Emily Reynold's blog

Age 21

February 2024

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During her 20-week scan, my mum found out that I had hypoplastic left heart syndrome, which is when the left ventricle in the heart doesn't develop properly in the womb. Without surgery, I wouldn't have lived for more than a few days after I was born.

When I was 3 days old I had my first surgery to correct the condition. I then went on to have 2 more surgeries, one at 18 months old and 3 years old.

As soon as my mum was told about my condition, she decided she was going to make the most of whatever time I had. My parents brought me up to be robust and very independent from an early age. We went on really fun family holidays all over the world, I went to a lot of concerts and I went to international summer camps.

When I was 13, I started to feel unwell. I had supraventricular tachycardia (SVT), which is when your heart suddenly beats much faster than normal. My heart would race at 200 beats per minute, I would have heart palpitations and I'd get dizzy. The first time this happened I was at my grandparents' house. My granny told me to lie down for a bit and then I felt fine. I didn't think anything of it until the nurse at my school noticed my symptoms and told me that it was serious. She called an ambulance for me and I was rushed to the local hospital where they got my heart rate back to normal.

I needed to have open-heart surgery to replace one of the tricuspid valves in my heart and install a pacemaker.

After this, I had to come to Evelina London from where I lived in Kent every 6 to 8 months.

I didn't mind coming to Evelina London so often with my dad as we'd normally make a nice day of it. And my school were really good at making sure I didn't miss any school work. The hardest part was keeping up with my friendships. I had issues with my oxygen levels dropping which meant I'd have to be admitted to hospital and I missed a lot of school. Friendships move so quickly at that age, and I'd find when I came back to school that there was new gossip and new friendship groups and I'd not be in them.

The teams who cared for me were always brilliant. They were really good at explaining what was going on in my body, which really helped because I'd big things up in my head. There were a few nurses who would remember me when I’d stay on the wards, and that sense of familiarity in hospital was really nice.

Unfortunately, I had issues with my pacemaker. When I was 15 my pacemaker turned itself off while I was in school. I collapsed, but by the time I hit the floor it had turned itself back on again. I just got up off the floor and brushed myself off. I thought I had tripped. Luckily, a teacher saw me fall and thought something might be wrong, so they took me to the school's medical centre. They checked me over and couldn't see what was wrong. Everything seemed fine. When they found out my pacemaker had failed I was rushed all the way to Evelina London in an ambulance from Kent.

They changed my pacemaker and leads at Evelina London. My mum started to get nervous when I was recovering on Savannah ward a few days afterwards. I was on the phone with her, falling in and out of consciousness and talking complete nonsense. She called up the nurses on the ward and told them to check on me urgently. It turned out I had internal bleeding, so I needed another operation to drain the blood and stop the bleeding. Because my blood pressure was so low, putting me under anaesthetic for the operation could have caused me to have a heart attack. My dad had to make that really difficult decision, but it was a no-brainer as it was the choice between certain death, or the chance of life.

Luckily everything went well, but the nurses had to watch me like a hawk when I was transferred to the Paediatruc Intensive Care Unit (PICU). Despite being physically very unwell, I was chatting away, watching films and sharing my sweets with them. They weren't used to having children in the PICU who are well enough to have conversations. They'd always try and find things to keep me entertained.

This all happened the year before I took my GCSEs. Despite the surgery and long stay in hospital, I managed to get 8 GCSEs and went on to do 3 A-levels.

Now I've graduated from the University of Roehampton with a bachelor's degree in primary education and I'm completing a postgraduate certificate in education (PGCE) at the University of Derby.

I always knew I wanted to work with children. When I got to my A-levels I made a choice between becoming a nurse, a midwife or a teacher. In the end, I thought my health might prevent me from becoming a nurse, as the long shifts probably wouldn't agree with me and being unwell on the wards is not ideal. Ever since I was little I would teach my imaginary friends, my teddies, and anyone else who would listen to me. I knew teaching was what I should do.

On my graduation day, I visited Professor David Anderson (the consultant heart surgeon who performed my first 4 surgeries) to thank him for his care, as I didn't get the chance to when I was a child.

I wanted to make my special day even more special by visiting the team who cared for me for so long. He and his team are the only reason I'm here now, and I wanted to show him what I've gone on to achieve with the life he's given me.

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