Unfortunately for them, the scans aren’t designed to show what you deserve. They show what you have. And what this couple had was the prospect of life with a severely disabled child. I’d like to say that it was just one of those things, a roll of the dice and it could happen to anyone. That’s what your neighbour or your best friend would say to make you feel better. As a neurosurgeon, a man of the disinfected cloth, I held a different view, as harsh as it seemed.
Looking at the couple’s charts I saw a myriad of lost attempts. So many pregnancies, so many miscarriages, so much heartache, but no discernible cause. Miscarriages do occur for random reasons, but multiple occasions can suggest a deep-lying problem. Maybe there’s a genetic thing going on. Perhaps it’s a fatal outcome of the chromosome mix of Mum and Dad. Hell, maybe it’s the wrong star signs combining – at this stage nobody knows for sure. All we can go on is the proportion of failures compared to successful pregnancies. And this one did, initially, appear successful. Until the sonographer handed in her homework.
Walking back to see the same obstetrician with whom I’d literally just had my own appointment was a struggle, I’ll be honest. Barely twenty minutes ago we’d been talking about my own prospective bonny, healthy, lung-bustingly normal baby. Now here I was, alongside the same man, about to counsel two innocent victims of genetic fate. Talk about mixed emotions. I was still buzzing with my own family news until the second he handed over the scans. Then I was on autopilot. I felt all trace of my wife and the baby fade. Jay the dad no longer existed. Jay the neurosurgeon was in the room.
The parents-to-be were perfectly lovely and clearly in love. For obvious reasons I found myself opening up about my own situation. ‘Listen, you know what, my wife is pregnant right now. We had our own scans this morning. I know exactly the huge elation you’ve been feeling up until now and I can only imagine the huge sword that is being passed through you at the idea of having to come and see me. But we’ve got to get through this, we need to talk about it and then you need to make a plan.’
‘A plan?’ Dad said. ‘Don’t we just come back in twenty weeks’ time?’
Oh, I realized, you’re one of those.
I’m so used to being asked my opinion that it can come as a shock when it’s not required. If you ask Jay the physician for his views on your situation, he’ll tell you facts and conclude, ‘But the decision is yours.’ If you ask Jay the man – the father – what he would do, he’ll say, ‘I’d go ahead with the birth’ or ‘I’d terminate in the interests of the baby’s health.’ I can’t not, as a living, breathing person, have an opinion. I can’t not put myself in every single parent’s shoes. Though I’d rather not, as it’s a horrible place to be.
To decide not to consult an expert at all is a bit like being lost in a desert and having a map but choosing not to use it. If you believe that God will lead you to safety quicker than any science, then why would you ask science?
I get it, I do. At least I think I do. I think sometimes I am religious, but just really pissed off at what God is letting happen in the world and to my patients. At other times, I decide I don’t believe at all. Is that petulance because God isn’t doing what I expect him/her to do? Who knows? And anyway, I need to leave that at the door. Like Dr McCoy almost said in Star Trek, ‘Dammit Jim, I’m a doctor, not a Hindu’. That would have been an awesome episode, by the way.
Even though on a census they might identify as Christian, most of the Caucasian native population of Britain – for want of a better overall description – are not particularly religious. They arrive, I advise, I guide and they base their decisions on my input. They’re all very grateful that these options are there.
But not so much the devout. Not the extremely religious of any faith. In my experience, they tend to put their religious views above even their personal views. I can see a lot of them are very torn by the decisions that they make. Their instincts as parents – as humans – are screaming one thing, but their training, their upbringing, their allegiance and their fealty to the flock dictates another path. ‘This is what God wants.’
I’m just a man in an invisible white coat. I can’t argue with that.
I can see the parents in front of me are more torn than they are letting on. In a strange way, so am I. Up until the moment of their child’s birth, these two mature adults are my patients. The second we have delivery, their concerns will radically reduce on my radar. I’ll be all about the baby. That is, if we get that far.
