REVIEW: The Story of a Heart: Two Families, One Heart, and the Medical Miracle that Saved a Child’s Life by Rachel Clarke
One summer day, nine-year-old Keira Ball was in a terrible car accident and suffered catastrophic brain injuries. As 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 immediately agreed that she would have wanted to be an organ donor. Meanwhile nine-year-old Max Johnson had been in a hospital for nearly a year, valiantly fighting the 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—in what Clarke calls “the brutal arithmetic of transplant surgery.”
The act of Keira’s heart resuming its rhythm inside Max’s body was a medical miracle. But this was only part of the story. While waiting on the transplant list, Max had become the hopeful face of a campaign to change the UK’s laws around organ donation. Following his successful surgery, Keira’s mother saw the little boy beaming on the front page of the newspaper and knew it was the same boy whose parents had recently sent her an anonymous letter overflowing with gratitude for her daughter’s heart. The two mothers began to exchange messages and eventually decided to meet.
This is the unforgettable story of how one family’s grief transformed into a lifesaving gift. Clarke relates the urgent journey of Keira’s heart and explores the history of the remarkable surgery that made it possible, stretching back over a century and involving the knowledge and dedication not just of surgeons but of countless nurses and technicians, immunologists and paramedics. The Story of a Heart is a testament to compassion for the dying, the many ways we honor our loved ones, and the tenacity of love.
CW – Okay if you’ve read the blurb, you know this is a non-fiction book about heart transplantation in a nine year old child. For someone to receive a heart, another has to die.
But also PTSD, grief, emotional distress, discussion of the history of heart surgeries/transplantation which usually began with animal vivisections.
Despite the precarious clinical state of so many patients awaiting organs, the transplant service always—and rightly—makes treating the donor family with humanity and kindness their first concern. Keira is emphatically not a warehouse of spare parts, she is a little girl, adored and cherished, who will be treated as such until the very end.
Review
Wow. I’ve read books written by transplant surgeons about the process in general but this book details one specific transplantation that was possible due to an enormous number of talented health care practitioners, the horrific accident that cost Kiera Ball’s life, and her family’s act of selfless generosity.
ICU doctors have a well-deserved reputation for being imperturbable in even the most harrowing of circumstances, but what happens next floors Sarah. In response to being asked if anyone in the family has any questions, [eleven year old] Katelyn, who looks almost identical to Keira, turns her clear blue eyes on the doctor. “She looked directly at me and said, ‘Can we donate her organs?’” says Sarah. “I looked straight back at her, because I was not expecting that at all, and then I said, ‘Yes, absolutely. We will start looking into that for you, if that’s what you would like us to do.’ Then Katelyn turned to Joe and said, ‘Dad, we’ve got to do this because it’s what she would have wanted. I know it’s what she would have wanted.’”
On a beautiful summer day, one family’s loss became another family’s salvation. A junior doctor who happened to be traveling on the same road as the crash, was there to coordinate CPR until the paramedics could arrive. Trauma specialists worked to stabilize a nine year old’s horrific internal injuries. A traveling father learned part of what had happened, hurried to where his wife and son were flown by air ambulance only to be told his youngest daughter Kiera, in another hospital, was the one in the worst condition. With Kiera’s mother and brother in intensive care, Joe Ball must face unimaginable grief even as his oldest two daughters urge that their youngest sister’s organs be donated.
“It felt to Emma as if he had lost a piece of his soul,” says Paul. “His eyes were glazed over and his spark was snuffed out. The crushing realization that someone you love so unconditionally is suffering and you can’t stop it is terrible.”
Another family who have watched their nine year old son Max slowly drain of energy and life for almost a year, who have already endured an intensive surgery to implant a pump to keep him alive while waiting on the transplant list, who have watched other children on the wait list die, who are unaware of how depressed and suicidal Max had become because of his situation, finally gets The Call. But even with a “good heart,” Max still has a 20% risk of dying in surgery, will have to take immunosuppressants for the rest of his life, and faces the knowledge that most heart transplants don’t last longer than 14 years.
Although her body appears to live on, the irreversible failure of the brain stem denotes the cessation of life. The moment marks a subtle shift in the manner of her care. If anything, the tenderness with which Eve treats Keira is heightened, not diminished. Perhaps, in the face of all they have lost, this extra solicitude is a way of showing her family that everything she means to them still lives, is still loved, and that this is the only form of afterlife that counts.
