Sonali Mukherjee lives in a world of difficult extremes.
It’s a drizzly evening in Delhi and her thick fingers, a hesitant, trembling bunch, roll over a stack of medical prescriptions she is trying to arrange in a fluorescent-pink plastic file. Suddenly, she feels cold. She asks her mother for a sweater, shivering. It’s the middle of June.
Ten years ago, before three men poured acid on her, she felt the seasons like everyone else. And she could see dense fog and the summer sun. With more than 60-70% of her skin burnt, she now feels the chill at 22 degrees Celsius and cannot bear the heat beyond 25 degrees.
“There is always a difference of 6-7 degrees in temperature between what’s normal for her and what’s normal for us. The skin that regulates body temperature is damaged in her case,” explains Avtar Singh Bath, a plastic surgeon at central Delhi’s BLK Super Speciality Hospital, where Sonali is currently undergoing surgeries to reconstruct her face. “In other words, what’s pleasant for us is unbearable for her.”
So, in Sonali’s modest two-room rented home in Chhatarpur gaon, in the middle of endless serpentine alleys congested with matchbox houses, an air conditioner, which her father Chandi Das Mukherjee can barely afford, whirs constantly through the summer. Sonali explains the extraordinary medical restrictions she has on basic human functions such as sweating and sneezing: “I shouldn’t be sweating much, you know. It will affect my scars and wounds. If I sneeze, my skin can break. But I know this will get better.” Her voice reflects her efforts. The face is unexpressive, and irretrievably altered. The smiling Sonali is now in the family’s photo albums.
Sonali now is a far cry from her past as an NCC cadet
Dr Bath and his team at BLK are trying to restore some of her past. His work as a plastic surgeon is in essence the measure of medical science in human life—its role in making it better. In Sonali’s case, living better is relative. “She will never look normal. Our aim is to give her functional utility in life in which her vital organs work,” Sanjeev Bagai, a senior doctor at the hospital who is supervising Sonali’s surgeries, says.
When Sonali came to Delhi in 2003 from Dhanbad, Jharkhand, soon after the acid attack, her body was completely lacerated, a huge medical challenge. The corrosive acid thrown on her had burnt her eyes, nose, ears, cheeks, and parts of her scalp, neck, shoulders, breasts and back. She was 17. She had been caught unawares—she was startled in her sleep by the acid. “I bled for three months. All the doctors could do was dress my wounds. My body was on fire,” Sonali recalls.
It changed the way people looked at her. Everyone looked away. Her neck joined with her shoulders, the eyelids were burnt and a sunken blob was left in place of the nose and right ear. “The fact that I was alive was a miracle. Who lives after such extensive burns?” The cheeks were like blasted craters, exposing the mouth. The right half of her damaged scalp festered wounds that refused to heal, leaving her susceptible to infections and tearing, triggering fears of a life-threatening septic condition. The burns also affected Sonali’s hearing and eyesight. Doctors rule out the possibility of an eye transplant since her cornea has deep burns; the stem cells meant for regeneration are gone. Dr Bath is not optimistic when he says: “What God made her, nobody can make her. Our aim is to repair. Her natural face can’t be restored.”
At his chamber in the hospital, cosmetic rehabilitation can mean a range of expensive treatments—from tummy tucks to liposuction and botox, these medical interventions are marketed to men and women to better their appearances. A board outside points to his clientele: photographs of a woman with clear cheeks after acne scar correction; a grinning man with his double chin removed; a woman with a sharp nose.
Dr Bath says patients like Sonali are not the bulk of his clientele. “Burns are mostly the fate of the poor. The socio-cultural milieus they live in expose them to life-altering risks. It’s an impossible task to recreate a human face—the surgery is not only complicated and expensive, it’s also not easily accessible,” he says.
