Death like life is mysterious and sometimes, the struggle for a doctor is to accept that the end is near for their patients

“She was absolutely fine a minute before she collapsed in front of my eyes,” an agitated father said to me as he watched the ICU personnel hooking up his 26-year-old daughter to every possible tube and line that a comatose patient is wired to in order to keep her alive. An appalled mother could not fathom the thought that her daughter, who had been pottering around the house just a few hours ago, was now on a ventilator fighting for her life.

“She had a fever for about four days,” the father went on to narrate amidst all the chatter and clatter of a busy ICU past midnight. “She complained of a constant headache,” he continued, “but today there was no headache!” he rationalized in disbelief of how such mild symptoms could result in such a catastrophe. After about two days of the fever, they got a COVID-19 test done, which was negative, and their family physician correctly prescribed a host of other tests the next day, the results of which were still awaited.

“We did our evening meditation, listened to a discourse, had our dinner, and were just winding up for the day when she had a seizure. I saw her violently jerking her hands and legs and she fell suddenly to the ground. Her eyes rolled up and her mouth started frothing. We immediately rushed her to the hospital,” he said, emphasizing the promptness of their actions. I shone a bright torch into her eyes. The pupils, which normally constrict with a certain shyness of being exposed to the light, refused to budge in her case. They gawked back at me sending an unsaid yet stern message: large non-reacting pupils are a harbinger of brain death.

Her CT scan looked ghastly. The brain was terribly swollen. All over. There was thick blood layering the surface and splattered specks within. This could be some sort of an aggressive viral infection, the brain damage made worse by possible trauma to the head from the fall after the seizure, I reasoned with the family. “The only option we have is to take her to surgery, open up both sides of the skull, and allow the brain to expand out rather than keep the vital structures pressurized within. We’ll remove the blood clots on the surface and then see what happens,” I offered. “When the pupils don’t react, we often don’t operate, but since all this has happened within 2 hours and she’s so young, we should give it a shot,” I determined, justifying the plan in my head and in my heart. “Even if there is a 0.001% chance, you do it,” they said, paralyzed from reason, powerless from circumstance.

Within the hour, we cut into the scalp from ear to ear and exposed as much of the skull as was possible. We drilled holes into the cranium and cut out large pieces of skull on both the right and left as the smell of burning bone infused the operation theatre. As expected, the brain was extremely tense, and as we opened the dura – its leathery covering – it gnawed at us angrily. It was as if someone was pumping air into it, and with each inflation, it felt like that brain was distending closer to our faces. Both the temporal lobes appeared terribly inflamed, tiny vessels rupturing from its surface unannounced. We removed the blood clots and closed the scalp back briskly as the brain attempted to cheese out through the suture line.

“We’ve done what we intended to do, but the brain appears badly damaged – like it is being devoured by a flesh-eating organism. It’s extremely rare, but we call this haemorrhagic necrotizing encephalitis,” I concluded with dismay. Any viral infection could have caused this. Initially, we suspected that this could be due to dengue, as her platelet count had kept dropping, but those tests came back negative. The coronavirus – or, as a matter of fact, any influenza virus – has also been reported to cause this. In her case, the entire panel of tests for all tropical diseases came back as normal. We had no answers.

The next day, she lay motionless on the ICU bed. I could feel her brain directly under the scalp as we had removed all the bone. It was like concrete, with no pulsations. The rest of her brainstem reflexes were absent too. Her pupils were much larger, more rebellious, refusing to bow down to the light.

For the next few days, we spoke to the family for long hours to explain to them that we had lost the battle. They sought opinions from other neurologists and surgeons from the city, all of whom concurred. Every day, we spent time asking ourselves just one question: “Is there anything else we can do to reverse this?” The answer, unfortunately, didn’t change.

I spoke to the parents and told them that it might be best to accept that the end had come. I proposed that they allow her to undergo an apnea test, to certify and declare her to be brain dead. They shook their heads. “How will you understand what we are going through, doctor?” they asked me, refusing my suggestion. “This is our only daughter, the love of our life.”

I narrated the story to them of how my mother lost her sister, aged21, in the infelicitous Handloom House fire of 1982. She was working in the building when the fire broke out on a higher storey. She had been evacuated from the building when she realized she had forgotten something valuable and rushed backup in a quick attempt to retrieve it. A burning beam collapsed right onto her and she was bereft of life instantly. My grandparents dealt with this until they were bereft of their long lives.

Death is mysterious. There is no right time for a young person to go. No circumstance can justify their exit, and yet, more often than not, we need to accept it without having any answers. How they choose to go is equally mysterious, or whether there really is a choice. These are all esoteric questions. We have to survive these with an understanding that their purpose on earth has been fulfilled for this lifetime and that they have moved on to a different realm for a different reason. That unfolding, if it ever comes, will reveal itself to us only when we are ready.

These were my parting words to her parents as I hugged them.