hydrocephalus.  It's a condition where fluid gathers in the brain. 

And now there's new hope for those living with it, thanks in part to a little boy from River Falls, Wisconsin.

Carter Callow is a leader, as his father Dan explains, "Drop him off at daycare and the kids just start jumping up and down my best friend Carter's here, my best friend Carter is here."

Callow has been capturing attention from the start. He was born with hydrocephalus, fluid in the brain that enlarges the skull. Dr. Robert Tibesar is a craniofacial surgeon, and says "Carter was on the very severe end. His developed early in utero, and when he was born it was already severe," said Tibesar. "Carter was not able to hold his head up, he would lay on his side, and his head would lay on the side of the crib," said Tibesar.

He would need a series of big surgeries to reduce his skull. But then Tibesar and a team at Children's Minensota decided to try something new — instead of removing his skull piece-by-piece, they would work with a bio-medical engineer and renderings to do it in one surgery. It required intensive planning and digital trial and error. 

It took 8 and a half hours but it worked. They reduced his skull size by 45%. 

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Dr. Tibesar says when Callow came back in, he could hold up his head. That was emotional — even for a professional. 

"It was amazing, it was very gratifying."

It was also historic, because the medical team did it in one surgery.

"The hope is that this will go way beyond this hospital, and that Carter's story will significantly positively influence many other future patients."

And it's positively affected Callow's life, too.  

He's now in kindergarten gaining strength and skills, making his way and leading the way.

His mother Lisa says, "We want families that are going through something similar to know there is hope. There are doctors who are out there who are gonna find a way."

He has been working hard in school in therapy. His parents say he loves assembling toys and listening to music. 

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