by Dianne Woehnker
About a month after I was born, my mom took me to the doctor for a wellness visit. At this appointment, she mentioned concerns about how my face looked. My eyes were wide set, and my head was mis-shapened. After evaluating me, the doctor referred us to a children’s hospital in our home state. At the first visit to the hospital, several tests, and evaluations were done on me. Based on the results of the tests, it was determined that I had Cranio Frontal Nasal Dysplasia.
I underwent my first surgery when I was 2 months old, over the course of my first 21 years of life, I underwent 13 major reconstructive surgeries. These surgeries included: temporarily removing a piece of my skull (craniotomy), reconstructing my forehead, eye sockets, nose, and upper and lower jaws, and multiple surgeries on my eye muscles and eyelids.
I was born in 1982, and there wasn’t a lot of research and treatment on CFND at the time, so my treatment and surgeries were extensively documented for teaching and training purposes at the research facility and medical school in the same city as the hospital I was treated at. I am fortunate to not have any mental impairments as a result of CFND, and I live a typical lifestyle. My advice to others with CFND, and their families, is to not let your condition be an obstacle to what you want to achieve in life.