YOU’RE TRYING TO MURDER OUR BABY!
It’s human nature to try to establish order from chaos. To posture as though you’re in control of your surroundings. It’s a point of principle that my department operates with no real waiting lists. If you need to be seen, you will be seen. Not in six months, not in six weeks, but today or tomorrow. I won’t necessarily be there, but one of my team will be. Our business tends not to be the kind that fits well with waiting.
So much of our work is about planning. But some things you cannot anticipate. Like a ten-year-old boy running out into traffic. When the alarm rings we go running. Drop everything, forget everything, get your arse over to A&E or PICU – the Paediatric Intensive Care Unit. He was a local kid, so was naturally brought into our A&E. The second they twigged it was brain trauma, our number was called.
The first responders had the full card. ‘Ten-year-old male, road traffic accident, suspected serious head injury.’
To look at the boy you’d never guess what he’d been through – what he was still going through. There were a few facial abrasions and mild bruising to the scalp, but no more than if he’d come off his bike. We probably all experienced worse as kids.
I performed the light test by shining a small torch in his eyes. The pupils reacted, which indicated brain activity. Always a good sign. It meant there was somebody home. The question was, for how long?
Breathing was clearly a problem. The boy’s body was not really making a great deal of respiratory effort. Before we did anything else, he needed to be hooked up to a ventilator.
A CT scan is a fairly rudimentary test, but it does give a ballpark picture. And this boy’s picture did not look good. Whatever mild state his face and hands were in, his brain was shot. It looked as though the boy had spent some time in a boxing ring. I could only imagine the degree of impact to have shaken things up so violently. And I wasn’t the only one thinking about it.
Giving birth can be such a traumatic experience. Babies are, by definition, so defenceless, so weak, so dependent on grown-ups to fulfil all their needs. For first-time parents it can be a testing time, not knowing what you’re doing, whether you’re doing it right, whether you’re doing it often enough. We all go through it. But at some point, things begin to settle down. You realize you do know what you’re doing, you love your baby and everything is going to be all right. And then something like this happens.
Imagine ten years of sweet, contented family life. Reflect on all the milestones you go through, all the laughter and tears and experiences shared between parents and child. See yourself looking back and wondering where all the time went, then looking forward and plotting a lifetime of potential achievement. Think of packing your son’s sandwiches in his bag, kissing him on his head and setting him off for school, just like you’ve done so many times before. Then imagine getting the call to say he’s unconscious in hospital. Nothing in this world prepares you for that.
We’re transporting the boy from A&E to the PICU when a nurse tells me the news I’ve been expecting and dreading. ‘The parents are here.’
‘Okay,’ I say. ‘Get them comfortable. I’ll be out as soon as we’re done in here.’
What I don’t say is: ‘Tell them the bad news.’ That’s my job. It’s not something I enjoy, but I know how to do it. I know I can share terrible news, wreck people’s lives on occasion, and later process it in a way that enables me, only a little bit broken, to go home to my own family at night. This nurse might be built the same way. She might be able to distance herself from the personal agony of imparting such devastating information. Or she might find herself permanently scarred by the knowledge that she’s broken two people’s hearts on a random Tuesday afternoon in May. It’s not a risk I intend to take.
He’s my patient. It’s my responsibility. If there are to be tears and acrimony, I want them directed at me. I’m tall, I’ve broad shoulders literally and metaphorically, as well as a big belly. I can take it. But first, we have to do what we can to save him.
A massive brain trauma is much like twisting your ankle. You don’t really know how severe it is until the next day. I know from the scans that what I’m basically looking at is some really bad brain damage. The fact that the boy’s eyes are responding is a good sign. I want to know if they’re the extent of his abilities or the beginning. To do that, one of the things I need to monitor is the pressure of his brain against the skull. Conditions like hydrocephalus, bleeding or brain swelling can form at any time. We need to be ready.
