Everything That Makes Us Human

by Jay Jayamohan

  ‘I’m not sure the treatment is working any more,’ I said. She knew.

  ‘I was worried you would say that. Aren’t you going to help us any more?’

  ‘Of course I will. You’re both my patients. But we used to have four or five months in between surgery. Now it’s down to five or six weeks. It’s not going to get any better. You need to consider whether you really want your last moments together, your final memories, to be in this place surrounded by our machines, our people, our terrible décor.’

  I didn’t mention the fact that ‘Baby’ – as I still thought of him, even at the age of five – would be plumbed into those very machines. If I had a choice, I wouldn’t want to see my loved ones leave this world like that.

  Eventually, Mum reached a conclusion. When he was all set to go home after his final op, I said goodbye to my little guy, believing it to be the last time I would ever see him. And it was. Sort of.

  Seven weeks later Mum called me. Her son had died peacefully in his bed in our local hospice, surrounded by his favourite toys and superhero posters. It was heartbreaking to hear.

  ‘We’d be honoured if you’d come to the funeral.’

  A funeral. For a boy I couldn’t save. How could I go when I’d failed the whole family?

  I can’t think of many images in the world as distressing as the sight of a child-sized coffin. It goes against the very fabric of nature, of life and of hope. Being a stranger at a private function is awkward at the best of times. At a funeral, you feel like all the spare wheels in the world. The only people I knew were the family and they were there to bury one of them.

  I was actually glad to be alone. If I’m honest, I felt like a fraud being there. I was the only one in the cemetery who had a chance of preventing the boy’s death. And I couldn’t. But that, it turned out, is not how everyone else saw it. Mum must have pointed me out to someone because a man came over, shook my hand and said, ‘Thank you. Thank you for everything you did.’

  He wasn’t the only one. There was a procession of people, men and women, young and old, who wanted to show their gratitude for the time they’d got to spend with their little grandson or nephew or cousin or friend. ‘Without you, we’d never have met him.’

  But he died, I thought. I couldn’t save him. Yet that’s not what anyone there was thinking. To them it wasn’t a life lost, it was five years saved. Where I saw professional failure, they only saw success, which made me smile on the way home. In between the tears.

  And I made myself a promise. I will never attend a patient’s funeral again. It’s too tough, a price too high for me to pay.

  CHAPTER TWENTY

  THE CUSTOMER IS ALWAYS RIGHT

  I’m in my office facing a husband, a wife and their eleven-year-old daughter. Two of them – the grown-up pair – are giving off the kind of warmth that even a snowman would find cold. Arms folded, lips pursed, eyes anywhere but looking at me. You’d think I’d killed their cat.

  I’m used to a little more respect, to be honest. Admittedly, some people go overboard on the reverence. I’m not looking for that. I’d just appreciate people being prepared to listen to me. You know, considering they’re the ones who’ve got the sick child.

  I’ve seen their sort before, of course. Maybe not to this degree. But there are plenty who have crossed my doors who are either unreasonable in their expectations of the service I could provide or who just wanted things to happen immediately at their behest. The fact that I would have had at least another ten people to see, some of whom in more urgent need of treatment, mattered not one jot: ‘Why can’t you do the scan now? Why can’t you operate now? I’ve got her pyjamas. Why would you delay it? You’re playing roulette with our child’s life.’

  They’re tricky to deal with. With most people I can say, ‘I know you are anxious, I know you are worried, but I have dozens of other patients. Your child is safe – there is nothing that will happen suddenly and waiting will not make their condition worse. There are, unfortunately, some patients who cannot wait, and so are in your position but have been waiting for some time already. I have to prioritize. Try to look at it this way – it’s always better not to be the patient that cannot wait because you are so sick … you want to be the patient that can wait.’ That’s usually the end of it.

  But some people don’t want to hear that. They shout, they rail, they threaten. You wonder what they do in their day-to-day lives. Are they bullies with everyone or just NHS staff? When your patient count is in four digits you get a sense of people, so I know what concerned parents look like. Shouting the odds doesn’t prove a thing.

