Overlooked and Misdiagnosed: New Memoir by Kase Johnstun Calls Attention to ‘Cranio Kids’ Birth Defect

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Author shares his struggle with cranial birth defect and interviews families, doctors, and surgeons in new memoir to offer first-hand perspective (and relief) of Craniosynostosis.

Your baby is going to be developmentally delayed, is the nicer, water-downed, version of what the nurse said in the delivery room the day Kase Johnstun was born. She inappropriately and incorrectly labeled his condition to his sobbing mother. This type of misdiagnosis happens more often than you’d think. In Beyond the Grip of Craniosynostosis: An Inside View of Life Touched by the Congenital Skull Deformity (Mcfarland & Co Inc Pub), which publishes this January, author Kase Johnstun sets out across the country to interview families struggling with his same condition, accurately known as Craniosynostosis, and interviews doctors, craniofacial surgeons, neurosurgeons, pediatric anesthesiologists, and other experts who can help demystify the often misdiagnosed birth defect.

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.

“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.”

In Beyond the Grip of Craniosynostosis, Johnstun is gentle as he is thorough in his due diligence. Throughout the book he dispenses critical information and paints 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.”

Part memoir and part medical study, the book touches on the modern medical history of cranial sutures, as well as ancient treatments dating to the time of Hippocrates as well as surgical techniques used today to allow the brain to grow naturally. It is with great care that Johnstun chronicles the experiences of American families affected by Craniosynostosis. Each entry demonstrates the uniqueness of that case, the chosen treatment, and its result. A true testament to a second coming of age, Johnstun, now in his thirties, encapsulates a rite of passage that everyone will be able to relate to. Beyond the Grip of Craniosynostosis highlight’s one man’s quest for information, the internal conflict that arises, and the desire to break down the enormity of a situation into smaller manageable pieces to regain a sense of control.

About the Author
Kase 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 such as Creative Nonfiction Magazine, The Chronicle Review, Label Me Latina/o, Prime Number, and as a regular contribution to The Good Men Project. He has an MA and an MFA in Creative Writing, and his set of essays Tortillas for Honkies and “Other” Essays was recently named a finalist for the Autumn House Press 2013 Award in Creative Nonfiction. He is a full-time lecturer in English at Utah State University. Learn more about Kase on his blog: kasejohnstun.blogspot.com

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Maria Coder