Hazel McHaffie

conjoined twins

Conjoined twins

Tippi and Grace are joined at the hip – no, not in the usual sense of inseparable friends; they are literally conjoined at the pelvis, sharing blood and bone. They’ve been dubbed many things – freaks, fiends, monsters, mutants, a two-headed demon, grotesque, a person’s nightmare, devil’s spawn – malice and fear and ignorance colliding in a spew of abusive terms.

Each and every pair of conjoined twins is uniquely different, but …the details of our bodies remain a secret unless we want to tell.

However these two do want to tell: ‘It probably sounds like a prison sentence, but we have it better than others who live with fused heads or hearts, or only two arms between them. It really isn’t so bad. It’s how it’s always been. It’s all we know.’
Tippi and Grace have two heads, two hearts, two sets of lungs and kidneys, four arms. Their intestines begin apart then merge and below that they are one, with just one pair of functioning legs.

The principal narrator of One (by Irish writer Sarah Crossan) is Grace. With masterly understatement she describes the embarrassment of being constantly on parade during medical examinations, of being physically present at each other’s therapy sessions, of being ogled in the street by strangers. And the resentment of having to share each other’s sickbed, of gaining weight because of her sister’s appetite, of feeling drunk or high because of Tippi’s addictions.

Because the line between independence and co-dependence is a fine one. And Tippi is determined to go her own way, being so much more egocentric than her twin:
When Tippi wants something she takes it with two hands and with a body that belongs to us both. I know this should make me angry, but all I feel is envy because I so wish I could be more selfish sometimes too.

When at aged 16 they are finally allowed to go to school, they are surrounded by a peer group aspiring to be somebody – stars, celebrities. For them ‘normal’ is the road to nothingness. They seek to be different, to stand out. But for Tippi and Grace, normal is the Holy Grail and only those without it know its value. It is all I have ever wanted and I would trade weird or freakish or spectacular or astonishing for normal any day of the week.

They’ve always known the statistics are against them; in their early weeks their mother was told they wouldn’t see their second birthday. But they have defied expectation, they’ve survived to their teens. Now though, various physiological incidents remind them that, much as they might protest to their health team that they are ‘OK’, their bodies are telling them they are not.
As time ticks by the chances of us suddenly ceasing to be get quite high. That’s just a fact that will never go away.

Then tragedy strikes. Flu puts a huge strain on Grace’s heart and both girls rely more and more on Tippi’s heart working for both of them. Until that too shows signs of stress. If nothing is done, they will both die … soon. Serious ethical dilemmas present. With no dress rehearsal possible.

The risks are colossal. But are they better faced separate or together? And who’s to say?
When conjoined twins are separated it’s deemed a success so long as one of them lives. For a while. And that, to me, is the saddest thing I know about how people see us.

Ultimately this is a story about human love and resilience. It’s a YA book and written in a curious poetic style with sentences and paragraphs of varying lengths, neither of which would normally appeal to me, but of course, the subject did. Although it’s spread over 430 pages it’s read in a few hours, and what a moving and sympathetic way to introduce such important concepts to a young readership. I’m not surprised it has attracted so many literary awards.

, , , , ,


Extraordinary twins: Separate or together?

There are times in life where I’m rendered speechless in the face of courage or fortitude way beyond my comprehension. And this week brought just such a moment: listening to the parents of conjoined twins in the ITV/STV programme, Extraordinary Twins, and to the doctors who undertake this gruelling and risky surgery.

The questions are overwhelming and often unanswerable. As one surviving separated twin said, whatever you decide you will be criticised. Ethics may be my field of interest, but these issues are in a different league from most.

Not only do the families have to contend with the shock of discovery when scans reveal this extremely rare anomaly, but they are then faced with a raft of massive questions.
Do we go for abortion?
If not, how will we feel when they are born?
How will we deal with other people’s reactions?
How will we care for these children?
Will we choose to have them separated?
When is the right time to do so?
How will we cope if one or both then die(s)?
Can we handle the responsibility?
What will it do to us and our family?
Can we live with the sense of guilt?
Will the children resent/hate us for making this decision?
Tears at my heartstrings just contemplating these dilemmas.

All this came across powerfully in the programme, through the experience of families who’ve trodden this path. I was on an emotional and ethical roller coaster throughout.

For some, separation was impossible, the shared parts were too intimately and vitally interconnected and important to each. One set of sisters shared sensations: even feeling the other one being touched, and seeing what the other was being shown! Another set spoke the same words together. In other cases, where separation might be possible, a joint life was deemed better for them, and indeed was way more full than I could ever have imagined. Some pursued different careers, got married, drove a car together!

