Chloe Narbonne’s heart failed when she was 11, starting a near-hopeless fight for survival. A year on from groundbreaking surgery, she is alive and this is her story

“By the time I met Chloe she was dead,” André Simon says matter-of-factly. “I told her parents clearly that she didn’t really have a chance to survive. What I was proposing gave her a theoretical chance.” He pauses. “But I also said that the operation might just prolong her agony and suffering – I didn’t even know if she would survive it – and that it was OK just to let her go.”

Simon, one of the world’s leading heart and lung specialists, is recalling the conversation he had at the beginning of May last year with Fabienne Narbonne and Todd Jancey that led to him implanting an artificial heart inside their 12-year-old daughter Chloe. “It was an emotional meeting, it was tense, it was horrible. They were trying to be calm but they were extremely anxious and were holding on to each other for support. They put their last hopes in me and they prayed for a miracle.”

Twenty-four hours later, Chloe was still unconscious – but alive. She was recovering from a complex nine-hour operation, which included a medical world first, at the NHS’s Royal Brompton specialist heart and lung hospital in London.

She had just become the first child in Britain to receive an artificial heart. While others have been given a device known as a “Berlin heart”, which replicates its functions outside of the body, Chloe was the first in the UK to have had an artificial heart implanted. She remains the youngest person in Europe to have this procedure.

Many of the doctors involved in her care believed she was bound to die. As Dr Margarita Burmester, head of the hospital’s paediatric intensive unit, put it: “It’s something that was thought to be impossible. It was a hopeless case – a futile case. There’s no doubt that it was breaching protocols, wasn’t normal and was innovative – and extremely high risk. I’d never had a child without a heart before. It was completely novel, unprecedented. The odds were stacked against her.”

Almost a year later, Chloe is still here. So far the miracle has persisted. A seriously malfunctioning heart meant she had faced death on several occasions. She is one of 1,690 patients worldwide who have had an artificial heart fitted since they were invented in the 1970s. Although only 34 of those patients were under 18, Simon believes the success of Chloe’s procedure may encourage other specialists to consider the device as an option for young people.

Now 13, Chloe is back at home in Worcester and back at school. She is bubbly, thoughtful and full of smiles. Her health is pretty good though not 100%; a stroke she suffered along the way means her eyesight is slightly impaired and her right arm trembles. Not that it is stopping her enjoying gardening and learning to play golf.

Chloe is relieved and excited to be alive. She made medical history on 1 May last year with the artificial heart and again a few weeks later, when it was replaced with the donated heart that still beats inside her. It was the second time she had received a donated human heart, putting her total at four hearts in 12 years: her own, two transplants and the mechanical device Simon inserted so expertly.

Simon, 49, who moved to Britain from his native Germany in 2010, calls an artificial heart “a bridge to transplant”; it doesn’t last for ever. If a patient is lucky it buys them time until a new human heart turns up. In Chloe’s case, the bridge worked. Now, after 11 months of putting back together a life she feared she would never have, Chloe, her parents and the highly experienced NHS staff involved in her groundbreaking treatment have decided to tell her incredible story.

Facebook Twitter Pinterest Heart surgeon André Simon. Photograph: Richard Saker/The Observer

Chloe was born in September 2003. Four weeks later she was diagnosed with dilated cardiomyopathy, a serious heart condition in which the body’s most vital organ becomes enlarged and cannot pump blood efficiently around the body. It was well controlled through medication until Chloe was 11 and in her final year at primary school in Worcester in June 2015.

“I first felt unwell during my last Sats test at the end of year 6, the science one. I’d been OK up until then,” she remembers. “I became so breathless I couldn’t walk up or down the stairs without feeling completely shattered. And I became tired, coughed all the time, was sick a lot and couldn’t eat or drink without vomiting.”

Her dilated cardiomyopathy had worsened so much that doctors diagnosed her with severe heart failure. Soon after, she underwent the first of the five major operations she has had. She also went on the waiting list for a heart transplant. But, as she and her family soon discovered, that usually involves months, even years, of waiting for a donated organ to turn up, with no certainty that it will.

We owe the donors and their families eternal thanks Fabienne Narbonne

In November that year, Chloe’s condition worsened when she had a stroke. In February last year she deteriorated further, began to feel faint and have a high temperature. She was taken to Great Ormond Street hospital, this time with endocarditis, a rare and potentially fatal infection of the heart’s inner lining. It was her third serious heart problem, and she was still only 12.

