Like a lot of parents, I have an office pin board and desk that are filled with artwork from my children. Every so often I’ll look at a drawing and try to remember what it was meant to be. It changes depending on my mood.
Not all the pictures are from my own kids. I’ve got sketches from dozens of children, all patients, some of them going back a decade. More than a few seem to be caricatures of me. Is there anything as critical as a child-artist’s eye? It’s a nice way to remember the wonderful people that pass through these doors. Not all of them come back for annual check-ups. Not all of them are still alive today, but in every single case we gave it our best shot. I get a lot of cards from parents that say ‘Thank you for trying’. I’m not sure I could write that message in their circumstances, but it means a lot.
Every year, around the second week of December, I receive a card from one particular man. He wishes me a ‘Merry Christmas’ and thanks me for fighting so hard for his son. I’ve received fourteen of them so far. He never forgets. For a parent, the experience of the neurosurgery department never goes away.
Children like to mess around. It’s what they do. They’re attention seekers and it’s the parents’ job to sometimes ignore them.
If your four-year-old started stumbling around, your first thought would not be that maybe he has a major spinal disease. You’re more likely to laugh or tell him to stop mucking around and get up to the table for dinner. Maybe the next day he complains of a sore tummy and you say, ‘Well, when was the last time you did a poo? Let’s go to the toilet.’ When he wets his trousers later, despite being dry for over a year, you’re just relieved he’s urinating because getting a wee out of him has been nigh on impossible over the last twenty-four hours.
When you realize he hasn’t jumped on your bed at 6 a.m. you might actually be happy. You might cuddle up to your partner and enjoy the privacy for once. But when you creep over to check on him at 7 or 8 o’clock, you don’t find the sleeping bunny you expected. You see him wide awake, on the floor, distress in his eyes.
You run over and scoop him up. ‘What’s wrong, baby? Why are you on the floor?’
‘It’s my legs, Daddy. They won’t work.’
The young boy had been taken into A&E at Northampton with a retrospective four-day history of worsening walking, sore tummy and urinary incontinence. He also couldn’t take any weight on his legs at all. They quickly realized it was a spinal problem – a job for us at the John Radcliffe Hospital. The on-call trainee at the time, Tim, received the message and took down the details.
‘I’ll get the boss,’ he said. ‘You get the boy over here ASAP.’
I used to operate two days a week. This was not one of those days, so there was nothing in my diary that could not be shifted. Tim ran me through the story.
‘What’s your best guess?’ I asked. I already knew what I thought it was. The way trainees become consultants is by calling the decisions themselves.
‘Either a tumour or some bleed into the spinal column,’ he said.
‘Anything else?’
‘Possibly an acute MS attack?’ Sometimes, ‘medical’ conditions like multiple sclerosis can look like a tumour.
‘Yeah, it’s possible but unlikely. One of the first two will almost certainly be the culprit.’
The MRI results came through and confirmed a problem with the spinal column. The boy had developed an arachnoid cyst. It’s benign in and of itself, but it can cause disruption to the flow of signals in the spinal cord. Over a period of probably months, perhaps longer, it had been growing but with negligible detrimental effect. It was only over the previous few days that it had reached the tipping point, grown too large for the available space and started compressing the spinal cord. It needed to be drained. Pronto.
Neurosurgery has three theatres in its name. Sometimes – often, in fact – we need one more. At that moment they were all in use. All doing great work. I didn’t want to bump anyone’s operation later in the day, but this was an emergency. I made the call.
‘Theatre eight: how long till you’re finished?’
‘Just started – three hours.’
Theatre 11: ‘Four hours minimum.’
Theatre 12: ‘About sixty minutes.’
‘Perfect,’ I said to the last theatre. ‘Once you’re done, I have a cord compression I need to do ASAP. Can I have your list?’
