My name is Clare and I am 44, this is my TGA hope story.
I decided to write my heart story to give hope to the world, especially if you are a first-time mum or dad and your baby has or will be born with heart problems. I hope my story will settle your worries a little and help you to stay positive.
My mum’s midwife told her my heartbeat was strong, but then when I was born I was blue, I was a blue baby and I was rushed to Myrtle Street Children’s Heart Hospital in Liverpool. I was one of the first patients there to have two open heart operations to save my life for Transposition of the Great Arteries, this is when both arteries to the heart are the wrong way around, so they needed to correct it by doing a balloon septostomy just after I was born to allow blood and oxygen to flow the correct way.
When I was a year old, I was let out of hospital to celebrate my 1st birthday. But on the second day, I was rushed back in to have the mustard procedure carried out by Professor Pickford. They had to crack my ribs to get to my heart, but this was the day in which they saved my life. After coming out of the operating theatre, they rushed me back into surgery as I was haemorrhaging, but they managed to stop the bleeding.
I was put on medication from day 1 when I was born and am still on lots now, at 8 years old I was Flintshire Miss Rosebud and a model in Macclesfield which I loved. Due to the cracked ribs I had a pigeon chest, growing up this disappeared and I had many other procedures. I had my first pacemaker fitted in 2007 due a heart block, but my cardiac team couldn’t believe how well I was doing, even though I have so many heart problems (which is too complicated to write them all down), I then had my second pacemaker fitted in 2014.
I now have a new pacemaker which was fitted in 2017. I still have many problems, my right lung is not working well, with my heart yes I have lots of symptoms, chest pain, breathlessness, tiredness and when I’m ill I will be for a few weeks or even a month at a time. I also have great days, I love going for walks with my parents, I have difficulty in walking very far so I do need to stop to catch my breath and then I start again, I also love playing with my niece and nephew when I can.
I am now 44 and I’m here to tell my story to offer hope to all those parents who have children that are poorly with TGA or similar heart problems. I love my life, I am who I am because of my heart condition. If you were to see me now, you wouldn’t think that anything was wrong with me. Every three months I see my heart teams in Liverpool and Wales and am just waiting for my next amazing journey with Newcastle Freeman Hospital. I wouldn’t change a thing about my heart failure, my journey has been hard and scary but amazing at the same time, now to let my second journey begin.
¬ featured in Guch News Spring ’21 edition – issue 98.