Cassidy – Frontonasal Dysplasia

Cassidy was born 9 days late via c section on 6/25/2016. I had gone in to be induced when an ultrasound revealed she was in frank breech position. So after a failed internal cephalic version she made her debut! When my OB handed her to me I knew something was off. Just a mother’s intuition I guess. Her face and head were misshapen but they told me it was probably her position in the womb. The attending pediatrician noticed her Fontanelle was abnormally low on her forehead and did a CT scan that didn’t really show anything. We took her home but I still had an uneasy feeling. On the suggestion of our wonderful pediatrician we had her seen by a geneticist who diagnosed her with craniofrontonasal dysplasia, with craniosynostosis. At first I was devastated, and scared, as I learned she would need surgery, and soon. So around the time she reached 2 months old, she had an endoscopic procedure to remove the bone from her right coronal suture. We were in the hospital for 3 days and she was so brave! She spent the next 9 months in a molded helmet, and although she may not be done with surgeries, she is doing wonderful. She is such a sweetie and the light of our lives.