Author Hazel McHaffie reveals trauma behind her work

It was 40 years ago. No wonder, though, that Hazel can’t forget it. For there, lying before her was her perfect son, life seeping from his tiny frame.

“I found him moribund in his cot,” she says, recalling events as if they happened yesterday. “He was in the process of dying.”

A nurse and midwife, she was acutely aware that time was rapidly running out. So she bundled her tiny son into the family car and screeched, heart thumping, to the nearest hospital paediatric ward, swiftly bypassing accident and emergency where she knew her little boy stood no chance of surviving the delay.

There, Hazel watched a frantic attempt to find a vein in her baby’s tiny arm before desperate staff gave up and sliced open his leg, a last chance bid to feed him vital antibiotics. “Staff went into overdrive,” she recalls.

Of course, Hazel had far more knowledge than most of what was happening. And, in hindsight, perhaps that might not have been for the best.

For as baby Jonathan’s young life tottered precariously on a knife edge, Hazel wondered whether the uphill battle to try to keep him alive might come with too high a cost.

Perhaps a more loving and kinder act would be to simply allow him to die.

Hazel now regularly recalls that dreadful dilemma as she delves into the kind of medical quandaries and life-or-death decisions that confront doctors, nurses and medical science every day.

For what happened to Jonathan in 1971 drove her to switch her career from the medical front line to become one of the country’s most respected voices on issues of medical ethics. She would go on to write a BMA award-winning book which debated parents’ involvement in medical decisions concerning their children’s life prospects – today it’s regarded as a bible among healthcare professionals – and became deputy director of Edinburgh University’s Research Institute of Medical Ethics.

But while the issues surrounding medical ethics and so-called Frankenstein science are rarely out of the headlines – from questions over fertility treatments which discard dozens of healthy embryos on the road to creating one live birth to the sci-fi like possibilities of cloning and “designer” babies that await in the future – she discovered they had the greatest impact when she was able to move them from the laboratory and into real-life scenarios. Just like her own . . .

“People tend to switch off when listening to the theory behind it all,” says Hazel, now retired and who has just published her second novel themed around the controversial issues of contemporary medical ethics.

“We’re all much better at listening to real stories of people. But they are bound by the truth. So I thought a better way to get people to think about the issues that can affect us all, was to make them fictional.”

Her latest in a series of medical ethics novels is Saving Sebastian, set in a fictional fertility clinic in Edinburgh, where the nightmare of a possible embryo mix-up has led to a couple becoming birth parents to someone else’s child. While that issue threatens to tear staff and patients’ lives apart, the tension is fuelled by another patient’s plea for a “saviour sibling” baby, created from a specially selected embryo in order to help save the life of its desperately ill older brother.

Both are, says Hazel, very modern dilemmas which simply weren’t around in 1971, while she stood by baby Jonathan’s hospital bed and debated her own dilemma – whether death would be a blessed release from the nightmare life he might be facing.

“The consultant paediatrician came to see us,” says Hazel, who lives in Loanhead with her husband David, a retired Telford College lecturer. “He said he was really sorry but we had to prepare for the worst.

“But, against the odds, Jonathan did survive for a few days.”

But there was the underlying fear that such a fragile little life could hardly be expected to emerge from such a trauma unscathed.

“After three days the consultant showed me all the test results. He said ‘Look, there is no chance he will be normal, he will be mentally or physically impaired’.

“I went home on the bus praying that if that was the case, he’d be better just dying. I didn’t want that kind of life for him.”

Against outrageous odds, Jonathan grew stronger. He was physically and mentally perfect, later he went on to go to university to gain a first-class honours degree and a PhD. Today he works in finance, is married and has a family of his own.

Hazel concedes that changes in practice – ironically largely due to her own research that has helped ensure parents’ voices are heard at vital points in their children’s care – means if it happened today, the outcome might have been different for her son.

“At that time, doctors did what they thought was right. If it had been later and I’d been consulted on my wishes, I’d have said ‘don’t continue with treatment, let’s love him and wrap his short life up in love and care and give him the best life we can give him, but let him die’.

“And I would have deprived that child of a fantastic life and our family of a fantastic person.”

The experience hovers in the background of every ethical issue she looks at, acutely aware that the decision-making process is so finely balanced, so fraught and so complex and the results, sadly, can sometimes be fatal.

“We are all very fallible in decision making,” she agrees. “Doctors can be wrong. And I was wrong. Jonathan’s a very mature thinking person. He understands that it was what I felt was right at the time.”

But while that experience drove her to switch to researching medical ethics, even Hazel couldn’t have imagined the scale of scientific developments that would eventually further blur the boundaries between nature and science.

Cloning in the 1970s was the stuff of science fiction, genetically engineered embryos and face transplants more likely to be the subject of Hollywood fantasy than real-life dilemma.

But today the ethics debate stretches across all areas of medicine, from the creation of embryos to assisted death, from the Frankenstein idea of head transplants – an issue already raised by one American surgeon – to the notion that one day we will be able to re-grow body parts.

“Society’s expectations are very high. People have come to expect that everything will be done to save their loved one’s life without fully appreciating all the consequences,” Hazel points out. “People think ‘Oh, they can do amazing things these days’ and there’s this sense of high expectation that has changed how we make decisions.

“And there’s tremendous pressure on people’s rights. People have a right to have children . . . Well, have they? Who says?” she continues. “There’s an emphasis on equality, we have the right to have the latest things, the latest wonder drug, irrespective of costs and consequences.

“Take face transplants – how would you feel having someone close to you with someone else’s face? If you can transplant a face, what about a head? Or a brain?

“All that is fuelling the changes we are seeing today.”

There are, she says, endless ethical dilemmas and questions. The answers, however, are harder to find.

“The thing is, there’s really very few definitive answers,” she points out.

“It’s about all of us looking at our own values, systems, beliefs, history and deciding ourselves where to draw the line.”

• Saving Sebastian by Hazel McHaffie is published by Luath Press, £9.99. The book is being launched at Blackwell Bookshop, South Bridge, tonight at 6.30pm. For tickets, contact [email protected].

Giving birth to ever more difficult debate

From the first time someone used a herb or a concoction to save another’s life, medicine has been interfering with the nature’s course. But pushing the boundaries of medicine can throw up a whole raft of ethical dilemmas.

Just yesterday it emerged that scientists have found stem cells in human ovaries from which it may one day be possible to produce an “unlimited” supply of eggs, raising the possibility of life-long fertility.

But while fertility programmes bring baby joy for millions, a report last year revealed more than 30 human embryos are created for every successful IVF birth. Hundreds of thousands have been destroyed in the name of research over the past 20 years.

The debate over “designer babies” selected for their sex, health and for potential to save siblings’ lives – the theme of Saving Sebastian – rages on.

Cloning has dominated medical ethics debates since Dolly the sheep was cloned at Roslin Institute in 1996. And transplant advances are also fuelling the debate. In 2001 Professor Robert White from Ohio announced he had transplanted the whole head of a monkey on to a different body.