There are two types of surgical colleagues. Some whinge and complain, and do everything they can do to avoid giving up their space to someone else’s emergency. Others say, ‘Yep, if it needs to be done, it needs to be done.’ Fortunately, this consultant was the latter sort.
We did the WHO surgical checklist. ‘We are getting prepped for spinal cord decompression. Thirty minutes till he should be here, people.’ The anaesthetic consultant led the WHO and drove things forward in theatre. With a scrub team already on site that was one less thing to worry about. Now I could focus on the actual patient.
The boy’s cyst was located between the shoulder blades, which explained why his arms were still functioning. As for everything below, he was paralysed or soon to be. Not just the legs, but the bowels and the bladder and everything else south of the problem was a target for the block.
The ambulance arrived within an hour of the call to Tim. The parents were in turmoil. Self-flagellating at missing or dismissing every sign. They were begging everyone, ‘Please, help our son. We’ll do anything, sign anything. Please help him!’ It’s natural. I’d deal with them shortly. First, the priority was giving their child the once-over. Northampton had inserted a catheter into the boy’s bladder because he could not pee. It was up to us now – physically and mentally.
In a non-emergency – for example, when it’s somebody coming with a long-term condition that will be the same tomorrow as it is today – the protocol is that one of my juniors would be first contact for the family. They perform the introductory hellos, run through our projected care plan and become the patient’s person of contact. It’s not me skipping on tasks – I’m not treating patients the way my father’s heart specialist treated him – but my job is more than saving lives. It’s about training the next generation of specialists. The trainees need to learn, so they’re just laying the groundwork before I arrive. It’s my version of ‘see one, do one, teach one’.
The registrar examines the patient, takes a full history from them and their carers, and comes to me with a summary of what they’ve found, plus a formula of what action they’re recommending. Normally, I will already have seen the scans so that I can make sure they – we – are on the right track. I want to see whether my trainees are on the same page as me. Real world experience counts for more than any exams. That said, it’s as much to make sure that I haven’t made a mistake as it is checking the trainees.
It’s the same process I underwent and I think I turned out okay, the odd blip aside. But another reason for sending your troops into the field is much more positive. They’re young, they’re bright, they’re hungry – so they may well come up with a better idea than anything their forty-something boss has got. Sometimes you have to say, ‘You know what? That isn’t what I was going to do, but it sounds great. Let’s do that instead.’
Whether we go with my diagnosis or not, usually I like to get the trainee to come in and do the operation with us, so they’ve got that ongoing link with the patient. They tend to remember much more if they have continued involvement.
When things are in motion in a rapid way, concessions need to be made. I’ll go down with the trainee and we’ll see the parents and child together, and then normally one of us will peel off to the operating theatre to tell everyone there what we’re planning to do, what kit we’ll need – what playlist I’m in the mood for. The other person, meanwhile, would be getting the consent forms signed by the child or the parents.
Because of this boy’s situation, ‘training day’ goes out the window. There’s no time for standard techniques. This was a case of everyone seeing the family together and then everybody going off and making their contribution to processing the next part of the next stage. Time wasted now could mean reduced limb function later.
I’m standing over the boy, checking his notes, making small talk. He is conscious and scared. Dad is right next to me. The second I turn away from his son he mouths to me, ‘Please. Be honest: is it cancer?’
‘Oh, thank God.’ He and his wife hug. They cry. I can feel the palpable relief, of course.
I really want to let them enjoy the moment. But that would be unfair. ‘It’s not cancer,’ I say, ‘but it is serious.’
‘What do you mean?’
I explain what has been found. The large fluid-filled sac is compressing the spinal cord and has almost completely stopped the signals passing up and down. The longer it goes on, the more likely it will be permanent. ‘I mean, your son might not recover his lower body functions – legs, bowel, bladder, sexual function – all of it.’
Dad’s face tightens. ‘Please, Doctor Jay, not in front of my son. I don’t want him to hear this.’
