Everything That Makes Us Human

by Jay Jayamohan

  Not everyone who looks dodgy is dodgy. And even those who are dodgy aren’t necessarily child abusers. So what I can’t do is blame a specific person. What I can say is that this baby suffered a traumatic event after being seen looking perfectly well by three different people at 8 p.m. on the evening in question. It’s then up to the police and Crown Prosecution Service, or the Family Court to decide a) whether my evidence is correct and b) whether it indicates a particular suspect.

  The defence’s case, such as it is, is that Baby fell. My initial response is that two-month-old children have zero ability to climb. Even if they did fall, however, a careful comparison of the findings in this case with the medical literature built up over a century, and my clinical experience built up over somewhat less than that, shows a massive difference between probable injuries as a result of a fall from a sofa height compared to the actual injuries.

  I complete my observations and post them back to the court. The event occurred in September. I’ve been instructed and reported some six months later in March. The trial begins in August.

  Later in the year I give my evidence online. It is consistent with other evidence and the jury finds that the partner injured the child. In my heart and mind I am confident it’s the correct decision based on the facts I’ve read. Which is why, eight months later, I’m so surprised to see that he has won an appeal. I am told that it’s on a ‘legal technicality’ rather than a point of medical evidence.

  But it’s irrelevant: it doesn’t help the baby, now facing a life of major neurological injury and disability. But this is how it must happen – it’s a legal process that has run alongside the treatment and rehabilitation of a small child whose brain function will never recover to any significant level. Feeding tube insertion to the stomach, blindness, lack of voluntary movement or speech – this child’s life, and his mother’s, has been massively and irrevocably changed. Justice, I muse, is at least something we can offer them.

  I’ve written around 500 reports for court cases over fifteen years. I’ve even got some of my other consultant colleagues interested in working in this area now, just as Peter had encouraged me. What I tell everyone, though, is that you can’t be on the side of the defence or the prosecution, of the victim or the family or the accused. You have to just follow the evidence and present it in as coherent a manner as possible. Even if no one else agrees.

  I was called in on a case involving a carer accused of striking a baby with enough force to kill her. The carer insisted that she’d done nothing wrong. All she could state is that Baby had died from injuries sustained after falling from the changing table. However, because that had happened twenty-four hours earlier – in front of a witness – it was ruled out as a potential cause of death, which left the woman fighting to prove her innocence.

  In this case there were no historical injuries to Baby. Just one area of impact trauma on the brain. The falling story seemed plausible. Except for the time at which it occurred. The prosecution had the testimony of four eminent experts in the field. Since death was recorded during the time that the carer was alone with the child, they all concurred that the time when the baby collapsed was the time of the trauma. ‘Babies don’t just go off in your hand’, I read in one report.

  I was aware of a single case report by a couple of pathologists in New York which discussed a nine-month-old baby who had fallen off a bed and seventy-two hours later, having apparently been well in between, was found dead. The post-mortem showed fracture and a brain injury as cause. That the child had been fine for seventy-two hours after the fall shows that, however rare, it was certainly possible for a child to have an impact injury and then have a so-called lucid interval, when they can behave normally, before becoming very unwell or worse.

  The problem of being the first person to discover something is that nobody’s ever heard of it before, so the New York case attracted much attention. Everybody in the US who investigated couldn’t find any evidence of abuse except for the bumps caused by falling out of bed – which had happened in front of a relative. It was then written up as a ‘fatal delayed complication of an impact injury’. I found it very interesting and wondered whether I was looking at another case of it.

  Because of the controversial nature of my report, I was asked to attend court in person. I had already handed over the article to my instruction team, but they weren’t under any obligation to give it to the prosecution.

  When the prosecution’s first expert witness came out, I felt challenged. I hadn’t been doing expert witness work long, and he sounded very knowledgeable. He wasn’t having any of my theory. The defence then asked him whether he had read the case report.

  ‘No.’

  ‘Another copy, please?’ the defence barrister asked the clerk of the court.

  And so it went for three more experts. Only one of them had read it – and I am not sure if that was beforehand or while he was waiting in court watching the others being cross-examined. And at the end they all had the same answer. While they thought it unlikely that a child could be injured, then a day later succumb to those injuries fatally, they had to admit it was possible. And that offered reasonable doubt to the defence.

  The jury were actually saved from making a decision by the prosecution counsel, who stood up and announced that they were withdrawing the charge.

  I was pleased with the outcome, and not just because I had been a lone voice in the defence. There was only one child in the paper published, but it didn’t matter. It proved there was sometimes no black and white in these cases. But it still meant that it was a very unlikely event, leading me to consider whether it was more likely that a different cause was behind it all – maybe one involving abuse?

  What would have happened if that same carer had been accused of another identical assault six months later? Of course, I would mourn any baby’s illness or death – even more so in these circumstances. But I have to take a leaf out of the barrister’s book. They operate a taxi-rank system – take the next case that comes along, regardless of which side it’s for. I do the same. Defence, prosecution, family – it is all the same to me. It has to be to avoid becoming a biased ‘hired gun’. I tell myself that I have to follow my training. I’m a paediatric neurosurgeon. That’s my area of expertise. Stick to the facts. It is for others to interpret the law. But still, what if?

