Review: Vivien Horler

The Story of a Heart, by Rachel Clarke (Abacus Books/Jonathan Ball)

The Story of a Heart was published last year, but I heard about it only when Rachel Clarke, a palliative care doctor with Britain’s NHS, won the Women’s Prize for Non-Fiction this month on the strength of it.

It is an extraordinary narrative, touching, profoundly moving and beautifully, even poetically, written. It tells the story of two nine-year-old British children, Keira and Max, whose lives became inextricably entwined when Keira was in a catastrophic car accident.

In the midst of their grief, her family opted to donate her organs – heart, liver and kidneys – saving four lives, two of them children.

One was Max, who received Keira’s heart. Max, who had been an active “footballing, tree-climbing, playfighting force of nature” became ill with a mysterious illness – probably a virus – that caused his heart to fail, leading to his spending nine months in a hospital bed, all that time on the brink of death.

Here’s a longish paragraph that gets to the nub of things: “The first of our organs to form, the last to die, [her heart ] carried Keira safely through the earthquake of childbirth, it calmed and slowed in the cradle of [mum] Loanna’s arms, it quickened with the joy of cuddling lambs on the farm, it exulted as Keira flew through the air on the back of her beloved pony Charlie. Now, translucent cardioplegia fluid floods the coronary arteries and takes only seconds to work. There is a quiver, a shiver, and then the heart is still. Cold, instantaneous cardiac arrest, vital for preserving the astounding power that may yet save Max’s life.”

Generally speaking, donors and recipients involved in transplant surgery rarely know who each other are. But occasionally the families do discover each other’s identity, and this is what happened in the case of Keira and Max.

Clarke says she first came across Max’s story in the Mirror newspaper in June 2017. In England at the time people who wanted to donate their organs after death had to opt in to make their wishes known, by signing up to Britain’s national organ donor register.

But a campaign was growing among medical and patient advocacy groups as well as a the media that more lives could be saved if the law were changed to make the presumption that all adults wanted to be donors unless they specifically opted out.

The Mirror chose to make Max the poster boy of the campaign, publishing a front-page picture of a wan-looking, tube-ridden boy under the headline “Change the Law for Max”.

It appears that up to one in five children in Britain and America might die while waiting on the transplant list. Just when hope was running out for Max, Keira was in a car crash and suffered an appalling brain injury.

It was soon realised the little girl was brain dead, but her heart was still beating strongly. Her family chose to donate her organs, and in September 2017 the Mirror carried another picture of Max on the front page – this time pink-cheeked and smiling.

Max’s parents wrote in gratitude to the UK’s transplant service, NHS Blood and Transplant, which passed the letter on to Keira’s family.

Once the family received the letter, they reasoned it was likely the Mirror’s poster boy Max was probably the same Max his parents referred to in their letter.

Louanna, Keira’s mother, then sent a private message on Facebook to Emma, Max’s mother, and the families were in touch.

In her prologue Clarke says she was “captivated by the way their lives became entwined around a single, shared heart”.

Clarke then interviewed not only Keira and Max’s families, but also many of the NHS medical personnel that made the transplant possible.

The result is this book, whose contents will stay with you long after you have closed it. It is at once immensely sad and wonderfully joyful. Alongside her human stories, Clarke has also gone into the ethics, science and history of transplant surgery, with many familiar names mentioned, including those of pioneering SA heart surgeon Chris Barnard and that of his doomed patient, Louis Washkansky. (You are struck by the number of dogs that were experimented on before the first transplants, both here in SA and the US.)

Max is now 16, 6ft tall, and enjoys kickboxing. Keira would have turned 17 this month.

Clarke writes with consummate sensitivity of the terrible experiences of Keira’s family, and the ghastly tenterhooks Max’s family suffered, fearing their little boy would die at any moment. At one point a despairing Max ried to precipitate his own death by pulling vital tubes out.

This is a remarkable, riveting and utterly absorbing book.