I acquiesce and step away from the bed for a second. But not because I agree with him. Dad is close to breaking. He just wants me to save his precious boy’s life. I want to ensure it’s a life with as little pain as possible, which also includes mental discomfort.
I explain my diagnosis to the parents and give a rough outline of the surgery we’re planning to perform. I don’t pull any punches.
‘We’re going to try to save your child’s legs and bladder function as much as we can. It will either be successful or not. Function may only come back a little bit. It’s impossible to say at this moment. The only thing I can guarantee is that if we don’t operate, if we don’t take a chance right now, it will only get worse.’
The parents are strangely happy. Everything’s fine. They just want someone to do something. It’s the only way they will be able to live with themselves. But telling them what I plan to do is just part of my job.
‘Now,’ I say, ‘I need to tell your son.’
‘Absolutely not,’ Dad replies. ‘He’s too young for this.’
It’s the usual story. Normally, I’m a little more reasonable. Normally, I have more time. ‘Wouldn’t you want to know what was happening to you?’ I ask.
‘Of course. But he’s a child.’
‘Yes, he’s a very scared child. And it’s my job to help him in any way I can. And right now, that means explaining to him exactly what we’re going to do. I can’t envisage what horrors he’s experiencing right now. Imagine being four years old and your legs and bum have stopped working. Imagine not being told that someone is going to inject you with sleep drugs, then waking up with a sore back and a tube hanging out of your spine. Personally, I’d be terrified.’
‘I don’t know,’ Mum says.
‘I’m sorry, time is of the essence here. I respect your opinion, but you must respect mine,’ I reason. ‘Trust me, I’ve been doing this a long while. You will cause more damage in the long run by keeping secrets. More importantly, he is my patient, not you. I’m not going to lie to him.’
It’s harsh, but we’re against the clock. Children have voracious imaginations. Imagine what hellish scenario he could construct after waking up with no information? It doesn’t sit right with me. There’s only so much four-year-olds can take in, but I want to share the basics. They are reluctant but agree to me talking to him.
‘Your legs and tummy are controlled from your back. And that is what isn’t working properly. We’re going to give you lots of medicines that will make you sleep and then we’ll have a look around inside your back to see if we can fix your legs and tummy – we need to get them back to work, don’t we? When you wake up you’ll have a little bit of pain, but that will go away in a day or two. You might have a little tube coming out of your back. It will feel weird but it won’t hurt. And we’ll take it out as soon as possible.’
With the help of Benny the bear – the ward operation toy we use to explain to children what will happen to them – I show him what we are planning to do.
Best-case scenario: the lad wakes up all discombobulated, head spinning, wondering where he is. The pain receptors will start to kick in, he’ll be uncomfortable, he’ll be aware of something in his back, but he’ll think, Oh hang on, Dr Jay told me this was going to happen. He said I’d feel sore but that I’d get better in a day or two. So that’s okay. Even at four years old, knowledge is power.
The surgical scrub team are waiting when I arrive. Two anaesthetists, an anaesthetic assistant, my trainee, one scrub nurse, two other nurses and, as often is the case, a handful of students. Students aside, everyone knows what we’re planning to do, the equipment is ready, they’ve just completed another life-saving op. This is bread and butter for them. If anything goes wrong it won’t be their fault. I’d bet my life on it.
I’m in theatre ten minutes before my patient arrives. The anaesthetic room is next door. Completely separate. I can hear his trolley being wheeled in there. The team are getting him comfortable and administering the knockout juice. As a rule of thumb, ambulance staff and relatives and other hospital personnel are admitted into the anaesthetic room, but that’s where their access ends. Theatre is a clean environment. It’s my environment. Things that go wrong in here, even if caused by other people, ultimately have to be explained by me to the patient and their family, so I am jealously protective of it.
The patient is wheeled through and put on the operating table. We position him with great care, making sure we look to protect any pressure points to keep the skin safe. Then we do the flight checks. Tim hands me the scans.
