Limerick woman reaches out to people with Exomphalos

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Edwina Wrenn-O'Connell

SHE was born with her organs outside her body and suffered at the hands of bullies who called her “inside out girl”, “freak” and followed her into adulthood, urging her to kill herself when she had children of her own.

But Edwina Wrenn-O’Connell (32) from Dooradoyle is too much of a fighter to let mean and ignorant people get the better of her and now she has started the only Irish support group for people born with her condition and their families.

“The same people who were telling me to kill myself when I had a two-year-old son and a seven-month-old baby girl are now all about fundraising for Pieta House,” Edwina told the Limerick Post.

“They were stalking me. One of the people involved was someone I thought of as a good friend and that was very hurtful.”

Edwina has put those dark days behind her, and now she moderates the group she started for Exomphalos/Omphalocele, an abdominal wall defect where the intestines and other organs are in a clear sac outside the body when a baby is born.

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“There are a lot of international groups, but they have thousands of members and there are a huge number of posts every day, so when an Irish member posts to ask a question, it gets overtaken very quickly.

“The Irish group is small. A lot of the members have the same surgeons or paediatricians. We have just 52 members, so people have a chance to discuss things, get advice and have questions answered by other members,” said Edwina.

Although it’s a small group, Edwina spends several hours every day working with members on the site.

“I wait till the kids are in bed to give me some free time. There are issues about privacy and we have to vet people to make sure they are genuine when they try to join. People have taken pictures of babies with Exomphalos off these sites and put them online.”

Edwina Wrenn-O’Connell after one of her childhood operations

Edwina was born two weeks early weighing just 3lbs 3ozs after a vigilant midwife noticed she was in distress. She was born with her liver and intestines outside her abdomen, and the first two years of her life were full of medical appointments and eventually, surgery to correct the condition.

She went on to have three healthy children of her own without any great problems with her surgery scars.

Her advice to people who suffer at the hands of bullies is “speak to someone if you’re in school, a teacher you like or trust and don’t be tempted to look at what these people are saying on social media. Block them and ignore them. Reaching out to help other people with the site realy helps me to put that behind me.”

The support group can be found here