Staff at many hospitals, along with the transplant specialists, go above and beyond to support their patients and the patients’ families. After Kiera’s brain death has been established, the nursing staff kicks up their efforts for the Ball family who themselves fill Kiera’s hospital room with music, joy, and the love they feel for her. All during the months that Max waits in a specialist hospital, staff there ensure that he has his beloved music as well as occasionally sneaking him some McDonalds french fries.
Everyone knows what pediatric retrieval means. This is the tragedy whose grace is its power to save, to avert other tragedies, to preserve other parents from this intolerable pain. No one questions, no one quibbles—the staff is galvanized to do anything required to help Keira save lives.
The delicate but ruthless process of offering Kiera’s organs and then weaving together the various strands of effort that must take place in timed coordination begins. Respect is paid to the donor, phone calls zip back and forth between donor and recipient hospital staff. Transplant surgeons bend to their task and then an OR staff watches as a heart finds a new home and begins to do what a heart does best.
… and slowly but surely—before fresh blood has even found this emptied organ—the magic has begun. There is a quiver, a shudder, a microscopic gyration. No blood, no oxygen, just the merest hint of warmth, and already Keira’s heart is trying to beat. This is not a “good” heart, as the surgeons said in Bristol, this is a glorious heart, one of the wonders of the world, an earthly miracle. Infinitely more spectacular than some minor lunar footstep, this heart wipes the floor with human engineering. Heart of hearts, Max’s lifeline, the purest love gift, a marvel on the brink of beating.
Woven among all of the above are bits and pieces of the development of ATLS to manage trauma, of heart surgery, of heart transplantation, of changing medical opinions on these, of changing medical opinions on what constitutes death, of bravura surgeons who dared and pushed and created new fields of medicine. Most of these people were/are brilliant but not all were kind. I was appalled to read about the first “successful” heart transplant.
Seven years on, Max is doing well, his brother has decided to become a doctor based on watching what he saw his brother’s doctors do, the Ball family has a new beloved daughter, and the families have met. The UK has also passed an “opt out” of being a transplant donor law to try and increase the number of organs for those waiting on transplant lists.
Usually I can manage a certain reading speed but after a few hours of starting this book, I realized I was behind. Then it hit me that I was having to stop and keep wiping away an almost constant trickle of tears. Reading this one hurt at times. But it also lifted me up to see the dedicated staff at many health care facilities all working together to ensure that these families and this gift were taken care of. A
~Jayne
Beneath the searing theater lights, the nursing team washes every inch of Keira. Gentle hands, loving hands, restoring not health but humanity. Together they remove the lines and wires, placing clean white dressings over any visible punctures or incisions. Tenderly, they rub her hands and feet with lotion that smells of flowers. Keira is as cold and pale as marble. She could not be more clearly dead—and the point of the last offices is not to pretend otherwise. What these nurses are returning transcends appearance. This is a change of state, a restoration from surgical donor back to cherished human being. As they ease Keira’s limbs into vivid pink taffeta—the party dress chosen by Joe, and which a porter has delivered from PICU to the theater—they know precisely what these rituals signify. You are loved. You mattered then, and you matter now, and you will matter always, forever.
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Just reading this review, brought me to tears. thank you for alerting us to this book.
@Juhi: You’re welcome. It’s a tough one to read but worthwhile. I could have easily quoted a lot more but then the review would have been a novella in length.
The author, Dr. Clarke, has made the material easy to understand without it feeling as if it’s been “dumbed down.”
My niece received a heart transplant when she was 8 and a 2nd transplant in her mid 30’s. The transplants have given her a relatively normal life. We are so so so grateful to the families that were able to give to others during their terrible grief for the loss of their loved ones. Every holiday, every event we know what we’ve gained and what they’ve lost. There is no way to thank them enough for their generosity and love.
I’ll look for the book. Thanks for the recommendation.
@K R: I’m glad to hear that your niece is doing well and am also grateful that there are donor families and people who let their families know they want to be a donor. Have tissues ready when you read the book.
@Jayne, thanks for bringing this to our attention. Like @Juhi, I was moved to tears simply by your review. It sounds like a hard but beautiful read.
@flchen1: You’re welcome. It’s a book I’m hoping that lots of people read and I’m delighted that my library got it and that there is a waiting list for it.