My baby’s tumor was so large that doctors recommended terminating my pregnancy, but look at her four years later

Baby Amelia Kan wasn’t even born when doctors discovered she had a tumor that would grow to the size of a lemon, crushing her tiny heart by the time she was born.

Her mother, Hui-Zhi, 36, from Borough Green, Kent, was told that Amelia was likely to die during pregnancy or at birth, and that an abortion might be the best course of action.

But thanks to a groundbreaking drug treatment – ​​and two open-heart surgeries – Amelia is now four and happily preparing to start school in the fall.

“Looking back on my pregnancy, it seems impossible that at this point we are getting ready for Amelia to go to school,” said Hui-Zhi, an administrator at an electrical goods company where her husband, Chi Wing Kan , 36, also works as a sales manager.

‘Every pregnancy scan we had, the tumors kept growing and every update got worse. It was horrible. But she was moving and squirming all the time. She was fighting, and I knew we had to fight for her.

‘It was such a difficult time. I couldn’t allow myself to imagine us together as a family of three because it seemed so unlikely that it would happen.”

In 2019, Hui-Zhi underwent her routine 12-week check-up. However, doctors discovered a small dot on the left side of her baby’s heart, and Hui-Zhi was asked to return for another check-up a month later.

This second scan confirmed the worst: there was a fast-growing tumor in Amelia’s heart.

Doctors explained that Amelia had a rare genetic condition called tuberous sclerosis complex, which causes mainly non-cancerous tumors to grow in different parts of the body.

In Britain, around ten children are born with it every month, and the disease can affect them in very different ways. Some may not even realize they have it, while for others, like Amelia, it can be life-threatening.

Her lemon-sized tumor was the largest of several located around and within the muscular walls of her heart, crushing the chambers that fill with blood to be pumped around the body.

The tumors were also pressing on her lungs, raising fears that they would not be able to expand so she could breathe.

Aaron Bell, pediatric cardiologist at Evelina London, a specialist children’s hospital part of Guy’s and St Thomas’ NHS Foundation Trust, says many children born with similar tumors due to the condition do not survive.

“Amelia’s prospects were very bleak,” he says. ‘The tumor completely dwarfed her heart – she had some of the largest tumors we had ever seen in this condition.’

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

She was quickly started on an anti-tumor drug called sirolimus, to quickly shrink the tumors so her heart and lungs had room to work.

Although the drug has been given to adults for some time, Dr Bell says Amelia was one of the first newborns with heart problems to be given it in Britain.

“We really had no other choice,” he says. “We read some research about its use abroad and decided to try it.”

The tumors responded well to the treatment and virtually disappeared after about eight weeks of using the drug. By May, Amelia was well enough to go home.

However, within weeks there was more worrying news.

“Normally, the tumors 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 heart was starting to grow again.”

In October, Amelia stopped taking her milk and food, and then started getting sick. “We took her to our local emergency room and were told she had a disease virus.

“But I could just tell it was more than that, and when they finally did an X-ray of her chest, they could see something was wrong with her heart.”

A specialist team arrived by blue light ambulance to return Amelia, who was rapidly deteriorating, to the Evelina.

“The doctor on this team kept preparing us for the worst,” Hui-Zhi said. “She was on the brink of death.”

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

When this repair didn’t work, her life was once again at risk.

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

Amelia needed a third surgery soon after to install a pacemaker.

The family returned home in early 2022, but during a check-up in March, Amelia’s heart again struggled to work properly. Doctors feared she might need a heart transplant, but heart medication has since improved its function.

Last year, a rare type of tumor was discovered on her kidney, requiring further surgery to remove part of the organ.

Amelia now tires more quickly due to her weakened heart and takes four heart medications a day. Although she remains under regular supervision by doctors, she is a happy child who loves nothing more than playing with dolls, her toy kitchen and dressing up as a princess.

“Although there is uncertainty, we hope that her future is bright and that we live for the time being,” Hui-Zhi said. ‘She enjoys all the things other children her age do and loves going to nursery school.

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