My name is Zoë and I was born on the 17th of September 2002, a tiny 5lb 13 ½ oz. At birth, I seemed a healthy baby however at six weeks old I took ill and I was taken to A&E at the Royal Victoria Hospital. My parents discovered I had a complex heart condition called Pulmonary Atresia with Hypo-plastic Right Ventricle and Intact Septum, basically I have half a heart. That evening on the 30th October at just six weeks old, I was admitted to Clark Clinic. I’ve been told that I was in a critical condition and that I had a big battle ahead of me. I was in such a critical condition that I was christened that night. I then had my first operation the following day on 31st October. My Mum and Dad are always very open about my heart condition and I have been brought up to not let it take over my life.
I have had two more operations since then. One at 16 months and another at 5 ½ years. I don’t remember that much about my operations, but I do remember being allowed to have my favourite teddy Elmo (and he still is) beside me throughout my operations. He even got a wee wristband too! After my third operation, I remember asking for a glass of warm milk! Of all things! And I’ve never had it since! After my last operation in P1, I am lucky not to have been admitted again into hospital, only for routine check-ups.
I loved staying in Clark Clinic after my operations. It was so much fun! Some people don’t understand why I loved the hospital and how I was never scared. I guess I have sort of grown up being in and out of hospital for check-ups and that I’ve never really questioned being scared. I loved playing games and making lots of crafts. Gillian (the play specialist) was lovely. The nurses were all so nice and they still are. I do remember my primary one teachers visited me. One teacher called me “pink lips” and she has called me that ever since.
Like most with a heart condition I have to take medication each day. I take Captopril three times a day and Warfarin at night. I never really think about taking my medication, it is nearly like second nature. Whenever I am out with my friends they always remind me to take my meds. I have my own INR machine that I use each week to test my blood. It simply means that every week I have to prick my finger to find out how much warfarin I should take. Before I got my INR machine I had to go up to the Royal every week. I hated this as it took so long and it was tiring. Being able to check it at home makes life so much easier. This is just another way of how I benefit from the Children’s Heartbeat Trust.
From my operations I have two scars and 3 “wee kisses” from the drain tubes. My scars are barely noticeable and they definitely don’t lower my self-confidence! I am proud of my scars and I don’t try to hide them, they make me who I am.
To be honest growing up with a complex heart condition isn’t that bad, I don’t think about it every day and sometimes I even forget I have it! I know my own limits and I am lucky enough to get a lot of help in school. I am allowed to go to my locker in-between classes and in some classrooms I even have my own drawer where I can keep some of my books. I also have double text books; this means that I can keep one textbook in the classroom and one at home. This helps a lot, as it means I don’t have a heavy bag as I only have to carry the bare minimum. All of my friends know about my condition and they are always looking out for me and offering to help me. They sometimes even carry my bag if it is heavy. I have to take medication in school which is given to me by the schools SENCO, Mrs Smith. Mrs Smith has helped me a lot to settle into high school. I know this can be a worrying time for some but I can assure you that there is nothing to worry about. I can go to her if I have any queries, anytime. Every school needs a Mrs Smith!
I do a lot of things that someone with my condition would not be expected to do. If someone tells me that I can’t do something, it actually makes me want to do it more! I love going hiking and doing water sports. I go bodyboarding too. For water sports, I wear a really thick winter wetsuit, wetsuit boots and wetsuit gloves to keep me warm. Last year I even took part in a Mini Mudder at Tough Mudder with my dad! I am doing my Bronze Duke of Edinburgh this year, but I will only be carrying a “day bag”. This means I won’t need to carry the tent or cooking equipment etc., just my clothes and food. In school, I take part in P.E, sometimes umpiring if it is a contact sport. When I was younger I went to tap dancing classes every week from P1 to P7, which I loved.
I really enjoy the Children’s Heartbeat Trust Summer Blasts and the teens days out. It’s great to meet other people who are living with similar conditions. It’s nice not being the only one taking medication sometimes. At the Summer Blasts, it’s very easy to forget that you have a heart condition! We do a range of outdoor activities at the Summer Blasts, from high ropes courses to canoeing. We do lots of activities that people with heart conditions wouldn’t normally get to try and I love the opportunity to try something new like driving an off-road jeep! I have made a lot of friends through the Children’s Heartbeat Trust. If you haven’t already signed up to be part of the teens group, you really should!
I’m lucky to have had a great surgeon Dr Gladstone and still have the best cardiologist, Dr Craig. My mum and dad always tell me that I have achieved more than they ever expected me to, including being in the top 20 of my year in high school in both year 8 and 9.
I may only have half a heart but I certainly don’t live have a life and I hope to keep living life to the full!
By Zoë Fleck