My name is Ella, I am a young adult with congenital heart disease. I was born with Transposition of the Great Arteries, it was diagnosed a few hours after I was born.
The next day I had a hole blown in my heart to allow oxygenated blood to get around my body. I needed an arterial switch operation to ensure I could survive outside of an incubator, this was done when I was just 5 days old; 8 weeks later, after an agonising wait, my parents were finally allowed to take me home.
I had a few more closed heart procedures over the years, but at around 3 years old the cardiac team at Bristol Children’s Hospital decided I needed another open heart surgery. I was once again put to sleep and my parents left to wait and hope that their child would come home soon.
I came out thriving, a strong healthy little girl who would grow up having to go back and forth to the hospital for minor closed procedures to prevent my arteries from narrowing too much. I grew up like any other little girl, I would run around and play with friends, unbeknown to me that I was ever unwell.
Soon I reached my early teens and only then I started to notice I was different, changing rooms became my worst nightmare, fearful of being judged for my scars. I started to notice I couldn’t join in with friends at theme parks or funfairs, and I wasn’t as able in sports lessons as other children my age. I remember being stupidly annoyed I wasn’t allowed my ears pierced, I stormed out of the hospital, angry that I had to put up with being ill and I couldn’t even have pretty earrings to make it all better. Looking back now, it’s laughable but at the time, I felt that my world was a waste of time. What was the point of all these hospital visits?!
Growing up is difficult at the best of times, but having a heart condition makes it a whole lot harder. I feel like I’m a ticking time bomb and I’ve always been aware that at anytime my heart could need further intervention.
So just before my 21st birthday my consultant invited me in to have some tests. Which showed up I had a blocked coronary artery, it had been blocked from my first operation at 5 days old. My whole world was shattered, they wanted to operate. I screamed and told them I wasn’t doing it, they would need to harvest veins from my chest wall, legs and arms. I had a big enough scar to deal with, I certainly did not want more scars. My mum talked me round and in April 2014 I went into hospital for my 3rd open heart surgery.
Two years on and my life is going better than I could have ever imagined, shortly after my operation I found Youth@Heart, I had wanted to give my time to a charity which would help other people like me.
Youth@Heart have already changed my life just through volunteering with them, the thought that even if one young adult could be helped by the Youth Worker is amazing. I struggled daily before, during and after my operation, the team at Bristol Heart Institute are fantastic but they are all medically inclined. They don’t quite get how difficult just waking up and carrying on everyday is.
I’m doing well now thanks to the intervention of Bristol Heart Institute and an even bigger thanks to an amazing support network I have from my friends and family. However, sometimes this just isn’t enough, there’s only so many times that people want to listen about your problems and sometimes its difficult to explain how you’re feeling. So difficult in fact, that a year ago I was diagnosed with Post Traumatic Stress Disorder, this was incredibly hard as everyone thought I was being dramatic at first, that I was just trying to get attention. I had nightmares every night; flashbacks and panic attacks daily, to the point I had to leave my job.
After a lot of input from my mum and a mental health worker I’m back at work now and I don’t suffer anymore. I strongly believe had the right support been in place when I had been diagnosed with a blocked coronary artery then I would not have needed help. I think I was expected at 21 years old to be grown up and get on with it, but facing the option of an operation or the end of your life just isn’t that simple and no amount of medical intervention will ever make it easy.
To me, a cardiac youth worker would make a world of difference, they could support us to stay in education and employment and also enable us to be independent, instead of constantly depending on our friends and family.