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 when she entered the world.
Her mother, Hui-Zhi, 36, from Borough Green, Kent, was told that Amelia would likely die during pregnancy or at birth, and that an abortion might be the best course of action.
However, thanks to pioneering drug treatment (and two open-heart surgeries), Amelia is now four years old and happily preparing to start school in the fall.
“When I look back on my pregnancy, it seems impossible that we are right now, preparing for Amelia to start school,” says Hui-Zhi, a manager 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 each update got worse. It was horrible. But she moved and squirmed all the time. She was fighting and I knew we had to fight for her.
Amelia Kan (pictured today at age four) wasn’t even born when doctors discovered she had a tumor that would grow to the size of a lemon.
“It was a very difficult time; I couldn’t allow myself to imagine us together as a family of three as it seemed so unlikely to happen.”
In 2019, Hui-Zhi underwent her routine 12-week checkup. However, doctors detected a small spot on the left side of her baby’s heart and asked Hui-Zhi to return for another checkup a month later.
This second scan confirmed the worst: there was a rapidly 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 the United Kingdom, around ten children are born with it a month and it 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.
His lemon-sized tumor was the largest of many that clustered around and within the muscular walls of his heart, crushing the chambers that fill with blood to be pumped throughout his body.
The tumors were also pressing on his lungs, raising concerns that they would not be able to expand to allow him to breathe.
Aaron Bell, consultant pediatric cardiologist at Evelina London, a specialist children’s hospital which is 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 outlook was very bleak,” he says. “The tumor completely dwarfed her heart; she had some of the largest tumors we had seen in this condition.”
Despite these warnings, Hui-Zhi was sure she wanted to go ahead with the pregnancy. So when Amelia was born in November 2020 at 36 weeks by caesarean section at St Thomas’ Hospital, she was rushed to the neonatal intensive care unit and put on a ventilator.
They quickly started him on an anti-tumor drug called sirolimus, in order to quickly shrink the tumors so that his heart and lungs had room to work.
While the drug has been given to adults for some time, Dr Bell says Amelia was one of the first newborns with heart problems to receive it in the UK.
Baby Amelia and her mother Hui-Zhi receive treatment in a hospital
“We didn’t really have any other options,” he says. “We read some research about its use abroad and decided to try it.”
The tumors responded well to treatment and virtually disappeared after about eight weeks of treatment. By May, Amelia was well enough to return home.
However, within a few weeks, there was more worrying news.
“Normally, tumors grow while the baby is in the womb and then shrink when the baby is born,” says Hui-Zhi. “But in the summer we were told that Amelia’s pain was beginning to grow again in her heart.”
In October, Amelia stopped drinking milk and food and then began to get sick. ‘We took her to our local emergency center and were told she had an illness.
“But I realized it was more than that, and when they finally did an x-ray of his chest, they could see something was wrong with his heart.”
A team of specialists arrived in a blue-light ambulance to transport Amelia, who was rapidly deteriorating, back to the Evelina.
“The doctor on this team kept preparing us for the worst,” Hui-Zhi says. “He was on the verge of death.”
Cardiologists discovered that the regrowing tumors had damaged Amelia’s heart. She was put in an induced coma, she started chemotherapy to shrink the tumors again and she underwent her first open heart surgery in November 2020 to try to repair the damage.
When this repair didn’t work, his life was once again at stake.
“We visited his surgeon before his second surgery and he told us that he had a one in three chance of not surviving the operation,” adds Hui-Zhi. “But we knew it was his best chance.”
Shortly after, Amelia needed a third operation to have a pacemaker inserted.
The family returned home in early 2022, but during a checkup in March, Amelia’s heart once again struggled to work as well as it should. Doctors feared she might need a heart transplant, but heart medication has since improved her function.
Last year, a rare type of tumor was discovered in his kidney that required additional surgery to remove a section of the organ.
Amelia was born in November 2020 at 36 weeks by caesarean section at St Thomas’ Hospital (pictured)
Amelia now tires more quickly due to her weakened heart and takes four heart medications a day. However, although she remains under regular medical monitoring, she is a happy little girl who loves nothing more than playing with dolls, her play kitchen, and dressing up as a princess.
“Although there is uncertainty, we hope its future is bright and we are living in the moment,” says Hui-Zhi. ‘He likes all the things that other children his age do and he loves going to preschool.
“She’s a crazy little monkey who doesn’t always like to listen, but we know that her strong character has helped her overcome many things. She is my hero. We call her Amelia because it means warrior, and she is a great fighter.”