Hazel McHaffie

genetic inheritance

Blue-Eyed Son

I’ve personally never actually gone through that phase of wondering if I was adopted … too many strong familial traits from both sides to allow of any doubt! But it’s a topic that’s certainly come under the microscope in my professional life in relation to medical ethics.

Radio presenter and TV personality, Nicky Campbell, always knew he was adopted and it seems appropriate to talk about his story in the week a teacher whom he accused of abuse during the 60s and 70s has been named – hitherto this man was a ‘protected person’ legally.

Nicky was fortunate enough to be brought up by a strong loving family. Dad was a map publisher and erstwhile major in the Indian army; Mum a psychiatric social worker. They had one other child, Fiona, five years older, and were keen to adopt to give her a sibling after four miscarriages. A GP friend who knew Nicky’s biological mother, made the necessary arrangements. Those were the days!!

Though they were not well off, his parents paid for a private education for him in Edinburgh, and he graduated with a degree in History from Aberdeen University, before moving into the world of radio and TV where he became something of a celebrity.  So content and safe was he in this warm and loving family that he felt no need to try to find his biological family until he was 29 and going through an emotional quagmire himself, a slough of marital despond, as he phrases it.

His autobiographical book, Blue-Eyed Son: The Story of an Adoption, has instant impact:
I was committing adultery in Room 634 of the Holiday Inn in Birmingham when my wife rang to say they’d found my mother. It was ten thirty on Saturday morning.

Biological mother is Stella, an Irish protestant, well educated, and aged 37, respected Matron of a hospital in Dublin, when she had him in Portobello, near Edinburgh, beside the sea.
I was born at 8 a.m. on 10 April 1961 … in an out-of-the-way downstairs room at [my mother Stella’s] Portobello digs … I arrived after only an hour’s labour and was delivered by the landlady Mrs Blackie herself with Stella, who was of course a qualified midwife, yelling instructions through the pain.

Stella was inconsolable when she walked away from her baby boy aged 5 days, an emotion Nicky could only really appreciate when he had his own children. But he recognised that times, pressures and prejudices back then were very different. Stella had already given up another baby, Dierdre, eighteen months before. He was picked up by his new family at one month. For three years Stella inquired about her baby boy from the GP, but then severed the link. Later she was diagnosed with manic depression, and she harboured other deep-seated issues: she never forgot or forgave her fiance (a doctor) who betrayed her with a young nurse while Stella was in hospital with TB. Her subsequent marriage to a violent and ‘satanic’ Irish ‘gnome’, who beat her all the time, lasted only four and a half years.

At the point in his life when Nicky met Stella for the first time, his own state of emotional turmoil left him with limited resources to respond to her emotional needs or understand them. But by the time he was united with his sister Deirdre (by now known as Esther) he was in a much better place in a new more stable relationship with his future wife Tina. The two siblings developed strong bonds.

It was a further twelve years, and three children later, before he began the search for his biological father. Joseph was a Catholic policeman, and a lot younger than Stella. Nicky and he established an instant rapport. They had the same blue eyes, the same stubby fingers, unmistakably father and son, and again, Nicky discovered a raft of new relatives came in the package. But when Joseph shared his political thoughts and aspirations, Nicky discovered a serious mismatch between the principles of his adoptive Protestant father and the philosophy of his biological one. He struggled to reconcile their different value systems and judgements. Which inheritance would he lay claim to? It was Joseph who summed it up:
I’d have no right to judge you. Just a duty to understand.
And that’s exactly the philosophy Nicky tried to espouse.

Alongside the exploration of his own lineage and inheritance, Nicky shared his sister Esther’s search for her biological father, and they together discovered unexpected links in their history, alongside jointly building a relationship with each other and with their mother.

Last year Campbell attracted media attention by revealing the sexual and sadistic abuse which took place at his private school when he was ten, but this has not been allowed to dominate the main story of his adoption in this book. It’s a very personal account, the more colourful for the backdrop of the Irish troubles, but through it all the bonds of family and shared history emerge as beyond price.

 

 

 

 

 

 

 

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Stress busting!

I’ve been reminded all over again this week of the importance of books in the nation’s health; never, I suspect, has that need been greater than now when a pandemic is threatening our very foundations and security.

It’s been an uncharacteristically stressful week in my own little world, most of it stemming from the vagaries of technology. Frightening how much we depend on the internet and all things electronic in our everyday lives, isn’t it? Being without connections feels like working with one and a half broken arms.

But I know that my personal stresses are as nothing compared with those of countless others during this time of Covid. The BBC wheeled out some big guns in the world of psychiatry during the past few days, who all tell us about the abnormally high incidence of worrying symptoms for mental illness, symptoms sufficiently serious to warrant medical intervention under normal circumstances.

