Cardiac nurse with the biggest heart in Britain
Elliott spent 420 days in hospital waiting for a heart transplant. It would have been wretched if he hadn’t met the ...
DO YOU know a health hero? The Daily Mail, in association with Pharmacy2U, wants you to nominate special people working in the NHS. Five finalists will receive an allexpenses-paid trip to a Health Hero Awards gala in London being held in aid of NHS charities — and the winner will be given a £5,000 holiday.
As Candace Livingstone watches her four-yearold son Elliott hurtling around their garden in Hampshire, she finds it hard not to pinch herself. For this little blond bundle of energy is testimony to the wonders of modern medicine — and the dedication of the medical team who saved his life. They are all miracle workers, say Elliott’s family, but one in particular touched their hearts, becoming their very own Florence Nightingale.
Not that Rebecca Jones, 46, a nurse who looks after children waiting for a heart transplant, would agree with such a description. ‘I just want to get to know the children and families that I look after and give them the support they need,’ she says. ‘These families deserve a quality of life and I want to help give it to them. That’s what nursing is about.’
But Candace, 34, and her husband Adrian, 36, an engineer, would disagree with this modest self-assessment.
Elliott was just 14 months old when he went on the heart transplant waiting list. Twelve days after his birth, his parents were given the devastating news that their much-longed-for only child had dilated cardiomyopathy, where the walls of the heart become stretched and can’t pump blood around the body properly.
Despite medication — and then surgery to implant a pacemaker — the little boy continued to get weaker. And then one morning, in February 2015, at what they thought was a routine appointment, Adrian and Candace were shocked to be told their son urgently needed transferring to Great Ormond street Hospital to wait for a heart transplant.
HOWEVER, with no immediate donor organ available, Elliott had to be put on a Berlin Heart, also known as a ventricular assist device (VAD), a mechanical pump that works outside the body to take over pumping blood. The ‘heart’ is the size of an adult hand; it hangs outside the body, connected by tubes and wires to a piece of equipment the size of a filing cabinet.
Elliott spent a gruelling year on the Berlin Heart, and that’s when Rebecca, a VAD specialist nurse at Great Ormond street Hospital (GOsH), in London, stepped into their lives. Rebecca — Becky to her family — is the hospital’s expert on the pump.
As well as the anxiety of the Berlin Heart, the family were living with the constant fear that their little boy might not get a donor heart in time.
‘What got me through all this is Becky’s positivity,’ says Candace. ‘she made us feel like we — Elliott — were so special. Elliott would break into the biggest smile whenever she was around.’
Rebecca is the nurse who sang and danced to soothe Elliott at distressing moments, such as when his dressings were changed, who would stay after shifts to spend time with the family, and who even learnt a special form of sign language so she could communicate with him after he stopped speaking following the trauma of yet another operation.
It was also Rebecca who helped organise a desperately needed family day out — despite the challenges of the equipment hooked to the little boy.
For as the days melted into weeks, then months, it was clear that Elliott’s wait for a donor heart would be a protracted one — he spent 420 days in hospital before one was found (previously the longest a child had spent on the device at GOsH was 280 days).
Elliott’s first anniversary on the Berlin Heart could have been a depressing milestone, but knowing how much he loved London buses and trains, Rebecca arranged for him to be taken to the London Transport Museum — no easy feat.
THE trip was planned with military precision — including ensuring there were enough plug points to recharge the Berlin Heart. The family were to be accompanied by Rebecca and another nurse and doctor, who would push the heavy machine.
His family were initially apprehensive. ‘On the one hand I ached for us to do something “normal” as a family,’ says Candace. ‘ On the other, leaving the security of the hospital terrified me.’
‘But Becky kept saying to me: “Don’t worry about this, relax and enjoy being Elliott’s mum.” And I’m so glad we did it, it was so wonderful — even now I can’t think about it without filling up. Thanks to Becky, for a couple of hours we had our life back.’
It’s not a surprise to learn Rebecca’s the kind of nurse who rarely leaves her shift on time and who comes to the wards in her time off to celebrate her patients’ birthdays. ‘My own children [aged 16, 13 and nine] joke that I love my patients more than them!’ Rebecca says with a laugh.
she joined GOsH in 1999, moving to the VAD nursing team five years ago. As well as caring for patients, she teaches teams of nurses — and parents — about the devices.
Furkan Osman and his wife Uzma know what a difference Rebecca’s dedication can mean. Earlier this year, their 13-year-old daughter Hana was diagnosed with cardiomyopathy.
‘It came like a bolt out of the blue,’ says Furkan, 48, from Croydon. ‘ Words can’t describe the terrible shock at being told your little girl has a potentially fatal heart condition.’
Hana was transferred to GOsH, and while she waits for a heart transplant, she’s been fitted with a device similar to the Berlin Heart, but smaller. since she has been discharged, her parents and GP have had specialist training in the device, provided by Rebecca, who went to their home, the GP practice and even to Hana’s school to train her teachers.
‘Even when Becky was on leave, she refused to miss an appointment so that all the training took place,’ says Furkan.
‘ When you’re looking for a miracle, you need people who can reassure you. Becky has been by our side the entire time.’
Elliott Livingstone finally underwent a heart transplant in April 2016. But Becky remains a constant presence in the Livingstones’ lives.
‘When we go for an outpatient appointment, Becky makes a point of coming to see Elliott,’ says Candace. ‘It’s like seeing a lovely old friend. I don’t think I ever saw Becky without a smile! she is so energetic and positive.
‘ Of course, if it wasn’t for medical research, Elliott wouldn’t be here. But you can’t invent people like Becky, they are just so special.’