Saving Sebastian
IVF – a luxury or a right?
It’s odd how when your mind is steeped in a particular subject you see related things everywhere, isn’t it?
As part of preparing for the publication of Saving Sebastian I’ve been thinking a lot about fertility treatments, the rights and wrongs, benefits and risks, should we-shouldn’t we? Because as well as working on the book itself, I’ve had to bend my mind to the assorted peripheral tasks that dog any writer – publicity and marketing, updating my website, events, that sort of thing. Not nearly as much fun as the creative writing but just as necessary, I’m afraid. Anyway, I was deep into drafting questions for bookclubs, and challenges for teachers and students of related subjects, when lo and behold, two articles jumped out at me.
One was a news item saying that a Brazilian fertility expert – the very one who helped the famous footballer, Pelé, become the father of twins – is suspected of having deceived patients at his Sao Paulo clinic into raising children who were not biologically their own by implanting other couples’ embryos to boost his success rates. Wow!
And why did this leap out and sock me between the eyes? Because in Saving Sebastian, a Nigerian couple have twins through IVF – one black, the other coffee coloured – and there’s a big old stooshie going on in the fertility centre to establish just what went wrong. Was it deliberate? Was it a genuine mistake? Is there something else lurking in the undergrowth? Too bad real life beat me to it, eh? If my publisher had stuck to the original publication date of 1 May my novel would have been out a fortnight before this Brazilian story broke. Heigh-ho.
The other sucker-punch was by Daily Telegraph columnist, Dr Max Pemberton (16 May). He starts by saying he thought long and hard before writing this particular article because he knew he’d attract condemnation. OK, I’m listening, Doc. The gist of his argument – please note his not necessarily mine (I want to keep my powder dry meantime!) is
- the NHS is strapped for cash
- hard decisions have to be made about how to use limited resources
- there is now an expectation that the NHS will provide fertility treatment on demand and the belief that everyone has a right to be a parent
- childlessness is not a disease but a grief based on people being unable to have what they want
- in these straightened times life-threatening and debilitating diseases should take precedence
- therefore, he concludes, ‘IVF is a luxury the NHS just cannot afford‘.
And the relevance of this piece? Well, in Saving Sebstian, Yasmeen and Karim Zair are fighting to have a baby by IVF who is the same tissue type as their son, Sebastian. The little lad has a rare blood disorder from which he will die if he doesn’t get stem cells from a saviour sibling. And already he’s having punishing treatment to keep him alive. At four years of age … imagine! Should they be allowed to have this treatment? There are plenty of people opposing them. What do you think?
Maybe reading the book will help to crystallise your own thinking so you can agree or disagree with Max Pemberton more logically. But in the meantime please do have your say on my blog if your dander is up, steam is exploding out of your ears, and you feel like adding to the debate right now! You can always publish an addendum or a retraction later. Remember …
The man who never alters his opinion is like standing water, and breeds reptiles of the mind (William Blake).
Congenital defects and moral dilemmas
I couldn’t have dreamed up a better precursor for my forthcoming book Saving Sebastian, due out on 1 July. But honestly, I hadn’t so much as whispered in the ear of the BBC.
The documentary, So What If My Baby Is Born Like Me?, went out at 9pm on 19 April on BBC Three, but the main players were also interviewed on various newsy programmes. The story featured Jono Lancaster, and was both poignant and challenging. Jono has Treacher Collins syndrome, which essentially involves deformities of the face and ears, but normal intelligence. And Jono’s intelligence certainly shone through, as well as his honesty, courage and thoughtfulness.
The thrust of the programme was whether or not he should father a child naturally with his girlfriend of four years, Laura. They both want children, but Treacher Collins is hereditary, and they run a 50/50 chance of having a baby with the same condition. But no one can predict how severely it would be affected. As well as the distinctive facial irregularities, some children require tracheostomies and tube feeding, some are profoundly deaf, some have cleft lips and palettes. In the course of considering their options, Jono and Laura met a little girl, Maisie, and saw firsthand what such anomalies mean to parents. And to the child.
And Jono knows only too well the reactions anybody with the condition will encounter. He’s even been vilified for daring to have a relationship with a pretty girl! And Laura is indeed very attractive, as you can see. Jono’s own biological parents were so appalled by his appearance that they rejected him from birth. He was taken in at two weeks of age by an amazing woman who’s fostered over twenty children. She admitted that Jono had occupied a very special place in her affections and she’d formally adopted him. Watching them together was a delight.
