A new book about heart transplantation and organ donation features interviews with a nurse and a surgeon from Royal Papworth Hospital NHS Foundation Trust.
The Story of a Heart, by Dr Rachel Clarke, focuses on the real-life story of two nine year-olds, Max and Keira.
The book has at its centre the events that occurred on one summer’s day, when Keira suffered catastrophic injuries in a car accident. Though her brain and the rest of her body began to shut down, her heart continued to beat.
In an act of extraordinary generosity, Keira's parents and siblings agreed that she would have wanted to be an organ donor. Meanwhile, in another part of the country, Max had been hospitalised for nearly a year with a virus that was causing his young heart to fail. When Max's parents received the call they had been hoping for, they knew it came at a terrible cost to another family.
The Story of a Heart, by Dr Rachel Clarke
Campaigning by both families led to The Organ Donation (Deemed Consent) Bill – now referred to as Max and Keira’s Law - achieving Royal Assent, and came into effect in May 2020.
In the book, Dr Clarke interviews a nurse and a surgeon from Royal Papworth Hospital: consultant transplant surgeon Mr Pradeep Kaul and transplant nurse Clair Ellis.
Pradeep and Clair were part of the hospital’s National Organ Retrieval Service (NORS) team. The NORS team are on-call 24/7, 365 days a year. They retrieve cardiothoracic (heart and lungs) organs from donors across the country, delivering those organs to recipients in need of a life-saving transplant.
“Royal Papworth Hospital is well known as a world-leader in adult heart and lung transplants, but people don’t often realise that we retrieve these organs too, both for transplants at our hospital but also for patients at other hospitals across the country. Although we are an adult hospital, we do paediatric retrievals too”, said Mr Kaul, Clinical Lead for NORS at Royal Papworth.
“I remember Keira’s retrieval for Max very well. I told Rachel when she was interviewing Clair and me that although I’ve been doing this for a very long time, it hits particularly hard when we go to a paediatric retrieval. We get more emotionally drained, reflecting on life.”
“But working in transplantation also brings so much joy. We get to see how the recipients’ lives are changed forever, how they can lead such fruitful lives after this. It’s one of the things that keeps us going, for sure.”
Surgeon Pradeep Kaul with the book
“Every day, people in the UK die because of a lack of available donor organs,” added Clair.
“Working in transplantation is bitter sweet. To make someone better, someone has to die. But without donors, even more people will die waiting.
"Being on call means missing family events, celebrations, birthdays, but knowing that your work makes people better and gives them a second chance at life is so rewarding.
“It's really important that people talk about organ donation with their loved ones, so that if the worst were to happen to you, your rights and wishes can be respected. You could save up to nine lives.”
Dr Rachel Clarke and transplant nurse Clair Ellis
This book tells the unforgettable story of how one family's grief transformed into a lifesaving gift. With tremendous compassion and clarity, Dr Rachel Clarke relates the urgent journey of Keira's heart and explores the history of the remarkable medical innovations that made it possible, stretching back over a century and involving the knowledge and dedication not just of surgeons but of countless physicians, immunologists, nurses and scientists.
Extracts have been featured in the Sunday Times magazine and in the Observer. It will be Radio 4's Book of the Week on the week commencing 9th September.
The book is available at Waterstones from Tuesday 3rd September.