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Beyond the Grip of Craniosynostosis: An Inside View of Life Touched by the Congenital Skull Deformity
Both a memoir and a medical study, this unique work explores the extensive and tragic reach of craniosynostosis, the premature fusing of the cranial sutures in infants. The author--born with craniosynostosis in 1975--documents his and his family's struggles, weaving his story into a broader view of this birth defect. Included are interviews with respected craniofacial surgeons, neurosurgeons and pediatric anesthesiologists, an explanation of the major types of craniosynostosis, and a summary of the modern medical history of cranial sutures, as well as ancient treatments dating to the time of Hippocrates. The experiences of 11 American families affected by craniosynostosis are chronicled, demonstrating the uniqueness of each case and each treatment. Their stories illustrate the surgical techniques now being used to release cranial sutures, allowing the brain to grow naturally--though not every story ends this way.
244 pages, Paperback
First published November 30, 2014
About the author
Kase Johnstun
7 books15 followersKase Johnstun lives and writes in Ogden, Utah. Johnstun is the Director for the Utah Center for the Book and Utah’s Representative to the Library of Congress.
His recently released CAST AWAY, about a young boy who, along with his formidable great-aunt (an immigrant who settled on the Utah salt flats in 1923), devises a plan to join the cast of a reality show, win the prize money, and bring back their undocumented family safely to America, has been named a finalist for the multicultural category for the 2024 IPPY Awards, a finalist for the 2024 Page Turner Awards, and a SHELF UNBOUND 2024 Notable Reads, and a juried candidate for the Ansfield-Wolf Book Award.
He is the author of the acclaimed novel, LET THE WILD GRASSES GROW (Torrey House Press, 2021), a reimagining of his Mexican American grandparents’ lives during the Great Depression, the Dust Bowl, and WWII. The novel was recently named a finalist for the High Plains Book Awards, longlisted for Reading the West, and named a coveted Women’s National Book Association Great Group Reads for 2022.
Forthcoming, Johnstun is under contract for three novels in the next three years with Roan and Weatherford Publishing.
Additionally, Johnstun is the author of BEYOND THE GRIP CRANIOSYNOSTOSIS (McFarland & Co., 2015), which has been featured in Pennsylvania Parenting Magazine, Portland Family Magazine, The Ogden Standard Examiner, as well as having mentions in the Chicago Tribune and the Seattle Times. It was awarded the Gold Quill (First Place) in Creative Nonfiction by the League of Utah Writers for 2015.
His Essay Collection WATCING SUNDOWN was named a Finalist for the 2026 Permafrost Nonfiction Award. His essay collection HOW TO DISAPPEAR COMPLETELY was named a finalist for 2025 Schafner Press Awards. His essay collection, TORTILLAS FOR HONKIES, was named a finalist for the 2013 Autumn House Press Nonfiction Awards, and his collection POKER TABLES, COORS, AND BUÑUELOS was named a finalist for the 2020 Autumn House Press Nonfiction awards and the C&R Press Awards. Most of the essays in the collection have found homes in places like The Watershed Review, Label Me Latino/a, Prime Number Literary Magazine, Animal Literary Magazine, and Rougarou Literary Magazine. He is the co-editor/author of UTAH REFLECTIONS: STORIES FROM THE WASATCH FRONT (The History Press, 2014), which was named the Salt Lake Tribune’s book of the month for August 2014 and the League of Utah Writers Recommended Read in Nonfiction 2015 (Third Place).
His work has been published widely by literary journals and trade magazines, including, but not limited to, Southwest the Magazine, Yahoo Parenting, Creative Nonfiction Magazine, Coldnoon: Travel Writing and Traveling Poetics, Like The Wind Magazine, and The Chronicle Review.
Johnstun was literary chair for the Ogden City Arts Advisory Committee (2014-2018), was named to Ogden’s 40 under 40 three weeks before his fortieth birthday in 2015, and hosts a literary podcast called LITerally where he interviews authors about all things publishing and writing. He is a board member of the Label Me Latina/o Literary Magazine (Queens University of Charlotte).
In January 2016, he was the artist in residence at JIWAR International Artist Residency in Barcelona, Spain. He was the 2020/2021 Literary Curator for the literary stage of the Utah Arts Festival and has supported and created literary events in Ogden since moving back to his hometown in 2013. And, he was most recently named the 2021 Ogden Mayor’s Award Recipient for the Literary Arts.
He has a BA in English Literature and Technical and Professional Writing from Weber State University, an MA in Creative Writing and Literature from Kansas State University and an MFA in Creative Writing from Pacific University.
