My ‘Disfiguring’ Condition Is Genetic — Here’s Why I Want A Child Anyway

By Ariel Henley

When I was a child, I wanted to be two things when I grew up: an anesthesiologist and a mother. My ambition to pursue a career in the medical field faded, but my desire to be a mother did not. I imagined myself picking out baby clothes, admiring my baby’s little fingers and toes, packing lunches, walking them to school, and always attending every soccer game and dance recital. I imagined a life that was normal. But my life was anything but normal, and I knew there was a chance that my child’s life wouldn’t be either. I was born with Crouzon syndrome, a rare craniofacial disorder that causes facial disfigurements and has required too many surgeries to count. And any child I conceive will have a 50% chance of inheriting my disease.

Crouzon syndrome, which occurs in roughly one out of every 60,000 births, causes the bones in the head to fuse prematurely, before a child is finished growing. Because the bones of the skull and the face fuse early, they do not develop normally; the mid-face is underdeveloped and the eye sockets do not form correctly. Treating the visible results of this condition requires numerous surgeries to expand the skull and the mid-face, and repair facial abnormalities.