Amelia’s story

O Warrior Stories

Mar 12

Written by: Sarah Harper

Hi! My O warrior is called Amelia and she’s 3.5 years old. I found out at 23 weeks about her O and was given a pretty grave outlook, as is common.

Amelia was born at 38 weeks with a giant O containing her liver, intestines, and gallbladder. CHLA, the hospital she was going to be cared for at, doesn’t have delivery rooms so thankfully they kept her at the hospital I delivered at until I woke up (she was born via c section while I was under general anesthesia due to complications) so I could meet her.

After she was born we found out about several congenital issues she has in addition to her O, including 4 heart conditions, a cleft palate, macrocephaly, hearing loss, and cognitive delays. Despite all this, she only spent 28 days in the NICU and had closure surgery at 6 months old, 2.5 years before it was originally planned!

She’s now a happy and thriving 3.5 year old that goes to a special education preschool and has an ASL aid to help with her communication.