A 13-year-old girl from Worcester is the first child in Britain to have received an artificial heart, the Guardian can reveal, after doctors decided it was the only way to save her life.
Chloe Narbonne had the device installed in a complex nine-hour operation that involved 30 NHS staff at the Royal Brompton, a specialist heart and lung hospital in London. The artificial heart kept the then 12-year-old girl alive until a human heart became available a few weeks later.
While others have had a device known as a “Berlin heart”, which replicates its functions outside of the body, Chloe is the youngest person in Europe to have had an artificial heart implanted. With her fourth heart now beating in her chest almost a year on, she told the Guardian: “I feel well, like my normal self, but not quite my normal self, not after what I’ve been through. I guess the artificial heart was my lifesaver; it’s what kept me alive until I got another heart. What I’ve been through is life-changing.”
Chloe was diagnosed with dilated cardiomyopathy when she was four weeks old. Her heart failed when she was 11 and still at primary school. She then had a stroke while waiting for a new heart, and when that first transplant failed to work, she was left close to death.
At that point, medics decided an artificial heart was the only option to keep her alive until another heart could be transplanted. André Simon, the director of heart and lung transplantation at the Royal Brompton and Harefield specialist hospitals, flew back early from a conference in the US to operate on Chloe last May.
What doctors said was an “extremely risky” surgery involved two medical firsts. Chloe was the first person in the world to be transferred from one hospital to another with her chest open and while on a life-saving extracorporeal membrane oxygenation machine, which delivers oxygen to a patient from outside the body. And Simon had to rebuild her heart’s atrium, or upper chamber, which had been removed during the failed transplant days earlier. A few weeks later, after her health stabilised on the artificial heart, she received the new heart.
Chloe’s mother, Fabienne Narbonne, said: “How they saved Chloe should be recognised for what it is – a miracle. Without the artificial heart she would be dead. It kept her alive for those crucial few weeks. By the time she got it she had run out of options.”
Simon, who has carried out all 13 artificial heart surgeries that have occurred in London hospitals, believes the success of Chloe’s operation should prompt other specialists to consider the devices for more children.
Chloe’s long waits for a transplanted heart have made her and her parents, Fabienne and Todd, passionate advocates for a change in the law on organ donation. Chronic shortages of donated hearts, lungs, livers and kidneys result in thousands of people a year dying while on the transplant waiting list. The family want the rest of the UK to follow the example of Wales, which in December 2015 switched from the opt-in system of organ donation to one of opt out, where people have to specifically refuse consent for organ retrieval if they die.
Fabienne Narbonne said: “We owe eternal thanks to the donors and their families, without whom none of this would be possible as without donors there is no point being on a waiting list, however long you have to wait. We cannot thank them enough for offering Chloe a second chance at life, no words can explain how it feels and we have nothing but respect and gratitude for their gift of life.”
Only 1,690 people in the world have ever received an artificial heart. Of those, 34 were under 18. The oldest person in the UK to receive one was 62. Chloe is the third youngest in the world, after a nine-year-old and an 11-year-old in the US.
“Chloe is an example of a patient who would have been out of options without the 50cc total artificial heart,” said Michael Garippa, the president of SynCardia, the American firm which makes the devices. “It was the only device that could save her.”