Book Extract | Story of a Heart: Two Families, One Heart, and the Medical Miracle That Saved a Child's Life

This is the tale of a boy, a girl, and the heart they share. It is a story that no one was meant to tell.

Book Extract

Excerpted with permission from Story of a Heart: Two Families, One Heart, and the Medical Miracle That Saved a Child’s Life by Rachel Clarke, published by Abacus/ Hachette India.

Prologue

This is the tale of a boy, a girl, and the heart they share. It is a story that no one was meant to tell. In the impassioned world of transplant surgery, the families of organ donors almost never encounter the people into whom those organs are transplanted. For obvious reasons, transplant services go to great lengths to ensure that donor and recipient families are kept at a distance. The entire process of organ donation is fraught enough without creating additional emotional entanglements that could heap distress upon vulnerable individuals.

Exceptionally rarely, however, donor and recipient families do discover each other’s identity. Invariably, the catalyst is media attention. I first encountered the story of nine-year-old Max Johnson in The Mirror in June 2017.

At that time in England, people who wished to donate their organs after death had to proactively opt in to making their wishes known by signing up to the national organ donor register. Many medical and patient advocacy groups argued that more lives could be saved if the law were changed so that— as in a growing number of other countries—adults would be presumed to have consented to organ donation unless they opted out. The hope was that this would address the scarcity of organs, enabling many more lives to be saved.

The Mirror, a newspaper with a history of advocating on a wide range of social issues, chose to run a campaign on this one. Under the headline ‘Change the Law for Max’, the paper ran a front-page splash making a powerful appeal to then UK Prime Minister Theresa May to introduce new legislation addressing the scarcity of organs available for transplant. The editor hoped that public pressure would galvanise the government into making the drafting of the necessary legislation a priority.

Max had been a footballing, tree-climbing, play-fighting force of nature until a mysterious illness caused his heart to fail, leaving it so dangerously weak and unstable he was forced to spend nine months confined to a hospital bed. Ordinarily, nothing in the human body is quite as single-minded as the heart. Its four chambers, fibrous flesh, electrical waves, and swing-door valves are designed with one aim and one alone: to beat.

Through beating—or more accurately, through contracting then relaxing—the muscle of the heart jolts blood into every last crevice of the human body, delivering oxygen, nutrients and hormones to tissues while whisking away the cellular byproducts of life. Around 100,000 times a day—3 billion times over an average lifetime—all four chambers squeeze as one, forcing blood to surge through our arteries. The adult heart pumps 260 litres of blood every hour, enough to fill a small swimming pool each day. One contraction is so powerful it can send blood spurting 3 metres straight up into the air if the aorta, the body’s principal artery, is severed. The heart, in short, is a toiling, tireless, muscular miracle. Barely the size of a pair of clasped hands, its capacity for circulating blood is extraordinary.

Max’s heart muscle had been fatally harmed, probably by a mild viral infection he had scarcely noticed. While Max was in the hospital, his parents acquired the new and terrible knowledge that up to one in five children in Britain and America might die while waiting on the transplant list. They were equally aware that the only thing that could give Max what he needed to live was the death, appallingly, of someone else’s child.

Max became the poster boy for The Mirror’s campaign. Young, sweet, and immensely charismatic, he captivated the hearts of readers. After months of waiting for a replacement heart—and just when it started to seem that hope was lost—another child, Keira, had the terrible misfortune to suffer a catastrophic brain injury as a result of a road traffic collision. Keira’s family, upon being told she was brain-dead, immediately decided to gift her organs. They knew with absolute certainty that this was what their daughter would have wanted.

In September 2017, a photo of Max in his hospital bed dominated the front page of The Mirror once more. The former wraith whose haunted stare had so moved readers was now pink-cheeked and beaming. His chest was bandaged, hiding a livid median sternotomy scar that extended all the way from the top of his sternum to the bottom of his ribs. Behind that scar, Keira’s heart sat and squeezed, flooding his body with blood and life.

