Born without a Nose – Congenital Arhinia

by Stacey Jolley

I was born in a small town in Ohio along the Ohio River. My mother had a normal pregnancy with me with no complications during pregnancy. Normal ultrasounds. When she gave birth to me the shock came seconds of being born. I didn’t have a nose or a nasal cavity. It’s called Congenital Arhinia, a rare birth malformation so rare there are only around 50 people born with complete congenital arhinia. Arhinia doesn’t only effect the nasal system, but also eyes and development during puberty, depending on severity.

When I was just 15 days old, a medical team put me through a surgery and made me a nasal cavity making an airway with just a hole on the outside. They started reconstructive surgery when I was around 8 years old, building a nose from skin grafts, my skull and ribs. Surgeries were a constant until my teen years. Then I ran into health insurance complications that didn’t allow me to compete the nose. I grew up never hearing anyone being born like me. My doctor even said it was rare and not much was reported on the case. I was 24 or 25 when I was watching the news one evening and a story came across that there was a baby born without a nose. I looked up the mother on social media and connected with other people with my condition. My parents refused to go to the media with my birth disorder/defect to protect me from backlash and to try to give me a normal life much as possible. Maybe that’s why the birth defect is under study.