Beyond the Grip of Craniosynostosis

An Inside View of Life Touched by the Congenital Skull Deformity


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SKU: 9780786475698 Categories: ,

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
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

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