‘Confirming the right way round,’ I say, waiting for it to be verified. ‘And confirming child’s name.’
It sometimes seems like a waste of time checking the identity of the patient against his charts, but accidents have happened. Not to me, thank goodness, but the wrong leg has been amputated because scans were pinned up back to front, and occasionally the wrong patient has ended up under the knife because of a mix-up over similar surnames. It happens. But less so if you run the relevant checks.
We go through the cleaning techniques, applying antiseptic and antibiotics. Finally, we’re ready to start. I set up the sound system – the music kicks in. Getting into my operating brain thoughts, I scrub up.
The task is to drain the errant fluid pressing on the patient’s spinal cord. We’re all clued up and primed to go. The boy is lying on his tummy. I cut a vertical incision into the middle of his back, slicing through the skin down through the muscle on either side of his tiny spine. Once I reach bone it’s a matter of clearing space. My scrub nurse then hands me the drill required to open the back of his spine.
The aim is to drill in such a way as to allow me to lift off a sizable length of spine, like a link bracelet. The incisions I’m making are approximately 10 cm long. It may not sound much, but it is seriously invasive in a four-year-old’s back. A few millimetres too far left or right and I could damage the boy’s spinal joints. Too deep a penetration and it could be worse.
By cutting down the side of the spine I can ensure the ligaments hold everything in shape. It’s intricate stuff, but so satisfying when it works – a bit like peeling an orange in one go.
The spinal cord sits inside the bony vertebral column. It’s completely surrounded in fluid and fat to protect against impact. That means as you move, your spinal cord doesn’t get bashed against the bones of your spine. Much like the way the brain is cushioned inside the skull. If you have a sudden increase of back-up fluid in between the spinal cord and the bones of the spine – caused by a cyst – you can imagine what a snug fit it would create. You’d have this fluid sac growing bigger and bigger and bigger, and eventually it would tip over the edges into what we call ‘decompensation’. Suddenly, the spinal cord doesn’t have enough blood supply because it’s being compressed so much and it starts to prevent bodily function.
It’s like travelling on the Tokyo subway network. Just when you think that there’s no way you can get another person into that carriage, a guy with white gloves comes along and shoves several other bodies inside. There’s no room. Everyone inside is squashed. Breathing is difficult. Dignity goes out of the window. But still they cram more people on.
The actual cyst I’m searching for is probably half the thickness of my little finger. As I lift off the link bracelet of the boy’s spine, it exposes the fibrous bag – or dura – surrounding the spinal cord. Aided by the microscope magnifying the tiny operating field, we open the dural sac, and use tacking sutures to hold it open. It’s a win. I can see the cyst as plain as day, very prominent, packed with clear fluid. The aim now is to open up the cyst and drain the fluid out, but also to try to ‘fenestrate’ – where we cut as many holes as we can in the wall of this cyst – so that it can’t refill.
With one puncture we could have drained the sac, sewn the boy up and waited for him to regain some semblance of function a few days later. In doing so, however, we’d be inviting future complications. Whatever is causing the cyst and the fluid build-up within would continue to do so. Within six months, the boy would be back reporting similar symptoms.
So that is why it’s not enough to make one hole. I have to make several – half a dozen if I can. The body has this annoying habit of healing any scars – usually a good thing, but in this case an inconvenience of life-changing proportions. Make two holes and the body might heal one within six months and the other in a year. Make six and you’d have to be seriously unlucky for them all to heal.
Voodoo needlework done, I stitch up the dura, then lower the link bracelet of the spine down and secure it into place. It has to slot in perfectly to maintain the integrity of the spine’s biomechanics. If it’s misplaced, a growing boy could end up with curves in his spine or other problems.
It takes an hour to rebuild the jigsaw and close. Everything is finally connected back to where it was before. Confident we’ve done as much as could be expected, I call an end to the surgery. The scrub team can then prepare for whichever operation they were meant to be doing for the last couple of hours. I need to speak to my patient’s parents, then wait. And wait.
