Hazel McHaffie

Downs Syndrome

Countdown

What a week. The brutal murder of MP Jo Cox; Tim Peake‘s return to earth after six months in space; an historic referendum on the UK’s position in Europe; … I’ve counted down to my own author-event at Blackwell’s Bookshop this evening, not just in days-to-the-referendum, but in significant news flashes. And I want to pay my own small tribute to Jo Cox and her family who have epitomised dignity, humanity, unity and compassion. If only her legacy could continue to overrule the vitriol and power-struggling and falsehoods which have characterised this campaign.

So, tonight we launch my latest novel, Inside of Me, into the bigger world, courtesy of Blackwell’s Bookshop in Edinburgh.

Stash of Inside of Me

I always knew it would be hard to do justice to this one without giving away a surprise but significant element which is only revealed at the end. So I had to explore various angles which might ‘sell’ the book to a live audience without containing spoilers. On this occasion I decided to concentrate on two points: body image and disappearance.

I suspect that only a tiny minority of people go through life perfectly content with their own body image; I’m certainly not among their number. All manner of hang-ups, me. All my life. And sobering statistics for suicide, mental health, eating disorders, self-harm, obsessions and addictions, cosmetic procedures, gender changes, all bear testament to a wider societal dissatisfaction. Small wonder, fueled as we are by the messages, overt and subliminal, from magazines and the internet; from social media; peer pressures; completely unrealistic expectations and cultural ideals. My book fits into this context, exploring what it means to live with unhappiness and troubled thoughts and unachievable goals.

One example will suffice: 15-year-old India Grayson looks in the mirror and perceives a size 3 body as grossly overweight. She aspires to have the courage to binge eat and deliberately vomit. Her mother can only stand on the sidelines, powerless to prevent her beloved daughter, on the very cusp of adulthood, starving herself to the point of collapse, forced to wait for medical intervention until the teenager is at death’s door or at imminent risk of significant deterioration. But India’s not seeking death; she’s seeking control. So how far should she be allowed to go along the path to self-destruction? What right has her mother to intervene?

Disappearance is the second recurring theme I chose to speak about. Three teenage girls vanish one after another. So does India’s beloved dad, leaving a neatly folded pile of clothes on a windy beach. Are these events connected? India’s mother has her niggling suspicions, doubts and fears but she’s suppressed them and certainly hasn’t shared them with a single soul. But now, eight years after his supposed suicide, India is convinced she heard her father’s voice on a crowded London station. She has to find him. The truth when it emerges is not what anyone expected; it challenges their notions of family and relationships, of image and identity. It makes us wonder, to what extent is it right to pursue our own goals and ambitions, when they conflict with the interests of others?

A-Lot-Like-EveAs part of my thinking about body image, I’ve been reading A Lot like Eve by Joanna Jepson. A newly ordained curate, Jepson came to fame in the early 2000s when she challenged the courts over cases of abortion for nothing more disabling than a hare lip and cleft palate. I remember her well – and her arguments. She was uniquely qualified to adopt this cause having herself been the victim of bullying and humiliation because of a facial disfigurement, and having also witnessed reaction to her brother who has Down’s Syndrome. What I didn’t know is how she has struggled with her faith and calling. This book is a moving exploration of her own battle to find acceptance and peace in her personal as well as her religious life.  And who else would see their calling to be chaplain to the fashion industry?

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What the papers say

This post should carry a government health warning: If you are quickly bored with facts or allergic to conundrums do not continue with this week’s blog.

I’ve always maintained that the subjects I write about are issues which challenge us as a society; they repeatedly hit the headlines. And this remains the case. To illustrate the point, I decided to monitor the medical ethical challenges that were reported in one newspaper (The Telegraph) for just one week (4-10 August 2014) and share with you what I found. Wow! Even I was bowled over with the sheer volume of material in this category in just seven days.