I still haven’t worked out if a termination will be decided here. I have a few more probabilities and possibilities I need to get through to them before they make up their minds.
‘To be clear,’ I say, ‘your baby, should you go full term, is never going to enjoy a life as you and I experience it. Your child is, as close as certainty allows, probably going to need multiple operations. They may be dependent on a ventilator for the rest of their life. And by life I mean “short life”. The expectancy for a patient with so severe a condition is probably measured in months or single years.’
The pair are nodding. I honestly think I might be making headway. A few more stats and perhaps I can stop and get their opinion.
‘We understand the difficulties,’ Dad says. ‘Yes, our baby’s life might be short. But that short life is important to us.’
‘Okay,’ I reply. ‘If that’s your decision, then I shall support your choice.’
I’d like to say my prognosis was wayward, that the baby’s afflictions weren’t half as severe as I’d predicted. But I can’t. He arrived eighteen weeks later in dire need of surgical intervention. The only consolation was that we were forewarned. Everything was set up. From birth to the first ventilator took minutes not days.
On top of everything else, the baby had severe chromosomal anomalies, a really damaged brain and no end of problems. In between every visit to theatre he was put on a ventilator.
Every procedure went like clockwork. We achieved the maximum I hoped we could. But it was never enough. We were always fighting a rising tide. Trying to build a sandcastle as the waves encroached further up the beach.
After the first operation I spoke to the parents. ‘Listen,’ I said, ‘it’s looking really bad here. We need to think about how far you want to go.’
They squeezed each other’s hands and Mum replied, ‘We want you to continue to go all the way. If God wants it to, this will work out.’
‘Okay.’
It was the same curt conversation following the second procedure and the third. Before I was due to operate for a fourth time I said, ‘I have to be honest. Your child is not going to get better from this intervention. Your child will eventually die. I estimate within weeks, but it’s possible it may take months. This is no way for him to live.’
To which Dad responded, ‘Can you be absolutely sure? Can you give us an absolute guarantee that this child cannot survive at all?’
And, you know what? I couldn’t. Sometimes being 99.9 per cent sure just isn’t enough. ‘No,’ I said, ‘I’d be really surprised if it happened, but I can’t give that cast-iron guarantee.’
He turned to his wife. They smiled at each other and kissed. Then, looking back at me, he replied, ‘Well, in that case, it’s not up to you. It’s up to God to decide. So please, do your job, keep going. Do everything you can.’
I shrugged. Not because I didn’t care, but I didn’t see any point arguing with them. At the end of the day I am a servant to the patient rather than the parents, and if we really wanted to, we could make this a legal fight. But I didn’t wish to do that. This poor family were struggling and needed support. Sure, they had it from God, but that’s also partly our role. But I needed to ensure we were always keeping my little patient’s needs at the top.
‘I’m not sure you understand the severity of your son’s condition. It is my professional opinion that if your child stops breathing, we shouldn’t put him back on the breathing machine again. If we do, he’s probably going to be there for life.’
‘Sir, you possess wonderful abilities and skills because God has given them to you. Please show your gratitude by continuing His will.’
For two months the baby never left the hospital. Never went home. Never experienced life without being plugged into one machine or other. The parents were regular visitors. One or both was present for a few hours every permitted session although, as the weeks became months, those visits grew shorter and shorter. The ward nurses, on the other hand, were there permanently. They had to be. They tended the boy, cared for him, cleaned and fed him. Like they do for all patients. It can be hugely distressing for these deeply caring women and men to look after the same child for too long. Attachments are great, but if the outcome is bad they can be a weapon turned. The nurses tend to rotate around patients to avoid this, but if you are on there long enough, you will end up being the object of affection of all the nurses. I watched, on day seventy, as they began their morning procedures. Strolling over, I asked, ‘How’s he doing?’
‘He’s not happy,’ one of them replied. ‘Watch the monitor as I clean him.’