I have never guaranteed a surgical outcome. By the same token, I’ve rarely intimated results that were anything other than likely. I’m Mr Middle of the Road. I believe that patients should be as informed as I am. No hyperbole, just plain probability. I’d warned this little boy that we may be able to reverse his condition, but it was by no means guaranteed. I’d told his mum and his dad the same thing.
The whole procedure took about four hours. The patient was declared safe and moved to a ward. We’d started late afternoon and it was the middle of the evening by the time we were done. On a non-surgery day, as today originally was, I should have been home in time for family supper. If I rushed, I could possibly still catch the dying embers of the meal. But as tasty as the boss’s cooking is, I couldn’t leave without updating the parents.
‘We’ve done what we set out to do,’ I said.
‘Have you fixed him?’
Ah, the most common question. ‘We’ve disrupted the sac, but the spinal cord is a very intricate part of the body. We should have stopped the damage progressing, but I don’t know if we will see an actual improvement.’
Slowly, the boy stirred. I tried to get him to move his legs, but there was nothing. Still early days, I thought. He was so tired after the ordeal of the day that he nodded straight back off to sleep. That’s enough for one day. I said goodbye to my team and the parents, and hit the road.
The following morning I did my ward rounds as usual. There were eleven cases within our purview, each of them as important as the next. Everyone was as I expected them to be, even the ones in the ICU. Two I was able to sign off for discharge. Another pair I prepared for surgery later in the day. But the person I was secretly most anxious to reach filled me with nothing but disappointment.
I said ‘Good morning’ to Mum and Dad and then my patient. It’s always important to include them in any discussion. I asked how the night had been, then opened the question up to the nurses. ‘Anything you need to report?’ I asked.
The nurse in charge replied that there was nothing of import. ‘Temperature standard, heart rate normal, sleeping pattern regular. No leakage from the wound.’
The boy was awake, smiling in between bursts of discomfort, which always gives hope to the coldest of hearts. But when I asked, ‘Can you move your feet for me?’ his reply was ‘No’.
‘Are you sure? Are you sure you can’t wiggle your big toe?’
He stared down at his feet and concentrated. Nothing happened.
I touched them gently, but he couldn’t feel them either. He was exactly the same as his preoperative state.
‘It’s okay,’ I said, as much to his parents as to him. ‘It can take some time.’
The following day produced the same response. Dad was beginning to go crazy. He wanted a result.
‘As I said, the surgery went as well as we anticipated. How it manifests itself is less clear. But it’s early days.’
‘Early days? How long are we expected to wait?’
‘As long as it takes.’
Every day I walked the wards and every day it was the same story. ‘Can you wiggle your toes?’
‘No.’
‘Are you sure? None of them? Can you wiggle your big toe?’ It’s stupid, but every time I ask someone to do that, I remember it being said in Quentin Tarantino’s Kill Bill: Volume 1 film. Except in that case it’s the patient, played by Uma Thurman, ordering herself to do it.
Anyway, back at John Radcliffe, he couldn’t. ‘That’s okay. There’s always tomorrow.’
As each day passed by, Mum became more resigned, more sanguine. Dad, by contrast, was increasingly wound up. He wanted answers, he wanted results. ‘When will he be able to run? When will he cycle? When will he be able to take up boxing?’ At least that is what came out of his mouth. What he really sought, however, was absolution. He was haunted by the idea that he was responsible for his son’s condition. ‘Why didn’t I listen to him when he said his tummy hurt? Why didn’t I notice when his walking changed? Maybe if I’d woken him up an hour earlier, then we could have picked it up an hour earlier and you might have saved something.’
It was as painful watching him torturing himself as it was registering zero improvement in my patient. Nothing was Dad’s fault. It’s human nature to say to a child who’s complaining about anything to ‘run it off’ or ‘go to the toilet’ or ‘get an early night’. They’re all quick fixes that tend to work more often than they don’t.
