Every so often, we hear of babies born with medical conditions so rare or severe it seems there’s no chance they’ll survive. Maybe they’re the children of people we know, or we see stories in the media. Do you ever wonder what happens to them? I can tell you of at least one happy ending – my own.
While she was carrying me, my mother had high blood pressure and decided to go to 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 – Betty, my guardian angel, who has literally been there for me my whole 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, weighing just 3lbs 3oz – and with my organs on the outside of my body.
Ultrasounds weren’t carried out so often during pregnancy then, so this hadn’t been picked up on during my mother’s prenatal appointments. 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. (Usually, around the ninth week of a pregnancy, they’d move to the baby’s abdominal cavity to develop.)
Because it’s so rare, and because I was so small, my family was told I wouldn’t live.
If Betty hadn’t noticed I was in foetal distress, I definitely wouldn’t be here today. Even after I was born, nobody expected me to survive. Exomphalos is present in around one in every 4,000 births and has a high mortality rate – around 25%. There’s also a risk of severe malformations such as cardiac anomalies, neural tube defects and Beckwith-Wiedemann syndrome.
Because it’s 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. Little did they know.
The following day I was transferred to a hospital in Dublin. I’m told I was only ever happy and quiet when I was being cuddled by the nurses, and they’d usually have to write up their notes with me in their arms because I carried on if I was left in my cot. It led to be being nicknamed ‘Bowsie’ – an Irish word that means a bit of a rogue or someone who’s a bit unruly.
It was eight weeks before I was well enough to be transferred to Limerick, my hometown. Shortly before my second birthday I went back to Dublin for surgery, when my organs were returned to their rightful place inside my body. I received a special blessing in my local church for that birthday, to make up for the rushed and informal christening I’d had when nobody thought I would live. My godmother made me a beautiful dress and one of my uncles, who is a priest, said the blessing. It was such a special day for my family, a chance to celebrate how far I’d come. Of course, I was very young and didn’t fully grasp what was going on, but I felt like a princess and was the centre of attention.
The bullies told me everyone would be happier if I was dead and I should just kill myself.
As I grew up, there was little difference between me and the other kids where I lived. I just had to be careful when it came to doing sports, as it would have been easy for me to get hurt. 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, 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 decided they had nothing better to do than start harassing me on social media. This was a step up from school – 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 talked about changing their profile pictures to photographs either of me or of a belly button, and they used a popular song in the charts at that time – Memories by David Guetta, featuring Kid Cudi – to make fun of me. They reminisced on Facebook about what a great time they’d had bullying me. To this day, if I hear the original, it takes me right back to those unhappy days.
The thing is, these people weren’t children any more. They were all aged 19, 20, 21 – they’d been to college, got jobs. What made it even worse was that two of my cousins were involved, which really hurt.
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, telling someone to kill themselves? I didn’t talk to anyone about it because when I’d tried before I was told to get over it – 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.
Finally, feeling as though I was at the bottom of a dark pit, surrounded by blackness, I ran away.
On top of this, my beloved grandfather died not long afterwards. He was more than my grandad – he was my best friend and I felt lost without him. I gave in to the dark feelings that surrounded me and sank into a depression that was compounded when one of my grandmothers had a stroke. I couldn’t cope any more. 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.
They said I was being stupid. Finally, feeling as though I was at the bottom of a dark pit, surrounded by blackness with no means of escape, I ran away. I guess that’s why they call it ‘the depths of despair’. I ran because I needed space and to get away from everyone, and because I couldn’t see a way forward.
Things came to a head after one of my grandmothers died. A cousin – who had really been more like a big sister as I was growing up – came to get me and take me home. After much heart-searching and talking to family and friends, I decided to stay and moved in with my other grandmother, who had raised me. I became her carer. Focusing on that, plus talking to people and writing things down, helped me get better.
There are still days when I find life difficult, but I have coping strategies and I try and push onwards in the best way I can. One thing I would say is that running away solves nothing. Even if you don’t have anyone in your life you can open up to, there are helplines and online support groups. There are people ready and willing to listen and offer support. Turn to them.
I found another support group that connected people like me all around the world. It was a lifeline.
I was lucky, and by 2012 my life was looking up. I got married and gave birth to a beautiful and healthy baby boy, Jamie. 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 – there’s no other word for it. I’d felt alone because I didn’t know anyone else like me, and now I had a whole new group of friends who had been through the same thing and understood exactly what it was like.
Two years later, I had my daughter, Eloise – 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.
Each time, I had an excellent obstetrician who gave me the special care I needed for my fragile abdomen. That was thanks to the wonderful Betty – I trusted her judgement completely and knew she would only recommend the best!
The worst was behind me – or so I believed. I was wrong. In 2015, three of my former schoolmates started bullying me on social media again. I tried to block them, but somehow they’d find a way to comment on posts I would see.
At the time, my son was two years old and my daughter was seven months. They knew this. And yet they would still tell me to commit suicide. What must someone’s mind be like to think it’s ok to treat someone like this and possibly have two young kids end up motherless?
I became scared to leave the house or go shopping in case I saw them, but I told myself I had to rise above this and not let them get to me. Enough. They weren’t worth the nightmares, the stress or the fear.
It was hard, but I did it. I kept reminding myself how I’d survived exomphalos. This was nothing in comparison to that fight. This latest episode also prompted me to explore what help was available in Ireland for parents of children who were born with exomphalos and for those who, like myself, had survived it. It didn’t take me long to discover there was none – the condition was simply too rare.
Each year we join survivors around the world in celebrating Omphalocele Awareness Day.
I decided it was time that changed. So, on 16 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.
On January 31 each year we join survivors around the world in celebrating Omphalocele Awareness Day. We wear black and white clothing and post a picture on social media, using the hashtags #Exomphalos #ItsanOthing and #Omphaloceleawareness. It’s a way of letting more people know about the condition and also celebrating all the ‘little warriors’ who have survived, as well as remembering our omphalocele angels.
A few months later, in January 2016, I started the Exomphalos/Omphalocele Awareness page on Facebook in the hope of reaching even more families and survivors. I was thrilled when, later that year, I was asked to be part of Crumlin’s Big Book of Memories – a special celebration of the 60-year anniversary of Our Lady’s Children’s Hospital in Crumlin, where I’d been treated as a child.
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. I have a wonderful family that I adore. 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.
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