To do anything we need to get inside without causing any more damage. Luckily, there’s a doorway to Narnia. Amazing as it sounds, given how incredibly intricate the brain is and how easily one can destroy a life with just a millimetre’s inaccuracy, there are actually places within that we don’t really use. If you look at the face and take a line up from the right pupil and intersect it with a line from the top of the ear, there’s the right frontal lobe – a quiet part of the brain that just sits there and doesn’t seem to do that much. Perhaps in a few years we’ll discover that it’s a more important part of the whole structure. But based on what we know today, it’s generally just padding or filler, which makes it the perfect location for an intracranial pressure monitor.
The boy is under. The anaesthetic will keep him calm. I barely need ten minutes. While I watch, the junior doctor makes a little nick in the skin in the right frontal region, and then drills a small hole, about the size you would put in your wall when hanging up a small picture. Through that, she feeds in a piezoelectric wire. It’s basically a fancy version of the technology you use to light a gas ring on a cooker: press the ignition, an electrical charge passes along the cable and it triggers combustion with the gas emission. In this instance, when the brain compresses around the wire, it causes a current which gets converted into pressure and is measured by our pressure machine in millimetres of mercury (mmHg). A normal reading would be between 5 and 10 mmHg.
A few seconds after the wire goes in, I check the monitor. It shows 16 mmHg, which is borderline high, but not out of control. Maybe we’ll be okay. But just like twisting an ankle, the real swelling is probably yet to come.
I sigh, pull down my mask and wash my hands. Now for the tricky part. Time to talk to the parents.
There’s no right way to deal with stress. Often I meet parents who choose to stand apart, on opposite sides of the room, one facing this way, one facing the other. It’s not intentional. They don’t mean to put up such a disunited front. They’re responding as individuals, as humans, as best they can. Others seem determined to share the same body space. They’re so close as to cast a single shadow. And I’m looking at a single shadow now.
I begin by offering my sincerest condolences for their pain. I can’t imagine what they’re going through as parents. It would be presumptuous even to project. But that doesn’t mean I can lie to them.
‘I have to be honest,’ I begin, ‘your son is not in a good way. Our initial tests show his brain has suffered a severe injury. It may well prove to be unsalvageable. As unimaginable as it may seem, I need to prepare you for the worst.’
There’s silence. Then Dad says, ‘By worst you mean … ?’
I nod. He knows the answer. She knows the answer. But I have to say it. ‘We’re running tests right now and obviously we’re doing everything we can. But, I’m sorry to say, there is a real chance your son will die from this injury.’
They nod. They’re quiet. They’re huddled together as one. When they cry, it’s into each other’s shoulders.
Just because the prognosis seemed fatal, it didn’t mean we were giving up. Far from it. As expected, within six hours there was a serious change in the cranium. The brain was swelling at a pace that would prove catastrophic if left untreated. I needed a theatre slot tout de suite.
The results of a follow-up scan confirm in pictures what the piezoelectric reading said in numbers. The brain is swollen and still growing. The pressure on the skull is nearing breaking point. Everyone in the room knows what needs to happen, but I announce it anyway, in my best surgeon’s voice: ‘We need to do a decompressive craniectomy on this boy.’ In shorthand we sometimes say we are going to ‘pop the top’. We will be removing large portions of the skull and opening the dura up to allow the brain space to swell.
The 1980s ‘Throwback Thursday’ music starts and we begin.
Swelling in the brain causes so much pressure that it starts to restrict the flow of blood. In a healthy body, when the heart pumps it pushes the blood up through the blood vessels and supplies oxygen to the brain. Usually, there is no opposition. With a swelling brain, however, those vessels are essentially being compressed, which leads to hypoxia – a reduction in oxygen supply. This then causes injury to the brain and makes it swell up. It becomes a vicious cycle where the swelling causes less oxygen delivery, which causes more swelling, then reduces oxygen flow, ad infinitum or death … Hence the need to pop the top.
We could say ‘lift the hood’ or ‘open the bonnet’ or any of the other terms that car mechanics use. But ‘pop the top’ does it so succinctly. We need to see the meat of the matter and there’s only one way in.
