Baby Amelia Kan had not even been born when doctors spotted she had a tumour that would grow to the size of a lemon – crushing her tiny heart by the time she came into the world.
Her mother, Hui-Zhi, 36, from Borough Green, Kent, was told that Amelia would likely die during pregnancy or at birth, and a termination may be the best course of action.
HOW SHE SURVIVED
However, thanks to a pioneering drug treatment – and two open heart surgeries – Amelia is now four and happily preparing to start school in the autumn.
MOTHER RECOUNTED HER FEARS
‘When I look back to my pregnancy it seems impossible that we are at this point, getting ready for Amelia to start school,’ says Hui-Zhi, an administrator for an electrical goods company, where her husband, Chi Wing Kan, 36, also works as a sales manager.
‘Every pregnancy scan we had, the tumours kept growing and every update got worse. It was horrible. But she was moving and wriggling all the time. She was fighting, and I knew we had to fight for her.
‘It was such a hard time – I couldn’t let myself picture us together as a family of three as it seemed so unlikely to happen.’
DIFFERENT SCANS … DIFFERENT HEARTBREAKS
In 2019, Hui-Zhi had her routine 12-week check. However, doctors spotted a tiny dot on the left-hand side of her baby’s heart, and Hui-Zhi was asked to come back for another check a month later.
This second scan confirmed the worst – there was a rapidly growing tumour in Amelia’s heart.
Doctors explained that Amelia had a rare genetic condition called tuberous sclerosis complex, which causes mainly non-cancerous tumours to grow in different parts of the body.
In the UK about ten children a month are born with it, and it can affect them in very different ways. Some may not realise they even have it, while for others, like Amelia, it can be life-threatening.
