|Monday, 12 November 2007 19:32|
In June of 1999 our son was diagnosed with Craniosynostosis, a condition that caused the sutures of his skull to prematurely fuse together. After the diagnosis I turned to the internet to educate myself about this condition and learn what type of treatment is needed to correct it. My son had surgery in December of 1999. He is doing very well and my wife and I can put the whole ordeal behind us. I wanted to put a web page together about Craniosynostosis in the hope that if others in the same situation come across it, it will provide them with some of the same information that helped us.
As of October, 2005, everything for all practical purposes, is over with. The doctors at Children's Hospital in Cincinnati no longer need to see him on a yearly basis. His head appears completely normal, except for a scar from ear to ear. I believe we are to have his eye sight checked one more time. I think he has been very lucky and we are very grateful for all the doctors and nurses involved in his care.
What is it?
Craniosynostosis (CRAY-nee-o-SIN-os-Toe-sis): A baby's skull cap is made up of five bones held together by fibrous material called sutures. Craniosynostosis, or closure of these sutures, occurs when the bones in your baby's skull fuse together before the brain has stopped growing. This condition is also referred to by the older term cranial stenosis.
Are there different forms?
There are four different forms of Craniosynostosis. Sagittal, Coronal, Metopic and Lambdoidal. Each of these conditions involves different sutures of the skull. In some cases more than one suture may be closed. Sagittal is the most common form and is the one that our son had.
What about treatment?
This was that hard part of the whole ordeal. Deciding on the course of treatment. There are three that we became familiar with, and all are surgical procedures. There really seemed to be no choice other than a surgical procedure. The shape of the head was not going to get better, and there could be bad effects on my son neurologically. The three that we investigated where, strip craniectomy, endoscopic strip craniectomy and cranial reversal (there is more "medical term" for this, which escapes me). All three had different approaches to correcting the condition.
The strip craniectomy is the most typical of all them and it seemed that most surgeons performed this version. The endoscopic strip craniectomy seemed a good way to go as it allowed for faster recovery and less blood loss during surgery. I only found one doctor that performed this version, and he was at the University of Missouri. Both craniectomy versions basically go in and remove a strip of the skull where the bone has prematurely fused together.
The final one was a little more "radical" than the others. Cranial reversal would involve removing the top of the skull, cutting the cranium into pieces and then rebuilding (bringing the back to the front and visa-versa) the cranium and placing it back onto the head. This was the one we decided to go with. The surgery was performed by Dr. Kerry Crone and Dr. David Billmire at Children's Medical Center in Cincinnati, Ohio.