I’ve had 5 surgeries and I’m only 2½ years old.

I had my first surgery when I was about 7 months old. I was born with bilateral cleft lip and palate; and the only way to close it is by having surgery; a lot of them. The first doctor we saw said he could close it using a (Latham) device. It would pull my face together and make the surgery easier. He had my mouth fitted for the device and surgery was scheduled.

We had to be at the hospital really early in the morning. I was prepped and taken from my parents. After a few hours, the doctor had the device in my mouth, he gave my Mom a screwdriver that she and my Dad would use to turn the screw in the back of my throat, and we were supposed to head home. While in recovery I started having troubled breathing. We later learned that my airway is super tiny and the device was blocking my air flow.

The doctors where we live were worried because I wasn’t breathing good. One of them ask my Mom, “why did you come to a hospital that doesn’t have a cleft team?” Mom: “we didn’t know you didn’t have a cleft team; this is where our doctor told us to come”. An outpatient surgery turned into an overnight stay. Overnight turned into 5 days before being airlifted to Children’s Hospital of Alabama. Because now, I can’t breathe and I’m bleeding from my mouth.

The doctors at Children’s said we should take the device out and start over; especially if that’s when my troubled breathing started. The device was removed and I started breathing good again! Now we know, my tiny airway can’t handle obstructions. I was given a tube feeds with an occasional bottle. After 6 more days in the hospital, a few Barium Swallow tests, and several labs, I was ready to be discharged home!

Published by ewefoundation

The E.WE Foundation is a 501(c)(3) healthcare advocacy organization supporting families affected by Edwards Syndrome, commonly known as Trisomy 18.