Malformed big toes are an important early sign of FOP that most doctors overlook. Sienna’s pediatrician referred us to local orthopedic foot experts, who had been seeing her since birth. They were unaware of FOP and never made the connection. In fact, they recommended corrective surgery at 18 months. We are conservative when it comes to invasive medical procedures and her toes didn’t appear to slow her down in any way, so we decided to wait. Thankfully, our plan was to wait until she was old enough to make her own decision regarding surgery. Surgery on her toes could have had tragic results, triggering ossification of her feet or beyond.
It is our mission to drive awareness of FOP including the critical key image of the malformed big toe, so that other patients can be diagnosed early and surgery can be avoided. It is our goal to have a flier up in every pediatrician’s office, and potentially in every ultrasound technician’s office, so that children with malformations of the big toe can be immediately tested for FOP and begin preventive measures at birth.