Beyond the Grip of Craniosynostosis: An Inside View of Life Touched by the Congenital Skull Deformity

by Kase Johnstun

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

Reviews

[Gina · Rating 5 out of 5]

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.

[Jennifer · Rating 5 out of 5]

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!