For parents, a paediatric neurosurgery ward is the most terrifying place in the world. For Jay Jayamohan, it's the office. He tells Hilary Rose about the life and death decisions he makes every day on behalf of the most vulnerable patients.
At 8 o'clock on an icy January morning, Jay Jayamohan is doing ward rounds at the John Radcliffe hospital in Oxford. Someone has made a valiant attempt to cheer up the place. The walls are orange, the window frames are pink and paper stars hang from the ceiling. A child-size wheelchair sits next to the reception desk, which is covered in cards. "Thank u for helping me gt better," reads one, in sprawling child's handwriting.
Jayamohan, 49, is a children's brain surgeon. Today, his patients include a three-month-old baby with a bleed on the brain and a cheerful four-year-old boy who needs a third operation on his brain stem. He coaxes a smile out of a grumpy little boy with an enormous bandage round his head, like Pudsey Bear, and explains to the tense parents of another how he will perform a shunt operation later that day.
"You could go on Google if you have any questions when you get home," he tells the mother of a baby who's due to be discharged, "but remember that anyone can come back from the pub and write stuff on Google. We're here 24/7 if you need us."
For the parents, a paediatric neurosurgery ward is probably the most terrifying place they could ever find themselves. For Jayamohan, leaning against the doorframe and radiating relaxation, it's the office. Today, it's an office whose IT system has been down for 24 hours, so the 7-strong team of medics trooping along in his wake have only paper records about what's been happening. If he's frustrated, he doesn't show it. He became a neurosurgeon, he says, because he thinks it's the highest achievement in medicine.
"Well, I would say that, wouldn't I?" he grins, in his tiny, shared office at the top of the hospital, which overlooks a cemetery. "But what attracted me to neurosurgery is the sense of the unknown. The brain is the least understood organ, not only in how it works, but how we can fix it when it goes wrong. I get to treat the illness and look after patients, but I'm still forever on a learning journey about the very organ that I'm operating on."
What he likes about brain surgery is basically that it's difficult. A broken leg is a broken leg, but a broken brain could be broken for any number of reasons, none of them obvious. Factor in how small his patients can be, some of them newborn, and surgery can go pear-shaped, as he puts it, much more quickly than on adults. An adult could lose a litre or two of blood on the operating table and still be fine, he says. A baby has barely enough blood in its entire body to fill a can of Coke. So while most of us probably associate surgery with blood, for Jayamohan, it's the opposite.
"If I have blood on me at the end of one of my operations, I'm a little bit disturbed by that. I like my operations, normally, to be a relatively bloodless procedure."
He says there's an odd moment, when an operation is going wrong, when his innards start telling him he's not going to be able to regain control. In paediatrics, things can go from calm to life-threatening in minutes.
An adult can lose a litre of blood and be fine. A baby has barely enough blood to fill a can of Coke.
Generally speaking, he says, surgeons in other areas tend to know if a patient's going to do badly, either because the operation was difficult, or because they're dealing with a known quantity – something physically obvious is broken, so they fix it. The brain is a largely unknown quantity. He says you could inflict the same brain injury on ten people, using the same mechanism and the same force, and end up with ten completely different injuries and ten complexly different patient outcomes. "That's the fun of the game for us," he says, "and the horrendousness of the game for the patient."
For some of the families he sees, the news that their child is going to have brain surgery comes almost as a relief. They might have spent months going from doctor to doctor, knowing their child was unwell but unable to get a diagnosis. Others, such as the mother of a little girl who started developing a brain tumour in the womb, must surrender their newborn for surgery when she is only two days old. Jayamohan makes a point of explaining everything to the child, if they're old enough, as well as the parents, even if the parents are reluctant to let him. He was drawn to working with children because he's "a bit immature and a big kid" himself.
"Children are very black and white and I like that," he says. "If a child says yes, they mean yes. If they say no, they mean no. Kids are like dogs – they can smell the truth behind what you've said." So he explains that Mr Tumour is the reason they can't get up, or run around, or see properly, or whatever the problem is. He tells them that he's going to take it out and, when they wake up, they'll probably feel a bit worse before they start to feel better. Then he talks to the parents.
"You have to include death in that discussion," he says. "They say, 'Why can't you tell me what my child is going to be like?' We can't say, 'This is going to be OK,' because everything can look fine, but end up terrible."
In planned operations he does at least have time to prepare everyone concerned, but in life-threatening emergencies, he might need to operate first and explain later. Imagine, he says, you're a parent sitting at home and the phone rings. Your child has been in a car accident or fallen off a horse. Your world falls apart while you're reading the newspaper. He regularly has to break it to parents that the good news is their child will probably survive the operation. The bad news is that he has no idea what condition they'll be in.