  All this worry and self-doubt chips away at you, but I have to remember just what is at stake here, both for the defendant and for the tiny victim. And if it is a parent under suspicion or on trial, how much worse must it be if you know you are innocent and aren’t even afforded the time and space to mourn or look after your baby?

  CHAPTER TWELVE

  SUCK IT AND SEE

  No patient is ever really done and dusted. At least, that’s how we in paediatric neurosurgery see it. Anyone that passes through our doors is rarely more than six months or a year from returning for a check-up. It doesn’t matter what you came in for or in what condition you leave, there could be years of assessment before the full discharge notice is signed. Just because we’ve fixed one thing, it doesn’t mean it can’t cause other symptoms elsewhere in the body. Some brain conditions happen overnight. Others build up undetected for years before the diagnosis is made.

  Many of the days when I’m not operating are spent dealing with outpatients in clinic or the day ward. I love it. It’s such a potpourri. Children can alter immeasurably in a year. Each time I step out into the waiting room and call a name, I have no idea which person is going to come forward – the cute little pigtailed girl from last year is now heavily made-up, complete with Goth outfit. She is still adorable, but I can’t say that to her now!

  In theory, every operation we perform is intended to leave the patient in a better condition than before, or at least stop the situation worsening. Surgery is a big risk. I’d never do it unless there was a chance of success. Even the misjudgements arise from a desire to improve. The truth is, we can do everything right in theatre, achieve everyt
hing we set out to do, but we still don’t know if it’s successful until that patient wakes up. Even then it could be days, weeks or months before the benefits are fully revealed. Or the drawbacks. The truth is, it’s not always good news. And not everyone gets to walk away.

  It’s a clinic day. I’ve seen the list of patients due to attend their annual or bi-annual check-up. Most of them were mine originally and the ones whose faces I still remember. Others were operated on by my colleagues. What I don’t know is what they’ll be like when they arrive. I’m always excited to see.

  ‘Clare?’ I call out to the packed room. ‘Clare Bennett?’

  Let’s rewind to three months earlier. I was referred this young girl, whom the paediatrician had diagnosed with a condition called Chiari malformation, an abnormality of the back of the base of the brain where tissue extends down into the spinal canal. She was seven when we first saw her and a lovelier young bundle of happiness you would be hard-pressed to find.

  Chiari malformation can be completely asymptomatic – that is, cause absolutely no problems in a patient. Trouble is, in the next one it can be extremely debilitating. If the spinal cord is getting squashed it can affect the function in your arms and legs, with poor balance, pain or funny feelings in the limbs, and often reduced strength even in walking on the flat. It can also affect the nerves supplying the lower part of your face, so chewing or swallowing, plus speech and even eye function, can all be affected.

  Clare was born with some mild cerebral palsy (CP), causing weakness in her left side.

  Chance had played a sneaky hand in Clare’s treatment. As she grew and struggled with walking and hand function, her parents and doctors, naturally, put everything down to her CP – this is what CP causes. It was only around the age of six or seven when it became obvious that she was suffering in both sides of her body, not just on her weaker left side, that someone said, ‘We’d better do a scan here to see what’s going on.’ They were expecting to see more problems in the brain, where CP causes its changes, but actually they found an abnormality in what we call the craniocervical junction, the crossing between the brain and the spine.

  By the time she was referred to me, Clare had deteriorated further, with wobbly hand function, lots of headaches, and really struggling to walk. She was in a right state and getting progressively worse according to notes from her referring doctor. That, as I told her and her parents, was what we had to address.

  ‘I think we need to operate,’ I said to all three of them.

  ‘Can you fix me, Doctor Jay?’ Clare asked.

  ‘Maybe,’ I said. ‘But the main thing is to stop things from getting worse.’

  I explained how the condition could exacerbate over time. The classical teaching is that the aim of surgery here is to stop a deterioration. So we tell the patient, ‘We can’t get back what’s already been lost. But we can protect the rest – the function you still have.’

  Secretly, though, I hoped for more. The body has a way of healing in these cases. I wouldn’t have been surprised to see some motor function return within months. We have tended to operate earlier in the disease history than many units, and we have noticed a proportion of patients get a recovery and regain some of the lost function. But since it would be a bonus – and we couldn’t predict which patients would get the recovery, I don’t offer that up for the family – it wouldn’t be fair to make a decision on that basis.

  There are various ways of treating Chiari malformation. Like all surgeries they come with risks. In this case there was stroke and paralysis, breathing and swallowing problems, meningitis, death, and a risk that the operation doesn’t work or has to be repeated – all of which I explained to Clare and her parents, but I got the thumbs up anyway. The majority of Chiari malformations respond to decompression surgery, so that’s what we did. To the sounds of The Stone Roses’ self-titled debut album, I removed a small piece of bone from the base of Clare’s skull and another from the top of her spine. I opened up the dura and buzzed away the bottom bit of the brain to give the spinal cord and the brainstem some space. The bits we attacked are the cerebellar tonsils, and unless you are a shark or similar, you don’t absolutely need them – a bit like the tonsils at the back of your throat. I was hopeful it would take effect immediately, as brain fluid could flow unimpeded into the spinal cord now that pressure on the brain had been reduced.

