Children with craniofacial anomalies spend a great deal of time in their doctor’s office being evaluated and treated. Every visit involves having photographs taken. Not fun pictures. Not even school headshots. But pictures focused on their facial differences.
It’s what is sometimes called the “clinical gaze.” We are carefully examining their facial differences, focusing on them and working to help fix them. In a way, it can be depersonalizing even though my colleagues and I at the Craniofacial Anomalies Program work hard to connect with the children in ways other than their facial differences.
My colleagues and I wanted to do something to give the kids back the magic and fun that kids should feel with the idea of having their photos taken. I’d heard about a project where kids with craniofacial anomalies were paired with artists to have portraits painted, and was struck by how powerful it was for the children to have these immense portraits painted of them. We wanted to give our patients a taste of that experience, but also to give them the gift finding beauty – whatever that is to them – through their own lens.
Have you ever heard of DiGeorge syndrome? How about Velocardiofacial syndrome? 22q deletion syndrome? Maybe your answer is yes, but it would not be surprising for the answer to these questions to be no.
That is part of the problem.
One in every 2,000 to 4,000 children born have 22q11.2 deletion syndrome, making it almost as common as Down syndrome. Yet it’s an unfamiliar term to most people.
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