Please bear in mind as you read, that papers have their own agendas and the facts might not all be correct. However, on this occasion I’m not going to research every issue or attach links or hedge the topics around with qualifiers and alternatives; all these ‘extras’ would detract from my focal point. I’ll simply itemise the issue, and leave you to ask yourself: How would I feel in this situation? What would I do in these circumstances? What should society do? What is fair and just? What are the implications for educating the public, or our limited resources, or competing demands? … Or you can just accept the point if you prefer an easier life!

So … are you sitting comfortably? …

Perusing the newspapers

ASSISTED CONCEPTION

There’s been an outcry against the first national sperm bank (in Birmingham) which openly caters for lesbians and single women who want to start a family without having a relationship with a man.

The ongoing story of Gammy, the baby with Downs Syndrome (discussed in my last post) who was allegedly rejected by his commissioning parents following a surrogate twin  pregnancy, rolled on with almost daily updates unravelling more and more bizarre aspects, bringing the whole question of surrogacy under the spotlight.

A Japanese businessman is said to have fathered nine babies during the past two years using Thai surrogate mothers. Seven nannies have been hired to care for them. Reports vary as to his motives: from ‘he wanted a big family for himself’, to ‘he’s part of a child trafficking ring’.

ASSISTED DYING

Former teacher, Dawn Faizey Webster, has been in a locked-in state following a stroke at the age of 30, two weeks after giving birth to her son. She was featured this week completing a university degree 12 years later, by blinking using a laptop that translates her eye movements into text. And yet other people in a similar state are pleading for assisted dying because life is intolerable.

MATERNAL v FETAL RIGHTS

Women who drink alcohol during pregnancy slow the development of their children’s brains, reported researchers in Los Angeles. They compared the brains of children with fetal alcohol spectrum disorders and unaffected children over a period of two years.

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DEMENTIA

Saga conducted a survey of the over 50s and found that far more are afraid of developing dementia than cancer.

A study of 1658 Americans aged 65 and over has found that a severe lack of vitamin D appears to more than double the risk of dementia. But hey, the winter sun in the UK is too weak to generate adequate vitamin levels and older skin is less efficient at doing so. Cue salmon, tuna, mackerel and fortified foods etc etc etc.

A report from the Centre for Economics and Business Research has estimated that the number of people who are forced to retire early because they have (or a loved one has) dementia will double within 15 years.

PERSONAL LIBERTY v PUBLIC SAFETY

Several Britons have been quarantined over fears of the Ebola virus entering this country. It’s alleged that certain ‘special’ patients have been given specific experimental untested drugs to good effect which are not available to others.

MENTAL HEALTH

A nationwide survey of people with bipolar disorder, their carers and the professionals who treat them, is about to begin in this country. The researchers say it’s too often the case that other people remote from the sharp end are the ones who influence research expenditure; they want to remedy this. Critics question the morality of including people with mental illnesses.

A teenage girl in Merseyside took her own life after visiting pro-anorexia websites and self-harming.

ORGAN DONATION

A 24 year old, Stephanie Reynolds, has launched an appeal for a kidney for her mother via Facebook. Thousands of strangers from around the world have offered to be tested to see if they are compatible as potential donors. Her mother, Elaine, has an autoimmune element which means she cannot have an organ from a blood relation. The odds of finding a match are less than one in 10,000. Hence Stephanie’s Facebook appeal. Apparently such appeals have been successful in the USA.

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Shutterstock image

PUBLIC HEALTH and LIFE STYLE CHOICES

Grizzly bears gorge themselves and become obese prior to hibernation but they don’t get diabetes. Scientists are asking: Could this offer a clue for treating humans?