The mere act of cutting away the crown of the skull halves the pressure reading. For the change to be so drastic, the boy’s brain must have been so tightly compressed. Within ten minutes, however, the brain is beginning to expand again.
I feed an external ventricular drain into the middle of the brain. The idea is to remove the cerebrospinal fluid. The goal is to give the brain tissue enough space to try to fight back. Everything I do is a step in the right direction. I know that, because the pressure on the brain drops. But only briefly. I close the skin over the angry brain. We sit and watch for a while in theatre. Nothing I do prevents the pressure heading upwards.
I only have so many options. When I’ve exhausted them all, I find myself staring at this battered and bruised young head. What does it want? What is it fighting for? It’s mesmerizing. Like watching a pot on the stove. What should be 1.5 kg of solid brain matter is a malleable ballooning mush. Even if I get it back to normal size, I’m not sure what there is left to save.
Another scan confirmed my fears. The brain was disintegrating. To all intents and purposes it was melting, beginning to wipe itself out. With the pressure under control and the ‘top’ popped back on, the boy was returned to PICU. While the family went outside to make some calls, I left the child under the watchful eye of the intensive care team. It was barely half an hour before I was summoned back.
Nurses are wonderful people, professional and empathetic. They see things and do things on a daily basis that would mentally scar a ‘normal’ person for years. Even so, watching two twenty-somethings deal with what was coming out of my patient had me marvelling at their capabilities. One had her hand over where I’d stitched up the boy’s head. The other was providing swabs and disposing of dirty ones.
‘Is this what I think it is?’ asked one, plugging the flow with her fingers.
I grimaced. ‘Yeah, I’m afraid so. It’s brain.’
I remember being in Glasgow, years ago, and rushing in to find nurses in a similar situation. I was a newbie then, fresh off the boat medically speaking, quite impressionable and easy to shock. I looked on, enthralled as this mature Scottish lady lovingly sponged the emissions from the patient’s head. When she saw me watching, she held up her wet tissue and said, ‘Well, that’s his school memories gone.’
It’s dark humour, hideously so, but what else can you do? The nurse then was literally wiping away smears of a patient’s brain, just as the young women in front of me, twenty years later, were doing. Imagine squeezing a toothpaste tube and watching the last dregs ooze out. That is what I was witnessing. Brainy ‘paste’ was seeping inexorably from the holes where the stitches had been put in. It looked like bloody rice pudding. The brain was obviously taking on water and getting soft and mushy as part of the dying process. I really felt for the nurses. No one should have to do that.
Such a terrible sight had to be kept from the parents, so we put a bandage on the boy’s head.
Mum and Dad soon returned from phoning their relatives – what a job. I talked them through what had happened, and we decided to wait and see how things would develop. They had not left the hospital once in the thirty-six hours since their son had been admitted. I’d kept them as up to date as I could, briefing them before and after all the various procedures. Some chats were more detailed than others depending on time and knowledge. I pulled my punches, a little bit. They didn’t need to know all the gory details. What I didn’t do, however, was deviate from the truth of the matter which was, essentially, ‘Your boy is not likely to survive.’
As the hours and days went on, they grew more resigned to his fate. Or so I thought.
The time finally came for me to have ‘The Conversation’. Again, it’s not a job I would ever countenance asking anyone else to endure. The parents had fresh coffees when I found them in the waiting room. I was in my blues, having just emerged from theatre. I brought my PICU consultant colleague with me, as we always try to do this as a team. I had a rough idea of what I was going to say and a rough idea of how they’d respond.
So I began. I recapped all the efforts we’d made to keep their child alive. None of it was fresh news to the parents. At the end I said, ‘Despite our best efforts, there is nothing else to be done. It is my suggestion that we let your son die.’
Everyone takes the news in their own way. Generally, I’ve got to know people well enough to predict how they’ll be. This pair, I was confident, would understand and accept their fate, never forgetting the heartbreak. In reality, it was quite the opposite response.
‘Why would you stop?’ Dad asked. ‘He’s alive, isn’t he? His heart is still beating.’
‘Yes, it is, but his brain is not working.’
