Most people I come across have never heard of an omphalocele and I always get confused looks when I mention it. I also had no idea what an omphalocele was until we received Karlie’s diagnosis. Now it’s a huge part of our lives. I joked that once Karlie started talking her first word would be omphalocele because we said it daily.

An omphalocele is a rare abdominal birth defect that occurs when the baby’s abdomen doesn’t close properly, leaving multiple organs outside of the body. They’re classified as small or giant depending on which and how many organs are contained inside the omphalocele. Karlie’s giant omphalocele contained her liver and intestines. Giant omphaloceles occur in about 1 in 10,000 live births. Lucky us right? The cause of omphaloceles is still unknown.

I did so much research after we found out about Karlie’s omphalocele so I could make sense of it myself. I so badly wanted to know why it happened and why us? I blamed my body for not making my baby properly and I was embarrassed and ashamed. I was afraid people would talk about me behind my back once they found out my baby had defects. One of the most helpful appointments we had was with the pediatric surgeon who would work with Karlie once she was born. She looked at me and said, “Listen, first I need you to know that this is not your fault. It’s nothing you did and it’s nothing Sterling did.” Those were words I really needed to hear. She further explained what an omphalocele was and gave us a realistic picture of what life could look like once Karlie was born.