Kase Johnstun, author of Beyond the Grip of Craniosynostosis, stopped by for an interview.
What made you want too write this book?
When I first found out we were going to have a son, I was overjoyed, but, as the days got closer to his birth, I began to worry that he would be afflicted with Craniosynostosis — the birth defect I was born with in 1975 and had skull surgery to correct at eight weeks old — so I started to do research about the plausibility of passing it on to him and of putting my wife through the same emotional pain my mother had to tackle. What I found was that there was no book available that spanned the spectrum between memoir and medical research. After three years of research, traveling across the country, interviewing other families and the best craniofacial surgeons in the country, and finally pulling my mother’s story from her purposefully shelved memory, I wrote the book I wished was available when I looked into the birth defect initially. Now other families will have it.
How common are cranial defects in children?
While I can’t speak for other cranial defects, as there are many that are syndromic in nature, meaning that the defect may be tied to another syndrome, but for non-syndromic craniosynostosis, which is most common, I have found that the numbers range from 1-1,650 to 1-2,000. What frustrates me, a little, is that none of the most popular baby books even mention it. They all mention plagiocephaly (flat-head syndrome), and I believe it wouldn’t be difficult to say something like, “Ask your pediatrician to check to make sure the fontanelles and cranial sutures are wide open.” Because, unfortunately, some pediatricians still miss the diagnosis.
What treatment options are available?
From my research, I believe, and this is backed by most of the medical community, that surgery to release the fused suture is really the only option for treatment for all the sutures except the metopic suture, which is the only suture that has a grey area because it naturally closes within two years after birth — that said, many metopic sutures do need to be opened up if they close to early; this decision should be addressed by a craniofacial team made up of a neurosurgeon and plastic surgeon before a decision is made. Currently, there are two main options for surgery, and these vary in technique based on the surgeon. The first is Cranial Reconstructive Surgery (CVR): the craniofacial team, typically, removes the skull from just above the ear, breaks the skull into multiple pieces, and then reconstructs the skull with all the sutures in place, giving the brain enough room to grow outward over the next 20 years of the child’s life — there are many different techniques to do this, and much discussion about what technique is the best, but there are more than 250 surgeons in the country that are very qualified to perform surgery for craniosynostosis.
The second option is the endoscopic release of the fused suture: this is much less invasive, as the doctors make two tiny slits in the skull and then remove the fused bone, creating a suture, through those slits. Following this procedure, most babies will have to wear a shaping, protective helmet for up to a year. There is no need for a helmet with the CVR because the doctors already shaped the skull. Both of these techniques have their benefits, and which technique is used depends on the child: when he/she is diagnosed, what suture needs to be released, etc. The craniofacial team will give parents the best possible option.
How can families support parents of “cranio kids?"
They can listen and learn. The more families that know about this birth defect, the better the parents will feel less alone.
About the book:
Part memoir and part medical study, the book touches on the modern medical history of cranial sutures, as well as ancient treatments dating to the time of Hippocrates as well as surgical techniques used today to allow the brain to grow naturally. It is with great care that Johnstun chronicles the experiences of American families affected by Craniosynostosis. Each entry demonstrates the uniqueness of that case, the chosen treatment, and its result. A true testament to a second coming of age, Johnstun, now in his thirties, encapsulates a rite of passage that everyone will be able to relate to. Beyond the Grip of Craniosynostosis highlight’s one man’s quest for information, the internal conflict that arises, and the desire to break down the enormity of a situation into smaller manageable pieces to regain a sense of control.
About the author:
|Kase Johnstun is an award-winning essayist. He is the co-editor/co-author of Utah Reflections: Stories from the Wasatch Front (History Press). His work has appeared nationally and internationally in journals and magazines such as Creative Nonfiction Magazine, The Chronicle Review, Label Me Latina/o, Prime Number, and as a regular contribution to The Good Men Project. He has an MA and an MFA in Creative Writing, and his set of essays Tortillas for Honkies and “Other” Essays was recently named a finalist for the Autumn House Press 2013 Award in Creative Nonfiction. He is a full-time lecturer in English at Utah State University. Learn more about Kase on his blog or on Facebook.|
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