Hi guys,
Today we start a new blog series on CHD! So I thought where better to start but my very own story!
So my story starts in 1985 in a community hospital where I was born! Let me say first of all it might have started here but it was to be a big adventure, with ups and down!
Sadly I was born with Tetrology Of Fallot and needed more specialist care so I was put in an ambulance and rushed to Birmingham Children’s hospital, where I was going to spend the next 16 years visiting!
The first operation I had was a BT shunt, this operation in very basic terms allows blood to flow better to the lungs meaning you get better oxygen levels. This was used to give more time before I had surgery, and because I had blue spells! The first one failed and I had two! This means I have a scare that goes from my right side right to the middle of my back! My first victory sign!
I eventually went home after this but was regularly going to Birmingham daily, every other day and so forth, god knows how much that cost as my mum didn’t drive!
At 3 years old I went into heart failure and was very poorly, but I fought back and went home again, your seeing a pattern here right?
While all this was going on sadly I couldn’t have my main surgery so my mum & the town started fundraising in my name to have my surgery privately. In this time my mum also met Sandra & Ray with Emma and “young at heart” and they became life long friends and me & Emma certainly would have some fun along the way!
In 1989 a surgeon came back to England from Australia called Dr Bill Brawn and he became my favourite person! In November 1989 it was my big moment when I was to have major heart surgery. My mum handed me over to the team and just hoped I’d come back, wed seen many children pass away sadly. At some point later that day I was In recovery and my mum was chuffed to hear surgery had gone well (I’m not sure how long I was in theatre for my mum never told me and sadly she’s no longer with us but I’m guess it was 5+ hours!).
Now 36 hours later I was up and demanding my grandparents let me out the bed so I could use the toilet! Apparently the surgeon was shocked, I wasn’t hanging about!
I ended up having to have a minor procedure in 1990 to open my arteries for better blood flow, it involved key hole surgery via my groin and I went home the next day!
After that I just rocked up every 6 months then year and eventually every two years!
I was so grateful to have heart friends throughout my life and we’ve had some great memories but that will come later in February, they deserve there own blog!
At the age of 16 it was time to say goodbye to Birmingham children’s, the first one of our group to get chucked out! I cried and I hugged the nurses and the consultant and wrote Dr Brawn a long letter telling him how thankful I was he’d done my surgery and how I promised to give life my best shot and make memories that wouldn’t have been possible without him. It broke my heart leaving but they promised I was health as a heart kid could be and that I’d be ok.
Next stop for me was Queen Elizabeth Birmingham, a short stop for me. The QE just didn’t fit me, and that was ok. After being told I needed major open heart surgery again I kicked off and demanded a second opinion and that lead me to my next stop!
The heart hospital London! I met Prof Deansfield & Fiona and prof agreed with me surgery wasn’t needed and well I refused to go back to Birmingham!
I saw prof every year or so for routine ECG & echo, I’ve had so many of these it’s not a major thing for me!
I had 2 MRI’s to check everything in more detail but I was doing ok so just kept coming and Going and living life as I’d promised Dr Brawn!
Then the heart hospital moved to the new and best in Europe St Barts in London and then Fiona left and I cried then prof retired and I cried even more! I’ve now got a new Consultant who I’ll see every 18 to 24 months unless I become ill of course.
In November 2019 I reach 30 years passed my major surgery it’s such a huge milestone!
Of course in the coming blogs I’ll tell you more about tetrology of fallot and other parts of my journey and excitingly introduce you to some of my heart friends.
Until then
Vicky xx
