‘I arrived in December 1989 only 3 pounds, with my organs outside of my body.’: Exomphalos warrior defies all odds, overcomes bullying to start national support group 

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“My story begins before I was born. My mother went into UMH Limerick in Ireland with high blood pressure while pregnant with me. The nurses were monitoring my movements and heartbeat to make sure I was okay. One of the nurses noticed something didn’t seem right, so they went to get another nurse named Betty who turned out to be my guardian angel. Betty discovered my mother was in early labor and I was in serious distress. ‘Everything is fine,’ she told my mother to keep her calm. She hurriedly left to get Dr. Walsh, who came and took my mother for an emergency C-section. They didn’t know I had Exomphalos, also known as Omphalocele until I was born. Back then, ultrasounds weren’t commonly used. It was a complete shock to my parents and family when I arrived in December 1989, premature, weighing only 3lbs 3oz, with some of my organs on the outside of my body.

baby who was in the hospital for so long
Courtesy of Edwina Wrenn O’Connell

Exomphalos/Omphalocele is an abdominal wall defect where the intestines and other organs such as the liver are in a clear sac outside the body when a baby is born. My Exomphalos contained my liver and intestines. Betty was my guardian angel that day; if she didn’t act as quickly as she did and notice I was in distress, I wouldn’t be here today. Exomphalos is so rare, that with how small I was, they told my family I wouldn’t live. So, I was baptized and confirmed straight away. Little did they know, I was a little warrior who wasn’t going to give up. I defied the odds and shocked them all.

The day after I was born, I was transferred to a children’s hospital in Dublin. The nurses there gave me the nickname Bowsie because I was a rogue, and I was only happy and quiet when I was in their arms. Betty told me when I was older that whenever she called the hospital to see how I was doing, the nurse would say they would have to write their notes at the nurse’s station with me in their arms because I wouldn’t stay in my cot. I remained there for eight weeks until I was well enough to be transferred back to Limerick. Just before my second birthday, I went back up to the children’s hospital in Dublin for surgery on my tummy. I stayed there for nine days until I was well enough to go home.

For my second birthday, I had a special blessing in my local church because I didn’t have a formal christening when I was a baby. For this special occasion, I wore a beautiful dress made by my godmother. One of my uncles said the special blessing as he is a Salesian priest. It was special to reach this milestone and be able to celebrate what I’d overcome.

baby girl in her baptism gown ready for the day
Courtesy of Edwina Wrenn O’Connell
Courtesy of Edwina Wrenn

Growing up I had a normal childhood, despite all the odds. I could do everything all the other children could, except I was very wary of sports as I was worried about my scar and getting hurt. There was only one downside throughout my life – I was bullied for looking different. Due to the surgery on my tummy, I was left with a long scar down my stomach which made me different from others because I don’t have a belly button. I would get called ‘inside out girl,’ a ‘freak,’ and ‘alien.’ I was bullied from the age of 5 right up until I finished school at 19.

I thought once I had graduated in 2008 that would be the end of it. In 2010, a group of people I had gone to school with who had nothing better to do that evening decided to put all their energy into bullying me online. Along with calling me the usual a freak, alien, and inside-out girl, it got nastier. They had a good laugh that they were upsetting me, telling me that everyone would be happier if I was dead and that I should kill myself. They went on to discuss changing their profile photos to a photo of me or of belly buttons. They also chose a song to remember that night which was very popular on the charts that year.

girl smiling and has a badge on her jacket
Courtesy of Edwina Wrenn O’Connell

Whenever I hear it now, it brings everything back and I have to turn it off right away. These people were 19-21 years old. Two cousins of mine were involved in the bullying which was even worse for me to cope with. A few months later, I bumped into the ring leader who was the worst of them that night in the local shop. I thought, ‘Here we go again,’ but she didn’t say anything. She wasn’t so brave when she was not in front of a keyboard.

Having all of those nasty things said to me was awful. I couldn’t cope with it. I wondered, ‘What is the point in life?’ when I couldn’t go anywhere without bumping into one of them and worrying about what they would say. I lost interest in things I loved to do. I didn’t want to talk to anyone or meet up with anyone. I felt so low. I couldn’t understand how people could be so cruel and how they could think telling someone to end their life was funny. I felt so alone.

