At six months old, I was diagnosed with Right Coronal Craniosynostosis. This August will be the 20th anniversary of my first skull surgery and the 14th anniversary of my last major head procedure. In honor of this, I want to take some time to educate people on Craniosynostosis. I hope in telling my story, I can spread awareness as well as give some faith to parents and children going through this.
Craniosynostosis is a very large word that means the sutures of a baby’s skull are formed too early. If the skull is already formed, there is no room for the brain to develop. There are several types of Craniosynostosis, the main ones being coronal, sagittal, lambdoid and metopic. These refer to the areas of the skull that are prematurely formed and can differ in severity.
Like most babies with this condition, I had to have skull surgery when I was six months and six years old. The purpose of the surgery was to give my head room to grow. A titanium plate was put in during the first surgery and taken out when I was six. I had other surgeries, but everyone’s experience is different. Some children have to wear helmets to help with the recovery.
Craniosynostosis affects about one in 5,000 children. Research has obviously grown in the last twenty years since my experience. My mom took me to a lot of hospitals up and down the east coast. I think what matters more than an explanation of a condition is how it impacted my life and probably many others.
I temporarily transferred to private school in first grade because my mom believed it would allow me to better recuperate. I remember this pink hat I wore everywhere because part of my head had been shaved and I was waiting for my hair to grow back. I remember the disgusting pill that I took every morning that my mom crushed into pudding. I still can’t eat chocolate pudding.
I remember being annoyed and hurt when people would comment on my crooked head. I hated taking pictures because one of my eyes would be closed.
As I look back at all of this, I realize how trivial some of it really was. I learned to wear my hair differently to cover my scar. I know how to smile in pictures so my eyes are mostly open. But really, that is not what matters. What matters is that I am here.
I was able to receive the treatment and care that has allowed me to live a pretty normal life. So while I may have a really long medical history when I go for wellness check ups, I also was able to get my license the day I turned 16. I was able to find my passions in high school and get a scholarship to college.
We all have had obstacles in our lives and will continue to need to overcome them the best we can. I know that there are moms and dads, just like mine out there, who lose sleep worrying over their Cranio baby’s future. I hope my story shows you that your child can still accomplish their dreams.
Thank you to the doctors and parents who work so hard for continued research of Craniosynostosis. If you would like to learn more information, you can visit craniocarebears.org. Our scars make us beautiful.