But before you condemn his natural mother, ask yourself, how would you react to being handed a baby looking so different from your expectations? Or walking down the street with a child whom everyone stares at? Take a look at these photos and imagine the scenario; ask yourself the questions, if you dare. I studied dozens of them and I confess I didn’t like the answers.
However even Jono’s adopted mum couldn’t help him with the quandary he was in now. As she wisely said, you might think you know what you’d do in these situations, but no one can say for certain what they would do in reality. You can’t know until it happens.
It’s a tribute to her love and acceptance and sound common sense that Jono’s instinctive preference was to adopt. Laura though, wants her own child. In an effort to work though the possibilities, they seek advice and counselling; they visit families who’ve faced some of the same dilemmas. One option they have is to go for IVF with PGD – essentially this involves creating an embryo using their own sperm and eggs, then testing it to see if it carries the defective gene. Jono seems initially to be labouring under the mistaken idea that the faulty gene would simply be removed. When he finds that the whole embryo would be destroyed, he’s morally outraged. For him this is ‘an insult’, ‘disrespectful’ to all people with a deformity or genetic disorder. The fact that he himself wouldn’t exist if this facility had been offered, gives his outrage special emphasis and extra weight.
Listening to this young couple grappling with the dilemma was peculiarly arresting even for battle-hardened me. Something so natural as having a child is for them a major issue with endless questions, doubts and fears attached. 
Jono’s ‘morally wrong’ argument is a massive stumbling block to progress, but in the end their conclusion is that, for them, it feels right to go for IVF with PGD, to have a child without the defect. ‘Morally wrong’ for Jono it might be, says Laura, but even so ‘it’s right’. ‘Definitely right’ for the child, Jono concedes.
The scenario in my novel is different, though many of the issues and questions are similar. Sebastian is four years old, and he has a rare blood disorder. But he’s stunningly beautiful to look at. His parents are considering having a baby by IVF with PGD to save Sebastian’s life. They too have reservations … But in this case, I’m not going to tell you the outcome!
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Aversions to adverbs
Phew! Another serious edit completed. I feel the need for some fortfication!
Somebody asked me this week if I read other people’s work while editing my own, and if so, did I feel an urge to correct their writing too? The answer is yes; and yes, indeedy!
This kind of close attention to every word and punctuation mark requires total concentration, and the story mustn’t suck you along or you lose focus, so I find it useful to take periodic breaks, coming back to the job with a clearer eye and harder heart. Reading other authors qualifies.
I’d been cutting adverbs and adjectives to the bone in Saving Sebastian for a few hours, when I took time out with Gabriel García Márquez’s, Love in the Time of Cholera, and came across this. Dr Juvenal Urbino and his virgin bride are getting to know each other on their honeymoon cruise.
‘Then he knew that they had rounded the cape of good hope, and he took her large, soft hand again and covered it with forlorn little kisses, first the hard metacarpus, the long, discerning fingers, the diaphanous nails, and then the hieroglyphics of her destiny on her perspiring palm.’
My editor would have a fit! There’d be a red line gouged through the whole paragraph, not just the offending adjectives – three or four slashes, I shouldn’t wonder. This is just one example; I won’t bore you with others. But I seriously wondered what I was doing pfaffing about with far less offensive over-writing.
And yet … this book is famous, positively weighed down with accolades. And it was selected for World Book Night: one of just 25 titles chosen (although I confess, it wouldn’t have been my choice). 40,000 copies of it were distributed, created specially not to be bought or sold, but to be given and shared. DJ was given this one. He passed it to me. I’m passing it on.
Furthermore Márquez was awarded the Nobel Prize in Literature in 1982, three years before Cholera was published.
Eh dear. What does that say about excessive adjectives?! Sigh, that’s what I mean about goalposts. Who sets them? Do they even exist? It’s all so subjective.
Oh, but to be positive, I also came across:
‘A man should have two wives: one to love and one to sew on his buttons.’
‘Always remember that the most important thing in a good marriage is not happiness, but stability’ And all was forgiven – well, almost!
Recovering fast
Phew! As you know I’ve just done a very big editing job on the forthcoming book about saviour siblings. I took out about 17,500 words in the end. That’s some edit!
