On a TV drama, performing a heart transplant is frantic. Nurses race the patient down the halls; the surgeons snap at each other. Maybe the patient’s heart stops before they are brought back to life.
That narrative couldn’t be further from the truth. As told in The Story of a Heart: Two Families, One Heart, and the Medical Miracle that Saved a Child’s Life, the process of heart transplantation can require stagnant months or years as patients and their families wait for donor organs; this is especially the case when the patients are children. One in five children in Great Britain and America might die while waiting on the transplant list, reports author and a palliative care doctor Rachel Clarke.
Clarke braids a rigorous scientific and, at times, troubled cultural history of transplant medicine with the often harrowing story of two children: 9-year-olds Keira Ball and Max Johnson. The Story of a Heart starts with a terrible car crash that Keira survived with injuries so severe that the following day, all activity in her brain ceased. But while nearly every other major organ in her body was grievously injured, her heart, miraculously, beat vigorously.
Meanwhile, a mild viral infection caused Max to have dilated cardiomyopathy—a severely enlarged heart—and his prognosis was grim. A once active child, Max spent a year in bed, his parents aware that at any moment, a cardiac arrest could cut his life short. The day after Keira’s accident, her family removed her from life support. They placed her on a pediatric organ donor list, knowing it’s what the kind, loving little girl would have wanted. And then Keira’s heart gave Max a second chance at life. Clarke shows the psychological calculus that the recipients of transplants make, writing of Max’s parents, “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.”
Clarke’s reportage of minor characters, like a junior doctor who happened to be driving on the same highway when Keira’s family had their car accident, also personalize the story. And not surprisingly, the narrative about Keira and Max’s families, and the team of professionals caring for them all, is very touching. Clarke never strips Keira of her humanity; the story of her heart, and her life, continues to help others in this informative, important book.
