Children with craniosynostosis have congenital deformities of the head, including craniosynostosis, hypertelorism, Apert's syndrome, Crouzon's syndrome, and Pfeiffer's syndrome. The majority are developmentally normal and even those that may be a bit delayed, have the potential to lead normal lives if the deformity is treated in its early stages.Many of the children have multiple cranial sutures that are permanently fused- preventing the brain from developing properly. These young patients first undergo a sophisticated three-dimensional CT scan. A template - or roadmap - is then made for the complex operation. Surgery involves releasing these sutures and reconstructing the skull into a normal appearance.The traditional craniofacial procedures to treat craniosynostosis require large exposures and extensive dissection of the soft tissues.
Craniosynostosis has been reported to occur approximately once per 1,900 live births, but the true incidence is probably higher.
I was terrified when the news came that Jaiden was indeed a cranio kid. What did this mean, what were our options and how could I protect my little girl while helping her at the same time?
In June of 2005 Jaidens surgery was scheduled. We worked with the infamous team of Dr. Staffenberg and Dr. Goodrich at Montifiore hospital. I knew that there were no better hands for my daughter to be in. That's not to say I was not terrified. The night before Jaiden went in I wanted to cancel the entire thing. How could I let them cut open my baby and do all of the things necessary to correct her condition? That was the night my husband had to be the strong one while I let myself deal with the fear.
The big day arrived and what a long day it was. We started out getting Jaiden ready for surgery and then I was allowed to go with her to the operating room while they put her under. Once the anaesthesiologist did their job I had to leave the room and literally collapsed onto my husband. We both cried and then we knew it was time to be strong. If she could get through this then we most certainly could be strong for her. After six hours my baby was wheeled out from recovery and into her room. The doctors said that there had been pressure on her brain so we knew our decision had been correct to go ahead with the procedures. She went through with only minor complications and besides the life long battle scar from ear to ear .