Imagine happy family life for ten years. Think about everything that is shared between parents and child. Think of packing your child’s lunch in their bag, kissing them while they leave for school – just like you’ve done so many times before.
Then imagine that you get the call to say that they have been hit by a car and are unconscious in the hospital. Nothing in this world prepares you for that.
So it was with the young boy who was lying on a hospital wagon in front of me at John Radcliffe Hospital in Oxford, where I am a pediatric neurosurgeon consultant. Scans showed that his brain was shot. It seemed as if he had spent time in a boxing ring.
Jay Jayamohan (photo) is a Pediatric Neurosurgeon Consultant at John Radcliffe Hospital in Oxford
We take him from A&E to the Pediatric Intensive Care Unit (PICU) when a nurse tells me the news that I expect and fear: his parents are here. “OK,” I say. “Make sure they are comfortable. I’ll be gone as soon as we’re done. In other words, take him to PICU and check the pressure in his skull.
What I’m not saying is, “Tell the bad news.” That’s my job. I don’t enjoy it. Far from.
I start with my sincere condolences for their pain. “I have to be honest,” I continue, “your son is not in a good way. His brain has been seriously injured. I have to prepare you for the worst. “
There is silence. Then Dad says, “By the worst do you mean …?”
“Of course we do everything we can,” I answer. “But I am sorry to say that there is a real chance that your son will die.”
They nod. They are silent. They cry in each other’s shoulders.
A new scan of the boy confirmed that the brain was badly damaged, swollen and worse. I could only imagine the degree of impact to have shaken things so violently.
“I start with my sincere condolences for their pain. “I have to be honest,” I continue, “your son is not in a good way. His brain has been seriously injured. I have to prepare you for the worst “(file image)
Swelling in the brain causes so much pressure within the limits of the skull, it limits blood flow.
In a healthy body, when the heart is pumping, it pushes the blood through the blood vessels and supplies oxygen to the brain. With a swollen brain, the blood vessels are compressed, which leads to hypoxia – a reduction in the oxygen supply. This then causes further injury to the brain and causes it to swell more.
We decide to do a decompressive craniotomy, in which we remove large parts of the boy’s skull to give space to the brain.
Our monitors show that it halves the pressure – but within ten minutes the brain expands again. I try to stop it by inserting a drain to remove the brain fluid. But this doesn’t work and I quickly exhaust my other limited options.
I reluctantly attach it, but the brain continues to swell and I see it trickle through the wound. This poor boy died before my eyes.
Such a terrible sight had to be kept for the parents, so we put a bandage on his head.
I told them what had happened. They didn’t have to know the bloody details, but I didn’t deviate from the truth: “Your boy probably won’t survive.”
Days passed and the time came for me to hold “The Conversation”. Again, no work I would ever do to ask someone else to do it for me.
After an introduction, I said: “Despite our efforts, there is nothing else to do. It is my suggestion to let your son die. “
“Why would you stop?” Dad asked. “He’s still 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 lives, you have to help him, “said Dad. “We want you to do that. It’s the law. “
That’s right, I thought. But as he would discover, the law had provisions for such cases.
The next day I am more emphatic: “My medical advice is that we disconnect it from the fan. We will ensure that he is not in pain. You can be with him when he dies. “
The insinuation that the first child of this couple would have his livelihood extinguished caused Dad to despair. “I don’t believe this,” he shouted. “You try to kill our baby!” He came straight at me; our eyes closed.
I knew it was painful, but I had to say, “I’m not trying to kill anyone. Your son is dead in every way. “
A few hours later the reception called.
“Could you come, Jay? There are two people here for you. I didn’t catch the names, but one is a police officer. “It looked like Dad was making waves.
I passed on the story. The chief officer replied: “This is not a crime. Not even close. “
Father was adamant. “I don’t care what the police say. I forbid you to end my son’s life. “
It was time for a judge to decide. I did not go to court, but soon learned that we were legal guardians of this poor boy.
But even with the full force of the law on your side, there is no easy way to impose it.
We always invite loved ones to be involved in the last contact. They may want to hold their child’s hand; to pray or just to be present in the room.
Dad was visibly broken and probably in the worst place that anyone could be: about losing a child. I always see it, but it never gets easier.
I am exposed every time I have “The Conversation”. I am not ashamed to say that I was crying while writing this story, I only remember this boy and his father.
We have disconnected the boy from his fan. Shortly thereafter his heart flashed and then stopped. He is deceased.
I work with a fairly expensive toolbox, consisting of around 250 instruments. But for all these aids I sometimes feel completely powerless – like I did with another young boy, an 11-year-old with a brain tumor.
His mother’s final course of action, and my reaction, torture me to this day.