  The truth is, scans aren’t like Polaroids. Waiting lists for them can be approximately four-to-ten weeks, even longer for a scan under anaesthetic, which some people just cannot accept. I get that they love their child, but that doesn’t make them experts in medicine and hospital procedure or more important than the parents in the next room or the room next door to that.

  In this particular case, I sit across from them, waiting for one of them to break their pouty silence with something more than a curt ‘yes’ or ‘no’. They had come to me for a second opinion from a very good colleague in another unit.

  ‘Perhaps you can tell me why you decided to leave your previous hospital and come here?’ I say. ‘Your old doctor is probably one of the leading experts in this field.’

  ‘He’s a charlatan,’ Mum replies. ‘A fraud. A quack. A con man.’

  Wow. ‘Okay, why would you say that?’

  ‘For a start, he said there’s nothing wrong with our girl.’

  ‘Interesting. And why do you disagree?’

  ‘We googled it. She’s got Chiari malformation. We demand treatment or we’ll go somewhere else.’

  Charming … Here is the rub. The notes from the previous hospital indicate there is a small Chiari malformation on the scan, but nothing serious. Certainly nothing that strongly correlates to the patient’s symptoms. She’s been sick and vomiting, but also angry and disturbed. There have been lots of behavioural issues. And yet I can’t take things for granted. I need to start with a clean slate …

  ‘Can I clarify that you were advised that Chiari is unlikely to be the cause of your daughter’s problems?’ I ask.

  Mum folds her arms even more tightly and harrumphs. ‘That’s what the last idiot said, yes. He should be struck off.’

  There follows five minutes of eviscerating abuse of a guy I know to be pretty solid at his job. Even if he weren’t, he didn’t deserve this abuse. No one would. ‘Anyway …’ I continue, ‘did he tell you that surgery on your daughter is too great a risk for the possible benefits?’

  ‘He was just making excuses.’

  My turn to exhale. ‘The brain is not something you operate on for the fun of it. Complications can occur, and these can be serious, rarely even life threatening. You really don’t want to go there unless you have to.’

  ‘Well, we think you do have to. And the customer is always right.’

  ‘In a restaurant maybe, but in this room I’m the expert. You came here for my opinion about your daughter. You know her best, but I know what’s best as far as the condition is concerned.’

  ‘We don’t think you do. We don’t think you care about our little girl.’

  Will it never end? ‘Look,’ I say, ‘I’m not sure what you want to hear. My colleague from the other hospital seems to have conducted a very vigorous investigation. I’ve listened to everything you have said, and examined her top to toe. I’m inclined to agree with him. Your daughter might require an operation at some point in the future if things change, but certainly not now and possibly not ever. Her condition is extremely mild.’

  ‘Oh yeah?’ Dad responds, aggressively. ‘So how do you explain the other problems?’

  Oh, I wish you hadn’t asked that. I have in front of me a ton of notes from psychology interviews conducted with the parents and the daughter. The key factor in all of it is that Mum and Dad are recently separated. Not that you
could tell from the united front they’re presenting against the old doctor and now against me, but I suppose the enemy of my enemy is my friend, etc.

  The conditions they’re complaining about started since news of the separation broke. What’s more, the daughter’s ‘illness’ seems to be quite virulent on weekends and holidays but absent when she’s at school. It also appears to be quieter during time spent with Dad. Even I can see a pattern. Daughter blames Mum for the break-up, kicks off whenever she’s in her orbit and relaxes a bit when she’s not. Elementary, my dear Watson.

  Except … Except there are physical complaints. Weakness, balance problems, headaches, swallowing difficulties, chewing issues, speech problems, double vision. She had reported all of them. Which is what, I suspect, has sent a series of doctors chasing golden geese.

  Just for completeness, I order my own scans, which buys me a little time. In actual fact, I’m perfectly happy looking at a set taken by the previous hospital. They confirm mild abnormalities. Nothing, I would wager, that should result in the responses the daughter is reporting.

