Sunlight streaming into the garden, I watched my daughter Skye, as she sat with her friends on her first birthday. It was July 2021 and although we were having a lovely day, something was niggling me. After the party finished and everyone had gone home, I spoke with my wife Susie, then 34. ‘Did you notice how tiny Skye looked compared to the other babies today?’ I asked. Susie nodded, looking worried. We’d also noticed that Skye couldn’t crawl or walk like her peers. Instead, she just shuffled around on her bum. Although we were aware that babies develop at different rates, we’d been worried about our daughter for a while.
Skye was born perfectly healthy and we were so happy to bring her home. But just a few weeks later, she had started crying a lot, sweating in her sleep and suffering frequent bouts of sickness. Doctors reassured us that nothing was wrong - that she was just experiencing normal childhood illnesses. And even now, at her party, while it was alarming to see how tiny Skye was compared to her peers, Susie and I reasoned that the doctors must be right - our little girl was fine.
Only, three months after Skye’s first birthday, she developed a wheezy chest.
Eventually, after a lot of back and forth over the course of a few months, Skye was sent for tests by a paediatrician who picked up a heart murmur. At the hospital, an ECG and X-Ray revealed an enlarged heart. Terrified, Susie and I tried our best to stay calm while Skye, then 19 months, was transferred to Evelina Children’s Hospital in London. The following morning, a consultant came to see us while Skye played with her toys.
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