Like many families, the reality of how fortunate we are to live near one of the country’s top ranked children’s hospitals was not something we ever really thought about. That all changed when Danno came into our lives.
During a routine ultrasound while I was pregnant with twins last year, the doctor discovered that the heart of one of the twins was not developing properly. We learned even before he was born that our son, Daniel (eventually nicknamed Danno after we all fell in love with our 2-year-old’s attempts to pronounce his baby brother’s name) had a congenital heart defect. The exact diagnosis was double outlet right ventricle with pulmonary atresia and a large ventricular septal defect. It’s a mouthful, and we were frightened, but knew we were in good hands at University of Michigan.
In early October, I was admitted to U-M’s Von Voigtlander Women’s Hospital because my twin boys were beginning to show signs of distress. The doctors decided to deliver them on October 27 at 34 weeks gestational age.
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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