  The last thing I want to do is throw this eleven-year-old girl in front of the bus. Especially a bus driven by her parents. But here’s the thing: when children with functional problems are asked the same questions by different people at different times, they will often start to assimilate the inferences from the questions into their answers.

  ‘Are you cold?’

  ‘No.’

  ‘Are you cold?’

  ‘No.’

  ‘Are you cold?’

  ‘No.’

  ‘Are you cold?’

  ‘No.’

  ‘How are you?’

  ‘I’m cold.’

  It’s not necessarily misleading. It’s just kids telling adults what they think they want to hear. I’ve seen a dozen patients who have parroted their symptoms straight from either the NHS online website or, more frighteningly, from Wikipedia. To be fair, Wikipedia sometimes has clearer definitions. Either way, it’s a sad state of affairs when I have to check those particular sites before I meet a new patient in clinic.

  The more I speak to the patient, the more contradictory her answers appear. I notice that she’s taking prompts from Mum. Not only in the tricky stuff, but also quite straightforward questions like when I ask her when she first developed her symptoms. I see what’s going on. I don’t want to interfere. But I do want to help them.

  Before I’m finished talking, the parents start chipping in with questions. A lot of them are irrelevant and nothing to do with me. Then, when they realize I’ve made my mind up, the questions become accusations: ‘Why did we bother coming here? What a waste of time. You were supposed to help us. You’re not a doctor, you’re just a charlatan.’

  It doesn’t matter how many times I tell them their daughter is fine. Or that she doesn’t need an operation. They won’t listen. They don’t want to. Dad launches into Mum, saying how the daughter should live permanently with him as she’s clearly not happy with her. Then Mum tells Dad where to go, informing him how he’s failed them both and how if he were a real man he’d sort me out.

  Suddenly, Dad is up on his feet, towering over my desk. He’s pointing at my face. Screaming at me. They both are. The door opens. A colleague looks shocked to see this man mountain aggressively gesturing at me. He mouths the words, ‘Should I call … ?’

  ‘It’s okay,’ I say. ‘I’m fine.’ But for how long?

  I stand up. Possibly the wrong move. I’m more than 6 foot. He’s a good few inches taller. Wider. And he’s furious. His face is so close I can feel his breath. Flecks of spittle bombard my skin. He’s shouting the odds. Swearing. Telling me what he’s going to do to me if I don’t help his daughter.

  I’m sure this tactic has worked on many people in the past. If I weren’t quite so tall and not used to fairly aggressive behaviour in my social life, then I would feel quite worried. Maybe I’m too stupid to recognize the danger I’m facing. Or maybe it’s because I survived Glasgow unscathed. You can be hit by anyone, of course. His wife is as likely to strike out as he is. Right now, he’s my priority. I need to watch his fists carefully.

  This isn’t my first rodeo. Not my first threat of violence. I work in a very pressurized industry. I can normally talk them down. Bring them back from the brink of violence. I believe I can this time, but I don’t get the chance to try. Mum suddenly decides she’s had enough. She marches to the door and, dragging her daughter, demands that her ex follows suit. When they open the door, I see my colleague with two burly security guards. They step aside as the family storms past.

  I never saw the family again. I pray they never found a surgeon willing to operate. Perhaps in years to come, that young lady will require surgery. But all she needed then was psychological help and parents who didn’t want to kill each other, with her caught in the crossfire. Funnily enough, that wasn’t mentioned in the letter of complaint they sent to the hospital …

  CHAPTER TWENTY-ONE

  YOU SAID THAT LAST TIME

  No two days are the same. No two patients, nor their parents. Odd, really, considering how few brain complaints there actually are.

  We were referred a baby – eighteen months old – from a hospital within our orbit. She’d experienced sudden onset collapse and seizure activity. Between me and my team we make a call on a) diagnosis and b) urgency. Judging from the scans that the hospital beamed over, we were looking at an arteriovenous malformation (AVM).

