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Dublin: 13 °C Wednesday 23 October, 2019
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Opinion: 'I was born with my organs outside my body and given the last rites but now I have two children of my own'

When I was born I weighed just 3lbs 3oz and was expected to die. I survived but faced persistent bullying about my condition well into adulthood, writes Edwina Wrenn.

Edwina Wrenn

WHILE SHE WAS carrying me, my mother had high blood pressure and decided to go to the hospital.

They carried out some checks, and one of the nurses realised something was wrong. She called for another nurse to come and take a look.

That was when Betty, who I call my guardian angel, came into my life. Betty recognised that my mother was in early labour, and that I was in serious distress in the womb.

I was born prematurely by emergency C-section in December 1989, weighing just 3lbs 3oz and with my organs on the outside of my body. 

The official name for my condition is exomphalos, also known as omphalocele, it’s a rare defect in the abdominal wall where the intestines, liver, and sometimes other organs, stay in a clear sac outside the body. 

If Betty hadn’t noticed that I was in foetal distress, I definitely wouldn’t be here today.

Exomphalos is present in approximately one in every 4,000 births and has a high mortality rate of around 25%.

There’s also a risk of severe malformations such as cardiac anomalies, neural tube defects and other issues. 

Because it is rare and because I was so small, my family was told I wouldn’t live.

They quickly arranged for me to be baptised, confirmed and given the last rites all in one go.

The following day I was transferred to Our Lady’s Children’s Hospital Crumlin.

It was eight weeks before I was well enough to be transferred to a hospital in my hometown, Limerick. 

Shortly before my second birthday, I went back to Crumlin for surgery and my organs were returned to their rightful place inside my body.

After that on my next birthday, I received a special blessing in my local church to make up for the rushed and informal christening.  

Bullying

As I grew up, there were few differences between me and the other kids where I lived.

The only real problem was the bullying I endured because I looked a bit different – the surgery had left me with a long scar down my abdomen and no belly button.

From the age of five right up until I left school at 19, I endured taunts, teasing and downright nastiness. I’d be called a freak, an alien and the ‘inside-out girl’. 

I honestly thought that once I left school that would be the end of it, but a couple of years later a group of my former fellow students again began to harass me, this time on social media.

Alongside the usual name-calling, they told me everyone would be happier if I was dead and I should just kill myself. They found it hilarious that this kind of thing upset me.

They reminisced on Facebook about what a great time they’d had bullying me and talked about changing their profile pictures to photographs either of me or of a belly button.

They used a popular song in the charts at that time, Memories by David Guetta, to make fun of me. To this day, if I hear the song it takes me right back to those awful, unhappy days.

The thing is, these people weren’t children anymore. They were all aged 19, 20, 21 – they’d been to college and got jobs.

Once, I bumped into the ringleader in a local shop. I quaked inside, waiting for her to start on me – but she never said a word. I realised she wasn’t so brave without a computer screen to shield her. It still upset me, though, and really affected my life.

I’d worry about running into them when I was out and about. I lost interest in doing the things I loved.

How could anyone think it was funny to tell someone to kill themselves?

I didn’t talk to anyone about it because when I’d tried to express my feelings before, I had been told to get over it and that they were only words and I should ignore them.

It made me feel alone and that this was something I had to work out myself. 

Running away

On top of this, my beloved grandfather died not long afterwards.

He was more than my grandad – he was my best friend he raised me and I felt lost without him. I gave in to the dark feelings that surrounded me and sank into a deep depression.

I couldn’t cope anymore. This was too much. I tried to tell people how I was feeling, to let them know I really needed some help, but nobody listened. 

Finally, at my lowest, I ran away from my family because I needed space, to get away from everyone and because I couldn’t see a way forward. I was suffering from serious depression at that time. 

Later, following the death of my grandmother, I decided to return home and move in with my other grandmother, who had raised me and I became her carer. Focusing on that, as well as opening up to people and writing down how I felt – all helped me get better. 

Now I want to reach out to anyone else who is being bullied or suffering from depression. Even if you don’t have anyone in your life you can open up to, there are helplines and online support groups you can turn to.

There are people ready and willing to listen and offer support. 

Lucky

I was lucky, and by 2012 my life was looking up.

I got married and gave birth to a beautiful and healthy baby boy. The previous year I’d joined a support group for people with exomphalos, and now I decided it was time to learn more about the condition I’d been born with.

That led to me finding another support group that connected people like me all around the world. It was a lifeline.

I’d always felt alone because I didn’t know anyone else like me, and now I had a whole group of friends who had been through the same thing and understood exactly what it was like. 

Two years later, I had my baby daughter – just as gorgeous and healthy as her older brother.

I’d been worried my condition would cause problems with my pregnancies, but apart from some scar pain as my bumps grew and shrank there were none.

I had an excellent obstetrician who gave me the special care I needed for my fragile abdomen. That was thanks to the wonderful Betty, who recommended the obstetrician and I trusted her judgment completely

The worst was behind me – or so I believed. 

Further harassment

In 2015, three of my former schoolmates started harassing me on social media again, including telling me to kill myself.

I tried to block them, but somehow they’d find a way to comment on posts that I would see. I became scared to leave the house or go shopping in case I saw them. 

At the time, my son was two years old and my daughter was seven months. They knew this and yet they still told me to commit suicide.

What must go through an adults mind – to think it’s ok to treat someone like this and possibly leave two young kids without a mum?

I told myself I had to rise above this and not let them get to me. They weren’t worth the nightmares, the stress or the fear. 

It was hard, but I did it. I kept reminding myself that if I could survive exomphalos I could survive anything.

Creating support for others

This latest episode prompted me to explore what help was available in Ireland for people with exomphalos or parents whose babies are born with it. It didn’t take long to discover there wasn’t any support group here as the condition is so rare.

Determined to bring something positive to the world, in June 2015 I launched the only exomphalos/omphalocele support group in Ireland.

It’s a safe space for parents who have a child with the condition to meet others who are going through the same thing. Somewhere they can ask any questions they might have and know they’ll be supported and understood.

It’s a way of letting more people know about the condition and also celebrating all the ‘little warriors’ who have survived and remembering the ones who didn’t. 

Today, things are pretty good. My health is fine with no issues related to my condition. My guardian angel Betty has been with me through it all.

If any other parent has a child with exomphalos, I hope my story gives them hope that they too could live a happy, healthy and normal life.

Edwina Wrenn is 29 years old and lives in Limerick, Ireland. She is a full-time mum to two children, Jamie and Eloise.

She runs the only support network in Ireland for survivors of exomphalos and parents of babies born with exomphalos. 

When she gets the chance she enjoys going to concerts, antique fairs and to the movies. 

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Edwina Wrenn

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