Now heart problems are something I’ve grown up with. But they were my dad’s, not mine. When he was 39 and I was 8, he had his first heart attack. This changed our family in so many ways, but we supported each other and learnt to live with Dad’s ever changing heart issues. In 2000 he had to have major heart surgery – a quadruple bypass and an aortic valve replacement. This was life-saving surgery, and it took a while for him to recover from it. But he was able to return to work once fit enough and is still with us today (with various other ailments picked up along the way).
All grown up, but still needed Mum
So having my mum come to the appointment was everything. She knew the language of doctors – especially heart ones. She knew, out of my siblings, I am not the emotionally strong one. I wear my heart on my sleeve and struggle with containing my emotions (whether happy or sad, angry or confused – there is always an element of tears 🤣🤣🤣). She knew I would need her.
What I didn’t know is that she knew more than me as to what was about to happen.
We turned up at Glenfield hospital, and as we got out of the car, she reached into the back and grabbed an envelope. I asked her what it was, and she replied that I only needed to know if it was relevant. My mind was already racing, talk about making it race more! We sat down in front of my cardiologist, and he started to explain what they had discovered.
My right lung was not connected to my heart properly and was causing the blood to flow to the wrong side of my heart. My right lung was not inflated and hadn’t been since birth, so it wasn’t producing oxygenated blood. And my heart was engorged on one side. This caused the heart to look like it had a line down the middle of it – like a Scimitar sword.
I had been born with Scimitar syndrome.
I should never have reached adulthood without it being picked up.
I had 70% oxygen supply in my blood.
I could have dropped dead at any time.
If not repaired, I would be blue by the time I was 40 due to lack of oxygen in my blood.
What I didn’t know
As my world collapsed, my mum stepped in with her envelope. She handed it to the doctor and asked him to explain the letter inside.
The letter was from Brighton hospital, where I had been born, dated nine weeks after I was born, stating I was a perfectly healthy baby and there was nothing wrong with my heart.
I was floored!! I knew the story of my birth – I was born blue and my dad wondered if I was his as I looked like an alien. But what I didn’t know was that at birth they had done all sorts of tests, as they thought all my organs were back to front, and one junior doctor suggested I might have a heart problem. After a scan, which was new then, and x-rays the Consultant sent the letter, saying I was fine, and there was no doubt my heart and lungs would get stronger as I grew older. My mum had kept that letter, never knowing if she’d ever need it.
The Consultant informed us that in 1980 they didn’t have the medical science to understand the condition. Now 20 years on, they see lots of babies with this condition as it’s picked up early in the womb, and in some young children that have slipped through the net – but they hadn’t seen it in an adult.
He explained that when you hear in the news of children or young adults dying suddenly on the games field, it was usually because of an undiagnosed congenital heart disorder. Most people with my undiagnosed condition don’t reach adulthood.
I would need to have major heart surgery as soon as possible, with lots of tests and procedures to decide on what they wanted to do in the surgery. I left that room and collapsed. My world had just been shattered. I was 21 at the time and had just been told I had a heart birth defect that needed to be corrected straight away.
Getting the support I needed
Thankfully as we walked out, we were scooped up by a GUCH nurse – a nurse just for Grown Ups with Congenital Heart defects. She came with me to all my tests and explained what would happen in a way that I could deal with.
The date was set for 21st June. But I needed an angiogram as they couldn’t see my heart properly from the echocardiograms, and they didn’t know what repair they had to do till they could get a better image of the heart. The angiogram involved a catheter being put in so they could get a camera into my heart through a vein in my groin.
The date for that was the day before the major surgery.