One major advantage of all that reading and re-reading was that I noticed repetitive words and phrases. ‘Flounced‘ and ‘shuddered‘ loomed larger than life. Descriptive passages demanded cuts. However, the chief culprit by a long way was the word ‘just’ – scattered throughout with gay abandon. How could I not have noticed before? But that’s the advantage of putting the work on one side for a while and coming back to it with fresher eyes. This time around my red pen went crazy.
I’m now recovering from the trauma of consigning all that hard-won text to oblivion by reading other people’s work – and critically appraising that instead. Marilynne Robinson was recommended to me so I’ve been reading a couple of her books (Gilead and Home). Gentle, reflective, sad stories. And I can’t help feeling that, for all their cluster of awards, my own editor would say, ‘Cut them by at least a half.’ ‘Remove the repetitive phrases.’ ‘Look at some of the peripheral characters: are they really needed?’ Oh yes, she’d call for a radical edit for sure!
So there was I, cruising along with Pulitzer Prize winning Gilead, thinking these heretical thoughts, when this passage jumped out at me. (The narrator is an elderly pastor writing a letter to his son, conceived in his late sixties, whom he will not see reach adulthood.)
I notice the care it costs me not to use certain words more than I ought to. I am thinking about the word ‘just.’ I almost wish that I could have written that the sun just shone and the tree just glistened, and the water just poured out of it and the girl just laughed – when it’s used that way it does indicate a stress on the word that follows it, and also a particular pitch of the voice. People talk that way when they want to call attention to a thing existing in excess of itself, so to speak, a sort of purity or lavishness, at any rate something ordinary in kind but exceptional in degree. So it seems to me at the moment. There is something real signified by that word ‘just’ that proper language won’t acknowledge. It’s a little like the German ge–. I regret that I must deprive myself of it. It takes half the point out of telling the story.
I warmed to the old gentleman. And I was sorely tempted to reinstate my own murdered ‘just’s! They do serve a function. They really do! Well, OK, they just do.
Then another phrase resonated:
This habit of writing is so deep in me…
Well, indeedy. I know exactly how he feels. It won’t be denied. Even at 4 in the morning. In the Reverend’s case he has fifty years worth of sermons in his attic as well as the book-length letter to his son.
Ahah! Speaking of sermons … the Reverend Ames has an unusual angle on several points relating to matters religious, too. This one appealed to me:
In the matter of belief, I have always found that defenses have the same irrelevance about them as the criticisms they are meant to answer. I think the attempt to defend belief can unsettle it, in fact, because there is always an inadequacy in argument about ultimate things…
So my advice is this – don’t look for proofs. Don’t bother with them at all. They are never sufficient to the question, and they’re always a little impertinent, I think, because they claim for God a place within our conceptual grasp.
He has a heart problem and knows he hasn’t long to live. But as he becomes increasingly frail, he resents people rushing to his aid.
I’d rather drop dead doing for myself than add a day to my life by acting helpless.
Oh yes! I see and hear this attitude again and again amongst my elderly friends. If only ‘health and safety’ would allow them to. Sigh.
With all this reassurance and empathy I’m recovering rapidly. I reckon I’ll be getting stuck back into my new novel on organ transplantation any day soon.
Please do not disturb
People often ask how I manage to work from home, and what does my week look like? So a few hints and tips from the McHaffie DIY Manual on Writing by way of a change, this week.
Working from home
I guess it comes down to three things: discipline, persistence and obsession. My second names. One of my obsessions is that I need peace in order to write, mental peace as well as physical. So first I have to tidy up my mind as well as my environment.
This week that clearing process included finishing the book I was reading, Whatever you Love by Louise Doughty. A disappointing read, sadly. I rather enjoyed the author’s weekly column A Novel in a Year, so I had high hopes. And WYL began well. But it failed to live up to its early promise. Too slow paced and altogether too improbable. I can deal with not liking the main characters, but really! Would a newly bereaved mother deliberately entice the man who killed her little girl to her home to have sex with him? Would you marry a man who held you over a cliff edge to terrify you? No, it wasn’t for me.
Once that and all the other extraneous tasks are dealt with, I’m free mentally to get on with the creative writing.
I love working from home – not sitting in traffic, not being jostled by tired commuters, not having to brave the elements, not tiptoeing around moody colleagues. In fact, there’s only one downside I can think of: getting other people to respect my working hours. I’m too available.
