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It’s Sunday July 30 2017 and nine-year-old Keira Ball is on her way to parkour with her mum and brother when two tonnes of truck collide with their car. Despite roadside CPR and surgery to stem the bleeding, two days later Keira is declared brain-dead. Yet her “perfect” heart dutifully keeps beating on life support.
Her two sisters perform devotional last rites, painting her nails orange and brushing out her golden hair, while their father and mother (herself still a patient in intensive care) agree that part of their daughter should continue to live in another child’s chest. That child is Max Johnson, also just nine years old, breathless with heart failure and worn into precocious despair from waiting 196 days on the NHS transplant list.
Telling this true story with dramatic pace, medical precision and characteristic warmth, The Story of a Heart is Rachel Clarke’s finest book yet. After her memoirs Your Life in My Hands and Dear Life came her brutal account of the Covid pandemic, Breathtaking — a trio of books that helped secure Clarke’s status as an authoritative voice for those on the NHS frontline and concerned patients who rely on its care.
A doctor in palliative care, Clarke’s specialism is in some ways transplant surgery’s counterpoint. In a hospice there are no more cures, and time has been called on further heroics. But what both areas of medicine share is proximity to the end: one accepts death as inevitable, and there is beauty in that; the other rails against nature’s limits, and there is beauty in that too.
By framing her book around Keira’s heart, Clarke shows how a “far-fetched convergence” of tragic events that Sunday, as well as decades of research breakthroughs, surgical training and ethical debate, together enabled the operative feat to take place. For an organ to leave one body and join another requires anaesthesia and antisepsis, of course, but also mechanical ventilation, immunosuppressants, knowledge about sewing together blood vessels refined from experimenting on dogs, and even a redefinition of death itself: no longer the moment the heart gives up, but when the brainstem permanently ceases to function. It’s sobering to remember how recent this history is: the UK’s National Organ Donation Register opened only in 1994.
The British public are painfully aware of NHS crises, scandals and waiting lists, but, reading about the UK’s National Organ Retrieval Service — always on-call, deployed by road or air, orchestrating operations of unthinkable complexity — it’s hard to conclude that the country’s healthcare system is irretrievably broken. Clarke brilliantly explores the two essential halves of medical practice: algorithmic reliability and a precision of focus bordering on “psychopathy”, dovetailed with a humanity that can afford — at expertly weighed moments — to bend or even part ways with protocol so that patients are not reduced to “a warehouse of spare parts”.
For many, organ donation is a gift of radical kindness, “the purest expression of human altruism”, while for the proudly unsentimental it is a civic responsibility, or even logical thrift. In 2020, the Organ Donor (Deemed Consent) Act was passed in England, shifting our national disposition on donation at death from an opt-in to an opt-out system. Still there remains a desperate shortage of donors worldwide and in the UK. Here, as online, Clarke is a determined advocate and campaigner. Her narration is reassuring about the protections built into the donation process, and the consolations that come from considering what our bodies might be able to do when we are gone (Keira’s liver and kidneys went on to save other lives).
Deeply moving, but never at truth’s expense, The Story of a Heart is realistic about the guilt that comes from one person’s future being predicated on another’s fatal misfortune. Half-wishing a tragedy to happen is the “appalling” dilemma of waiting for a transplant. Thanks to tight regulation, emotional stage-management, and the principle of being free at the point of need, the NHS is well placed to ensure that a transplant does not become a transaction. Nobody in the chain stands to profit financially from any given operation — although it does cost the taxpayer, dearly.
At this point uncomfortable questions about “good recipients” start to enter the equation, alongside necessary clinical criteria for suitability. A “young, sweet and immensely charismatic” boy bedridden by a cardiac condition through no fault of his own is an uncontroversial candidate. We need a sequel from Clarke about how the UK’s chronically cash-strapped healthcare system should fend off questions about who not to save, and how it will ensure that all in need can hope for a second chance at life.
The Story of a Heart by Rachel Clarke Abacus £22, 320 pages
Kate Womersley is an NHS doctor in psychiatry and a researcher at Imperial College London
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