Lucy's new heart - how our research has helped give Lucy her bounce back

Ten year old Lucy, from Basingstoke, is the oldest person known world-wide that has been able to undergo a transplant to receive a ‘mismatched’ heart, thanks to a new method developed by our researchers at Great Ormond Street Hospital.

Lucy's story

Lucy was born with congenital heart disease, but it wasn’t diagnosed until she was around 18 months old – she was regularly ill and her family couldn’t get to the bottom of it. 

After being diagnosed with left ventricular non-compaction cardiomyopathy – a condition that meant she had a weakened heart and put her lungs at risk – she slowly began to decline. By 4 years old, when Lucy was just about to start school, she had a seizure and was referred to Great Ormond Street Hospital and the transplant team.

Lucy’s mum, Jenny explains: “It was a massive shock to be told that she needed a transplant as she didn’t seem that ill but it was 3 ½ years we were on the list - so it was a good thing we were put on when we did.

“When Lucy started school, I would still have to take her in a pushchair, and eventually a wheelchair - she was just too tired to walk even short distances from the car park. She couldn’t do PE at school, go on trampolines or things that other kids her age were doing.

“It was very hard to live with this hanging over us. I can remember it vividly - I was looking at yet another year starting with uncertainty and worry. We started to become hopeful as we knew we were ‘next’ but then the pandemic hit. It was awful and I remember thinking ‘well it’s not going to happen now’.”

Finally, a new heart

It was a long wait in limbo but Lucy finally got a new heart in April 2020 – right in the middle of a global pandemic.

Jenny continues; “Lucy was never able to do much activity-wise, she just wanted to stay in her pyjamas and rest. Since the operation, if it was up to Lucy, I’d be signing her up to everything. She’s so eager to try everything and catch up with her big sister, Freya - She’s missed out on a normal childhood.”

“We’ve had an amazing summer – she’s been to trampoline parks she’s never been able to go to, jumping around like never before, she’s been on high wire obstacles course, days at the beach.” 

“It’s the simple things that make me well up – the other day she just ran ahead of me like any child would and she’d never done that. She’s never been able to. When I see her running and skipping ahead of me, it just makes me so emotional.” 

“The other day she said “I don’t feel left out any more” and that’s all your really want as a parent, isn’t it?”

Allowing older children to receive a transplant

The technique used to give Lucy her ‘mismatched’ heart has been developed by BHF-funded researcher Dr Richard Issitt and his team at GOSH. They’ve used a special blood filtering device - called an immunoadsorption column – during the transplant operation to reduce the amount of blood needed and allow older children to receive the transplant they desperately need.

Jenny said; “Even after 3 ½ years on the list, she was only able to get the heart because of this new research. I dread to think how much longer we would have waited without it.” 

The power to save lives

Our Medical Director, Professor Sir Nilesh Samani, said:

"Lucy’s story perfectly shows the power of our research to save and improve lives – we’re absolutely thrilled to see her bounce along with her new heart. We hope this research will give many more children the same chance."