I was born with Bilateral Cleft Lip and Palate. I wasn’t even a year old and I was prepping for surgery #3. This surgery was to close my cleft lip. Surgery was scheduled at Children’s Hospital of Alabama. We planned for 2 days; we were there 4. Everything went exactly like my doctor said it would. My face was swollen, I had a plunger in my nose, and I had to wear arm splints; but everything turned out good. One of my nurses [even] said we’ve “changed her life”. We contradicted everything she learned in nursing school about Trisomy 18.

After surgery I was given nutrition via IV fluids. I had to stay inpatient until I was able to take my bottle. After many attempts, I finally got it and they let us go home!

I developed this skin rash on my head; not sure how. The doctors treated it, as best they could, while I was admitted. I was referred to Dermatology. After a few visits, and several cultures, we were told it was Staph.

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.