Beyond the Grip of Craniosynostosis

An Inside View of Life Touched by the Congenital Skull Deformity

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About the Book

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.

About the Author(s)

Kase D. Johnstun is an award-winning essayist whose work has appeared nationally and internationally. He lives in Ogden, Utah.

Bibliographic Details

Kase D. Johnstun

Foreword by Katie Mae Garner

Format: softcover (6 x 9)
Pages: 244
Bibliographic Info: 18 photos, bibliography, index
Copyright Date: 2015
pISBN: 978-0-7864-7569-8
eISBN: 978-1-4766-1771-8
Imprint: McFarland

Table of Contents

Acknowledgments vi
Foreword by Katie Mae Garner 1
Preface 3

Part One: Beginnings
1975 5
Out of the Chutes 19
Kinship 33

Part Two: The Rearview Mirror
Sutures 35
The Fever—Inside Anesthesia 58

Part Three: From Here to There and Back (Lambdoid Synostosis)
The Noose 63
The Plateau 74

Part Four: The Crown (Coronal Synostosis)
Intruder 79
Loosen 87

Part Five: The Bridge (Metopic Synostosis)
The Ridge 93
The Sound 99
The East River 108

Part Six: Fault Lines (Sagittal Synostosis)
The Plains 125
The Apparatus (Endoscopy and Helmet Therapy) 132
Scarred Detritus 146
The Corridor 158
The Great Salt Lake 182

Part Seven: The Mother, the Advocate and the Word “Cosmetic”
The Dream 185
No Montage 187
Scars 201
The Shave 204
Release 210

Bibliography 227
Index 231

Book Reviews & Awards

Winner, 2015 Golden Quill Award—Nonfiction League of Utah Writers Contest