My name is Natalie Jones and I am 38. I have a congenital heart condition known as transposition of the great arteries. This was discovered when I was 2 weeks old. At 18 months old I had open heart surgery to correct it. As I was so young, I cannot remember the operation. However, I do remember growing up and leading a ‘normal’ childhood. There were times when I missed out on things like playing sports at school (mainly running). I had a scar down my chest that I was conscious about. Other than having regular checkups, I still tried to be a normal child.
When I was 8 my family and I emigrated to Australia, where I continued to have checkups. I was even on the netball team there. We returned to the UK when I was 16 and everything was fine until 2006 when, aged 26, I began to feel poorly. I began to get breathless and after months of hospital visits, the doctors said my tricuspid valve wasn’t working properly and I needed a replacement via open heart surgery. I had a boyfriend then and I was worried that he would leave me as I thought I would be a hindrance to him. I had a tissue valve replacement surgery which was thankfully a success and I began to feel ‘normal’ again.
In 2009 I married Chris (the same boyfriend). We asked the doctors what the risk would be if I had a baby and they said it would be a strain on my heart but they would look after me. I had a brilliant pregnancy with no problems. I had a planned c-section at 26 weeks as I was not allowed to go into labour and had a beautiful healthy baby daughter, Lucie. We could not have been happier. Like all new mums, I found it a tiring job. I had to be careful not to overdo things. It became harder as Lucie got older as I had to run after her, but I loved every minute of it.
In 2015, for no reason, my heart rate shot up to 168 bpm. For caution the doctors decided to fit a defibrillator and pacemaker on my left side. I didn’t like it as you can see it and I feel conscious wearing a swimming costume. Going through the airport I now must carry a card with me, as I cannot go through the security scanners. After this operation I felt I was going downhill; it was a big struggle to walk upstairs. I felt breathless. The valve I had was wearing out and the doctors said I needed another new one. This would be my third open heart surgery. All I could think of was my daughter – how could I tell her I had to have such a big operation? What if I didn’t make it through? I was so scared, but put on a brave face for her.
In 2016 I had another tissue valve replacement. My scar is higher than it was before, but I have now come to the point where I feel that if I didn’t have this scar I wouldn’t be here or have my daughter. The doctors have told me I will probably need a heart transplant in the future, but for now I just enjoy every day as much as possible.
I had always worked full time, but I am now lucky enough to have gone part time. I do feel upset at times as I am unable to join in the mums’ race at my daughter’s school or run round the park with her. Lucie knows that I have a poorly heart and she tells her friends as they ask her what my scar is for. She is not embarrassed, and it doesn’t faze her. I am proud to have my scar – it is a part of me.
I do not mind talking about my condition, what I have been through or supporting anyone who is going through a similar experience.