His recently released CAST AWAY, about a young boy who, along with his formidable great-aunt (an immigrant who settled on the Utah salt flats in 1923), devises a plan to join the cast of a reality show, win the prize money, and bring back their undocumented family safely to America, has been named a finalist for the multicultural category for the 2024 IPPY Awards, a finalist for the 2024 Page Turner Awards, and a SHELF UNBOUND 2024 Notable Reads, and a juried candidate for the Ansfield-Wolf Book Award.
He is the author of the acclaimed novel, LET THE WILD GRASSES GROW (Torrey House Press, 2021), a reimagining of his Mexican American grandparents’ lives during the Great Depression, the Dust Bowl, and WWII. The novel was recently named a finalist for the High Plains Book Awards, longlisted for Reading the West, and named a coveted Women’s National Book Association Great Group Reads for 2022.
Forthcoming, Johnstun is under contract for three novels in the next three years with Roan and Weatherford Publishing.
Additionally, Johnstun is the author of BEYOND THE GRIP CRANIOSYNOSTOSIS (McFarland & Co., 2015), which has been featured in Pennsylvania Parenting Magazine, Portland Family Magazine, The Ogden Standard Examiner, as well as having mentions in the Chicago Tribune and the Seattle Times. It was awarded the Gold Quill (First Place) in Creative Nonfiction by the League of Utah Writers for 2015.
His Essay Collection WATCING SUNDOWN was named a Finalist for the 2026 Permafrost Nonfiction Award. His essay collection HOW TO DISAPPEAR COMPLETELY was named a finalist for 2025 Schafner Press Awards. His essay collection, TORTILLAS FOR HONKIES, was named a finalist for the 2013 Autumn House Press Nonfiction Awards, and his collection POKER TABLES, COORS, AND BUÑUELOS was named a finalist for the 2020 Autumn House Press Nonfiction awards and the C&R Press Awards. Most of the essays in the collection have found homes in places like The Watershed Review, Label Me Latino/a, Prime Number Literary Magazine, Animal Literary Magazine, and Rougarou Literary Magazine. He is the co-editor/author of UTAH REFLECTIONS: STORIES FROM THE WASATCH FRONT (The History Press, 2014), which was named the Salt Lake Tribune’s book of the month for August 2014 and the League of Utah Writers Recommended Read in Nonfiction 2015 (Third Place).
His work has been published widely by literary journals and trade magazines, including, but not limited to, Southwest the Magazine, Yahoo Parenting, Creative Nonfiction Magazine, Coldnoon: Travel Writing and Traveling Poetics, Like The Wind Magazine, and The Chronicle Review.
Johnstun was literary chair for the Ogden City Arts Advisory Committee (2014-2018), was named to Ogden’s 40 under 40 three weeks before his fortieth birthday in 2015, and hosts a literary podcast called LITerally where he interviews authors about all things publishing and writing. He is a board member of the Label Me Latina/o Literary Magazine (Queens University of Charlotte).
In January 2016, he was the artist in residence at JIWAR International Artist Residency in Barcelona, Spain. He was the 2020/2021 Literary Curator for the literary stage of the Utah Arts Festival and has supported and created literary events in Ogden since moving back to his hometown in 2013. And, he was most recently named the 2021 Ogden Mayor’s Award Recipient for the Literary Arts.
He has a BA in English Literature and Technical and Professional Writing from Weber State University, an MA in Creative Writing and Literature from Kansas State University and an MFA in Creative Writing from Pacific University.
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Displaying 1 - 2 of 2 reviews
March 29, 2015
Craniosynostosis is a scary diagnosis for any parent. When you are pregnant you don’t think about possible birth defects. It’s just not something you spend time thinking about. The simple definition of craniosysnstosis is the premature closing of a child’s soft spot. It is so much more than that.
No two cases are the same. Some children have lasting effects, some do not.
This has hit close to home. A close friend’s 10 month old needs surgery soon to correct her craniosynostosis. I’ve seen the roller coaster of emotions that my friend is going through.
I think there needs to be more awareness of this rare birth defect. I happen to know two children that were born with this condition.
This book was written by a man that was born with Craniosysnosis. In this book you learn his back story and what he has done with his life since.
I highly recommend this book for anyone that is affected by this disease in one way or another.
No two cases are the same. Some children have lasting effects, some do not.
This has hit close to home. A close friend’s 10 month old needs surgery soon to correct her craniosynostosis. I’ve seen the roller coaster of emotions that my friend is going through.
I think there needs to be more awareness of this rare birth defect. I happen to know two children that were born with this condition.
This book was written by a man that was born with Craniosysnosis. In this book you learn his back story and what he has done with his life since.
I highly recommend this book for anyone that is affected by this disease in one way or another.
August 2, 2017
As a fellow cranio baby (born the year before the author), I thought this was a fabulous and informative book. There are a few typos, but the content was nonetheless informative and well-written. He did a great service for cranio survivors and our families!
Displaying 1 - 2 of 2 reviews