She was a single mother. She carried him horizontally in her arms. The pallu of her dishevelled cotton saree covered his head to avoid attention from inquisitorial onlookers prying at her plight in a crammed outpatient clinic of our public hospital. One of the men, showing some rectitude, jostled on the wooden bench to give her six inches on the edge of the plank. She sat heavily, the weight in her arms seeming infinitesimally lesser than the encumbrance on her face.
I could see her through the slit of the half double door of my cabin, which swung open and shut constantly, typifying the busy-ness of a government hospital imbued with patients wanting to be seen first. I gently gestured for the crowd to ease off a little and allow for her to come in on priority. They acquiesced gracefully. The civility that indigent people display to accommodate their own, often transcends that of the affluent.
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She thanked me with an unbridled smile as she gently lifted the veil of her child’s head, a move that summed up for me the months of her anguish. His head was twice the size of his body. The skin over it was tightly stretched and the scalp veins dilated enough to insert an intravenous cannula into any of them. His eyes were sunken, like the setting sun, a dull grey because of the raised pressure inside his head. He was 18 months old and emaciated with delayed milestones. I could count his ribs without feeling them. I pored over the sheaves of tattered papers she was carrying after having visited multiple doctors in her village.
She removed a folded CT scan film that showed an abnormal accumulation of cerebrospinal fluid due to a humongous tumour in the cerebellum, which obstructed the normal outflow of brain fluid. The brain was pushed to its edges, leaving only a thin mantle, and was unlikely to assist in the development of a fully functional child. The pressure of the fluid within prevented the skull bones from fusing, allowing me to palpate the contour of his pulsating brain over the vertex of his head. We call this area the fontanel, which, in normal children is soft and sunken, but in this case was tense was bulging.
I pulled out a measuring tape. Active babies get extremely irritated when you measure the head circumference, but he lay there lethargic, numbed by the pressure within his internal world. His head circumference was 56 cm, comparable to an average healthy adult. When a baby is born, the diameter of its head measures about 33-35 cm and reaches about 46-47 cm by its first birthday. This child’s head was growing exponentially and the rest of his body seemed like its appendage.
Surgery was the only option, I explained in mangled Marathi, describing in detail the risks of an operation for a child of this nature. A few sentences in, I was perplexed by the smile on her face, and so I paused. “Aap Hindi mein baat karenge toh bhi chalega,” she said wryly. I was pleased to bring momentary relief to her tormented world with my language skills. Being Parsi, I must confess that this was not the first time such a request has been made. What’s even more embarrassing is that on a few previous occasions, Hindi is what I had started with.
When we counsel the poor and helpless about the dangers of complex brain surgery, the possibility of death is the first thing we mention loud and clear, which annuls all responsibility of minor aberrations. When we do the same with the educated and prosperous peerage of society, we enlist a menagerie of minor complications, very deftly mentioning the macabre possibilities somewhere in-between. We must admit that we cannot escape our biases.
A few days later, after optimising his nutritional status and temporarily draining some fluid from the head to release tension, we wheeled him into the operating room, his mother stoically standing as the door shut on her, relinquishing probably for the first time in their togetherness all control on his fate. The anaesthetist clenched onto his wrist to bring alive his buried veins and secure an intravenous access. They put a tiny breathing tube down his throat, flipped him over and strapped him down.
We made an incision over the back of the head until where it meets the neck and held apart the layers of tissue with a retractor. The bone was so thinned out that we could cut it with a scissor. We encountered the bulging of the two lobes of the cerebellum shaped like a healthy baby’s bottom, a stark contrast to his own anorectic counterpart.
In a set of quick microscopic manoeuvres, we encountered the tumour and that appeared like the rotten core of an Alphonso mango.
We debulked it amidst brisk bleeding. It appeared to be a high-grade cancer. In children this small and tender, even minute amounts of blood loss can be catastrophic. Adults have something called an ‘allowable blood loss’ that can be compensated for physiologically, but this child’s allowable blood loss was zero ml. Through all the opaque barriers that separate a surgeon from the anaesthetists, I could visualise them squeezing the blood bag to hasten the transfusion. Pressures dropped, alarms beeped, but we managed to remove the tumour completely and were back in control. We closed safely.
After a few days of turmoil in the ICU, he stabilised and opened his eyes wide enough to see. The bulging fontanel had saucered in. For the first time, one could see a semblance of a smile on his face and his limbs moved actively. We discharged him a month later, after ensuring that he had gained some weight and was feeding well. We gave instructions for chemotherapy, but I didn’t see the mother at follow-up. I assumed one of the others in the team must have.
A year-and-a-half later, I recognised the same lady in the outpatient clinic with her baby wrapped in muslin and the head covered. Her face was imprinted on my cortex after all that we’d been through. Even if her identity was mistakable, her grief wasn’t. I wondered why she still carried her child around when he should have started walking or at least sitting up. I lifted the shroud off his head myself this time, with self-congratulatory enthusiasm to keenly track if my surgery had done wonders. The head was still huge. But the baby was much smaller. I peered closely. This child was her next one; the first had died six months after surgery from dissemination of the cancer. The obscenity of heredity was on full display.
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