The Story Of A Heart

by Rachel Clarke (Abacus £22, 320pp)

Nine-year-old Keira Ball set off for the beach with her mother, Loanna, and her brother, Bradley, on a hot summer’s day in 2017.

To get to their destination, and the promised treat of fish and chips, the family had to drive along a section of the North Devon Link Road, a notorious accident blackspot.

Travelling along the same road was Nick Miller who was just days away from becoming a fully registered medical practitioner.

When he saw smoke rising from a collision ahead of him, he weaved his motorbike through the traffic to see if he could help.

Loanna’s car and another vehicle had ­collided head-on. Although seriously injured, she and Bradley were able to speak, but Keira hung limply from her seatbelt, her neck at a strange angle, and wasn’t responding.

Dr Miller carried Keira to the side of the road and started CPR, which he continued for 30 minutes until the ambulance arrived. Keira was taken to a local hospital while her mother and brother were airlifted to a trauma centre in Bristol.

Keira Ball died after the car she was in was involved in a head-on crash with another vehicle

The police frantically tried to contact Keira’s father Joe, but he was out on a motorbike ride. When he stopped for a coffee and finally answered his phone, he refused to wait for the police to come and pick him up and instead rushed to Bristol to be with his wife and son, reasoning that if Keira was being taken to a local hospital, her injuries couldn’t be that bad.

But that night, when Keira was moved to Bristol, Joe was told that his daughter was not going to survive.

Joe and Keira’s two elder ­sisters knew that she was brain dead, yet ‘she looked so ­perfect, not broken at all’. Remarkably, Katelyn, 11, was the first person to ask about organ donation, urging her father to donate ­Keira’s organs because it was what she would have wanted. Joe swiftly agreed, as did Keira’s mother.

Three hundred miles away at the Freeman Hospital in Newcastle, nine-year-old Max Johnson was being kept alive by a mechanical pump which was doing the job of his heart in driving the blood round his body.

Max had been a boisterous, football-­loving boy until he turned eight, when his parents noticed a change in him.

He lost weight, no longer had much energy and was soon struggling even to walk. As a result of a virus, he had an enlarged heart and, as his condition deteriorated, it became clear that the only hope for him was a donor heart.

Keira’s father Joe listens to her heart after it was donated to nine-year-old Max Johnson

For 196 days, Max languished on the waiting list for a heart as his parents hoped desperately that one would become available while knowing that, in order for that to happen, another family had to lose their child.

The Story Of A Heart is the moving and, at times, harrowing account of how Max and Keira’s fates intertwined, told from the point of view of the dozens of people who all played a part in their story – from nurses, ­doctors, transplant co-ordinators and ambulance staff to the relatives of the children themselves.

Even though it’s almost 60 years since the first heart transplant, putting a new heart in someone’s body is still a ­challenging procedure.

Clarke’s account of how Keira’s heart was implanted into Max’s body is as tense and nerve-racking as any thriller. Even kept in cold storage, a heart is only viable for a scant six hours.

With such fine margins, the timing is crucial; Max’s doctors had to be certain his body was ready to receive the donated heart before the organ could be taken out of Keira’s body.

Max’s severely diseased heart had so much scarring that the surgeons operated by touch and feel. One of them described it as being more akin to archaeology than surgery.

Keira with her mother Loanna, who was seriously injured in the car crash

Finally, once they were confident they would be able to remove Max’s heart, the team at the Bristol Royal Hospital for Children were given the go-ahead to remove Keira’s heart.

Dressed in her favourite Mickey Mouse pyjamas, her long hair carefully brushed by the nurses, Keira was taken to the operating room where her heart would be removed.

It was packed in ice and taken by ambulance to a private plane which would fly it to Newcastle.

Joe Ball, determined to ­honour his daughter to the end, watched the box being loaded into the ambulance and driven away. ‘For many long minutes after its departure, his gaze remains rooted to the spot where he has just observed his daughter’s heart leaving him for ever,’ Clarke writes.

In Newcastle, Max, now with no heart inside his body, was being kept alive by a mechanical oxygenator.

When the heart arrived and the surgeon lifted it out of its box, ‘every eye was glued to the hands that clasped the promise of life. This isn’t medicine, it’s witchcraft’.

As Keira’s heart was placed in Max’s chest cavity and meticulously stitched into place, it started to warm up. As the heart began to beat again, it appeared to those watching as if ‘it is life itself that is being transferred’.

The day after the transplant, Max’s mother Emma noticed that his cheeks were pink for the first time in a year. A week later he was running down the hospital corridor. Six weeks later, he was able to go home.

A week after the heart transplant, Max was running down the hospital corridor

Usually, the families who have donated organs and the recipients will never meet or know each other’s names, but before his surgery Max had been featured in a newspaper campaign to persuade the government to make organ donation an ‘opt out’ process, rather than an ‘opt in’, thereby potentially increasing the number of donor organs.

Max’s mother, Emma, received a Facebook message from Keira’s mother saying: ‘I think you may have our daughter’s heart and it’s the most beautiful heart in the world.’

Nine months after the transplant the two families met and, using a stethoscope, Keira’s family were able to listen to her heart beating in Max’s chest. The change in the law on organ donation was given Royal Assent in 2019 and is known as Max and Keira’s Law. Seven years after his transplant, Max is still fit and well, although aware that he will almost certainly need further surgery: the average life of a donor heart is only 14 years.

Clarke, an NHS palliative care doctor, tells the story of this transplant with verve and compassion.

In the UK, as in most other countries, there is a desperate shortage of donor organs and many people die while on the waiting list for a transplant. The central message of this book is articulated by one of the ­doctors who treated Keira. ‘Nobody I’ve spoken to has ever regretted saying yes to organ donation…it is the one good thing, the one extraordinary thing, that can come out of such terrible tragedies.’