WE HAVE PUSHED our way through the strong heat of Adelaide's hottest summer since nineteen-o-something to get here, but there is nowhere to rest. We get to the door and are faced with a blur of faces: children and their parents. We see them shuffling so that we can squeeze in, sit next to each other on straight-backed chairs with seats of sagging wicker. And now we will wait. We will sit, just as the others are sitting, for as long as it takes. If we can just get in, everything will be OK.
This man, the surgeon we are waiting to see, has about him all the mysticism of a craniofacial sorcerer. Celebrities are thin on the ground in Adelaide, but this man is one and everyone knows of his work. For years, the television and the papers have given us regular stories about the children flown in from developing Asia, their heads and faces swollen and twisted, a surgical miracle performed, their lives transformed.
So it is that in this waiting room we all believe that this is the only person we can turn to. He isn't, of course. There are other craniofacial surgeons. Even in Adelaide there are others. Craniofacial conditions aren't all that uncommon, and they can't all be fixed by one man. Lesson one in a string of hundreds that we will learn.
Our baby is six weeks old, and we are struggling with all the normal things. I must recover from a caesarean, we aren't getting enough sleep, he isn't feeding properly, we don't even know how to fasten the nappies. We have delivered our baby into Adelaide's hottest summer in many, many years and we don't have air-conditioning.
AND THERE IS something wrong. I remember when I was at uni, I heard this man of the mono-moniker speaking after dinner. I was struck then by the paradox of his words. On the one hand, he said the Elle body shape is just a series of genes towards which it is impossible to aspire. On the other, he would take the results of other sets of genes and operate on them. I was intensely cynical. Isn't that just pandering to that impossible ideal? Shouldn't we be teaching ourselves to see beyond the physical into the real, the spiritual, the intellectual person?
Ten years later, cynicism is simple, real life is hard. My baby, so easily conceived, so gestationally straightforward, so middle class, has sagittal synostosis. Like you, I had never heard of it, although at one in 6000 it is merely uncommon, not rare. Synostosis is the premature fusing of one or more of the skull's sutures. In most cases, babies are born with slight gaps between the plates of their skulls. These gaps let the skull expand as the brain grows and, during the course of the first year or so, they gradually fuse. Our baby's sagittal suture knitted together sometime in his short nine months in utero, leaving his head no place to grow except longways.
An eccentric, but endearing paediatrician has counselled us through the early stages of this diagnosis, just a few days after our baby was born. He has explained that it is a cosmetic condition, not an intellectual one. And he has referred us to the wizard.
Until the moment when we see this man we have both, the child's father and I, hoped that he will tell us it isn't true, that he will dismiss us for wasting his time. I have fantasised about the moment when we will go home to play with the baby just as the surgeon turns to help the poor unfortunate souls to whom fate has really dealt this terrible blow.
THIS DOES NOT happen, of course. We walk back into the heat, get into the car and drive home. My father is waiting and, as we tell him the news, I cry like I have rarely cried before.
We do not have to agree to surgery. Synostosis is unlikely to affect a child's intellectual development in any way and apart from a funny-shaped head there probably won't be any other physical complications. Socially though, he will be an outcast. "They'll call him football head," the surgeon tells us. The registrar later explains that the head shape is described as scaphocephaly. "Scapho is Greek for boat," he adds.
The baby's father calls this decision a no-brainer, but I play with possibilities. So his head shape isn't perfect. I can list dozens of imperfections of my own. In a different time and a different place, he might be considered royalty by virtue of his head. In fact, during my time of inevitable and intense research, I learn that there were societies who routinely cracked and shaped the skulls of royal and noble children.
He – we – shouldn't have to undergo such frightening surgery just because he looks different.
But it is just playing. All I have to do is picture his life at five, 12, 18, 30, think of myself at school, of people who gave me a hard time just because of my name. It is a cliché, but kids are cruel, and a boat-shaped skulldoes matter. "You wouldn't use your baby to make a social statement, would you?" a friend wisely asks. Well, no.
And anyway, I'm quickly reminded that we don't live in a different time and a different place. A rising tennis star is in the newspapers again. He has called an umpire a spastic. This thoughtless outburst journeys around the world, passes through our city limits, breaks down my front door and thumps me. It is sport, so everyone has an opinion. He cops a bit of flak from the media, but friends – family – apologise for him. He's young, that's just sport, it's just a word, they say. He donates heaps of money to charity, someone tells me, as if that proves something.
I stop listening. I've been thumped enough.
ISN'T IT AMAZING what they can do? People say that so often that the phrase has no meaning. But it bloody well is. To fix my baby's skull, they will perform a cranial vault reshaping. This is what they will do: make a cut across his head from one ear to the other, then another cut to make a T-shape down the back of his head; remove a 5 cm wide strip from the top of his skull (about a third of the width of his skull); remould his forehead and the back of his head; put in some soluble plates and little screws to hold it all in place while his skull grows back; stitch him up.
They will do all this, and it will change my baby's life.
We spend a lot of time waiting in rooms in the few months between that first visit and the operation. Always, I am aware of my marvellously prejudiced mind. These are not invisible medical conditions. They live on the outside, presenting themselves, demanding a response. I'm a tolerant, middle-class type, raised and surrounded by bleeding hearts. I have my own beautiful boy to tell me why this is wrong. But I struggle. I'll have to live with my own inconsistencies.
You will not be surprised to hear that while my story has a happy ending; it is not before I have lived through some of the most difficult moments of my easy life. Besides a few visits with this surgeon, we see a neurosurgeon, an ophthalmologist, an anaesthetist, a social worker, a genetic counsellor and several registrars. There are x-rays, a CT scan, clinical photos, blood tests and swabs.
There is that early morning when we carry our baby from the ward to the theatre, hand him to the anaesthetist and wait.
There is the waiting. Five hours.
There is that moment when we see him, his head swollen to an unimaginable size, his eyes closed, his tiny body trapped by tubes and wires. There is a night in the paediatric intensive care unit. There is the time that the nurse removes my baby's bandages and I see the frightening proportions of the cut and the work that has been done. There is the first time I dare to touch his head and I feel the space where they have removed the skull. Oh, my baby.
As the baby recovers, as the swelling goes down, as his hair grows and begins to cover the almighty scar, time begins to pass at a more normal speed, events seem to be less intense, and life looks to be more manageable. My baby, they tell me, looks more normal. You wouldn't even know, people whisper. They think they are being kind.
A YEAR LATER I am pregnant again, jumping in before I think too much, before the one-in-a-hundred odds we now have of going through that again start to loom too large. My baby is asleep. I recline on the lounge, wallowing in mindless television. It is Beauty and the Beast and, before I fully understand what I am hearing, a former model is telling me that you can be too beautiful. She complains about gossip columnists who refer always to her previous life as a model, belittle her writing, give her no credence for her intelligence and hard work. I am vaguely sympathetic to her frustrations, but something jars and I start to cry. I rub my tummy and say hello to the new life I have promised to care for. I hope that too much beauty is this baby's greatest challenge.
Level 4, Griffith Graduate Centre
South Bank, Campus – Griffith University
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South Bank Campus, Griffith University
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