‘You’re trying to murder our baby!’: Top children’s brain surgeon JAY JAYAMOHAN recalls the agonising cry of a father whose little boy was slipping away
- Jay Jayamohan is consultant paediatric neurosurgeon at John Radcliffe Hospital
- Young boy was hit by a car and unconscious and scans showed his brain was shot
- Swelling in the brain causes so much pressure within the confines of the skull
Just imagine ten years of contented family life. Reflect on all that’s shared between parents and child. Think of packing your child’s lunch in their bag, kissing them as they set off for school — just like you’ve done so many times before.
Then imagine getting the call to say they’ve been hit by a car and are unconscious in hospital. Nothing in this world prepares you for that.
So it was with the young boy lying on a hospital trolley before me at the John Radcliffe Hospital in Oxford where I’m a consultant paediatric neurosurgeon. Scans showed his brain was shot. It looked as if he’d spent time in a boxing ring.
Jay Jayamohan (pictured) is a Consultant Paediatric Neurosurgeon at the John Radcliffe Hospital in Oxford
We are taking him from A&E to the Paediatric Intensive Care Unit (PICU) when a nurse tells me the news I’ve been expecting and dreading: his parents are here. ‘OK,’ I say. ‘Get them comfortable. I’ll be out as soon as we’re done.’ In other words, get him into PICU and check the pressure inside his skull.
What I don’t say is: ‘Tell them the bad news.’ That’s my job. It’s not something I enjoy. Far from it.
I begin by offering my sincerest condolences for their pain. ‘I have to be honest,’ I continue, ‘your son is not in a good way. His brain has suffered a severe injury. I need to prepare you for the worst.’
There’s silence. Then Dad says: ‘By worst you mean…?’
‘Obviously we’re doing all we can,’ I reply. ‘But I’m sorry to say there is a real chance your son will die.’
They nod. They’re quiet. They cry into each other’s shoulders.
Another scan of the boy confirmed the brain was badly damaged, swollen and becoming worse. I could only imagine the degree of impact to have shaken things up so violently.
‘I begin by offering my sincerest condolences for their pain. ‘I have to be honest,’ I continue, ‘your son is not in a good way. His brain has suffered a severe injury. I need to prepare you for the worst’ (file image)
Swelling in the brain causes so much pressure within the confines of the skull, it restricts the flow of blood.
In a healthy body, when the heart pumps, it pushes the blood through the blood vessels and supplies oxygen to the brain. With a swollen brain, the vessels are compressed, which leads to hypoxia — a reduction in oxygen supply. This then causes further injury to the brain and makes it swell more.
We decide to do a decompressive craniotomy, removing large portions of the boy’s skull to give the brain space.
Our monitors show this halves the pressure — yet within ten minutes the brain is expanding again. I try to stop it by inserting a drain to remove the cerebrospinal fluid. But this doesn’t work, and I soon exhaust my other, limited options.
I reluctantly stitch him up but the brain continues to swell and I can see it seeping through the wound. This poor boy was dying before my eyes.
Such a terrible sight had to be kept from the parents, so we put a bandage on his head.
I talked them through what had happened. They didn’t need to know the gory details but I didn’t deviate from the truth: ‘Your boy is not likely to survive.’
Days passed and the time came for me to have ‘The Conversation’. Again, not a job I would ever countenance asking anyone else to do for me.
After a preamble, I said: ‘Despite our best efforts, there is nothing else to be done. It is my suggestion we let your son die.’
‘Why would you stop?’ Dad asked. ‘He’s alive, isn’t he? His heart is beating.’
‘Yes, it is, but his brain is not working.’
‘But his heart is. He’s alive. As long as he is alive you have to help him,’ Dad said. ‘We want you to. It is the law.’
True, I thought. But as he was to discover, the law had provisions for cases like these.
The following day I’m more emphatic: ‘My medical advice is we disconnect him from the ventilator. We’ll make sure he is not in any pain. You can be with him when he passes away.’
The very insinuation this couple’s first-born child would have his life support extinguished drove Dad to despair. ‘I don’t believe this,’ he shouted. ‘You’re trying to murder our baby!’ He squared up to me; our eyes locked.
I knew it was painful yet had to say: ‘I’m not trying to murder anyone. To all intents and purposes, your son is already dead.’
A few hours later, reception rang me.
‘Could you come down, Jay? There are two people here for you. I didn’t catch the names, but one is a police officer.’ Dad, it seemed, was making waves.
I relayed the story. The lead officer replied: ‘This isn’t a crime. Not even close.’
Dad was adamant. ‘I don’t care what the police say. I forbid you to terminate my son’s life.’
It was time for a judge to decide. I didn’t attend court but soon heard we were now legal guardians of this poor boy.
Yet even with the full might of the law on your side, there’s no easy way of imposing it.
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.
Dad was visibly broken and in probably the worst place anyone could be: about to lose a child. I see it all the time, but it never gets easier.
I am lain bare every time I have ‘The Conversation’. I am not ashamed to say I wept while writing this story, just remembering this boy and his father.
We disconnected the boy from his ventilator. Shortly afterwards, his heart flickered then stopped. He passed away.
I work with rather an expensive toolbox, made up of around 250 instruments. But for all these tools, sometimes I feel utterly impotent — as I did with another young boy, an 11-year-old with a brain tumour.