  Collapses and seizures are a couple of the more time-sensitive symptoms for a lot of problems. We’d have to hit the ground running when she arrived. I was getting ready to leave for the night when the call originally came in. Three hours later, I was invested and ready to put in a night shift. Luckily, I wasn’t alone. My registrar at the time – Tim (now a consultant himself) – was running around like a headless chicken getting the various departments prepped for our little visitor. I’d need scans, I’d need a theatre, I’d need nurses, equipment, anaesthetists, the works. Tim would handle procurement, of that I had no doubt. All I needed to do was call home and say I wouldn’t be back for a while.

  It’s 10 p.m. Baby is twenty minutes away. I move our team up into the next gear. Without ward rounds and clinics and other distractions, we go straight to an abbreviated version of the WHO countdown.

  ‘Okay,’ I say, ‘this is what we think we’re dealing with, this is what I need – tell me how you can all help.’

  Everyone else is as ready as me. Now it’s just a case of waiting for the main attraction.

  The parents arrive in a teary-eyed, tired bluster of panic. Ambulance trips can have that effect. I want to get the full history from them personally, but I let Tim lead the conversation. It’s how registrars learn. It’s exactly as the treating hospital explained. One minute the baby’s fine, the next minute she’s on the floor. Scans show a clot near the top of the brain.

  I’m in the theatre running an eye once again over the scans. In the old days they’d all be pinned up on the walls, but in the computer age I get to look at them one at a time on screen then whizz forward to the next. It’s cheaper than printing, I have no doubt, but far from as efficacious. Who has time to be flicking between images on a laptop?

  We begin to prepare to do the blood clot/AVM treatment. When the anaesthetist wheels the patient in, I do another check of the room.

  ‘Everyone good to go?’ They are.

  Fifteen minutes later, I’m inside her skull, cutting my way through to the blood clot. It’s accessible. Not small – about 5 cm across. Fairly routine, I imagine, to take the majority of it out. My tools are arranged pristinely to my right. Tim’s head is virtually touching mine as he keeps the entry points open. We are working as a seamless team, as would be expected after having him with us for six years. Behind him, our junior trainee’s head spins between the screens, the heart monitors and ground zero. He’s taking in everything. Exactly as I’d hope.

  Occasionally, he’ll have a question. I answer
if I can. By that, I mean, I answer if the scenario allows me that luxury. If I’m working on a particularly perilous manoeuvre, that’s where my conversation will stop. It’s not personal. I probably don’t even hear the question.

  The priority is to remove the errant blood clot, while protecting the expected dangerous blood vessels underneath it. I’ve started on the operation, removing it piecemeal. Once I’ve got the area ready, I let Tim do some of the work, never taking my eyes off the clot.

  We’ve been going an hour when he says, looking through the microscope, ‘What do you make of this?’

  I’m already looking at the giant images on the screen behind him. Something isn’t right. The clot has been coming away beautifully. We’ve hoovered up nearly half. But Tim has hit upon something a little different.

  ‘Shit,’ I reply. ‘I do believe we’ve got a Trojan horse on our hands.’

  ‘I think so.’

  It’s what’s peeping out from within the area that we’re focused on. There’s something else there. Clinging to the edge of the clot. I reach in with my instruments. I cut what I can and remove it with forceps. Tim studies it as I hold it to the light.

  ‘Tumour?’ he asks.

  ‘Too right.’ I show it to the rest of the room. ‘I hope none of you had evening plans …’

  Talk about unlucky. This little girl had developed a tumour, which in turn had worn through a blood vessel, causing it to rupture. The tumour itself was barely different in appearance to the surrounding brain, so of course it’s going to be overlooked on the scan, once the blood clot comes into play. The only positive from the situation was that the original hospital did a correct diagnosis. Just not a complete one.

  The moment the tumour came into play, the whole emphasis of the operation switched. One minute you’re prepared to do a vascular operation with certain instruments, suddenly you’re on a different footing.