‘But his heart is. That means he’s breathing. He’s alive.’
I let the conversation move around the dance floor a little, going nowhere, then pointed into the PICU. ‘You know that bandage around your son’s head? It’s there because his brain is so damaged and swollen that it is actually leaking through the incision in his skin. That’s a really, really bad place to be.’
As fireside chats go, it was like using a sledgehammer to crack a nut, but I was stumped by their reaction so far. And still it didn’t work.
‘You’re our doctors,’ Dad said. ‘Don’t let our son down. Please keep working.’
It was an awful situation. The boy was as good as brain-dead. I hadn’t yet conducted a brainstem test to check for brain death, but I was pretty sure of the final result. I tried once again to explain the severity of the situation to the parents.
‘If we’d done nothing when your son arrived he would have died. If at any stage since he’s been here that we hadn’t acted, he would have died. His brain is dying if not dead. He is being breath-assisted by a machine. Apart from minimizing his pain, there is very little we can do.
‘As long as he is alive, you have to help him,’ Dad replied. ‘We want you to. It is the law.’
Yes, I thought, yes, it is. But the law also has provisions for cases like these.
There was nothing more to be done. We could replace the bandages, clean the exit wound, supply pain relief and anaesthetics, and make sure the ventilator stayed plugged in. Nothing else was going to change. No new brain was going to evolve. Junior wasn’t ever likely to spring back into life.
I left it overnight and approached the family once again the next day. This time I was more emphatic. I had the measure of them now. ‘My medical advice to you both is that we disconnect him from the ventilator. He won’t breathe for himself, but we will make sure he is not in any pain or distress. We can be in a side room and you can be with him when he passes away.’ Or words to that effect.
Honestly, I don’t think it would have mattered what I said. The very insinuation that this couple’s hard-fought, first-born child would have his life support extinguished drove the dad, in particular, to despair.
‘I don’t believe this,’ he shouted. ‘You’re trying to murder our baby!’
He squared right up to me. He pushed his chest into mine. Our eyes locked. The saving grace was that mine were about 6 inches higher than his. I towered over him. I was the wrong person to be physically intimidated. I’m big, I can soak it up. Of course, if he’d done the same thing to one of my staff, particularly one of the slighter nurses, it could have been a very different story. In such situations you have to let the parents vent. I knew it was painful. I knew it was an unpleasant truth to face. Even so, I had to say it. ‘I’m not trying to murder anyone. To all intents and purposes, your son is already dead.’
The truth of the matter was, very simply, that their son had been as good as killed by the car that hit him. He was currently dying on one of our beds not because of our treatment, but despite it. We had done everything in the playbook to extend that poor soul’s chances.
I decided to give it another couple of hours before I broached the subject with the parents again. As it turned out, I didn’t get the chance.
I was back in my office, prepping for another case, when the phone rang. It was reception at the PICU. ‘Could you come down please, Jay? There are two people here to see you.’
‘Okay,’ I said. ‘Who are they?’
‘I didn’t catch the names, but one of them is a police officer.’
It’s the quiet ones you have to watch out for. Dad was forty-five, middle class and as average as you could imagine. Obviously well kept, well dressed, well mannered. Nothing about him was pompous or snobby or aggressive. He’d probably never said boo to a goose his entire life. But on this occasion, he was making waves. I’d seen it before. He was Daddy Bear looking out for his cub.
The only thing I’d never seen before was a police officer, investigating ME.
I relayed the events of the previous forty-eight hours. Because he was the victim of a road traffic accident, the police already had the boy’s details on file. When I’d finished explaining, the lead guy said, ‘Right, okay, so what you’re telling us is this boy has a completely unsurvivable injury and you’re suggesting that you stop treatment?’
‘It’s standard procedure,’ I said. ‘So yes.’
‘Well then, you’re okay. That’s not really a crime. Not even close.’
The policemen were as apologetic as they could be. I got it, I understood. They’d had a visit at the station from a stressed, anxious, terrified father accusing me of heinous behaviour. They had a duty to investigate. Now they had a duty to repair the damage. Up to a point.
