I remember when I was first new to the world of craniosynostosis... back before I even knew what it was that my son had... I'd spend hours upon hours reading online and I was hoping in my heart that we'd hear he had positional plagiocephaly that could be corrected with a few months of helmet therapy, but each and every time I logged onto a website and read what craniosynostosis was, specifically right coronal, I knew in my heart that was what Owen had.
The day the neurosurgeon diagnosed it and the day the CT scan confirmed it were hard but it wasn't a surprise. I knew.
Recently I read an article about a little boy in California also diagnosed with craniosynostosis and now going through helmet therapy to finish re-shaping his head. Owen never went through helmet therapy after surgery and still has some flattening related to the craniosynostosis but his plastic surgeon said that most cases will round about by age 3 and he never recommended one for Owen before or after surgery.
The article about the little boy stated "About 90% of the reason for doing the surgery is cosmetic. Without the treatment, a child will have a skull that is oval or egg shaped, or what is known as "toaster head." Before the 1970s, children had to live with the condition."
Read more here: http://www.fresnobee.com/2012/03/05/2747867/helmet-allows-young-daelin-edwards.html#storylink=cpy
I can speak from experience...
IT IS NOT COSMETIC!
That is a very common misunderstanding. It irritates me and makes me mad!
Yes, my son was physically changed due to the surgery but I didn't just wake up one day and decide I didn't like my son's flattened forehead and wanted to do something about it.
Positional plagiocephaly can be corrected with a helmet - craniosynostosis cannot. Surgical intervention is the ONLY way to fix it.
My son's brain was not growing properly due to the fusion of the right coronal suture. The fused suture was forcing his brain to grow toward the open sutures. Yes, it was changing his facial features but the procedure he had done was not to fix those. The procedure he had done was to re-open the suture to allow his brain to grow properly in ALL directions. The procedure he had done would prevent pressure on his brain, vision and hearing loss. Owen does has vision issues related to the craniosynostosis but without the surgery, it could've been so much worse.
Craniosynostosis has not only changed my son's life but it has changed mine. I am a huge advocate for my son and his medical care and it has become a huge passion of mine to educate other people, new families, etc. I want everyone to know and understand what craniosynostosis is and how serious it is.
There is nothing cosmetic about this procedure!
My handsome boy - 18 months old on the 21st. 10 months post-op on the 27th. We've been on "the other side" for almost a year now and it feels so good!