  Most children are pretty unwell after this procedure – the foramen magnum decompression – with nausea, vomiting and feeling seasick, and in pain, for about seven days and it can take up to six months to get fully back to their preoperative state. But this time, the day following the operation, I was amazed to see that my young patient was not only awake but also back to her usual smiley self.

  ‘Did you do it, Doctor Jay?’ she asked, before I could get a word in. ‘Did it work?’

  ‘We did what we set out to do,’ I said. ‘Fingers crossed it worked.’

  ‘When will we know?’ Mum asked.

  ‘Hard to say. I’m confident we’ve addressed the actual problem, if you like, so Clare shouldn’t get any worse. But she’s going to take time to actually mend from the operation, that could take weeks or months. You’ll know before I do.’

  I was really hoping for a recovery. It would not happen today or tomorrow or even next month, but I was thinking that it could come in part or in full eventually. We sent her home to recover from the operation, wobbly, but walking on her own. The question was, would she also recover from the Chiari itself?

  And now, three months later in clinic, I was about to find out.

  ‘Clare?’ I call again.

  I’m on the verge of returning to my clinic room, thinking, how unusual it was that she had DNA’d – ‘Did Not Attend’ – when I spy movement at the back of the waiting area. There’s a bit of a kerfuffle as someone on crutches struggles to their feet. They don’t quite have the strength to support themselves on their arms. I’m about to offer to help when I realize. It’s her. It’s Clare. What the hell has happened?

  The whole family are as delightful as always. They’re as mystified as I am as to why Clare has continued to deteriorate. Usually my clinics are for chatting and learning more than ‘doing’, but I am desperate to find some answers.

  ‘Do you mind if we take some more scans, Clare?’ I ask. ‘It’s possible that I didn’t fully release the area during the last operation, or that things have scarred back up.’ Both of these are potential causes of an ongoing problem. So I send her off for some urgent scans and book another clinic visit.

  I wish it helps. But it doesn’t. Everything on the scan looks exactly as I’d hope – there was loads of space around the brain now. So why is she getting worse? Another textbook operation with an unfathomable outcome. I sit there for a minute, my fingers pressed together in the ‘church’ pose. I’m thinking. Thinking and thinking.

  ‘All I can suggest,’ I say eventually, ‘is that we have another go.’

  All three of them – Mum, Dad and Clare – jump at the idea. For all their positivity, I think they are in dire need of a ‘quick fix’. I need to temper this straight away.

  ‘The facts of the matter are that we performed a good operation that should have gone a long way to stabilizing you. That hasn’t happened. The scans look clear, but maybe there’s something “invisible” to the scan that’s in the base of your skull and doesn’t want to go away – some small strands of scar tissue that are holding everything down, but which are too fine to see on the MRI. I would like another chance at finding it, but you should be aware of the risks.’

  I trot them out: damage to the spinal cord, damage to the brainstem, damage to the brain, contraction of meningitis or some other serious disease.

  Dad shrugs. ‘Paracetamol comes with worse warnings.’ I smile ruefully. Although this may be true, the fact is that the risks of a reoperation are almost always more than the first one, because we don’t have the usual anatomical markers and layers to guide us.

  ‘What
would you do if it were your daughter, Doctor Jay?’ Clare asks.

  I think of my three girls sitting at home. ‘You know what? I’d go for it. Yes, I don’t know what I’m looking for. Yes, it’s basically a fishing expedition. A suck-it-and-see mission. But given what’s happened, I can’t see an alternative, other than to accept that the deterioration may progress to paralysis.’

  We perform the surgery. As predicted, it’s more difficult the second time round. I wanted to double-check that the spine didn’t need untethering, that there was free-flowing fluid and that the mobility of the skull and spine weren’t being impeded or impacting on crucial nerves. But I find nothing. Zero. Squat.

  The best I could do was to retrace my original footsteps and ‘redo’ the cuts I’d made. Perhaps we’d get lucky. That was the stage we were at. Calling on good fortune to dig us out.

  Once again, I am surprised by just how ebullient Clare is in recovery. Her eyes sparkled with the joys of life. If I could have played the Joker card on anyone’s health, I’m pretty sure I would have chosen her. She deserved it.

  I report back to the family and confirm, once again, that all we can do now is wait. ‘How long?’ Mum asks.

  ‘Let’s say three months,’ I reply. ‘I really hope we’ll see changes by then.’

  And I was right …

  ‘Clare? Clare Bennett?’

  It’s the moment of truth. Nearly four months have in fact passed since I performed the second operation on the young girl with Chiari malformation and CP complications. I can’t pretend that I thought about her every day – impossible given the number of people I treat each week – but she’s not been far from my mind. More than anything I just want to know how she’s doing.