My child’s tumour was so massive docs suggested ending my being pregnant

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.

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.

‘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.’

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.

Her lemon-sized tumour was the largest of a number that was clustered around and within the muscular walls of her heart, crushing the chambers which fill with blood to be pumped around the body.

The tumours were also pressing on her lungs, raising fears they wouldn’t be able to expand to allow her to breathe.

Aaron Bell, consultant paediatric cardiologist at Evelina London, a specialist children’s hospital that is part of Guy’s and St Thomas’ NHS Foundation Trust, says many children born with similar tumours from the condition do not survive.

‘Amelia’s outlook was very bleak,’ he says. ‘The tumour completely dwarfed her heart – she had some of the biggest tumours we had seen from this condition.’

Despite these warnings, Hui-Zhi was sure she wanted to go through with the pregnancy. So when Amelia was born in November 2020 at 36 weeks by a caesarean section at St Thomas’ Hospital, she was rushed to the neonatal intensive care unit and put on a breathing machine.

She was swiftly started on an anti-tumour drug called sirolimus, in order to rapidly shrink the tumours so that her heart and lungs had space to work.

While the medicine has been given to adults for some time, Dr Bell says that Amelia was one of the first newborns with heart problems to receive it in the UK.

‘We really had no other options,’ he says. ‘We read some research about it being used overseas, and decided to try it.’

The tumours responded well to the treatment, virtually disappearing after about eight weeks of the drug. By May, Amelia was well enough to go home.

However, within weeks, there was more worrying news.

‘Normally the tumours grow while the baby is in the womb, and then shrink when the baby is born,’ says Hui-Zhi. ‘But by the summer, we were told that Amelia’s were starting to regrow in her heart.’

In October, Amelia went off her milk and food, and then started to be sick. ‘We took her to our local A&E and were told she had a sickness bug. 

‘But I could just tell it was more than that, and when they finally X-rayed her chest they could see something was wrong with her heart.’

A specialist team came by blue-light ambulance to transport Amelia, who was deteriorating rapidly, back to the Evelina. 

‘The doctor on this team kept preparing us for the worst,’ Hui-Zhi says. ‘She was on the brink of death.’

Cardiologists discovered the regrowing tumours had damaged Amelia’s heart. She was put into a medically induced coma, started chemotherapy to shrink the tumours again, and had her first open heart surgery in November 2020 to try to repair the damage.

When this repair didn’t work, again her life hung in the balance.

‘We saw her surgeon before her second surgery, and he said she had a one-in-three chance of not surviving the operation,’ adds Hui-Zhi. ‘But we knew it was her best chance.’

Amelia then needed a third operation shortly afterwards to install a pacemaker.

The family went home early in 2022, but during a check-up that March Amelia’s heart was again struggling to work as well as it should. Doctors feared she may need a heart transplant, but cardiac medication has since improved how it is working.

Last year, a rare type of tumour was discovered on her kidney that involved further surgery to remove a section of the organ.

Amelia now tires more quickly due to her weakened heart, and takes four cardiac drugs a day. However, while remaining under regular monitoring from doctors, she is a happy child who loves nothing more than playing with dolls, her toy kitchen and dressing up as a princess.

‘While there is uncertainty, we’re hoping that her future is bright and we are living for now,’ Hui-Zhi says. ‘She enjoys all the things that other children her age do, and loves going to pre-school.

‘She’s a crazy little monkey who doesn’t always like to listen, but we know her strong character has helped see her through so much. She is my hero. We named her Amelia as it means warrior, and she is such a fighter.’