A Book Review


Beyond the Grip ofCraniosynostosis by Kase D. Johnstun

The condition of
craniosynostosis occurs in roughly 1 out of every 1,700 live human
births. 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 as
the presentations of craniosynostosis vary depending on the number
and placement of the fused sutures, each case is very individualistic
with its own set of variables. This year, Kase D. Johnstun released a
work called, Beyond the Grip of Craniosynostosis: An Inside View of
Life Touched by the Congenital Skull Deformity. In it, Johnstun has
artfully woven the historic narrative of surgical procedures that
have been and are currently being used, with a handful of individual
patient stories including his own.  Johnstun’s level of transparency
when describing his own story is disarming and immediately connects
the 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 the
presentation of the sutures, and also in the patients’ different
family make-ups and personality-defined responses. His wide net of
interviews is able to directly relate to just about everyone who is
affected by craniosynostosis. It is a must-read for the families and
close friends of anyone who has been affected by craniosynostosis. It
is also a more general story of growing hope for babies with the
condition; socially, physically, medically, and developmentally.

Beyond my general
review, I would like to add four points that struck me on a more
personal note as the mother of a child with craniosynostosis.

1) Despite my
personal research from the day of Zoey’s birth to the present, I
found myself reading facts and historical elements that I had never
heard before in this book. To my knowledge there isn’t a more concise
description that covers such a wide medical history of
craniosynostosis. To the contrary, there are a lot of sources and
stories online that are less than helpful, and this book was a breath
of fresh air in its obvious authoritative voice on the subject, while
also writing for those who have not received any medical training.

2) I have often been
worried that my emotional and psychological response to the surprise
of Zoey’s condition was not reflective of the seriousness of the
situation. While my husband was in tears over the unknown days to
come 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 in
part, with every single parent interviewed. Some parents internalize
emotions and struggle to sort through their own feelings, and some
are too worn out to show any strong emotion, while others are in
constant tears at every mention of a surgery. Every case is unique,
but the underlining fears are universal. We all sign the consent
forms with the full understanding that these little ones may not look
at us again. I was able to relive my own experiences as I read
through the tears and gritted teeth of other parents, and ultimately
gained a renewed sense of hope and community in realizing that we are
all in this together.

3) I was
reminded of how different the struggles are for those who personally
have the condition from their caregivers and families. Especially
with single suture diagnoses, most children born within the past ten
years or so who were treated within their first year, will experience
little more than a large scar and some family stories that are
repeated in family gatherings. Life continues as normal for them. The
main emotional struggle occurs with the family members who are old
enough to remember the trauma of that first year. Granted, there are
still cases that are undiagnosed for years, and by the time the
children receive any procedures, they have also retained a full
long-term memory. These children are more likely candidates for
therapy sessions and fuller explanations that will have a deeper
impact on them as they grow up. Those with multiple closed sutures,
as in our case, are also more likely to continue procedures through
the years of fully formed memory. There are some experiences that
words will never completely describe, and a cranial vault
reconstruction is one of those experiences. I am so grateful that the
vast majority of babies are now able to continue on with their lives
unhindered by the memories of surgical recovery.    

4) There are references, described in two of Johnstun’s parent interviews, to some very similar experiences that we have had, both while Zoey went though testing in the NICU, and also in recovery on a hospital floor with other infants and children. Within the world of pediatrics there seems to be a large spectrum of severity when it comes to procedures and recovery. While cranio kids definitely rank high among the level of surgical skill necessary, as well as possible negative results, there is a specific time-frame in which families are asked to endure. The vast majority of cranio kids will return home within five days of arriving at the hospital. Some things have changed, but for the most part, the storm passes once the patients return home. While knowing this, we as parents encounter all sorts of other children on these recovery floors. Some battling cancer, muscular debilitating disorders, uncontrollable seizures, organ failure…the list is as dynamic as the children. In places like that we are reminded as cranio parents that, while we have a few days within five years of heart-wrenching struggle, we can expect to go home. Our kids are the strong, resilient bunch of this group. When we hold our heads up long enough to look around, we realize we are the blessed families. Yet there is enough struggle for us personally that it is not hard to feel deep empathy for the children and families who will spend holidays and birthdays in those rooms.Side note: One of Zoey’s surgeries was a few weeks before Christmas, and we got a picture with a visiting Santa. As I spoke with a wonderful nurse about it, she lamented that she wished more Santas came around outside of December for the kids in and out year-round. I hope to have the persistence to help bring a Christmas in July to that floor one day.

Leave a Reply