Well, I’ve always been acutely aware of the fine dividing line between normal and abnormal when it comes to mental health. I rapidly but determinedly side-stepped psychiatry in my training, even though the way the mind works and its link with physical health fascinate me. And I’ve never forgotten the patient who first alerted his family to pathological disease when he started cutting his sausages lengthwise … but that’s another story. This week, when things started unravelling for me, it was time to segue into active stress-management mode.

Aromatherapy, mental puzzles and games, exercise, relaxation techniques, helping others less fortunate … the whole gamut came into play. And breathe … And relax …

But of course, books remain one of my main go-to resources. There’s nothing to beat losing yourself in another world. And in this context all I need is something unexacting but gripping. Time to turn to a tried and tested author: Harlan Coben.

I have a stack of his books on my shelves for exactly this kind of situation; these are just a selection, collected over many years. First off the shelf was Run Away.

First page, opening paragraph  …
Simon sat on a bench in Central Park – in Strawberry Fields to be more precise – and felt his heart shatter … he stared straight ahead, blinking, devastated …

and I’m already asking who, what, why, when?

His once lovely daughter Paige – who ran away from her comfortable, professional, stable, ordered family life, to shack up with a criminal and wallow in addiction, has been seen busking in that very park where Simon sits with his heart splintering into fragments. Watching her. He’s appalled by what he sees: a malodorous, strung out bag of bones with matted hair and yellow teeth and a cracked voice. Trickster, manipulator, thief. And that encounter leads him deep into the dark and dangerous underworld that swallowed her up – guns, violence, murder, drugs …
because if someone hurts your daughter, a father has an obligation to stop him, no matter what.
But when the man who took her to this hellish place is murdered, Paige vanishes. He’s lost her again.

A second plot line shows a series of young men being targeted and killed. Why? What’s the connection? I twigged the ‘what’ by P167, and the ‘who’ by P194, but not the ultimate ‘why’… P319. Kept me turning the pages. Better still, it crept close to my own field of interest – genetic inheritance, infertility, adoption, ethics … now you’re talking my language!

And all the threads don’t fully come together until the epilogue. The work of a devilishly clever mind. And balm to my troubled one.

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Modern medical challenges: What do you think?

I’ve just had another filing morning – yawn, yawn. (For new visitors to my blog, that means tucking an accumulation of snippets and ideas into files on different medical ethical topics which might or might not become novels one day.) So I thought I’d share some of the news items with you and throw out a few thoughts for you to ponder or not as you feel so inclined. I’ve supplied links for extra information if you’re interested. No pressure.

Gender issues

An 8 month old Canadian baby has been issued with a health card that doesn’t specify the child’s gender. Single parent Kori Doty is a non-binary transgender person who wants baby Searyl to decide for *themself how *they wish to be recognised.
(*parent’s chosen pronouns)

Over here, the number of children under 10 being referred to gender identity clinics has quadrupled  in the past five years – figures showed that of the 2,016 referrals for children between the ages of 3 and 18, no less than 165 were under 10. (stats from the Gender Identity Development Service – the NHS’s only such facility)

Two young British men (Hayden Cross and Scott Parker – one 21, one 23) have gone public about putting their gender reassignment on hold until they’ve given birth. Both were born female, both have been living as men for a number of years.

And now there’s talk of transgender women receiving donated wombs. It’s a complicated enough process in biologically female patients, with significant risks to mother and fetus during pregnancy. But those who are born male have other issues to contend with such as an inadequate pelvis for giving birth naturally.

A hotter topic seems to be the growing number of transgender people who are seeking reversals, quoting crippling levels of depression and suicidal thoughts, but this development is being kept very quiet according to Prof Miroslav Djordjevic who runs a clinic in Belgrade. Some specialists fear that money plays a part in this with patients accepted for reassignment as long as they can supply the requisite cheque without adequate psychological evaluation and counselling.

Q. What do you feel about
the move to have non-gender specific loos and forms and facilities?
– a lower age limit for reassignment?
– young people who’ve started to transition wanting to call a halt to have babies while they still can?
those subsequently wanting to reverse the process?
transgender women having a womb transplant and giving birth?

Genes and inheritance

The Chief Medical Officer has advocated DNA gene sequencing for every cancer patient in Britain to prevent misdiagnosis, needless hospital visits and ineffective chemotherapy. Testing can correctly identify not just the actual illness but also specific mutations which play a significant role in the success of treatments. On the face of it it’s a big ask: more than 350,000 people are diagnosed with cancer annually and at the moment each DNA test costs around £600. But centralising the testing would reduce the individual costs and personalising the drugs used should speed up treatment and save the NHS a lot of money.

