Mom and Dad found out about me in the Summer 2016. Half way into the pregnancy, the doctors said I had Trisomy 18. They said it was 99% accurate too. I would be severely delayed, have a bunch of health issues, and would probably die. Mom was scared. Dad was strong. My brothers and sisters didn’t know what exactly was happening; just that I would be really fragile and sick.

Mom wasn’t eating well. Her blood pressure was high. Her doctors finally put her on bed rest. She quit her job because she wanted to keep me safe. After weeks on bed rest, we got a new doctor because our old doctor didn’t think our (local) hospital could handle my diagnosis. We went in early one Monday morning. The doctors gave Mom medicine to have me. I was born March 28; the day after one of my big brothers (Josiah).

We stayed at the hospital for a few days before coming home with hospice. I met 2 of my 3 brothers and my 1 sister. My biggest brother was at school, in college. The hospital had the special nurses meet us at our house. They came a few times a week in the beginning; then just twice a week.

Mom and Dad had to learn how to feed me. I have a long list of issues. The doctors said I was missing parts of my brain, my esophagus was offline, my heart was messed up; I had clinched hands, rocker bottom feet, one working kidney, my liver was weird, and I had a hernia. I have a few more things but we didn’t know about them until later. Our hospice nurses came for 6 months. They discharged me when I was almost 7 months old because I was doing good. We were okay with that!

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.