People wonder why I am telling my story. It's simple I grew up knowing nothing about the condition I was born with. I felt alone I didn't know anyone who was born with the same condition as me, I didn't have anyone I could speak to who knew and understood what I was going through and because I was so different to other people because I didn't have a belly button I was an easy target for bullies and the reason being they were ignorant and ill-informed. Instead of trying to understand why I looked the way I looked they chose the ignorant phrase of saying I was born inside out saying I was an alien and a freak .
Being kind and helping others costs nothing. There is no real support in Ireland for parents and for survivors of Exomphalos / Omphalocele. I want to change that. Parents and other survivors deserve love and support. That’s why I set up the Irish support group and created the awareness page so it might reach others.
It's hard to describe how amazing it is to talk to people who know what you are going through that you finally don’t feel alone, you don’t feel so different that there are others just like you. Each case is very different as each Exomphalos / Omphalocele differs in size and content. Then you have the size and weight of the baby as well . One-third of all babies with Omphalocele have liver herniation, which is often associated with a small belly size and small lungs (known as pulmonary hypoplasia), two factors that can affect treatment and long-term outcomes. Up to one-third can also have a heart defect which can also affect long-term outcome. Not all babies survive .
Some people take getting pregnant for granted. Some survivors have different stomachs to others, some of them don’t have enough muscle to be able to carry a baby or there might be other health issues that prevent them from getting pregnant. It’s a worry to parents and to young survivors if they will grow up to have a family. I am lucky to be one of the survivors who has gone on to have children. There are other survivors who are moms in the group who are inspirational lovely women. We are the face of hope for 100s if not 1000s, of survivors and families there are no more than 100 of us from around the world in the support group . Telling my story brings hope to parents and other survivors that they can have a normal life.