But for others, the advantages of separation were compelling, though the risks were always huge. The burden of responsibility came across powerfully through the experience of one couple who were very undecided about separation, and inclined to wait till the twins could decide for themselves. They were put in touch with another mum whose girls were joined in exactly the same way – separate heads and torsos, but just one set of legs. Her bright, bubbly girls were now leading separate lives, both with one prosthetic leg and a colostomy bag. Her advice was robust: we parents choose to bring our children into the world; it’s our job to choose what’s right for them. Don’t you want independence for them? she challenged. (This idea of parental responsibility was a view I heard time and again in my own interviews with parents of infants for whom life-and-death decisions had to be made, so it resonated with me.) But this couple remained undecided. They visited other families – where different decisions had been made, met the children, asked them the questions, listened with strong emotion to the replies. And bravely came to their own considered conclusion.

As for the surgeons concerned – well, I can’t begin to imagine the price they pay. The series of operations needed to separate conjoined twins is tremendously complicated and only a small number of surgeons in the world are skilled in this work. They plan meticulously beforehand, every move plotted and rehearsed before they ever pick up a knife. The theatre is packed with people and machinery. Some parts of the procedure take many many hours – in one case 17! Sometimes the surgeons’ stamina and ability to make decisions, as well as the condition of the children, makes it necessary to stop mid-operation and continue another day – seems impossible, huh? Sometimes sadly the separation is a success, but the babies suffer complications like brain damage or stroke. Sometimes they die. But these skilled and exceptional doctors not only bear the responsibility, but also engage emotionally with the families. It was so lovely to watch one cranio-facial consultant visiting the children he had separated, months after surgery, and playing with them so beautifully. Heroes without a doubt.

I salute them all. They moved me to tears. I have absolutely no idea what I would choose in these circumstances.

, , , , , ,


NHS successes and failures

Last week I had yet another full examination by a consultant as part of my follow-up cancer care. Meticulous head to toe inspection. I’m overwhelmed by the efficiency, skill and compassion I’ve experienced at first hand in the years since I had the primary tumour removed. It could not be bettered.

And who could fail to be awed by the detailed reporting by the BBC this week of the Pakistani conjoined twins, Safa and Marwa Ullah. Two years old and recently separated.

Vast teams of top ranking practitioners working to give those two little girls as good a future as possible. The sight of the grateful mother, a widow with seven other children, kissing the hands of the surgeons said it all.

But I’ve also seen things go pear-shaped – for relatives and friends as well as those I’ve read about. And according to the media, a new publication, the NHS Resolution report, provides a worrying picture of the rise in claims for compensation. In England alone, in 2018-19,10,678 new claims were made for clinical negligence. The costs in payouts increased by £137 million to almost £2.4 billion! (NB. this includes legal costs not just the money paid to the claimants.)  Mind blowing statistics, aren’t they? Furthermore some 10% of those claims related to perceived deficiencies in maternity care but, because these are extra costly, they represent a disproportionately high percentage of the total costs.



As the CEO of the Medical Defence Union said, this amount of money could have funded over 15 million MRI scans or 112,000 liver transplants. What a sobering reality check.

I feel a mixture of emotions: regret for those people whose care has fallen short certainly but also anxiety for those whose practice is called into question as well as for the NHS as a whole. Every example of negligence exacts a toll from the patients and families concerned. But the spiralling costs of compensating dissatisfied clients affects us all. Our world renowned health care system is buckling under the strain. Something has to give.

One of my ongoing files for a possible future novel is labelled RESOURCE ISSUES. My life-long aversion/allergy to numbers has kept it low down in the pile, but it might yet become a front runner if this state of affairs continues to escalate.


, , , , , ,


Splinter the Silence

In Splinter the Silence, Val McDermid explores the issue of internet trolling/hate mail/harassment/villification/abuse of women who put their heads above the parapet to speak about discrimination and injustice. In this fictional case, the public figures are apparently hounded to the point of suicide, although the reader knows from the outset that they are actually being murdered, each killing disguised to mimic the suicides of famous feminists. The murderer has his own reasons for objecting to women who step outside their domestic role and tell men what’s right or wrong.

Well, sadly, I know people in real life who would still tether women to the kitchen sink if they could. I have myself come in for criticism for being a woman and daring to voice and defend an opinion; for having ideas above my subservient station. Fortunately, positive responses have far, far outweighed the negative, so it hasn’t been that difficult to maintain perspective, but then, I’m not an A-list celebrity, so such pernicious or malicious activities don’t hit the headlines, the number of critics doesn’t reach stratospheric levels. Nevertheless, I can vouch for the discomfort of being on the receiving end of such unjust vitriol. It’s not as far fetched as you might imagine.

This week I’ve been thinking a lot about the matter of standing up and being accountable, and about all the cases coming to public attention right now that lend themselves to strong column inches. I’ll itemise a few, but please note, I have no privileged access to information on any of them, so the facts I include are as subject to distortion and prejudice as any other media-generated stories.

