Baby born with tumour bigger than heart defies the odds

A family has thanked clinicians at Evelina London Children's Hospital for saving their daughter's life after she was born with a tumour the size of a lemon attached to her heart.

Amelia Kan has a rare genetic condition called tuberous sclerosis complex which causes non-cancerous tumours to grow in different parts of her body.

Now 4 years old, mum Weeta Kan describes her as a "fighter who is my hero".

Amelia's tumour was first identified during mum Weeta's routine antenatal scan, when a sonographer noticed a dot on the left side of Amelia's heart and referred her for further investigations at Harris Birthright Centre at King's College Hospital.

The dot on the scan was diagnosed as a tumour next to Amelia's heart, and so Weeta had antenatal scans every 6 to 8 weeks at King's College Hospital to monitor her growth.

Weeta, from Bromley in Kent, said: "It became routine during my pregnancy that we had scans on a Tuesday and blood tests on a Friday. Sadly, we kept being told the tumours were multiplying and growing, it was just bad news every time.

As the scans continued we realised how serious Amelia's condition was. She had so many tumours, one was squashing her lungs and another on the mitral valve in her heart. We decided on the name Amelia as it meant fighter – and she's lived up to her name.

Weeta went into labour prematurely at 36 weeks and was transferred from King's College Hospital to the maternity department at St Thomas' Hospital for specialist care.

When Amelia was born she had multiple tumours throughout her heart, including the large tumour next to her heart. Amelia's heart was the size of a walnut compared to the large tumour which was the size of a lemon. She was rushed to Evelina London's neonatal intensive care unit for urgent treatment, where she spent several months receiving chemotherapy to reduce the size of the tumours.

The effects of the tumours and chemotherapy damaged a valve in Amelia's heart, resulting in her needing 3 open heart surgeries when she was 1 year old. The first and second to repair and then replace the damaged valve, and the third to fit a pacemaker.

Aaron Bell, paediatric cardiologist and head of service at Evelina London Children's Hospital, said:

Tuberous sclerosis complex isn't common, we typically see around 6 children a year with it.

 

However, Amelia had some of the biggest tumours that we’ve ever seen, and there was a real concern that she wouldn't survive being born as some of the tumours were compressing her lungs but Amelia surprised us from day one.

As Amelia's condition means that she's prone to tumours growing anywhere in her body, she has been cared for by a number of different teams at Evelina London including the neonatal team, cardiology team, genetics, paediatric intensive care, kidney and bladder services.

Weeta continued:

Amelia is now 4 years old and she's grown into a crazy little monkey who doesn't listen! She's my amazing little hero who has a very strong character. All of the teams who have cared for Amelia are amazing. It's because of Evelina London that she's alive.

"In particular Sujeev Mathur from the cardiology team is incredible, we've had to make lots of difficult decisions but we agree with everything he has said. Pankaj Mistra from the urology team treated Amelia like a VIP from day one. Trying to make friends, and put her at ease. We are so lucky to have them on Amelia's team, without them she wouldn't be here."

Last year, Amelia developed a rare kidney cancer known as renal cell carcinoma, after a tumour was found in her kidney. In August she underwent an operation to remove the tumour and part of her kidney, in a procedure known as a partial nephrectomy. The decision was made to keep some of her kidney in case another tumour developed in the future.

Pankaj Mistra, paediatric consultant urologist at Evelina London, said: "Amelia's operation was a huge team effort. After discussing her treatment with the clinical team at The Royal Marsden, 2 oncology surgeons from St George's Hospital joined us for the procedure. In total there were 8 different specialist teams from across Evelina London who inputted into her operation, along with the 2 oncology surgeons.

Her tumour in her kidney was rare in small children. However, the operation was a success and only part of her kidney containing the tumour was removed. Amelia continues to make great progress and we're pleased to see how well she is doing.

Amelia is getting ready to start school in the Autumn, and will continue to be monitored under the different specialist teams across Evelina London as she grows up.