What my week looks like
Every week is different. Depends on which bit of the work I’m preoccupied with.
If I’m dreaming up a plot I might be cleaning windows, or driving through the country, or whipping up a feast. All with notebook and pen at the ready, of course.
If I’m in full creative flow with a new book I’m locked in the study working all hours of the day and night, disengaged from real life.
This particular week has been dominated – day and night – by editing. Shorter sharper bursts of activity so that I’m not lulled by the narrative into missing those extraneous phrases and repetitive sounds. I have to be slightly detached from the characters for this phase but they still haunt me wherever I am.
Saving Sebastian is due out in July and my editor wants two changes. A shorter book, and less distinctive accents. Oh, and lose a few adverbs!
I have a number of supporting characters with regional or foreign accents in the story – Arthur (a florist’s delivery man), Aurora (a Nigerian grandmother), Desiree (a Glaswegian girl who’s having IVF) – and I’m trying to convey qualities about them by their speech patterns. It’s a fine judgement deciding how authentic to be in written form. Jennie felt in places their dialogue was holding up the flow, so I’ve been smoothing it out.
I’ve managed to lose about 10,000 words so far. Sobering thought, eh? Labouring over the creation of 10,000 words, only to take them all out again. It’s a crazy life! Oh, and in all this detailed scrutiny I’ve noticed that I use the word ‘just’ far too liberally, so I’ve been searching for each occurrence and stamping on it as often as possible. I wonder if I use it to excess in my everyday speech.
Most of the week, then, I’ve been closeted in the study, staring at the computer, going over and over the text, tightening it up. But I did sneak out for my eldest granddaughter’s birthday, and to visit elderly friends. I’m not a complete troglodyte. Although I must confess, it felt like truanting, and I worked most of Saturday to compensate. Like I said, obssession is my middle name.
Do I want … or do I need?
Little did I think back in 2005, when I wrote Double Trouble, that surrogate pregnancy would hit the headlines in quite the way it has.
Don’t get me wrong, I have huge sympathy for people who are genuinely unable to have children. Goodness, I’ve written two novels on the subject already. And I do believe surrogacy may well be a viable option for some couples. But what’s exercising my mind right now is the dividing line between a desperate ‘we need’ as against a petulant ‘I want’ – with real live children pawns in the game. And I guess it’s the juxtaposition with celebrity and wealth and selfish attitudes that’s disturbed me most.
First gay 64-year old Elton John. 
And now, married 43-year old Nicole Kidman. Positively flaunting the production (and I use the term advisedly) of children by this means.
Of course, I don’t have the ear of Kidman and her husband Keith Urban; there may be intimate factors about which I know nothing. But their story does prompt all sorts of questions. Off the top of my head:
a. What will baby Faith Margaret feel in years to come when she sees the news clippings of her parents thanking their ‘gestational carrier’ for her?
b. Is it right for anyone at any age to be encouraged to have children?
c. Should limits be imposed on assisting conception or pregnancy?
d. What sorts of circumstances justify ‘renting a womb’?
e. Does money buy happiness for children?
f. Should babies ever be saleable commodities?
g. Or the latest must-have accessory?
h. Are there doors which fame and fortune shouldn’t be able to open?
And I’m sure you’ll be able to think of plenty more.
I’m feeling the impact of these cases powerfully this week because I’m back to editing my forthcoming novel, Saving Sebastian. Sebastian Zair, is just four years old, a beautiful child, bright and lovable. But he suffers from a serious blood disorder. He requires frequent unpleasant treatments; his prognosis is grim. 
His parents, Yasmeen and Karim, are desperate to save his life. In order to give him a chance they’re seeking to create a matched child by IVF, using their own eggs and sperm. But the embryo will need to be carefully selected, other potential lives will be destroyed in the process, there are no guarantees. And consultant fertility expert, Justin Blaydon-Green, is juggling all sorts of competing interests; there’s already a shadow hanging over his unit, awkward questions are being asked. Campaigners are on the warpath. The press smell a story. But for the Zair family, time is running out …
Well, stack that against a convenient gift-wrapped bundle bought by celebrity parents … I rest my case.
Not good for my peace of mind, or my creative flow!
