Simon

Simon from Scunthorpe was born in the the early 80’s with congenital heart disease. He was diagnosed with a heart murmur and a hole in his heart when he was six.

But it wasn’t until a few years later, after developing an infection, that Simon, his family and doctors truly knew the extent of his heart defects…

Simon, now in his forties wanted to share his story to give hope to young people living with heart disease. He said:

“At six, I was told I had a heart murmur. It was sort of explained to me, but being six, I didn’t really know what it meant. The part that stuck was, “You’ve got a hole in your heart!”

“At age eleven, in the summer of 1993, I had a bike accident while riding around the yard. I hit the house wall because my brother had taken the front brake off (I don’t blame him) and I lost a few teeth.

“Sometime soon after the accident, I found myself becoming very cold and shivering uncontrollably, yet I was red-hot to the touch and sweating. These episodes would last maybe 15-30 minutes, and afterward, I was back to my normal high-energy self. Over the next two days, the coldness (or, as Mum started to call it, a ‘turn’) became more frequent. This was on a weekend in June.

After life-saving treatment at Killingbeck Hospital (where the specialist heart centre for the region used to be) Simon and his mum started fundraising for Children’s Heart Surgery Fund. 

“I was taken to Scunthorpe Hospital, and I stayed on the Disney ward. The doctor was doing what doctors do—tests and such. I remember having a turn and them trying to take the blankets off me to do some tests. I was holding onto the blankets because they kept me warm as I was shivering, but with a super high temperature. I remember being told I had glandular fever.

“The next day or the day after, I think the treatments (a drip) were not working for me as I kept having turns. I remember they wanted to change my bedding while I was having a turn. I remember being curled up crying but making no sounds, and the housekeeping people insisted I get out of bed.

“I later found out that Mum was saying to the doctors, “Is it his heart? Contact Leeds.” and the doctors dismissed her.

“I remember the cleaner on the ward talking to my Mum, and saying, “Just ring Leeds yourself. There’s a payphone.” She did, and a few hours later, I was in an ambulance headed to Leeds. I was kind of weak at this point, with no energy to eat or even go to the toilet. I had wet myself a few times because of this. I also remember pulling the drip out of my hand at some point and getting told off.

“As we were getting to Killingbeck Hospital in Leeds, I started having a ‘turn’. I remember sleeping and being taken out of the ambulance. I woke up being wheeled into this strange place. It had roofed footpaths. I kept asking where we were. We got to the ward, and I had all these people around me.

“I really don’t remember the next week or so, but I do remember my mum saying, “It’s endocarditis” (little bugs eating my heart).

“I would need an operation to replace my aortic valve and repair my mitral valve. A few things I remember while in Leeds about my treatment…

• Having a drip fed into my neck to drip into my heart and thinking it was cool — I looked like Predator from the films.
• A feeding tube in my nose. I had a coughing fit, causing it to come out of my mouth, and I pulled it out – to the horror of the nurse at the desk!
• A time a nurse was having issues with one of my drips, and I set it up for her.
• Going for echo’s and asking if there was an alien in there.

• I remember Dr. Briggs coming to see me and asking if Mum was around. She was out shopping, and he said to get him when she was back. She came back, and he basically said, “We are going to operate on you,” and I raised my fist, saying, “Yes!” because it meant I would be out of there.
• They did the operation on Bank Holiday Monday in August. All was well, though I had a few issues afterward with a fast heart rate.
• I was very ill the few days before the operation and later found out from my brother Paul that it was not very likely that I would pull through it.

“While in intensive care waking up, I remember seeing a tap, and all I wanted was a drink. Apparently, when I woke, Mum said I quoted ‘Johnny 5’ from the film ‘Short Circuit’, saying, ‘Simon is alive.’ I don’t remember that, but it sounds like something I would do.

“I was discharged from the hospital on September 28th, the day after my birthday. In total, I was in Leeds Killingbeck for three months and a day.

“I’m sharing my story because I want kids to know that you can have a ‘normal life’ and having heart surgery doesn’t stop you doing things. Keep active, eat well, know your limits.”

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