Stories about: unilateral craniosynostosis

Our patients’ stories: Casey leaves limitations on the sidelines

By Christen Evans

Casey as an infant
Our daughter Casey was born on August 13, 1996, weighing 8 pounds and 13 .5 ounces and measuring 22 inches long. It was a smooth delivery, but soon after birth the doctors noticed “something different” about her. In an instant, what was supposed to be a joyous occasion turned into a dark, scary moment.

 

It was soon discovered that Casey had unilateral craniosynostosis, a condition in which the fibrous joints between the plates of the skull fuse too early during a development. From that day forward I was told I would need to get used to having a daughter with disabilities and limitations. People said I should prepare myself for disappointment and that mothering a “different” child was no walk in the park. I was shocked, confused and scared. My baby had a birth defect that I had never heard of. I spent many nights wondering why this happened and what was I supposed to do?

 

It’s been hard, but we haven’t had to do it alone. Since she was born Casey has had many doctors, but her two favorites are the one’s at Children’s Hospital Boston. Over the years Dr. Mulliken, co-director of Children’s Vascular Anomalies Center and Dr. Mark Proctor, her neurosurgeon, have been great sources of support for our family. Without their help I can’t imagine where Casey would be today.

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