A report in Annals of Oncology has stated that if everyone between 50 and 64 took a low dose aspirin daily for 10 years it would prevent 6518 cancer deaths each year and 474 fatal heart attacks. But the price would include an extra 896 deaths per annum from strokes and stomach bleeds. (Hmmmm. This one affects me personally. Some years ago, taking that small prophylactic dose for only six months triggered lymphocytic colitis which has plagued me ever since. So I wouldn’t myself describe it as poetically as Christopher Howse: ‘Aspirins are the vanilla cynosure of the rattling world of pills; unsparkling but attractive, like pearls’. Not in my book, matey! Sorry, I digress.)

It seems that prostate cancer screening could save more lives than programmes to detect breast cancer – so says a European study of 162,000 men from 8 countries. That would mean saving around 2300 lives per annum in the UK. And yet … the research has concluded that such screening should not be introduced. Why?  Because a high level of over-diagnosis (resulting from the unreliable PSA test) would mean thousands of men going through needless treatment and ending up with incontinence or impotence.

RESOURCE ISSUES

A staffing agency, Prestige Nursing + Care, has issued new figures which indicate that pensioners’ incomes have fallen further behind the cost of care homes. This is adding to the pressure on NHS hospitals and putting vulnerable elderly people in danger. Also the number of people receiving home adaptations has fallen by 12% since 2010, heightening the risk and incidence of falls and injuries.

A report, The Future of Loneliness, has predicted that hundreds of thousands of pensioners will be all but cut off from services, shops and their local communities within 15 years because of the rise in the use of the internet. The result will be a hugely inflated risk of loneliness, already a worrying aspect of old age.

A ‘wonder drug’, metformin, normally used to treat diabetes, has been found to increase the life expectancy of patients with other conditions such as cancer and cardiovascular disease. This could mean an extra two and a half – three years for today’s 65 year olds. What’s more it only costs 10p a day. But hey, we’re already struggling with the problems of an aging society …

The National Institute for Health and Care Excellence has decided that a revolutionary drug, Kadcyla, that is said to give women with advanced breast cancer an extra six months of life, will not be available on the NHS because it is too expensive, even after the manufacturers have offered a discount. Countries elsewhere in Europe fund it. Ahhh, the old chestnut: if you look at the individual cases, doesn’t every family want to hang on to their loved ones for as long as possible? – well, most families anyway. But add up all those astronomical bills and balance them against only a few more weeks of life and set that against all the other treatments competing for the limited pot of money, and the perspective looks different.

Researchers at Imperial College have found that injecting a patient’s CD34+ stem cells into their brain following a stroke encourages tissue repair and may save them from death or severe disability. However, an expert has said these improvements could just be due to chance or the special care this small safety trial has provided for a tiny number of patients.

FAILURES IN CARE

The Care Quality Commission has admitted that at least 750 homes providing care for the elderly and disabled have been failing to attain at least one basic standard for more than a year. Why? Because the CGC feared legal threats from the owners of the homes. As a result vulnerable people have been knowingly put at risk. The CQC say that a new regime is being introduced to make protection much more robust.

Official statistics on NHS waiting times have revealed that the number of patients forced to queue in ambulances outside A&E departments has almost doubled in three years. In addition, over 3 million people are now on waiting lists for operations – a rise of 700,000 compared with 2010 figures.

Phew! As you can see, I shall never run out of triggers for new novels! I’m constantly thinking, What if ……?

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Perfection

Did you follow the Glasgow 2014 Commonwealth Games, I wonder? I dipped in and out, marvelling all the while at the stunning abilities of these top athletes – their skill and stamina and flexibility and sportsmanship.

The real highlight for me, though, was the diving in Edinburgh. Watching Tom Daley somersaulting from the highest board, executing perfect twists and turns, entering the water so cleanly that the surface was barely disturbed, left me breathless (and anxious!). And the 14 year old Matthew Dixon; how did he feel perching on the very edge of that board 10 metres up the very first time he tried it? How did his mother feel with his hurtling brain so close to that unforgiving concrete? My heart was in my mouth, never mind hers! (Even the more experienced Daley says: ‘When you look down, your knees go weak, your legs turn to jelly and it’s terrifying.’) And then there’s the synchronised diving. How two people can execute identical moves simultaneously during that brief and rapid descent, is beyond my comprehension. This is surely a kind of perfection writ large.