OK, serious time, folks. And in every case multiply the questions many times over.

Ten days after legally completing his transition from female to male, a transgender man, TT, underwent intrauterine insemination, resulting in a pregnancy. He has now taken his case to the High Court in an effort to be the first to have no ‘mother’ registered on the birth certificate. Hello? ‘Cake’ and ‘eat’ instantly spring to mind. Expensive legal and parliamentary resources are to be deployed to look into the ramifications of the current laws governing fertility treatment.
One British doctor is reported as saying, now that it is medically possible to transplant a womb into biological males, it would be illegal to deny them access to this opportunity to carry a child to birth. What do you think? Would it?
What about the rights of the unborn child?
One author of a letter to the Telegraph outlined the scenario and concluded, ‘The lunatics truly have taken over the asylum.‘ Do you agree? Or is this a case of establishing the deep-seated needs of people who have struggled all their lives with their dysphoria?

Then there’s the issue of rights and dignity and bodily integrity and mental welfare of female athletes with naturally high testosterone levels? Renewed calls have been made for such women to be given drugs to lower their levels before they compete, or for them to be channelled into other categories such as intersex competition.
What about the effect on these sportswomen of the abuse and accusations levelled at them?
Is it a fair playing field?
Other scientists have cast serious doubt on the integrity of the research behind this latest demand; how many people either know of this or have the scientific or mental wherewithal to judge the issue fairly?

Exactly four years ago, on their half-term break, Shamima Begum and two school friends fled this country, aged only 15, to join Isil and become jihadi brides. In those years, Begum has borne three children, two of whom died of illness and malnourishment. She has told the world she doesn’t regret her actions, that she was unfazed by the sight of severed heads, that’s she’s into retaliation, but wants to bring baby number three back to her home country.
We have no way of knowing just how much coercion lies behind her public pronouncements, but her responses to interviewers chill the blood. The government have refused to jeopardise more lives by sending anyone to rescue her, but at first the lawyers told us, she’s a British citizen, she cannot be rendered stateless, so legally speaking, there is no choice; we must have her back. Then a couple of days later we hear that no, the government are not obliged to repatriate her … and indeed the Home Secretary has revoked her British citizenship … she has dual Bangladeshi nationality … the baby has a Dutch father  …
What consequences should this girl’s actions have?
Whose rights take precedence?
What kind of a future lies in front of her or her baby son?
Who should assume responsibility?
Is it a measure of our own more civilised behaviour that we rise above the terrorists’ creed and show compassion now towards this girl?
What of all the other people who’ve dabbled in terrorism but who now want to return?And a zillion other questions.
No wonder opinion is divided.

Retired accountant, 80-year-old Geoff Whaley, diagnosed with MND two years ago, decided that an agonising and undignified death was not for him; he would go to Dignitas in Switzerland for a controlled end to his life. But his careful planning was threatened days before his proposed departure by the appearance of police at his door, interviewing his wife of 52 years under caution, in response to an anonymous tip-off. It was this unwelcome intrusion, coupled with the laws of this country opposing assisted suicide, not his impending suicide, that engendered fear and anguish in this man, provoking him to protest to the BBC and MPs:
‘The law in this country robbed me of control over my death. It forced me to seek solace in Switzerland. Then it sought to punish those attempting to help me get there. The hypocrisy and cruelty of this is astounding.’
Put aside for a moment your personal views on assisted dying, and ask, what could possibly have motivated someone to blow the whistle in this way at the Whaley’s eleventh hour? Genuine concern, self-righteousness, extreme religious views, a sense of public duty, malice? Or what?
Should other people’s private scruples be allowed to control the rights of families in such tragic circumstances?

Imagine being born in war-ravaged Yemen, stranded in a hospital in a country where social, political, economic and health care systems have all collapsed, where about half of the 28 million inhabitants are living on the brink of famine. Now add to that the babies being conjoined twins. Their picture appeared in the British press; the Yemeni doctors appealing for help from the UN to get them to Saudi Arabia.
What should our response be?
What is our responsibility in such cases?
What chance did they realistically have?
At least 6,800 civilians have been killed and 10,700 injured in the war, according to UN statistics. Did these two extremely vulnerable boys warrant such an exceptional rescue mission?
In the event they died in their homeland, but the questions remain.

I could go on … and on …

All the youngsters who become victims of disturbing material on line … the BBC being criticised for not offering abortion advice after an episode of Call the Midwife featuring a backstreet abortion … impecunious students being paid to contract dangerous tropical diseases like typhoid and malaria in the search for new effective vaccines … the matter of a 97-year-old Duke of Edinburgh flouting the country’s law on the wearing of seatbelts …

I have opinions on all these issues. You don’t have to listen to me. You are perfectly entitled to disagree with me – fundamentally and even vociferously. But you ought not to shut me up! Especially not in a threatening or damaging way.


