The condition ofcraniosynostosis occurs in roughly 1 out of every 1,700 live humanbirths. It refers to the early fusion of at least one meeting place,or suture, of two bony plates that help to make up the skull. Just asthe presentations of craniosynostosis vary depending on the numberand placement of the fused sutures, each case is very individualisticwith its own set of variables. This year, Kase D. Johnstun released awork called, Beyond the Grip of Craniosynostosis: An Inside View ofLife Touched by the Congenital Skull Deformity. In it, Johnstun hasartfully woven the historic narrative of surgical procedures thathave been and are currently being used, with a handful of individualpatient stories including his own. Johnstun’s level of transparencywhen describing his own story is disarming and immediately connectsthe reader with the reality of his journey as he re-traces his past.He has also been careful to include a variety of cases, both in thepresentation of the sutures, and also in the patients’ differentfamily make-ups and personality-defined responses. His wide net ofinterviews is able to directly relate to just about everyone who isaffected by craniosynostosis. It is a must-read for the families andclose friends of anyone who has been affected by craniosynostosis. Itis also a more general story of growing hope for babies with thecondition; socially, physically, medically, and developmentally.
Beyond my generalreview, I would like to add a few points that struck me on a morepersonal note as the mother of a child with craniosynostosis.
1) Despite mypersonal research from the day of Zoey’s birth to the present, Ifound myself reading facts and historical elements that I had neverheard before in this book. To my knowledge there isn’t a more concisedescription that covers such a wide medical history ofcraniosynostosis. To the contrary, there are a lot of sources andstories online that are less than helpful, and this book was a breathof fresh air in its obvious authoritative voice on the subject, whilealso writing for those who have not received any medical training.
2) I have often beenworried that my emotional and psychological response to the surpriseof Zoey’s condition was not reflective of the seriousness of thesituation. While my husband was in tears over the unknown days tocome for his little girl, I rarely had the energy or feeling to cry.While reading this work, I was able to personally relate, at least inpart, with every single parent interviewed. Some parents internalizeemotions and struggle to sort through their own feelings, and someare too worn out to show any strong emotion, while others are inconstant tears at every mention of a surgery. Every case is unique,but the underlining fears are universal. We all sign the consentforms with the full understanding that these little ones may not lookat us again. I was able to relive my own experiences as I readthrough the tears and gritted teeth of other parents, and ultimatelygained a renewed sense of hope and community in realizing that we areall in this together.
3) Lastly, I wasreminded of how different the struggles are for those who personallyhave the condition from their caregivers and families. Especiallywith single suture diagnoses, most children born within the past tenyears or so who were treated within their first year, will experiencelittle more than a large scar and some family stories that arerepeated in family gatherings. Life continues as normal for them. Themain emotional struggle occurs with the family members who are oldenough to remember the trauma of that first year. Granted, there arestill cases that are undiagnosed for years, and by the time thechildren receive any procedures, they have also retained a fulllong-term memory. These children are more likely candidates fortherapy sessions and fuller explanations that will have a deeperimpact on them as they grow up. Those with multiple closed sutures,as in our case, are also more likely to continue procedures throughthe years of fully formed memory. There are some experiences thatwords will never completely describe, and a cranial vaultreconstruction is one of those experiences. I am so grateful that thevast majority of babies are now able to continue on with their livesunhindered by the memories of surgical recovery.
Now that my beloved has finished, I finally get the chance to read it! Look for my review in the coming days.