Charlotte Raven was unaware that there was Huntington’s Disease in her family until her father – newly officially diagnosed himself – told her when she was 36 and already had one child. Now aged 48, she’s had symptoms for 7 years and estimates she has at best 10 years to live. She has two children both of whom have a 50% chance of inheriting the illness.

Q. What do you feel about
– the proposal to gene sequence every cancer patient?
the potential discrimination in favour of cancer patients when other disciplines are seriously strapped for cash?
– having the definitive test for a crippling inherited disease yourself?
– the optimal age to tell a child they have a 50% chance of inheriting a degenerative condition?

Fertility

According to research led by a Hebrew university which tracked over 40,000 men, since 1970s sperm counts have fallen by almost 60%. These findings have been likened to the canary in the coalmine – indicative of changes in society and the environment that are damaging health far beyond fertility. Just what should we be doing about chemical pollution, stress, obesity, tight underpants?

A British-born Sikh couple, Sandeep and Reena Mander, whose parents came to this country from Punjab, have launched legal action against the adoption service in their county, Berkshire, after being refused permission to adopt a white child because of their ‘cultural heritage’. The council have only white babies on their register. This professional couple are in their early thirties and have already undergone 6 years of fertility treatment (privately financed to the tune of c£150,000) unsuccessfully. And they have the backing of their local MP – the prime minister, no less! They have now been cleared to adopt in the USA – another extremely expensive procedure.

The senior council of the Royal College of Obstetricians and Gynaecologists – without balloting its members – has voted by a majority to decriminalise abortion at any stage of a pregnancy on the grounds that it has a responsibility to protect women’s health by ensuring access to key services. It isn’t, however, advocating changing the current 24-week cut off period for abortions; rather it seeks to have the restrictions governed by professional regulations not the criminal law.

Scotland has introduced two new changes this month:  women from Northern Ireland can now get free abortions here, and women are allowed to take the abortion bill at home instead of having to be admitted to a clinical setting. i

Q. What do you feel about
– the implications of falling fertility? Should society be being more proactive in your view?  If so, how?
– i
nfertile couples incurring massive expense trying to have a baby?
adoption agencies discriminating in terms of ethnicity, faith, geography, etc?
the availability and legality of abortion?
– the risks to women of inducing abortions at home?
– medical tourism?

Not to mention all sorts of stories and news and stats on NHS resources, performance targets, shortage of health care professionals … never any shortage of material to fire the grey cells and indignation, and get the creative juices flowing. What if …? Supposing …? Imagine if …

 

PS. I’ve done my best to check various sources but please do post a comment if you have more information that runs counter to the brief synopsis I’ve offered.

 

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Eugenics: fact and fiction

QuestioningYou’ve probably already heard of the American Eugenics Sterilization Program, in operation in the late 19th, early 20th century. If not … a quick résumé by way of context for today’s post.

The ‘program’ was designed to preserve and improve the strongest and ‘best’ within the society, and it did so by preventing the birth of babies to men and women with mental and social problems: the ‘mentally defective‘, ‘morons‘, the ‘feeble-minded‘, those with epilepsy, families on ‘welfare‘ – the very language makes us cringe today, doesn’t it?  But sterilizing these unfortunate citizens was considered to be in the ‘public good‘. It was later judged – rightly – as a terrible violation of human rights, but it’s only in the last few years that any sense of justice or compensation has been offered.

Most states stopped this practice after World War II, uncomfortable with the comparison with the Nazi eugenic experiments in Germany, about which much more is known, but North Carolina continued, and is said to have carried out as many as 7600 such operations between 1929 and 1975. North Carolina was also the only state to give social workers the power to petition for the operation for specific individuals; elsewhere it was limited to those already in institutions.

It’s against this shameful period of American history that Diane Chamberlain Necessary Liessets her novel, Necessary Lies. As a former social worker herself, she’s probably got a certain edge when it comes to writing on this subject; she beautifully captures the ambivalence some professionals felt in determining what was in the best interests of their clients at a time when few choices existed; punitive views relating to sexual behaviour were prevalent; little was known about genetic inheritance; racial intolerance was rife; and class distinctions were very much the norm.

Jane Forrester is a young idealistic woman, newly married to a doctor, Robert, who disapproves of wives working. Jane unilaterally decides to postpone having children herself in order to become a social worker and help vulnerable families. When she encounters the Harts – two teenage girls, an illegitimate son, and an ageing grandmother – living in abject poverty, she simply cannot stand by while their rights are abused by well-meaning professionals. Before long she’s in deep trouble with her husband, her colleagues, and the police.

