January 31 marks the 5th International Exomphalos/ Omphalocele Awareness Day. As part of Birth Defect Awareness Month, Omphalocele Awareness Day was first celebrated on January 31, 2012. All you have to do is wear black and white on the day to show your support.
Exomphalos/ Omphalocele is a weakness of the baby’s abdominal wall where the umbilical cord joins it. This weakness allows the abdominal contents, mainly the bowel and the liver to protrude outside the abdominal cavity where they are contained in a loose sac that surrounds the umbilical cord. The cause of this condition is unknown and is a rare problem occurring in about 1 in 5000 pregnancies. About half of all babies with Exomphalos will have problems affecting other body systems. Most commonly affected are the heart, lungs, and kidneys.
Local Limerick lady Edwina Wrenn was in contact with I Love Limerick, to tell us more about the Awareness Day and the disease itself. Edwina was born 26 years ago in Limerick with Exomphalos Major and was transferred to Our Lady’s Children’s Hospital, Crumlin. Edwina explains that, “Early in all pregnancies the intestine develop inside the umbilical cord and then usually move inside the abdomen a few weeks later. With Exomphalos the intestines and sometimes other organs in my case the liver remain inside the umbilical cord but outside the abdomen.”
Edwina has started her own Facebook Group to spread awareness about the condition called “Irish Exomphalos / Omphalocele & MOOS Support Group”. Edwinas main aim for the Facebook group is 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, Edwina has gone on to get married and have two children. Edwina explained that though this may not be of importance to some people to “parents of Exomphalos babies it is massive”. Parents of these children live with the not knowing what the future brings for their children. In Edwina’s experience she has found that once she has spoken to these parents they become “a bit more relaxed that there is hope that their 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”. Edwina is in a worldwide group that mostly has members from America and adds, There is no real support for parents or adult survivors in Ireland and I’m hoping to change that.”