Monday, June 29, 2009

My Cranio Kid

Its hard to believe that it has been four years since I first heard the words craniosynostosis.
It was a life altering moment.


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?

There were two things that made a huge difference in our lives. I found a website called where parents can go, chat, share their fears and successes with one another. It gave me comfort to have people who were "holding my hand" through this process.

Then we were given an angel and her name is Tina Tierno. Tina's beautiful son Louis was also a cranio kid and she was there for me at any hour on any day. She never made me feel like a question was to small or that she was to busy to talk. Believe me I called quite a bit sometimes with new questions and sometimes just to ease my own fears. There are not many people in this world who are so selfless and Tina will always have a special place in our hearts for the love she showed us.


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 .

Children are a blessing and a miracle. The morning following the operation her eyes were swollen shut but she was smiling. In that moment of her very first smile I knew I was looking at the strongest women I would ever meet in this lifetime. She became my inspiration and it is a moment that I will forever hold dear to my heart.

The road through cranio was long, difficult. It also opened up a world of wonderful people, doctors and new friends. Our families were a constant source of support and without them we would not have made it though.Jaiden is now four years old, starting kindergarten a year early and is the most precious thing in the world to her Daddy and I.

Today is a time to reflect and I will pray for the families whose own little angels are dealing with the trials of cranio.

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