Not long after the bullying, my grandfather passed away. He wasn’t just a granddad, he was my best friend. He raised me. I was completely lost without him and I went into a deep depression. My head felt like it was going to explode from trying to process everything and I just wanted to end it all. The only reason I didn’t was because of my goddaughter and my grandmothers. I couldn’t do that to them. Not long after my grandfather died, one of my grandmothers had a stroke. It all got too much for me to cope with. I tried telling people I needed help, but nobody would listen. They told me I was being stupid. These were people I trusted and they wouldn’t listen to my cries for help. I felt like I was in a black hole and there was no way of getting out. I ran away because I needed space away from everyone. I now know running away isn’t the answer and I now know about hotline numbers.

baby girl and her grandpa
Courtesy of Edwina Wrenn O’Connell
teen girl and her grandpa posing for a picture
Courtesy of Edwina Wrenn O’Connell

In 2012, things finally took a turn for the better. I got married and gave birth to a beautiful healthy baby boy. In 2014, I also gave birth to a beautiful healthy baby girl. I had a natural birth with both of my children. I had a small bit of scar pain before and after both pregnancies as my bump grew and contracted. Other than that, and the usual pregnancy sickness, it all went smoothly. Having a brilliant obstetrician helped a lot. I wasn’t worried because I knew I was in safe hands. Betty recommended him, and I received the highest quality care I needed for my fragile stomach.

In 2015, it had been five years and I didn’t think I’d have to deal with bullying anymore, but I was wrong. Three people I had gone to school with started targeting me online out of the blue. Even when I blocked them they still managed to find posts and comment making fun of me. They again went so far as telling me to go kill myself. At the time, I had a 7-month-old daughter and a 2-year-old son, and these horrid people would have been happy for my children to be left without a mom. I was afraid to leave my house or be alone at the local shopping center in case I would bump into one of them.

pregnant belly of a survivor
Courtesy of Edwina Wrenn O’Connell
Courtesy of Edwina Wrenn

After so many years of bullying, I told myself I had to rise above them and try not to let them get to me. They weren’t worth it. It took all of my strength to do it, and at times I didn’t think I was strong enough, but I kept telling myself that if I survived Exomphalos,  I can survive this. I found meditation helps me get through those memories that still haunt me. I still have bad nightmares. Pouring all of my energy into raising awareness and looking after my children keeps me distracted and focused on something else. I have a purpose.

I wanted to learn more about the condition I was born with and came across a worldwide support group. I finally felt like I belonged. Growing up I felt so alone because I didn’t know anyone else like me. These people are now not just friends, but they are family. I have made amazing friends from around the world who are survivors like myself. There was no support for parents or adult survivors in Ireland since the condition is so rare, and I set out to change that. On June 16th, 2015, I created the only Irish Exomphalos/Omphalocele Support Group.

It is a safe space for parents to meet other parents who are going through a similar situation and support each other. They can ask any questions they have in a safe environment where they will get all the love and support they need. On January 17th, 2016, I created the Exomphalos/Omphalocele Awareness page in the hopes of reaching more families and survivors. During the summer of 2016, I was delighted to be asked to be part of Crumlin’s Big Book Of Memories as they were celebrating Our Lady’s Children’s Hospital (where I was treated) being open 60 years.

In 2021 we had a new addition to the family, another healthy baby boy. That pregnancy was difficult since I suffered from Hyperemesis Gravidarum and I was incredibly sick. But I was blessed to have a brilliant obstetrician who my old OB thought very highly of, so I knew I was in safe hands with her. November 2021 marked the 30th anniversary of my closure surgery. To date, I have had no health issues related to the Exomphalos. My guardian angel Betty has been part of my life all the way through and has gotten to see me become a mom. I am proud to share my story and bring hope to parents that their little ones can live a happy, healthy, and normal life as I have.”

woman taking a selfie
Courtesy of Edwina Wrenn O’Connell

This story was submitted to Love What Matters by Edwina Wrenn O’Connell, 32, From Limerick, Ireland.  You can follow her journey on Facebook. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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