"It could go from needing some assistance with walking, or needing to go to a different type of school, to being unable to speak, unable to move, on a ventilator with a feeding tube," he says. "The families have no idea what shape of child they're going to have. Sometimes the parents don't even know if they're going to have a child who recognises them."
Suki Sandhu, 36, met Jayamohan when her son, Raj, was two and a half. Raj had suddenly lost the use of the left side of his body. "It happened instantly," she recalls. "There was nothing wrong with him."
She took him to her local A&E in Slough, where they rushed him in an ambulance, in the middle of the night, to the John Radcliffe. He had a bleed on the brain and underneath that was a tumour. She met Jayamohan at 5 o'clock the following morning, after the first of what would be 6 operations over 6 years.
"I trusted Jay," she says. "He was very thorough and he was honest with us. He never sugar-coated anything. He told me the facts and he never said it would all be OK. And he never stopped trying for Raj. After the second operation, he was fighting fit for 19 months. Life was normal. But then it came back." Raj was eight when he died.
The stories Jayamohan tells in his new book, Everything That Makes Us Human, are extraordinary. There was the badly beaten-up man in a Glasgow hospital bed, who greeted him with the cheery words, "I don't want that Paki operating on me." He writes casually of the tools of his trade, the lines of lollipop-like sticks, in varying sizes, "which you can use to move the brain out of the way". Craniofacial work is all about the Tesco test. Will the person whose face he's reconstructing be able to walk round a supermarket without people staring? And everything is laced with a mordant humour. Some colleagues are better at being woken up for emergency night work than others.
"I want," he writes drily, "to work with the ones who recognise that we aren't operating in the middle of the night because there's nothing on the telly."
He's written the book, he says, because most people have no idea what these children and their families go through, how hard they have to work at being able to walk, or run around, or leave the house, knowing that they look different.
"Especially if you're a kid, that's huge," he says. "People need to understand, but society is horrible to those people."
Jayamohan was born in Sri Lanka. His father was a community doctor who worked in population health and his mother was a university lecturer. When he was three, and his elder brother was seven, the family moved to Liverpool. It was supposed to be a temporary move, for his father to take up a fellowship, but for a variety of reasons, not least the civil war that was raging in Sri Lanka at the time, they stayed. When he was 12, they moved to the capital when his father got a new job.
"I arrived in London with a nice scally accent, which got removed at the end of boots and shoes," he says. "Everyone took the piss out of my accent, including the teachers. So I just had to get rid of it."
His teachers told him to apply to Oxford to read medicine, but he thought it was too quiet and provincial, so he stayed in London, qualifying in 1995 at St Mary's Hospital Medical School. He focused ruthlessly on his career. Every spare minute was spent reading medical journals, working his way as a trainee through all the branches of medicine, before realising that paediatric neurosurgery was the one for him. It took so long to get his first registrar's job that he contemplated ditching medicine and retraining as a barrister.
Finally, a job came up in Glasgow. He sold his flat in London and moved north for the next five years. He had a ball, working hard and playing hard, while never letting his personal life distract from his career. He didn't have a serious girlfriend, he says, until he met his wife, a psychologist, when he was 30, or maybe 31, he's not entirely sure. He made it clear from the start that his job came first, and he wasn't kidding. In the pre-mobile phones era, she regularly found herself sitting in restaurants or bars on her own, waiting for a boyfriend who was scrubbing in instead of meeting her. She never once got cross, he says, but looking back, he thinks she must have been hurt.
He was 34 when he arrived at the John Radcliffe as a consultant, and now heads the department of paediatric neurosurgery. He was 35 when he married and the couple now have 3 daughters, aged 8, 10 and 12. He admits that he could never have had the career he's had without the support of his wife. His home life, he says, has suffered "horrendously". His wife tells him that his priorities are in the following order: his patients at the top, followed by his parents and children and then, in last place, her.
He thinks she's right. He never takes all his holiday allowance because he doesn't find holidays relaxing. In fact, quite the contrary – he gets bored. He doesn't like flying because he refuses to queue for anything, ever, and he doesn't like crowds. When the children were little they once went to the Canary Islands for a beach holiday and he shudders at the memory of how bored he was. His most recent break was last October, when the family spent five days in Northumberland. Mainly, his idea of a good time is being at home, just outside Oxford, playing Call of Duty and eating egg sandwiches with Frazzles in them. Needless to say, his wife makes them.
Ask him what sacrifices he's made and his first reaction is to say, "None." But then he pauses and says yes, actually, of course he did. He didn't see nearly enough of his children when they were growing up and he was hardly ever home for bathtime or bedtime.
"All that stuff just went," he says, batting it away. "The way my wife and I thought about it was that, if I've got a patient who's sick, well, our children aren't sick. She'd say, 'You stay and look after that patient.'"