His mother’s eventual course of action, and my response, torture me to this day.
I managed to remove 90 per cent of the tumour, later found to be malignant. But scans reveal secondary malignant growths — metastases, as we call them — had spread down the spine.
I tell Mum, and advise: ‘Your son is going to need intensive follow-up treatment with chemotherapy and radiotherapy. But this puts him very much on the back foot already.’
I paused. She processed. ‘You can’t cut out these meta-things?’ she asked.
‘I’ve learnt the test of being a good paediatric neurosurgeon is recognising when operating is not the best option. I’ve made my share of egotistical mistakes. But you only do each of them once — and the results are there for ever. That day, I decided, was not a day for ego.
I told her, as kindly as I could, that even with maximum treatment, his chance of survival after five years was around 10 per cent. The poor woman was broken.
The next day, she told me she was very grateful for all we’d done, but then told me she was taking her son to Germany.
Thanks to Google, Mum had found someone who promised they could help. His website looked legitimate. Except he promised to cure cancer with crystals.
I was offering Mum and her son six months making happy memories — or a couple of years of hardship and illness. What I didn’t seem to be offering was a lot of hope.
This man was, though, claiming you can create a healing energy field using semi-precious stones such as opals, amethysts and quartz.
Hogwash. Bunkum. That’s not quite what I told Mum. ‘You’re sure he can help?’ I said.
‘Honestly, no,’ she replied. ‘But can you promise me you can?’
I looked into her eyes and knew she’d drop Germany if I told her what she wanted to hear. My crime was not selling the product hard enough.
But I’m a doctor, a neurosurgeon, a father. I’m not a salesman. And I’m certainly not the snake-oil variety.
‘Do you mind if I ask how you’ll be paying for this treatment?’ I enquired. She didn’t pause. ‘I’m putting the house up for sale.’
‘But where are you going to live? You have three other children. What’s going to happen to you all?’
She smiled. ‘It’s not about money.’
Oh no, I think, that’s where you’re wrong. Money is exactly what it’s about. I could have stepped in. I had legal alternatives. However, it wasn’t my place, I thought.
It still haunts me. All I could emphasise was that her son was not going to survive because of these crystals.
Six months later, she wrote to me, telling me the German trip had been hopeful but ultimately unsuccessful. Her son had died peacefully at home three weeks earlier. The brightest possible spin I give is the whole family ended their time together as a unit, with one final road trip.
Other than that, where were the positives? Where was the family going to live? They’d sold their house. This charlatan had taken everything from them.
To this day I ask myself: should I have enforced textbook NHS care on that young chap?
My friends say I was powerless. But the truth is I wasn’t. It was a choice not to interfere. If I’d wanted to, I could have had her son made a ward of court.
But it’s not about me. It’s never about me. The patient comes first. Win, lose or draw, that’s the only statistic that matters.
And sometimes nobody wins.
Thankfully, sometimes there are shafts of light even in real tragedies. Take the 18-month-old baby referred to me after a sudden collapse and seizures.
Early scans show a clot near the top of the brain. But only when I’m inside baby’s skull do I uncover the real problem. Hiding behind the clot was a tumour.
We get out as much as we can. ‘A tumour?’ asks Mum. ‘Has she got cancer? Is she going to die?’ As ever, I can’t give guarantees.
Later, the lab finds baby’s tumour is a glioblastoma — a very aggressive type — and she endures chemotherapy.
Three months later, the family arrives for an update. I’m desperate to give them good news. Luckily, scans show whatever’s left of the tumour is negligible.
‘What does that mean?’ Dad asks.
‘It means you’ve got a period of quality family life ahead of you. Your daughter is a strong little girl. She’s not giving up.’
When they returned three months later, their toddler caused chaos wandering around my desk. I could tell Mum was getting agitated with her, but I wouldn’t hear of it.
‘Trust me,’ I said, ‘this is the best outcome I could wish for. Treasure the moments, please.’
They took me at my word. A further three months went by and scans remained clear. They were buzzing, full of stories about what they’d been up to.
But something as virulent as glioblastoma doesn’t know when to quit. It returned, this time taking hold in the limbic system — the bit of the brain dealing with your personality and emotion. The part that makes this child her own unique self.
When I operate, there’s nothing I can do to get to the parts of the tumour already enmeshed inside her brain. It will only be a matter of time before it causes her memory and personality to alter.
Sure enough, the now seven-year-old girl becomes listless. The radiant tomboy probably wasn’t ever coming back.
It was so very hard to tell the parents we couldn’t keep operating — yet they surprised me. ‘We don’t want to cause her pain for the sake of it,’ said Dad. ‘We’ve had a good run,’ Mum added. It was exceptionally brave.
When the time came, they took hospice care at home. Of course, it’s sad. But, as the little girl’s parents pointed out, she should have gone nearly six years earlier. The way they viewed it, every day was a bonus. They made their time together count, squeezing out every last drop.
That’s huge, isn’t it? To be able to play a part in this? I think so. I’m a very lucky man.
- Adapted from Everything That Makes Us Human: Case Notes Of A Children’s Brain Surgeon, by Jay Jayamohan, published by Michael O’Mara Books on February 20 at £16.99. © Jay Jayamohan 2020. To order a copy for £13.60 (valid to February 25, 2020; P&P free), visit mailshop.co.uk or call 01603 648155.
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