One of the ground rules of human transplant services is that donor and recipient families are kept at arm’s length from one another. The thinking is that the entire process of organ donation is difficult enough without creating additional emotional strain on vulnerable individuals.
Rarely, however, donor and recipient families do discover each other’s identity – usually as a result of media attention. The Story of a Heart is the tale of one such case. The author, Rachel Clarke, a UK palliative care physician and a former broadcast journalist, tells a moving story about how the lives of two nine-year-olds became entwined around a single heart.
In 2017, Keira suffered a catastrophic brain injury as a result of a road traffic collision. On learning that she was brain-dead, her family immediately decided to donate her organs. Max Johnson’s heart muscle, meanwhile, had been fatally damaged by a viral infection and his heart was failing while he waited on the transplant list for a suitable donation. His life was saved when he received Keira’s heart.
A media campaign featuring Max led Keira’s parents to guess that he was the recipient of her heart and the children’s mothers made contact via Facebook. What happened next would change the history of transplant surgery in the UK.
It also sparked Clarke’s interest: “I knew there was only one way I wanted to tell this extraordinary story: by placing the heart centre stage,” she writes. She interviewed all those involved in its journey – parents, siblings and health professionals. “I set out to recreate this journey as faithfully as possible, by writing, in essence, the biography of Keira’s heart.”
The result is an impressive work of narrative nonfiction. It is profoundly moving while at the same time inspiring. With tremendous compassion and clarity, the author relates the urgent journey of Keira’s heart, while exploring the history of the remarkable medical innovations that made it possible – involving the dedication not just of surgeons but of many physicians, nurses and scientists.
While a campaign led by Keira and Max’s parents led to a new organ donor opt-out law in England, readers of this very human book will wonder if more could be done to allow donor and recipient families to support each other.
