Generally I review kids books, but every now and then a book covering a topic aimed at parents is too important not to share, and this is one. So please do read my in depth interview on Congenital Heart Disease with the author of The Heart Warrior’s mother. I think you’ll agree.
Did you know that one in 100 children is born with a congenital heart defect? Or that Congenital Heart Disease (CHD) is approximately 60 times more prevalent than childhood cancer and about 25 times more common than cystic fibrosis?
I certainly didn’t – not until I started doing research for The Heart Warrior’s Mother.
So why do we hear so little about it? Hopefully, my new book will help to change that.
My journey into the world of heart warriors – children with CHD fighting the odds to survive – when a young man came to my home to buy my late mother’s portable oxygen concentrator which I’d advertised for sale online. I was in the throes of researching a book based on my mother’s experience at the hands of hugely caring medical professionals in the last few months of her life. But when the young man told me about his baby daughter, everything changed. I just knew I had to write this story.
What he told me about his baby, when I met the baby herself – and her incredible mother – it all made me reassess my deepest values about life itself. It made me question my fundamental beliefs about when, in the face of seemingly insurmountable obstacles and a human life seemingly consumed by immense pain and suffering, it is time to say “enough”, to stop medical treatment and let nature take its course. For someone like my mother who had a full and productive life for nearly 90 years, the question (for me, at least) is relatively easy to answer. But when it’s a child – a baby? When there is even the slightest chance that that baby can overcome the obstacles to be well, to be happy, to be grow up… how can parents deny their child that opportunity? But at what cost? How do parents make such decisions?When is it time to simply say “enough”?
I asked the young man and his wife if I could write the story of their little heart warrior. They agreed, hoping that my efforts would help raise awareness of CHD.
I had intended this to be a non-fiction book. The mother welcomed me into their home and bravely shared herexperiences with me, despite this being terribly painful at time. And I met the little heart warrior herself – and fell in love with her incredible spirit, sparkling eyes and booming laugh. But, unsurprisingly, there were enormous gaps in the mother’s memory of events. Would you remember the doctor’s precise words when he tells you that if your eight-day-old baby doesn’t have immediate open-heart surgery she will die in weeks, if not days? Of course not.
As a journalist, I am passionate about accuracy and authenticity in my writing. If a book is presented as non-fiction, there cannot, for example, be “made up” conversations and dialogues presented in direct speech. There can’t be a fudging of important facts. I’ve never subscribed to the “don’t-let-the-facts-interfere-with-a-good-story” school of journalism. And to me, a non-fiction book is no more or less than another form of journalist. Facts matter. And, the simply truth of the matter was that I didn’t have all the facts.
If all that sounds incredibly self-righteous, I’m sorry. That’s just the way I am. However, I must also acknowledge that I was wrestling with another problemas well. The mother and father are amazing human beings: they are hugely supportive of each other, loving, generous, welcoming. In a nutshell (and the mother roared with laughter when I told her this), they are pretty “boring” characters. Where’s the conflict? Where’s the drama that would keep readers enthralled rather than drowning in an unrelenting liturgy of medical procedures?
So – with the parents’ blessing – I swivelled to fictionalising a great deal of the story. The medical aspects are as accurate I could make them, and – except for her changed name – I tried to portray the little heart warrior as accurately as I could. But all the other characters have been changed, as has the story’s timeframe. I’ve also included some totally fictitious events and, of course, introduced several emotionally fraught relationships. I was delighted when the mother said she thoroughly enjoyed reading about her altered persona.
I was also thrilled when Professor Rob Kinsley, a founder member of the World Society of Paediatric and Congenital Heart Surgery and the South African doyen of paediatric cardiac surgery sent me an email after reading The Heart Warrior’s Mother.
He wrote: “As doctors, we tend to overlook the extraordinary stress and hardship families are subjected to when a child is born with a congenital heart defect and embarks on the often long and tortuous road of correction, with an uncertain outcome… This well-written and enjoyable book should be read by every trainee (and trained) paediatric cardiac surgeon, cardiologist, paediatrician and others (to) give them a better understanding of the ‘complete’ picture, rather than simply ‘the patient’.”