Perfection, ahhh – that brings me to this week’s story of the baby born to a Thai surrogate mother, who has allegedly been abandoned by his would-be parents because he isn’t perfect. Baby Gammy has Downs Syndrome and other co-morbidities. Of course, we don’t know the minds of any of these characters; we only know what the media tell us, and some sources cast serious doubts on the authenticity of this account and the credentials of those most concerned. Double TroubleBut picture the scenario from the point of view of the commissioning couple: instead of a beautiful healthy child to bring up and launch into the world, the prospect of a short and difficult life for their baby, and the grief of losing him. This wasn’t what they signed up for. The story is that they have elected instead to take Gammy’s healthy girl twin, and to leave the damaged baby behind. (They themselves are variously reported to have asked for Gammy to be aborted, or to have said they were only offered the one, or to have been informed that Gammy had only a day to live and his mother wanted him to be buried in Thailand.) So what of the surrogate mother? The papers report that she has rejected all offers from other couples to adopt her son and intends keeping him and loving him for as long as she has him. Apparently thousands of well-wishers around the world have begun donating money online to enable this impoverished woman to do just that. Whatever the truth really is, this difficult story has highlighted some of the many ethical issues associated with surrogacy. I’ve had an ongoing interest in this topic ever since I researched it for my novel, Double Trouble, but what do you think of the rights and wrongs of this case?

The Behaviour of MothsIt was entirely by chance that this week I read The Behaviour of Moths by Poppy Adams – which was given to me by friends who came to stay a couple of weeks ago – and found that it also includes a surrogate pregnancy. It’s a most unusual story and it wasn’t until P126 that I began to understand why they chose it for me; and not until P155 that all really became clear. After that I was glued to it. I don’t want to spoil the dramatic tension for you, so I’ll simply say that it tells the story of two sisters brought up by eccentric parents in a rambling Dorset mansion. The elder girl, Virginia/Ginny, becomes apprentice to her semi-detached father who is a reputable and dedicated lepidopterist. Together they hunt and study every kind of moth they can find, conducting experiments on them, researching their behaviours, amassing a formidable laboratory and collection.

The story begins with Ginny watching from the first floor for the arrival of her ‘little sister’, Vivien/Vivi, returning after decades of absence. Through the lens of Ginny’s peculiar take on life, it recounts each day of one week in their lives when they meet, as old women, one last time. Slowly, gradually, subtly, we piece together their experiences, feelings and differences as they re-live their childhood, and try to resolve the legacy of the past and the accumulated burden of their emotions. And yet … well, how much of this can we really believe? From the time Vivi falls out of the bell-tower and is nearly killed, it’s like a collapsing column of dominoes, each one nudging the next towards an inexorable conclusion. The Behaviour of Moths is a haunting tale, and I’d love to have a one-to-one chat with the author about her thinking, especially about the character Ginny; I’m not at all sure I have understood her correctly.

But to return to the topic of perfection, at one point in the book, Arthur, a troubled young father says: ‘You can’t choose your children. You can’t take the best ones, the ones that survive, the ones that are born the right colour. If you decide to have that child you must take it, whatever happens. You must claim him.’  When things go wrong, the surrogate mother concludes, ‘If it survived it was hers; if it died, it was for me to mourn.’

Uncanny, huh? It could have been written with the Thai family, and the Australian commissioning couple, and baby Gammy in 2014, in mind. And yet this was published in 2008. And is fictitious.

Speaking of perfection … the lilies in our garden are blooming in profusion right now. We have massive banks of them in the house and still a proliferation in the flower beds. Now there’s perfection of a different order, huh?

White lily

Yellow lily

Spotted lily

Red lily

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