‘Can you do me a favour and tell the dad that I have no choice but to stop treatment here?’
‘Yeah, well, we could,’ the officer said, smiling grimly – the sort of smile I only see from coppers, firemen, ambulance techs, nurses and doctors. It’s the smile of people who have seen the ass-end of life, who’ve witnessed what people can do to each other and the terrible circumstances they’re forced to endure. ‘But maybe that would be better coming from you.’
And with that they were gone. The cowards, I thought, jealously.
Dad took this development as well as could be expected. Which is to say, he buried his head further in the sand. ‘I don’t care what the police say,’ he said. ‘I forbid you to terminate my son’s life.’
No amount of reasoning was going to work. It was time to bring in the big guns.
When I’m in theatre, when I have Talking Heads or whoever blasting out, I become detached from the world around me and can imagine I’m all alone. In that moment, I’m exactly where I need to be. If I’m honest, I’m rarely happier.
But there is an outside world and I am actually part of a much larger organization. Too often that organization is just a conduit for excessive paperwork and unnecessary meetings. Occasionally, though, it’s a godsend, like when you’re seeking to make a patient a ward of court.
I gave my boss the heads-up. Then I spoke to the doctors in the PICU and we filled out the relevant forms. The boy was technically their patient. Between the two departments we had a concrete deposition for court.
Most people have experienced the ‘law’s delay’. If this were a motion to get a child rescued from neglect, I’d expect it to take a week or two. For this particular case that would not do.
I didn’t attend court, but I got the message that we’d been successful. A judge had squeezed the application into his schedule and made the decision. We – the hospital, the doctors – were now the legal guardians of this poor little boy.
I took no pleasure from ‘winning’ this particular battle. It basically meant we had the authority to cease giving care to a ten-year-old boy. On what planet would that be called a win?
Unlike me, Dad had gone to court. He’d railed at the judge, done everything he could to get the motion denied. The judge commented that he clearly loved his son but, in this instance, the right thing to do wasn’t necessarily the instinct of a parent.
It was only late in the day that I got the news that the parents were very religious. A nurse on the PICU ward told me on the phone that they were seeking spiritual guidance. Later that day, a vicar arrived to speak with them.
I had high hopes for the outcome. But they were misplaced. The dad chucked the clergyman out on his ear yelling, ‘You’re all in it together!’
Okay, I thought, I tried. But now it’s time …
Even with the full might of the law on your side, there is no easy way of imposing it. I wasn’t dealing with a madman, a psychopath or someone who was out to hurt or maim another. I was in the presence of a dad torn apart by his desire to save his family. Whatever happened, there would be no winners here today. Not him and certainly not his son.
We always invite loved ones to be involved in last contact. They might want to hold their child’s hand, to pray or just be present in the room, but perhaps looking the other way. It makes no odds to me. As long as everyone gets the ending they need.
Four days in, Dad was unrecognizable from the man who’d physically threatened me. His shoulders were sagging, his hair unbrushed. He was a broken man. He felt he had let his family down. I could see it in his eyes.
We had not just rushed in once the legal decision was made. We had left it in the background, an unspoken decision about the direction of travel. But this poor man was in probably the worst place anyone could be. About to lose a child. I see it all the time, but it never gets easier. It never stops piercing my attempts to protect myself from my work, like tiny little stab wounds that will no doubt eventually do me in. I am lain bare every time I have the conversation. In fact, I am not ashamed to say that I have wept while correcting this chapter, just remembering this man. Perhaps I am not the best person to do my job, I often think. But then again, where else would I be?
We walked silently over to the PICU. Everyone was made comfortable. Then we disconnected the boy from his ventilator. His oxygen levels dropped. I could see it on the machine. I witnessed him not making any kind of struggle. Shortly afterwards, his heart flickered then stopped completely, joining his brain. He was dead. It was over.
We did our best. All of us. Medical team and family. We all had that little ten-year-old’s best interests at heart. We just had different ways of going about it.