In addition to Max, Keira’s organs had saved the lives of another child and two adults.

Overwhelmed with gratitude, Max’s parents Emma and Paul Johnson shared the following letter with the UK’s transplant service, NHS Blood and Transplant, who gave it in turn to the anonymous child’s family:

To the donor family,We are writing to you as you hold a very special place in our hearts. Our son, Max, is 9 and he had a heart transplant. He was very poorly and a heart transplant was his only chance of coming home and starting a new life.

We are so sorry that you lost your loved one, but we would like to thank you for the incredibly kind, courageous decision that you made to allow organs to be donated. We do not know the circumstances, but we can only imagine what a dreadful, harrowing time you have been through and are doubtless still going through, with the loss. Even in your grief, you have made a selfless decision to help others and we are indescribably grateful to you.

We hope that it brings you some comfort to know that Max’s post- transplant recovery has been smooth and without tcomplication. His new heart has been described as a happy heart and a brilliant heart. Max is very thankful and he is looking after his new heart. He says ‘Good Morning’ to his new heart every day and sends it lots of love, while it adjusts to the new environment.

He is eating healthily and exercising when he feels able, so that his heart will stay fit and strong. Max is getting used to all the medication, but he is full of energy and enthusiasm, as a result of the new lease of life that has been gifted by your family. He is relishing every moment back at home, without sickness, tubes, wires, machines, procedures etc. It was a very upsetting time, waiting so long for the call, but when we did get the call, we prayed for you and your family. We continue to pray for you and think about you. We wanted you to know that your sacrifice was not in vain and you have given an incredible legacy of love and good will to others.

We thank you so much for making a decision that has saved our son and given him the prospect of a future ahead of him. As he grows older, we will encourage him to cherish his heart in memory of you.

With our eternal gratitude, Emma and Paul

When Keira’s parents received this letter, they realised that the Max to whom it referred was very likely to be the same Max whose plight they had read about in the Mirror. It took no time at all for Keira’s mother, Loanna, to locate Emma Johnson on Facebook. After much deliberation, Loanna decided to write a letter of her own, introducing herself via a private message to the mother of the boy whose life her daughter had almost certainly saved. What happened next would change the history of transplant surgery in the UK.
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Rachel Clarke Story of a Heart: Two Families, One Heart, and the Medical Miracle That Saved a Child's Life Abacus/Hachette India, 2024. Pb. Pp.257

The first of our organs to form, the last to die, the heart is both a simple pump and the symbol of all that makes us human: as long as it continues to beat, we hope.

One summer day, nine-year-old Keira suffered catastrophic injuries in a car accident. Though her brain and the rest of her body began to shut down, her heart continued to beat. In an act of extraordinary generosity, Keira's parents and siblings agreed that she would have wanted to be an organ donor. Meanwhile nine-year-old Max had been hospitalised for nearly a year with a virus that was causing his young heart to fail. When Max's parents received the call they had been hoping for, they knew it came at a terrible cost to another family.

This is the unforgettable story of how one family's grief transformed into a lifesaving gift. With tremendous compassion and clarity, Dr Rachel Clarke relates the urgent journey of Keira's heart and explores the history of the remarkable medical innovations that made it possible, stretching back over a century and involving the knowledge and dedication not just of surgeons but of countless physicians, immunologists, nurses and scientists.

The Story of a Heart is a testament to compassion for the dying, the many ways we honour our loved ones, and the tenacity of love.

Dr. Rachel Clarke is a palliative care doctor and author of three London Sunday Times bestselling books, including Dear Life, which was shortlisted for the Costa Biography Award, longlisted for the Baillie Gifford Prize, and chosen as a BBC Radio 4 Book of the Week. Prior to medical school, she worked as a broadcast journalist. She writes for many publications, including the New York Times, London Guardian, and the London Sunday Times, and she makes regular television and radio appearances on outlets including the BBC, among others.