Monday , December 15, 2014 - 2:28 PM
OGDEN — Despite having traveled throughout the country to interview mothers of children with Craniosynostosis — a premature closing of the skull that prevents the brain from growing into its natural shape — there was still one thing about the condition Kase Johnstun did not know.
Having lived a successful and surprisingly normal life thus far, the 39-year-old Ogden resident was unaware that surgery to address the condition had nearly resulted in his death at eight weeks of age.
But Johnstun learned this fact while completing research for his book, “Beyond the Grip of Craniosynostosis: An Inside View of Life Touched by the Congenital Skull Deformity,” (published by Mcfarland & Co Inc. and available Dec. 30, $39.95.)
“My mother was the last interview I gave,” Johnstun said. “Every time I met my mom (to tell her about the research), she would cry.”
Johnstun said he knew she was holding something back and was surprised to learn that doctors had told her to say her last farewell to him because they didn’t believe he would survive the loss of blood.
While the book chronicles the struggles of families faced with helping their children born with the disorder, Johnstun said the book has wide appeal as it shows the strength, particularly of mothers, in fighting for what they believe is best for their children.
“The mothers are always the advocates,” he said. “They are always the strongest advocates for their children.”
Concerned that his Craniosynostosis might be passed down to his son, Lukas, said he was motivated to complete the research for the book.
“I wanted to know if I were going to put my wife through the same struggles and pain,” he said.
Jonhstun traveled the country interviewing families struggling with his same condition, as well as doctors and experts who could help demystify the often misdiagnosed birth defect.
He said the book is the first of its type to address the issues behind Craniosynostosis.
The book is a mix of memoir, retelling the stories of other families and medical study.
Johnstun’s work is centered on the struggles of families faced with the disorder.
“Your baby is going to be a retard. He has no soft spots,” is what a nurse said in the delivery room the day Johnstun was born.
While a devastating and harsh delivery of his diagnosis, Johnstun now believes he may owe his life to that nurse because she accurately recognized his condition, a gift that not all children with the disorder receive.
He discovered that children with the birth defect have grown up to have miss-shaped heads when they didn’t receive the proper diagnosis and treatment.
“I would have looked like a football,” Johnstun said of his life had he not received the treatment that nearly cost him his life.
Children born with Craniosynostosis, often referred to as cranio kids, are born with a defect in which one or more of the sutures between the bones of the skull close prematurely. This prevents the brain from growing into its natural shape, as the brain controls the shape of the skull.
Treatment for Craniosynostosis usually includes surgery to help with the symmetry and appearance of the head and to relieve pressure on the brain and allow it to grow naturally. Craniosynostosis can be genetic, can be a result of environmental limitations in the womb, or can be caused by many other factors, Johnstun said.
“I interviewed a mother who told me her brave little boy loved his ‘superhero scar,’” said Johnstun. “It’s unbelievable the roller coaster of emotions cranio families have to deal with and how frequently the feelings can grab you by surprise.”
The book is an effort to dispense critical information and paint a vivid picture of life behind the statistics.
“I’m told repeatedly that Craniosynostosis is rare, that 1 in 1,700 or 1 in 2,000 children are born with this,” he said. “But just over 4 million babies are born in the U.S. each year. When you do the math, that’s a lot of parents who are in the same vulnerable position my parents were in and a lot of kids growing up with all these mixed feelings. I want to provide comfort and recourse to them.”
Johnstun is known for other works besides this book geared to address a specific issue.
Johnstun is an award-winning essayist. He is the co-editor/co-author of Utah Reflections: Stories from the Wasatch Front (History Press).
His work has appeared nationally and internationally in journals and magazines.
He was a finalist for the Autumn House Press 2013 Award in Creative Nonfiction.
Johnstun is a full-time lecturer in English at Utah State University.
To learn more about Kase visit his blog http://kasejohnstun.blogspot.com or Facebook page: http://www.facebook.com/KaseDJohnstun
You may reach reporter JaNae Francis at 801-625-4228. Follow her on Twitter at JaNaeFrancisSE. Like her Facebook page at https://www.facebook.com/SEJaNaeFrancis.
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