Rachel Clarke On Medical Breakthroughs & Compassion

Excerpts:

Q. It's been an incredible experience to read The Story of a Heart. I t brought tears to my eyes.
A. When writing the book, sometimes it brought those emotions to me too, because it is an extraordinarily emotional story centering on two little children. And it's a life and death story.

Q. We think of children as having a life ahead of them. And here we are talking about Keira, who loses her life, and Max, who we are not sure will make it till the last moment.
A. The thing that always fascinated me about organ transplantation was the fact that there's a kind of brutal arithmetic that underpins every successful one. In order for somebody to live, someone else has to die. Max had been desperately ill, at 9 years old, waiting for a heart transplant in hospital. And the only thing that could save his life was the death of someone else's child. I hoped I could tell a story that was on the one hand, about the incredible medical breakthroughs, but also this extraordinarily rich and moving emotional story.

Q. This is a book of nonfiction, but it's imbued with emotion. How did you achieve this?
A. I think that the heart of good medicine and an essential requirement of every good doctor is the ability to really listen to your patients, really care about them as human beings — not just as somebody with a failing liver, a failing heart. You need to be curious about their life, their story. It was essential to try to understand the motivations, the fears, the emotions of all the main characters in this story at every crucial step. For me, the heart of good medicine and good writing is the same. It's this love of stories and caring.

Q. I'm sure there are a lot of other equally good doctors as yourself who feel the same way, but not everyone can make the time to transfer that emotion onto a page.
A. I suppose I'm a very unusual doctor because I started out as a journalist. And only very late in life, a decade after most people go to medical school, did I start my medical training... I think I brought all those years of journalistic training to my practice. In a busy hospital, I feel as though I'm almost walking through the collected works of Shakespeare in terms of how much intense experience, drama, all the big powerful human emotions... because it's a crucible of life-changing experiences. And I think I see writing as a way of trying to communicate something of that world to the public... As a palliative care doctor, one of the things that can cause a great deal of avoidable suffering is people being frightened about discussing death. And trying to open up the conversation about difficult subjects can be a very valuable thing to do. On the surface, The Story Of A Heart might appear to be a bleak book because Keira has to die in order for her heart to save Max's life. And yet it's in many ways an incredibly uplifting story because not only does Max survive, but also Keira's family in these very desperate, dark circumstances show the absolute best of human nature. They are so astonishingly courageous and generous and giving, and they find within themselves the strength to commit an act of radical altruism; to say, our hearts are breaking, but we will gift Keira's organs so that other children can live.

Q. You must have seen so much despair. And to show that humans can actually look ahead was an incredible moment that you wrote down.
A. More of the world is at war than at any point since the end of the Second World War. And yet those stories about power and aggression and domination, those stories don't define human beings. We are defined by our courage, our goodness, our strength, our ability to move heaven and earth to help each other when we need to. The Story Of A Heart is an example of a very ordinary family struck down by a terrible tragedy. And in that desperate moment, this ordinary family acts extraordinarily.

Q. The children’s names are forever etched into UK legal history with the law being named after them.
A. As a result of a campaign, the law in the UK did indeed change. And the new law for organ donation is called Max and Keira's Law. Originally it was going to be called Max's Law. Then British PM Theresa May announced this, but Max got in touch with Downing Street and said, no, I don't want it to be called Max's Law. It has to be called Max and Keira's Law.

Q. The other thing you bring out is the medical developments which took place so that we could come to the stage of Dr Barnard making the first transplant. And one of them which stood out was the fact that a heart surgeon chose to do an apprenticeship with a seamstress.
A. So one of the things that fascinates me about all medical innovations is they seem miraculous for a very brief period, and then we all just take them for granted... In the early 1900s, there was a young surgeon in France called Alexis Carrel who looked on in horror when the French president at the time was stabbed and died because no surgeons could stitch together the damaged vessel. Carrel thought, this is ridiculous, we must be able to do this. He tried experimenting with animals to stitch together two blood vessels and found it was very difficult. So he thought to himself, who is the best person to get advice from? And he realised the answer to that question was not another doctor, it was Madame Leroudier, who was renowned as the best seamstress in Paris and probably the world. And using her techniques, he was the first person in the world to successfully stitch together blood vessels in a human being. And he won the Nobel Prize for Medicine. But really, as in so many historical stories, there was a woman invisible and unsung. Madame Leroudier, by rights, should have shared that Nobel Prize.

Q. It was befitting that you won the Women's Prize for this book, because from the shadows emerged the strong women who shared their skills.
A. Historically, medicine has been a patriarchal profession. Women had to fight tooth and nail even to be accepted into medical school. And in the 1960s, the time when Christiaan Barnard successfully became the first person to transplant a human heart, that period of cardiac surgery was just bristling with testosterone. They would give these interviews to Time magazine, Newsweek, where they would talk about their conquering, their campaigning, their domination. So when I discovered the woman behind it all, I just found that fact delicious.

Q. I found it extraordinary that the two cardiothoracic surgeons responsible for Max’s transplant were immigrants. One from India, Dr Pradeep Paul, and the second from Pakistan, Dr Asif Hassan.
A. One of the wonderful things about NHS is the fact that it is a beautifully rich, multicultural institution. And the two surgeons at the heart of this story, Pradeep and Asif, are just extraordinary. Asif, who performed Max's surgery, is one of the most renowned paediatric heart surgeons in Europe. But the reason he wanted to do heart surgery dates back all the way to that moment when Christiaan Barnard successfully transplanted the first human heart. He was, I think, 10 or 11 years old. And he said to his family, I want to be a heart surgeon. And there he was, 50 years later, transplanting Max's heart. It's a wonderful example of how medicine transcends boundaries and ethnicities. Medicine is fundamentally about human beings helping each other.