And then he added: “The description of all medical aspects is amazingly accurate.” My journalist heart swelled with pride, gratitude …and relief!
Prof Kinsley also pointed out that most African children with CHD are denied life-saving corrective surgery because of limited state facilities across the continent as well as a desperate lack of funds. He was being generous – most public health facilities in South Africa (and Africa) are horrendous.
In 2019, Prof Kinsley set up a new organisation, The Children’s Cardiac Foundation of Africa (TCCFA), to “save the lives and improve the health of children born with congenital heart disease in Africa by raising funds for heart surgeries and by training specialists and support staff in the field of paediatric cardiac care”.
To thank and honour my little heart warrior and her parents, I am donating a portion of my royalities from The Heart Warrior’s Mother to the TCCFA. You can also contribute to saving the lives of little heart warriors by donating directly to TCCFA. Details are available on their website https://tccfa.org/
Kerry-Anne Aarons is over the moon. She and her husband, Imran Patel, are about to become the parents of a baby daughter, and give their son, Leo, an adored little sister. It wasn’t planned, but Kerry knows that Lily’s arrival will complete the perfect little family she has always wanted. She, Imran and their two children are going to live happily ever after…
Then life intervenes.
Lily is born with a serious congenital heart defect and Kerry’s battle to save her daughter commences. It’s a battle that takes her from the operating theatres and Intensive Care Units of local hospitals to the High Court of South Africa. It’s a battle that strains her relationships with her friends, her parents, and – ultimately – her husband. It’s a battle she is determined to win.
But how much will Kerry have to sacrifice to give Lily the future she deserves?
“A true, cross-generational story of the eternal link between love and pain… the greater the love, the more inevitable the pain. Marilyn Cohen de Villiers once again – with amazing skill – depicts the common humanity that transcends differing cultures.”
James Mitchell – former Book Editor, The Star, Johannesburg
A percentage of the proceeds of this novel will be donated to the Children’s Cardiac Foundation of Africa, an organisation that funds lifesaving heart surgery for children across the continent.
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I was born and raised in Johannesburg, South Africa, the youngest daughter of an extraordinarily ordinary, happy, stable, traditional (rather than observant) Jewish family. After matriculating at Northview High School, I went to Rhodes University in Grahamstown where I served on the Student’s Representative Council (SRC), competed (badly) in synchronised swimming and completed a B. Journalism degree. This was followed by a “totally useless” – according to my parents – English Honours degree (first class), also at Rhodes.
With the dawning of the turbulent 1980s, I started my career as a reporter on a daily newspaper, working first in the news and later, the finance departments. During this period, I interviewed, among others, Frank Sinatra, Jeffrey Archer, Eugene Terre’blanche and Desmond Tutu. I caught crocodiles; avoided rocks and tear smoke canisters in various South African townships as protests and unrest against the Apartheid government intensified; stayed awake through interminable city council meetings and criminal and civil court cases – and learned to interpret balance sheets.
I also married my news editor, Poen de Villiers. Despite all the odds against us coming as we did from totally different backgrounds, we remained happily married for 32 years and three days. Poen passed away as a result of diabetes complications on 15 March, 2015.
After the birth of our two daughters, I ‘crossed over’ into Public Relations with its regular hours and predictability. My writing – articles, media releases, opinion and thought leadership pieces and so on – was published regularly in newspapers and other media, usually under someone else’s by-line. I returned to my roots as a journalist in a freelance capacity some six years ago, writing mainly business and IT articles.
So why, after a lifetime of writing non-fiction, did I decide to try my hand at fiction?
The catalyst was the unexpected death of a childhood friend and colleague in 2012. This spurred me to take stock of my life, to think about what I had achieved. A few months later, I decided to try and write a novel. This turned out to be A Beautiful Family which was published in July 2014. The fiction bug had bitten, and my second novel, When Time Fails, was launched in September 2015, followed by Deceive and Defend, in 2018. Although this was not intended when I first started writing fiction, the three novels together constitute The Silverman Saga trilogy
Unlike my earlier novels, my latest book, The Heart Warrior’s Mother, was inspired by a true story.