By now Chloe was upgraded to the urgent transplant list, but still no replacement heart materialised.

Two months later, the Narbonnes were ecstatic when a heart finally turned up. “The transplant began at 1am and went on until about 8am. Soon after, the surgeon rang me and said that it had been a success,” says Fabienne. But at about 10pm that night Dr Tain-Yen Hsia, a consultant cardiothoracic surgeon who knew Chloe well, approached her parents. “He said, ‘I’ve got some bad news for you’,” Fabienne remembers.

Within hours Chloe’s new heart had started to fill with clots, some of which also began to form in her lungs. Doctors hooked her up to an extracorporeal membrane oxygenation (ECMO) machine to enable her replacement heart to keep working; it was their only way of keeping her alive. Her parents were distraught.

Then, on Saturday 30 April, Fabienne and Todd met Hsia again. Unbeknown to them he had rung Simon, who was at a medical conference in Washington DC. “I was at a drinks party. At first I thought he was calling as a professional courtesy to tell me about Chloe’s heart transplant. But then he said it had failed and asked if I had any ideas. I said that I would give her an artificial heart if her family and everyone else involved in her case agreed,” says Simon.

Facebook Twitter Pinterest Chloe and her family now campaign for changes to the law on organ donation. Photograph: David Levene/The Guardian

Fabienne recalls the options Hsia set out. “First, turn off the ECMO machine. Second, wait for Chloe to get a heart and lung transplant – though we knew that the shortage of organs meant that that wouldn’t turn up.”

Both options would mean their daughter’s certain death. But there was a third, remote, possibility. Hsia said Simon could take out Chloe’s transplanted heart and implant an artificial one, despite her young age. “If that worked it was a way of her staying alive until another donated heart became available,” Fabienne explains. “But they weren’t sure if it would work because they needed to clear the clots from her lungs. If they couldn’t do that they would have to turn off the ECMO and leave Chloe on the table.” Options one and two involved certain death; they chose option three, which offered some hope, however small.

Simon took an earlier flight back from Washington than planned, arriving on the Saturday. Back in London, staff from the Brompton, Harefield and Great Ormond Street hospitals and the Children’s Acute Transport Service, an NHS ambulance service for moving sick children, all prepared – over the May bank holiday – to pool their resources for the artificial heart operation. “It was quite a production,” says Burmester.

“I thought there was a 50/50 chance Chloe would still be alive when I got back,” Simon adds. “When I met her parents I said: ‘It’s very likely that the operation will not be a success and that Chloe will die’. But I also said that I would do it and that I wouldn’t be doing it if there wasn’t a chance, though that was maybe only one or even a half a per cent.”

Chloe was in good hands. Thirty health professionals from three different hospitals took part in Chloe’s operation. “The teamwork was fantastic. Chloe undoubtedly owes her life to that teamwork,” says Burmester.

Chloe remembers nothing about the operation: she had been put to sleep the day before her transplant, and was kept unconscious for 10 days. A few weeks later, Simon replaced the SynCardia 50cc total artificial heart and replaced it with a human one.

Facebook Twitter Pinterest The kind of ECMO machine that helped keep Chloe alive for the artificial heart op. Photograph: Alamy Stock Photo

Her long months on the transplant waiting list, confronting the tragic reality that many of those on it die because organs are in such short supply, have turned her and her parents into passionate advocates of change. They want England to follow the lead of Wales and switch from an “opt-in” to an “opt-out” system of organ donation. Chloe and Fabienne spoke to the Guardian for two reasons: to promote the life-saving benefits of organ donation and to thank an NHS they feel too often gets a bad press.

“We owe the donors and their families eternal thanks,” Fabienne says. “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.”

Chloe’s throat bears two visible scars: one in the middle from where she had a tracheostomy, and one to the right, from her time on the ECMO. She says: “I feel well now, 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. Sometimes I get frustrated or upset that I can’t do certain things anymore. I bump into things a lot and have to read some lines in a book a second time because a bleed on the brain has affected my peripheral vision, and I can’t do PE at school. But it’s changed my perspective on life. Now I know that I have to grasp every moment.”