The heart-rending story of a child’s heart transplant

Max Johnson’s life while he waited for a heart transplant had become so miserable and traumatic that he didn’t care whether he carried on or not. Indeed, the colourless, almost lifeless nine-year-old recorded a video saying he wanted to die. His parents felt as though they were on ‘death row’ as they waited for a donor. They knew, too, that the call announcing there was a heart for their son would mean that somewhere else in Britain a family was mourning. They would benefit from the sudden death of someone they were initially only told was an ‘age-appropriate donor’. Max’s mother read between the lines: her son was getting the heart of another nine-year-old.

That heart had belonged to Keira Ball, who enters Rachel Clarke’s extraordinary book full of life and with all the time in the world ahead of her – until she and her mother and siblings were involved in a car crash that left her brain dead. This book is the story not just of how Keira’s heart ended up being carefully sewn into Max’s body so that his cheeks turned pink for the first time in more than a year. It is also the story of how the Johnsons’ case helped change the law on organ donation to presumed consent, rather than relatives opting in when their loved one was dying. It is so many other stories, too: of the medical breakthroughs in mechanical ventilation, surgery and immunology that meant the transplant could happen; also the doctors involved in both Max and Keira’s treatment – from the junior medic who was first on the scene of the crash and whose own life fell apart afterwards, to the transplant nurse who still visits Max’s family today.