So he did. His wife has met a fair few neurosurgeons in her time and says they all have two things in common: they're extraordinarily egotistical and utterly self-centred. "We all think we're lovely," he jokes, "but maybe we are all just egotistical bastards. I think we probably are."
Surgeons are sometimes accused of having a god complex.
"I probably do," he says. "You probably have to, to survive it. You need to be caring and warm, but you need a certain amount of steel to do it and to cope when it goes wrong. You can't be someone who starts crying. And you can't be someone who comes out and just says, 'Unlucky. Shit happens.' You've got to be hard enough to keep going after a disaster, but have enough insight to learn from it."
His first solo operation went entirely to plan. His patient had terminal lymphoma and, without surgery, had only 24 hours to live. Operating, it was hoped, would buy him a few extra days with his family. Jayamohan's task was to insert a tube into the man's skull to drain excess fluid from around his brain. It was a textbook operation. Everything went to plan. He came out of theatre on cloud nine.
The patient never woke up. After the operation, he suffered a massive bleed into his brain stem. It wasn't Jayamohan's fault, and his consultant told him he couldn't have foreseen it. Jayamohan protested that it couldn't be happening because he'd done everything right.
"And yet," the consultant told him, "your man is still never going to wake up."
"That was a body blow," he says. "I was so sure I was going to be this heroic doctor and it was a disaster for the patient. However great we think we are, neurosurgery is totally unpredictable. We think we know what we're doing and, up to a point, we do. But there's this unpredictable hand of fate that every so often messes things about, for no good reason. You can do an operation that is technically perfect and the patient doesn't wake up, or wakes with a huge disability. It was a cruel lesson in how it feels to be the surgeon."
When he was training, one of his bosses was Henry Marsh, the brain surgeon who wrote the bestselling memoir, Do No Harm. Marsh kept a diary and advised Jayamohan to do the same, so he scribbled down notes of difficult patients, difficult scenarios, how he treated them, what happened or didn't happen. It's cathartic, he says. He never forgets the disastrous operations, but they don't haunt him. He finds himself thinking about them at odd moments, when he's nowhere near the hospital.
He cares deeply not so much about the written consent forms, but the verbal contract he's made with the child and their family. And the issue of consent isn't always a question of parents deciding for their children. If he thinks the child is capable of understanding the risks and benefits and can give an informed, reliable answer, then he has to get their consent too and the parent cannot overrule the child. He recently treated a 13-year-old girl who suffered from recurrent brain tumours. He advised her to have another operation and her parents wanted her to have it. She refused.
"I said to her parents, 'Listen, you can go home and persuade her with all the parental mechanisms you want, but she has to come back and say, of her own free will, that it's a yes. Until she says that, I can't do the operation because it's assault.' "
Once he's in the operating theatre, he's like a robot. All emotion shuts down. He's rarely happier.
In the end, the girl's vision deteriorated so much that she did consent and the operation went ahead. But Jayamohan's relaxed demeanour belies the fact that he's a worrier. His wife tells him he's a meta-worrier, someone who worries about worrying. If he's worried about a patient, though, "You can't look like you're shitting yourself while you're talking to the family." And once he's in theatre, he says he's a robot. All emotion shuts down. He's rarely happier.
"Up until you start the operation, obviously they're lovely and cute," he says. "And when you're placing them, you realise how gentle you have to be because they're so small and fragile. But if you started getting emotional, you'd make errors."
He inflicts different Spotify playlists on his colleagues, depending on the operation. Neurosurgery calls for hard house or techno because the rhythmical beat helps him focus, to exclude everything else that's going on around him. Craniofacial surgery, on the other hand, calls for classic rock: Iron Maiden or AC/DC. Most people, he says happily, think his music is bloody awful. And while he's waiting for the anaesthetist to give the go-ahead, he plays Call of Duty on his mobile, killing virtual people before saving real ones. It's yin and yang, he jokes.
He's a good surgeon, he thinks, but not a brilliant one. He's seen some who are so technically brilliant they make surgery look like "a thing of beauty", but they're few and far between. And as he points out, being a great surgeon isn't just about how you hold a scalpel. When he was training under Marsh, the hospital had another surgeon who was much better than Marsh, but a horrible person, whereas Marsh, he says, was lovely. Assuming the outcome is the same, most people want a surgeon who's good at what Jayamohan calls the "non-operation" part: talking, reassuring, explaining. But when it's just him in there with the electric knife in his hand and the hard house blaring, he also has to accept that the best he can often hope for isn't the perfect outcome, but the least bad.
"The challenge is the joy," he says, heading downstairs to scrub in. "They're the same thing. That's why we love doing it 'cause it's so bloody hard."
Written by: Hilary Rose
© The Times of London