I did. I saw how his heart rate spiked when the damp cotton-wool ball touched his tiny body. You’d expect some kind of reaction, but this was higher, more akin to distress.
‘Everything hurts,’ she said. ‘It’s not right.’
I couldn’t agree more. I just needed two other people to do the same. Or rather, I just had to persuade one of them …
It’s very rare that two adults, two parents, agree 100 per cent on every topic. Dinners, sugar, screen time, bedtime, swearing, chores – you name it, there’s wriggle room between parents on every topic. I am betting the farm that this more serious topic would be even more divisive.
‘I’ll speak to them again,’ I promised one of the nurses. ‘When do you expect Mum in?’
‘Well, she was here for twenty minutes yesterday around lunchtime. I suppose she’ll do the same today.’
I realized the nurse was having a dig at the parents, but in an odd way I took it as ‘good’ news. The fact that Mum and Dad were winding down their visits, downgrading them if you like, told me that on some subconscious level they were resigned to losing. Losing the fight with the disease, losing the son they had yet to hold. It’s surprisingly common for parents in pain to drift away. It’s like throwing up a wall between them and their pain. If they can’t see the baby, they can’t be hurt.
‘Bleep me immediately when the mum arrives,’ I asked the nurse. ‘I need to have a chat.’
It was closer to 3 o’clock in the afternoon when I got word she was in the house. I ran down to the special-care baby unit, and accidentally-on-purpose bumped into her.
‘Any change?’ she asked, forlornly.
‘No,’ I replied, ‘but I think you already knew that.’
She sighs.
‘Look,’ I said, ‘I know you believe that a greater power deigns this to be so. And I respect that, I do. But I have to say, you are not my patient. My loyalty – my moral and legal loyalty – is with that tiny baby attached to the breathing machine in the incubator. And I am telling you that subjecting him to any more treatments is not going to get him better.’
‘But …’ she began, then faltered.
I continued. ‘I think our choices are hurting him. Causing him pain he need not suffer. There is no medical justification for continuing treatment for your baby. He’s not getting better, he will never get better and every day that he draws assisted breath is another day of hurt and distress for him. Now, as a surgeon, as doctors, we do cause pain to babies all the time, but that is part of a treatment that we think will get them better. That isn’t what is happening here. Please, speak with your husband.’
Eventually, the dad came round. We agreed that the child had no real hope of survival. We just stopped artificially forcing him to stay alive. We focused our work on ensuring the baby would be comfortable and pain free. The end was natural and peaceful. Both parents were in shock. They’d put their faith in the Lord showing their son the way. Perhaps, after all, it had been a test. I’m inclined to think that’s how they interpreted it.
I have to be honest. This was the outcome I thought was needed. Did it give me any satisfaction to prove the parents wrong? No. Zero. My feelings are with my patient, the little mite who struggled in vain to survive against remarkable odds. If I couldn’t help him, I just wanted to comfort him. Finally, I’d done that.
I’m confident, following conversations with both parents, that no one could argue we’d not done our best. Put a gun to my head and we could have kept that baby alive for weeks more. But that would not have been in the baby’s interests. Or, ultimately, those of his family. I know we did what was right for that child. And I’m comfortable with that.
Dad eventually came to that conclusion, too. When the tears dried up, he shook my hand and thanked me for my efforts and for doing my best for his son. As much as I disagreed with his original logic, I was proud at that moment. For weeks we’d been at ideological loggerheads. At last we were on the same page. Each of us had only ever had his baby’s best interests at heart, we could all see that now.
Or, as the obstetrician put it, ‘You got him to admit that you were the only higher power?’
‘I did nothing of the sort,’ I replied. ‘I’m just grateful he didn’t accuse me of murdering his baby.’
Because, trust me, that goes on as well …
CHAPTER SEVENTEEN
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.
Everything That Makes Us Human Page 19
