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 familys 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.