Chamberlain herself acknowledges that this was a research-heavy novel, but it doesn’t come across that way. The simplicity of the narrators’ voices, the un-sensationalised story line, the authentic emotions, combine to make this tale both challenging and gripping, heart-stopping and powerful. I’m not sure I’d have had the courage to be a Jane Forrester, but I’d definitely have wanted her on my side, deceptions and head lice notwithstanding! How about you?

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Cursed inheritance

As I promised last week, good news this time!

Eight or nine years ago I chose Motor Neurone Disease for the degenerative condition journalist Adam O’Neill is battling with in my novel, Right to Die; Right to Diea disease that will strike right at the heart of his being and his aspirations. So I was fascinated to find Lisa Genova chose Huntington’s Disease for her tough Boston cop Joe O’Brien in Inside the O’Briens, a disease that stops his career dead in its tracks and forces him to face the horrors of genetic inheritance.

Both MND and HD are frightening, crippling, fatal conditions that rob the person of control and dignity. Getting inside the mind and body of either an Adam or a Joe is very scary stuff. So, having been there myself, I was extra curious to see how someone else tackled the ethical minefields and personal challenges associated with such a scenario; especially someone with Genova’s credentials.

This time she has inserted occasional tracts of medical explanation about the condition into her novel to inform the reader, positioning herself as a scientist; but for me her real strength lies in her ability to describe the illness from the inside. She puts the humanity into the science, compassion into the clinical facts. The insidious onset before policeman Joe even suspects the truth. The sudden weird and inexplicable bursts of anger. An inability to process instructions. Finding it impossible to keep legs and feet still on parade … in police exercises … in a restaurant. And then, once he’s diagnosed, the inexorable progression. The involuntary indiscriminate throws – punches, food, cutting words – that label him as drunk, deranged or dangerous to passers by. The red rages that cause his wife Rosie’s black eyes, terrible destruction in the walls of the family home. The fear that won’t let him ever hold his grandson. The depression that makes him constantly check his gun is still loaded and primed.

We peer into his past when Joe recalls his mother’s antsy wild black eyes as she lay in a mental institution for years; condemned to be known as an incurable drunk. The questions hitting him now nearly forty years later. How could she have remained an alcoholic in the hospital all those years? Why had his father stopped taking Joe and his sister to visit her? Why had his strong dad wept like a baby? What lessons did she actually teach him?

The author powerfully captures the brutal reality through the eyes of the rest of the family too:

Inside the O'Briens‘Huntington’s isn’t the absence of moving, thinking, and feeling. This disease is not a transcendental state of bliss. It’s a complete freak show – ugly, constant, unproductive movements, uncontrollable rage, unpredictable paranoia, obsessive thinking.’

We see the dawning terror in his wife’s eyes. Her silences. Her withdrawals. Her desperate stroking of the crucifix round her neck, the beads of her rosary. Her binning of the symbols of her ingrained Catholic faith.

Then there’s the terrible implications for their four beloved offspring. Vegan yoga teacher, Katie, living life in ‘peace, health and harmony’. Ballerina Meghan, limbs and body and mind all supple, beautiful, desirable. Firefighter JJ, taking his health and fitness for granted, using it to save others; preparing for imminent parenthood with his wife Colleen. Rebel Patrick, sewing his wild oats liberally, experimenting with life. Each one of them carrying a fifty percent chance of harbouring this cursed disease. Nothing can change that fact. Nothing can halt, slow or reverse this terrible thing. Joe, their father, is powerless to protect them. Indeed it was he, their supposed protector, who handed on the poisoned chalice in the first place. And now he must stand on the sidelines and watch them all battling with the impact of their cruel inheritance. Only they individually can decide whether to take the test, if they want to know the truth lurking unseen in their own DNA. JJ and Colleen may not even choose on behalf of their baby son.

How should Joe deal with his burdens? Is there a way out? Should he take it? How can he best support his children? Should the youngsters go for testing? What are the implications if they do/don’t? Would I want to know?

I love books that are at once a gripping read and challenge me to think deeply – especially in the field of medical ethics. And even though I’ve been into these questions already myself as an author, I thought this book was brilliant and awarded it five stars. Beautifully written, compassionate, perceptive, engrossing, provocative. Genova at the top of her game again. Seems I prefer her as neuroscientist-turned-novelist rather than simply novelist. That could well be something to do with my own position on the spectrum; nevertheless the experience of reading Love Anthony and Inside the O’Briens one after the other, has taught me something of value for my writing too.

So, Genova has already tackled Alzheimer’s, Left Neglect, autism and Huntington’s. What next? MND, she says – or as she calls it ALS. Ahah! I await that novel with bated breath!

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