For most people, getting into college is a great achievement – the culmination of years of hard work and study. For me it was a big achievement, not just because of the effort I put into in school, but because of the fact that for most of my life, no-one thought that I would live long enough to finish school. My name is Tiffany, and I suffer from complex congenital heart defects (CHD).
When I was born in 1991, paediatric heart surgery was in its infancy in Ireland. Kids with heart conditions like mine, born 10 years before me, had already died. The doctors believed that I would die a few hours after being born and I was christened in Mayo General Hospital a few hours later. The next day, on August 17th, my dad brought me to Our Lady’s Children’s Hospital in Crumlin, my home away from home for the next 19 years. Even then, the doctors did not have much hope that I would live to see my first birthday.
Despite this, I managed to grow strong enough so that in 1992, I had my first heart surgery. A surgery described by the late Maurice Nelligan as ‘a messy pluming job’. Nice. At one stage during one of my surgeries, they were unable to remove me from the heart-lung bypass machine. My mother had to be physically restrained from assaulting my cardiologist.
For about nine years after my surgeries as a baby, life was relatively normal. Despite missing school on a regular basis because of a lowered immune system and hospital visits, my life was pretty much like that of any other primary school kid. Most of my time, between the ages of three and 19, was spent traveling between Westport and Crumlin. I used to miss school because of these trips; I often brought my homework – and later on, exam guides – with me on trips to Dublin and spent the time waiting around to be seen in the hospital catching up on my studies.
Then after a routine orthodontic surgery in early 2001, a nurse in the hospital noticed something different in the way my heart sounded. My cardiologist was called and, almost immediately, I was sent for a range of tests – including an MRI scan.
The diagnosis was very bad. I had developed an aneurysm on my aorta, the main artery for the heart. The doctors were stunned, they had never in their wildest dreams expected that something like this could happen. It got worse. At the time it was discovered, the aneurysm was close to bursting. At any time – be it in school, at home watching telly, or in my sleep – my aorta could rupture and I’d be dead before I even knew it happened. They gave me a maximum of six months to live. I was terminally ill and didn’t even realise it.
There were only two choices my parents could make: let nature take its course and have anywhere between the next minute and the next six months left with me, or give consent for me to have high risk surgery, which had just a 50% survival rate. But as my mother said: she had no choice. Despite the risks, they gave consent to the surgery.
Thanks to various issues in the Irish health service at the time, I was flown to Baltimore, Maryland to have my surgery done at the renowned John Hopkins Children’s Centre, along with five other kids who also needed heart surgery and couldn’t be treated in Ireland.
I don’t actually remember a lot of those two weeks in America. I remember the first night in Intensive Care, finding it hard to breathe and hallucinating about seeing my parents. That’s how I know now how dicey my situation was. But, somehow, I recovered and moved to the general ward. It was two or three days after the surgery, but it felt a lot longer.
Ever since that fortnight in May 2001, everything went back to almost normal. My hospital visits were cut down to once a year, I stopped needing so many antibiotics and I stopped getting sick so often. But the most important thing was that I was finally able to settle down in school and come to college, beating the odds the doctors had set all those years ago.
I wish I could say that’s where my story ends. That I go through college healthy and happy, never to be bothered by my heart again. But this is real life. The fact is my heart problems won’t go away. I’m due to have valve replacement surgery in the coming years and possibly other surgeries as well. I’ll be on daily medication for the rest of my life. That’s life, I suppose.
Despite everything, I don’t let my condition get me down too much. I admit it can be a little much to handle at times and peoples reactions, usually ones of exaggerated pity and awkwardness, are fairly frustrating.
There’s at least a 10% chance that my children will also have CHD. If that happened, I’m not sure I’d be able to go through the pain my parents went through. But at the same time, I think I’d have an advantage my parents didn’t have, I’d be able to tell my kids: “Mummy understands, she had the same problems when she was little”.
But I don’t dwell on it too much. My doctors said I wouldn’t live to see my first birthday; now I’m months away from finishing my degree. I’ve had a roller coaster 21 years, hopefully there’ll be many more of them to come.