, , , , , , , , , , , , , , , , , , , , , , , , , , ,


The Children Act

Mrs Justice Maye, Royal Courts of Justice, The Strand, aka My Lady, is 59, childless, a much respected High Court judge and concert-level pianist. Her days are dominated by a relentless workload and the endless responsibility of forming judgements in the Family courts. Humdrum divorces and decisions relating to child protection run cheek by jowl alongside seriously challenging high-profile cases fraught with moral challenges.

A strict Chareidi marriage is broken when the wife seeks to educate herself and base family life on reality not religious tradition. Thirteen years together, the arranged marriage, cultures, identities, aspirations, family relationships, loyalties, all are called into question. Fiona’s heart goes out to the two little Jewish girls caught in the crossfire.

Conjoined twins, infant sons of Jamaican and Scottish parents, one potentially viable, abnormally thin from the effort of sustaining two bodies, the other a fattening shell leeching off his brother, become the focus of a battle that has the world on tiptoes watching. On one side, the hospital, masked surgeons at the ready poised to save the life of one of the boys. On the other, religious conviction refusing to sanction murder, preferring to let both boys die rather than risk reinterpreting their rigid code. Fiona’s decision will become the purview of newspaper columnists, taxi drivers, the nation at large, all clamouring for justice and right, vociferous, all certain of their own angle on what that right is. But what is the solution?

A seventeen-year-old boy, with leukaemia, urgently needs a blood transfusion, without which he will die within days or, worse, survive with grossly disabling impairments. But the patient himself, Adam, and his parents, are devout Jehovah’s Witnesses; they will not compromise their beliefs even if it means he will lose his life. Fiona knows the world is watching and will judge her decision. She takes the unorthodox step of going to visit the lad in hospital, a meeting that will have a profound effect on both of them. I won’t spoil the book for you by spelling out the consequences.

As if this wasn’t all a burden big enough for anyone to carry, Fiona is dealing with a major domestic crisis at home. How can she keep the professional and the personal from encroaching on each other? Which takes precedence?

This story, The Children Act, nudges against my own field of interest, the philosophical and moral points interweaving with the legal decisions. Exactly the kind of issues I’ve debated long and hard. Replicas of the kind of cases I’ve followed closely in real life. But Fiona herself is steeped in precedent and the finer points of legal argument, well trained, very experienced. She’s quick to make the distinction: This court is a court of law, not of morals, and our task has been to find, and our duty is then to apply, the relevant principles of law for the situation before us – a situation which is unique.

This is author Ian McEwan at his best. Giving us a fascinating insight into a legal mind toying with the niceties of various options, arguments and counter-arguments, balancing emotional responses against professional duty. A mind that must cut through the various moral claims and determine the one course of action that will remain defensible under minute scrutiny, robust enough to become, at least in part, legal precedent in the future. And sometimes, where every choice has a downside, be bold enough to choose the least undesirable outcome, the lesser evil. Even, in extremis, be courageous enough to find argument in ‘the doctrine of necessity’ – an idea established in common law that in certain limited circumstances, which no parliament would ever care to define, it was permissible to break the criminal law to prevent a greater evil.

Small wonder that some of these cases haunt Fiona, leave her agonising internally, shrunken to a geometrical point of anxious purpose. She’s famed for her elegant summations, her cool detachment, her wise decisions, but even so, on occasion, she agonises retrospectively about her exact phrasing, her final judgement. And never more so than when she becomes involved with young Adam, only weeks from his eighteenth birthday, who is determined to hold fast to his religious heritage – even unto death. These cases leave scar tissue in the memory. They also attract opprobrium in the shape of a postbag of critical mail … there began to arrive in small pastel-coloured envelopes the venomous thoughts of the devout … some deployed abusive language, some said they longed to do her physical harm. A few of those claimed to know where she lived.

Sobering, too, to realise that there are other cases which fall outside the jurisdiction of judges like Fiona Maye, which would perhaps be even harder to bear. Cases reserved for the criminal rather than the family courts: children tortured, starved or beaten to death, evil spirits thrashed out of them in animist rites, gruesome young stepfathers breaking toddlers’ bones while dim compliant mothers looked on, and drugs, drink, extreme household squalor, indifferent neighbours selectively deaf to the screaming, and careless or hard-pressed social workers failing to intervene.

A slim volume, The Children Act, which came out in 2014, deals with a massive issue, and I highly recommend it. Last week supermarket Tesco was giving it away free of charge – presumably publicity for the film, starring Emma Thompson as My Lady, which comes out tomorrow. I plan to be there!

We duly went to the very first showing this morning and had the unnerving but rather special experience of being the only people in the whole cinema! The film’s superb and well worth seeing.


, , , , , , , , , ,