The story of Edwina
In December 1989 my mother went into hospital in Limerick Ireland with high blood pressure. One of the midwives noticed that something wasn’t right and she went and got another midwife who discovered that my mother was in early labor and that I was in serious distress. My mothers OB was called straight away and she had an emergency c- section. Everyone got a surprise because they didn’t know I had Exomphalos until I was born, ultrasounds were not done back then. I was born Exomphalos Major weighing 3lbs 3oz. Exomphalos is also known as Omphalocele. The doctor didn’t think I would survive so I was baptized and confirmed straight away. I was taken to one of the children’s hospitals in Dublin the day after I was born and I stayed there for eight weeks until I was strong enough to be transferred back to Limerick. Before my second birthday I went back to Dublin for closure surgery and I stayed there for nine days until I was well enough to go home. I had a normal childhood and I could do everything that everyone else could. I got married in 2012 and I have gone on to have 3 beautiful children. Growing up in Ireland I didn’t know anyone else like me and I didn’t know anything about the condition. so I set out to change that and on June 16th 2015 I set up the only Irish Exomphalos/ Omphalocele Support Group on Facebook. It is a safe space for parents and adult survivors to ask questions and talk to each other. in January 2016 I set up and run the Exomphalos / Omphalocele Awareness Page on Facebook.