‘Listen, there was absolutely nothing you did wrong. How on earth could you have known this was going on? You need to forgive yourself and spend your energy on him. It’s early days,’ I reassured him. ‘We have to be patient.’
Rehabilitation is as much about your state of mind as it is about your state of body. You’ve got to really work at it and want to work at it and put the effort in. Whether you’re four years old or forty, it’s all too easy just to lie there and go, ‘Ah, it’s never going to happen.’ And you’d be right. We know that the psychological state of a patient has a direct relationship to the recovery they can enjoy. We tell patients that they ‘need to stimulate the nerves back into action’. But what four-year-old can do that with a father chuntering ‘It hasn’t worked, it hasn’t worked’? I wasn’t just working on my tiny patient. I had to treat Dad as well.
Four days turned into five, turned into six, turned into ten. I was so concerned at that point that I ordered another set of scans. What if a blood clot had occurred on the operation site since I’d been in? That could explain everything. But there was no sign of this. It all seemed fine.
On day eleven I made the same pass through the building. Mum and Dad barely looked up when my team and I swanned in. Eau de guilt filled the room. My solidarity with my patient’s parents was being tested. I would have given anything to have them feel less guilty.
‘Good morning,’ I said, just as I’d done on the previous eleven days. ‘Do you have any news for me?’
‘No,’ my young patient replied. ‘Sorry.’
‘That’s all right, completely okay. But as I’m here, could you just try to wiggle your big toe for me? If you can’t you can’t, that’s okay.’
I’m not sure I was even paying that much attention. It was mainly the reaction of the boy himself that shook me into life. He was giggling, laughing, pointing.
And why? His big toe was wiggling. Just like Uma Thurman’s in 2003. In fact, all of his toes were moving. The extremities of both feet were alive. It was crazy. The most heroic scene that ward had experienced for ages.
Yes, you could say it’s a relatively minuscule part of the body. But the toes are also the furthest from the brain. If the signal is forcing its way down to them, through whatever blockage there had been, then there is a very good chance it is reaching out to the various points in between. In this instance, legs and possibly bowel and bladder.
But that was getting ahead of ourselves. Right now we had a small win on our hands. I was choking with happiness. My trainee and other staff were besides themselves. Mum was gobsmacked. Dad looked like he just wanted to cuddle someone. Of course, his enthusiasm didn’t stop there. ‘Come on, let’s get you up and walking!’
‘Please,’ I said, ‘you have to give him time. Some people in his condition regain control of their ankles and that’s it. That’s where it stops. You can’t force him without making him feel bad.’
He looked so contrite. ‘Yes, yes, of course, you’re totally right.’
As it turns out, and not for the first time, I was totally wrong. It was like turning on a tap. When I swung by for the next morning’s meeting, I was thrilled to see a young boy sitting upright and looking downright bored. He had significant function in his legs. In twenty-four hours he’d gone from wiggling his big toe to flexing his ankle, bending his knee and arching his hips. Remarkable progress even for us old pros.
He was discharged after about three weeks. I was confident by then that full motor performance had returned to his legs and elsewhere. And how did I know? Because on his last day at John Radcliffe he walked, unaided, out of the door. Some days are full of sunshine. We save such memories to balance out against the rainy ones.
Just because you’re out of my ward, it doesn’t mean you’re off my radar. Every six to twelve months, most patients call back in for check-ups so I can monitor progress and see how the physio is going and whether the rehabilitation is on track. Sometimes everything is so perfect that we say goodbye after a year, sometimes three years. Sometimes it’s ongoing forever.
Four years after this lad hobbled back to Northampton, he visited me for the final time. He could barely remember a time when he couldn’t walk as well as everyone else. If it weren’t for my notes I’m not sure I’d have believed it either. Happily, I have no need to see him ever again. But in the meantime, there are the Christmas cards.