I managed to remove 90 percent of the tumor, later it turned out to be malignant. But scans reveal secondary malignancies – metastases, as we call them – had spread throughout the spine.
I tell mom and advise: “Your son needs intensive follow-up treatment with chemotherapy and radiotherapy. But this really puts him on the back foot. “
I paused. She processed it. “You can’t cut out these meta-things?” She asked.
“I learned that the test of being a good pediatric neurosurgeon recognizes when surgery is not the best option. I have made my share of selfish mistakes. But you only do them once – and the results are there forever. I decided that day was not a day for the ego.
I told her, as kindly as I could, that even with maximum treatment his chance of survival after five years was around 10 percent. The poor woman was broken.
The next day she told me that she was very grateful for everything we had done, but then she told me that she was bringing her son to Germany.
Thanks to Google, Mommy had found someone who promised they could help. His website looked legitimate. He only promised to cure cancer with crystals.
I offered Mom and her son six months of happy memories – or a few years of hardship and illness. What I didn’t seem to offer was a lot of hope.
However, this man claimed that you could create a healing energy field with the help of semi-precious stones such as opals, amethysts and quartz.
Nonsense. Nonsense. That’s not quite what I told mom. “Are you sure he can help?” I said.
“Frankly, no,” she answered. “But can you promise that you can do it?”
I looked into her eyes and knew she would drop Germany if I told her what she wanted to hear. My crime did not sell the product hard enough.
But I am a doctor, a neurosurgeon, a father. I am not a seller. And I am certainly not the snake-oil variety.
“Do you mind if I ask how you pay for this treatment?” I asked. She didn’t pause. “I’m going to offer the house for sale.”
“But where are you going to live? You have three other children. What will happen to all of you?
She laughed. “It’s not about money.”
Oh no, I think, you are wrong there. Money is exactly what matters. I could have intervened. I had legal alternatives. However, it was not my place, I thought.
It continues to haunt me. The only thing I could emphasize was that her son would not survive because of these crystals.
Six months later she wrote to me and told me that the German journey was hopeful but ultimately unsuccessful. Her son had died peacefully at home three weeks earlier. The clearest possible spin I give is that the whole family ended their time together as a unit, with a final road trip.
Other than that, where were the positives? Where would the family live? They had sold their house. This charlatan had taken everything from them.
To this day, I wonder: should I have required NHS to take care of that young fellow?
My friends say I was powerless. But the truth is that I was not. It was a choice not to intervene. If I wanted to, I could have had her son make a court.
But it’s not about me. It’s never about me. The patient comes first. Win, lose or tick, that is the only statistic that matters.
And sometimes nobody wins.
Fortunately there are sometimes light rays, even in real tragedies. Take the 18-month-old baby who was referred to me after a sudden collapse and seizures.
Early scans show a plug near the top of the brain. But only when I am in the baby’s skull do I discover the real problem. Behind the clot was a tumor.
We get out as much as possible. “A tumor?” Mom asks. “Does she have cancer? Is she dying? “As always, I cannot give guarantees.
Later, the laboratory discovers that the baby’s tumor is a glioblastoma – a very aggressive type – and she tolerates chemotherapy.
Three months later the family arrives for an update. I’m desperate to give them good news. Fortunately scans show that what is left of the tumor is negligible.
“What does that mean?” Dad asks.
‘It means that you have a period of quality family life ahead of you. Your daughter is a strong little girl. She doesn’t give up. “
When they returned three months later, their toddler caused chaos around my desk. I could see Mom being agitated with her, but I wouldn’t hear about it.
“Trust me,” I said, “this is the best result I could wish for.” Please cherish the moments. “
They have kept my word. Another three months passed and scans remained clear. They buzzed, full of stories about what they had done.
But something as virulent as glioblastoma does not know when to stop. It returned, this time grabbing the limbic system – the part of the brain that dealt with your personality and emotion. The part that makes this child her own unique self.
When I operate, I can’t do anything to reach the parts of the tumor that are already entangled in her brain. It will only be a matter of time before it changes her memory and personality.
And yes, the now seven-year-old girl is listless. The radiant tomboy probably never came back.
It was so hard to tell the parents that we couldn’t continue to operate, but they still surprised me. “We don’t want to hurt her for that,” said Dad. “We’ve had a good time,” Mama added. It was exceptionally brave.
When the time came, they took care of hospice at home. Of course it’s sad. But as the little girl’s parents indicated, she should have gone almost six years earlier. The way they viewed it was a bonus every day. They let their time count together and squeeze out every last drop.
That’s huge isn’t it? To be able to play a role in this? I think so. I am a very happy 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 for £ 16.99. © Jay Jayamohan 2020. To order a copy for £ 13.60 (valid until February 25, 2020; P&P free), visit mailshop.co.uk or call 01603 648155.