3 Things I Learned about “Cranio Kids’ and Their Parents

KaseJohnstunHeadShotBy Kase Johnstun

A mom from central California looked at her child’s head and saw that it wasn’t shaped right. She saw her son struggle with headaches. She knew his brain was trapped beneath his skull. It was the late 1800’s. Through multiple letters, she begged Dr. Lane, a surgeon in San Francisco, to please free her boy’s brain from his skull. Her son was born with Craniosynostosis, the premature ossification of one or more cranial sutures in infants.

Kids are brilliantly resilient, and mothers are their strongest advocates. I learned this was as true then as it is now. Time and time again while I talked with families from New York to Seattle while conducting research for my book Beyond the Grip of Craniosynostosis: An Inside View of Life Touched by the Congenital Skull Deformity. You see, from the late 1800’s until now, mothers (and fathers) have had to advocate for their children to ensure that their child receives the best medical attention, and, for some, any medical attention.

The woman from California, in the late 1800s, knew something that I didn’t when I began to research Craniosynostosis, having been born with the birth defect in 1975 and having had corrective surgery at two months old, a craniectomy to open my skull. She knew that her child’s brain had been held captive by his skull. Previous to my research, I believed that the growth of the skull determined the shape of the brain and the overall appearance of the head, but I was wrong. The brain dictates the shape of the skull, so the brain needs all of the cranial sutures to be open so it can grow naturally and to its full extent throughout the infant, adolescent, and young adult life of a child. If one, or more, of those sutures is closed, the brain will push outward wherever it can, creating an odd-shaped head at the very least (many researchers believe that without corrective surgery a child may suffer developmental disabilities, but this is still being debated within the medical community).

Like my skull was opened up to let my brain grow, my mind was opened up throughout my research.

Here are three other things I learned about families and child development throughout my research that I figured families would find really cool, interesting, and, for some, very important.

Positional Plagiocephaly (flat head) is not Craniosynostosis, and, therefore, does not share the same risks.

According to Capps Kids, a leading resource for Positional Plagiocephaly and Craniosynostosis: “Positional Plagiocephaly is a flat spot on the back or side of a baby’s head. The condition can be mild to severe and may cause asymmetry to the baby’s head, face, eyes, jaw and ears.”

With Positional Plagiocephaly, none of the cranial sutures are closed, so the child does not share the same risks as a child with Craniosynostosis, but a specialist should be consulted to determine the course of treatment to treat positional plagiocephaly. Capps kids is a great place to start: http://cappskids.org/capps-plagiocephaly/

Children and their skulls are brilliantly resilient:

One major surgical technique for correcting Craniosynostosis, Cranial Vault Reconstruction (or CVR), involves removing a large portion of a child’s upper skull – removing the bone where there should have been a suture and the bone around it – breaking up the skull bones, and then reconstructing the skull bones so the brain has enough room to grow throughout the child’s development years.

Children receive this surgery, and they tend to bounce back from major cranial surgery faster than you would believe.

Moms are children’s best advocates, and they are tough as nails when it comes to doing the best thing for their child:

I sat in rooms with mothers. I looked at their eyes. I listened to their stories, and I learned what it meant to be an advocate. One mother battled a large insurance company on her own and won. One mother searched the country for one of the best surgeons in the world to operate on her son after all of her local surgeons said, “No, he’s too old.” And my mother (and father), in 1975, said yes to a surgery that made me who I am today, even though she’d never heard of it before and had no one else to talk with who had gone through this before. That’s advocacy. That’s bravery. 

It looks like the mother in California in the late 1800’s was just one mom in long tradition.

Kase Johnstun is the author of Beyond the Grip of Craniosynostosis: An Inside View of Life Touched by the Congenital Skull Deformity (McFarland Books). Find him online at www.facebook.com/KaseDJohnstun.