IIn 2017, a nine-year-old girl from Devon was involved in a car crash that left her with a serious brain injury. Keira was a keen horse rider who loved animals and would go out of her way to save insects in need. After her family were told she was brain dead, they immediately asked her to donate her organs, knowing that was what she would have wanted.
While Keira was in intensive care, a young boy from Cheshire spent eight months in hospital with a dangerously enlarged heart. Before he became ill, nine-year-old Max loved playing football, climbing trees and wrestling with his friends. But now, with acute cardiomyopathy caused by a viral infection, Max was painfully thin and kept alive with a mechanical heart pump. Not only did he not have the strength to leave his bed, but on his darkest days, he did not want to live. He and his family knew his heart could fail at any moment and his only hope was a transplant.
In The Story of a Heart, Dr Rachel Clarke writes about the feat of modern medicine that allowed Keira to give Max life by donating her heart. As the author of Dear Life, about the realities of terminal care, and Breathtaking, an account of the Covid crisis (later adapted for TV by Line of Duty’s Jed Mercurio), Clarke has made a name for herself telling difficult medical stories in a way that is accessible and humane. As well as a tender account of two families bound together by tragic circumstances, and the transfer of a human organ from one body to another, The Story of a Heart offers a detailed map of the surgical innovations, people and logistics that made that transplant possible. It also explores our changing understanding of this “toiling, tireless, muscular wonder” that is ingrained in our language and represents the range of human feelings: “Hearts sing, soar, race, burn, break, bleed, swell, hammer, and melt. They can be won or lost, cut or trampled, and hewn from oak or stone or gold.”
Centuries ago, the heart was considered the storehouse of human emotion and morality. Aristotle thought it was the source of human intellect, pleasure and pain, while 16th-century French surgeon Ambroise Paré called it “the main house of the soul.” Although science has moved on, the heart is still where we feel the physical sensations of fear and excitement, as adrenaline and increased blood pressure cause the heart to beat faster.
As she follows Keira and Max’s complex medical journeys, Clarke frequently detours into the lives of those who care for them—the book features a long cast of paramedics, ICU staff, anesthesiologists, and surgeons—as well as the scientific discoveries that inform their treatment. So after introducing us to Nick, a newly minted doctor who happened upon the crash site and carefully pulled Keira out of the car to perform CPR, the story moves on to tell us about Dr. James Styner, an orthopedic surgeon and licensed pilot who, 41 years earlier, was involved in a light plane crash with his wife and four children. While being treated in a small rural hospital, Styner witnessed a doctor lift his semi-conscious son from a hospital cart, causing his head to fall back. It was clear to him at the time that the medics had no idea how to safely respond to severe trauma, and so he devised a uniform protocol for treating advanced trauma cases that is still used today.
Elsewhere, Clarke documents the exploits of Bjørn Ibsen, who invented artificial respiration, which in turn led to the creation of the first intensive care units; the first operation on the human heart, by Norwegian surgeon Axel Cappelen; and John Gibbon’s invention of the heart-lung machine, an external pump that moves blood around the body during heart surgery. All of their innovations would contribute to Keira and Max’s treatments decades later.
There are moments, within this intricate tapestry, when Clarke’s evocative, empathetic writing takes your breath away. As she takes in the spectacle of drivers in gridlocked traffic miraculously making way for an ambulance, she reflects on the unspoken knowledge “that nothing more real than the whisper of fate protects the people they love from the horror of a blue-lit dashboard, a vehicle emblazoned with that cruelest combination of words: pediatric intensive care ambulance.”
And while there’s much to learn here about the minutiae of medical inventions and procedures, Clarke never loses sight of the human impact. She marvels at the “important and utterly banal” computer system that matches donors with suitable recipients. “[These are]matters of life and death, in Excel spreadsheet form. The coordinator knows that the list of names she’s about to generate will whizz out into the world like a mortal decree, a life-and-death dictate, plucking one child from the abyss and condemning others to remain on the edge. It’s extraordinary, divine, terrifying.”
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We know what happens to Keira and Max from the beginning, but that doesn’t stop the tension from mounting as preparations are made for the safe transfer of the heart. By the time Max is ready for surgery and sinks into a sedated unconsciousness, his parents aren’t the only ones sobbing: I was in pieces. It’s a testament to Clarke’s careful, sensitive reporting that both Keira and Max’s parents not only agreed to the book’s publication but also consented to an extended interview for it.
In one of the most remarkable passages, we witness the meeting of the two families—a rarity in transplant cases—three months after Max’s surgery. Joe, Keira’s father, is handed a stethoscope. He puts the earplugs in his ears, places the drum on Max’s chest, and listens to his daughter’s heart: busy, pulsating, alive.