Posted at: 04/02/2013 10:37 PM
Updated at: 04/03/2013 9:04 AM
By: Naomi Pescovitz
Thanks to a team of doctors at Gillette Children's Specialty Healthcare, and a good dose of optimism, the life of a Grand Forks teenager is forever changed.
"I knew it had to be done because I could have gone blind or died," said 15-year-old Hannah Twedt.
At 9 years old, Hannah was diagnosed with a Saethre-Chotzens Syndrome, a rare genetic disorder characterized by premature fusion of bones in the skull called craniosynostosis. But it was not until Hannah was 14 that doctors from Gillette Children's realized how much her symptoms had progressed.
"The box that Hannah's brain lived in was too small," said Dr. Robert Wood, Craniofacial Surgeon at Gillette Children's.
In January of 2012, doctors at Gillette performed a complex surgery to reshape Hannah's skull, relieving pressure that would have caused blindness and neurological impairments. It is a surgery rarely performed on children Hannah's age.
"In Hannah's case, we did advance and remodel basically the anterior half or third of her skull, and I think she has a result where for most people now, she's Hannah. They look at her and they don't even know that she's had surgery," Wood said.
"The main concern at that time was that she would lose her vision within a short period of time because it was already progressing past that point, and now we are just thankful that it was finally caught and that we get some answers and that she got treatment for it," said Sue Twedt, Hannah's mother.
Hannah's headaches have improved since the surgery. She also suffers from autism, which has improved since the procedure as well. Hannah and her parents notice she is more social, better at recognizing emotions and more patient than ever before.