Hope for Exomphalos

EDWINA WRENN is twenty six years old and the proud mother of two fabulous children.

But when she was born, the young mother from Limerick’s Father Russell Road weighed a little more than three pounds. Her liver and intestines were outside her body and doctors told her parents there was little chance she would make.

Her condition, known as Exomphalos Major, is one which requires extensive surgery and many babies born with it do not survive.

But Edwina, who talks to and supports people who have survived the condition, wants worried parents to know that there can be a happy outcome and their children can go on live normal lives.

“Exomphalos is also known as Omphalocele and January 31 is Exomphalos / Omphalocele awareness day when I want to get exposure for the Facebook support group I set up for parents of children born with Exomphalos and for adult survivors.

“I want to spread awareness for Exomphalos so parents and other survivor’s don’t feel alone and can talk to people who understand how they feel.

“As a survivor, I’ve gone on to get married and have two children which to some people seems not important but to parents of Exomphalos babies it is massive.

“Not knowing what the future brings is very hard. I’ve spoken to many of these parents and it’s lovely to see them a bit more relaxed knowing that there is hope that there little ones will have a normal life “. 

Edwina has been a face of hope for hundreds, if not thousands, of families because “there are no more than 100 of us Omphalocele adult survivors active on our support group from around the world,” she said.

Edwina is in a worldwide group that mostly has members from America and adds that “there is no real support for parents or adult survivors in Ireland and I’m hoping to change that”.

Edwina’s support group can be reached at https://www.facebook.com/ExomphalosOmphaloceleAwareness/?ref=bookmarks