Celebrity and courtesy
It’s not every day that I receive an envelope bearing the House of Lords crest. So perhaps I can be forgiven for tearing it open casually without noticing – and ruining the envelope in the process! But anyway it was the contents that prompt me to tell you about the experience, not the crest. A charming throwback to a byegone era.
The letter was from Baroness Mary Warnock – probably the best-known moral philosopher in the country, for those of you who don’t instantly recognise the name. The Warnock Report? Ring any bells?
I’ve read lots of her writing; heard her speak. But I finally met her in person at the Edinburgh International Book Festival last year when we appeared together at an evening event about assisted dying. We’d both brought out books on the subject within weeks of each other (her’s: An Easeful Death; mine: Right to Die). She’s in her eighties now but a wonderfully switched-on lady who still sparks controversy in the press periodically (mary-warnock). Good for her. I don’t always agree with her but I hope my synapses are still crackling as merrily if I ever reach that age. Anyway, at her request, a few weeks ago I sent her a copy of my latest manuscript, Saving Sebastian (about a family seeking treatment to have a baby of the same tissue type as an older child with a fatal illness). ‘Sent her a copy’ – sounds casual, doesn’t it? In reality it was a heart-in-my-mouth sensation posting it. Because not only does this amazing woman have a planet-sized brain, but she has committees named after her – distinguished committees on related topics.
And this envelope held her response. Big breaths. Steady the racing heart.
The endorsement was very encouraging. Very kind. So, why do I mention this here? Because the letter itself was exceptional: hand-typed (complete with uncorrected errors – lots of). The crested envelope was hand-written. This famous and brilliant lady took the trouble not only to read the book within a fortnight of receiving it, but to personally and laboriously write a proper courteous letter to me about it – no dictation to a secretary, no hasty email. That kind of attitude towards ordinary people impresses me more than any prestigious awards – and she’s had her fair share of those.
Forthcoming books
One of the questions I’m asked most frequently is: What’s the next book about? Now, I’m well aware that might stem from a will-it-be-a-more-cheerful-subject hope-over- experience base. But for those of you who’re genuinely interested in life’s dilemmas, I’ll answer the question from a factual perspective.
There are two more manuscripts already written and with the publisher. Titles might change but for some reason I can’t start writing a book without a working title. Kink in the brain somewhere.
Remember Remember
Would you give up your freedom, the love of your life, your inheritance, to care for your mother who doesn’t even know who you are?
This book tells the story of an incredibly devoted daughter, Jessica Burden, who cares for her mother, Doris, a sparky little lady with Alzheimer’s Disease. It involves a secret … and the gradual unravelling of a life … and lots of love and loyalty … and frustration and anger. I’m hugely in awe of Jessica’s selflessness, although she’s very human too, so I’m delighted to say there’s a happy ending. Triumph of love over adversity, I guess you could say. I can hear the sharp intake of breath here from those of you who’ve read my other novels. But it’s true. I can do ‘happy’ when the story needs it! And we get to see inside Doris’ scrambled thoughts too. As a creative writer I had a fun time with that. But in my real life I spend time with real people with dementia, so rest assured, I’m not mocking the reality of life with this distressing illness in any sense. And the book is a family saga not a medical text.
Saving Sebastian
How far would you go to keep the child you gave birth to?
There are two parallel families in this story. Samuel and Candice Opakanjo are black Nigerians who endure years of infertility. Chapter One begins with the birth of their twins, only … one’s black, the other one’s coffee-coloured. How come? Cue lots of tension. Then there are the Zairs. Gorgeous family. They have a son, Sebastian, who’s just four and he has a terrible illness that’s killing him. They want a baby who’s the same tissue-type to help save his life. Will they be allowed to? Not if the militant demonstrators have their way. Dr Justin Blaydon-Green is the fertility specialist caring for both of these couples and juggling with the ethical balls. He’s got his work cut out, tiptoeing through fragile emotions, finding out what’s gone wrong in his lab, and deflecting the banner-wavers and the press. And he’s grappling with his own issues at home too.
This is the book that’s given me most angst so far. Very difficult science involved, way beyond my comfort zone. I read lots of headache-inducing literature and got bogged down in technical stuff (lots of which I never used). But special thanks go to Dr Sue Pickering, a specialist in this clinical field, who steered me through the complexities with great patience. And I spent many amazed hours in the fertility clinic where she works.
I’ll keep you posted as to progress.