Fate intervened in Sonali’s life when three men whose sexual advances she resisted in Dhanbad, attacked her. Sonali’s surgeries were made possible by generous donations from non-governmental organizations, individuals, corporate firms and media houses, apart from the prize money of Rs.25 lakh—about Rs.16 lakh after income-tax deduction, which she won at the popular quiz show Kaun Banega Crorepati—in November. For the treatment at BLK, Beti, a Mumbai-based NGO working for girls, offered to meet a chunk of the medical expenses. Dr Bagai says Sonali’s treatment at BLK will cost Rs.25-30 lakh and more than half the amount has already been sent by Beti.
Before her treatment at BLK began last year, Sonali had undergone 20 surgeries,mostly free of cost, at the government-funded Safdarjung Hospital in south Delhi. Bleeding from her wounds and in pain, her father and she would queue up at the hospital in 2003, when she came to Delhi.
The surgeries, carried out intermittently over a period of five years, addressed her emergency needs—three for the damaged scalp, one for the chest to stop the bleeding, four to separate her neck from her shoulders, two to reconstruct the back, and several small ones to fill up her cheeks, lips, chin, forehead and nose.
Sonali collecting awards for college-level dance and debate performances in 2002 from the then Jharkhand chief minister Babulal Marandi
Back home in Dhanbad, Chandi Das Mukherjee lost his job as a guard at a local dal mill and had to sell his ancestral house. Sonali’s younger siblings dropped out of school. Her mother suffered prolonged depression and refused to see Sonali for many years after the incident. Distressed, Sonali appealed for euthanasia in July 2012, a month before she enrolled for further treatment at BLK. “I had begun holding myself responsible for the miseries of my family. But the doctors at Safdarjung saved my life,” Sonali says.
Yet, when Sonali was brought to BLK for further surgeries, the severity of her deformed face stunned Dr Bagai—the chemicals in the acid had made a deep and direct impact on her skin tissues. “She had practically no tissue on her face. Whatever reconstruction of the scalp was done, it was giving way. She had no ear lobes, ear drums, no external ears. She couldn’t hear. She had lost practically all vision—in one of the eyes, the optic nerve that carries the impulse to the brain has been damaged. She had no neck tissue, no armpits,” Dr Bagai recalls. Worse, Sonali’s burnt skin had developed severe contractures—hardened tissues after burns, the affected body parts immobile. So she couldn’t lift her hand, couldn’t smile, couldn’t speak, couldn’t bat eyelids, couldn’t move her neck and couldn’t walk freely. She had shrunk from 50kg to 26, indicating acute protein malnourishment.
The biggest challenge for Dr Bath was therefore not just to lead her on the path to recovery, but since most of the tissues in her body had been burnt, to augment these. The surgeries at Safdarjung had drawn most of the undamaged tissue, almost 80-90%, Dr Bagai says. Pieces of flesh were sliced from her thighs, arms, waist and legs and transferred to the affected areas through grafting, a medical procedure that brings displaced flesh to grow in contact with fresh blood supply on a new site, the mainstay of most cosmetic surgeries in India.
But there is nothing cosmetic about it in Sonali’s case. Her arms and legs are thin, with dark patches wherever flesh was sliced for grafting. She is constantly trying to gain weight so that the surgeries can continue. Dr Bath does most of the grafting with silicon balloons that are inserted beneath Sonali’s skin, which needs to be expanded and inflated with saline water. The surgeon, who spent years in the army, compares the expanders to invincible entities, “just like fighter aircraft”. “It never leaks, however much you poke it. Have you seen fighter aircraft whose petrol tanks don’t burst however lethal the attack?” he asks, forwarding a sample of a scalp expander. It’s imported, he adds, and each costs Rs.50,000-60,000.
For reconstruction of the right portion of her scalp, which kept breaking down despite three surgeries at Safdarjung, Dr Bath inserted an expander beneath the skin on her left scalp. Over the next four months, the skin formed a bulge as big as a football. Expanders make normal skin of 1x1cm expand up to 3x3cm over a period of three-four months, depending on the elasticity of the skin. “It’s like what happens in pregnancy when the uterus grows and skin on the stomach expands. After the baby is out, there is always excess flesh. Expanders create that excess flesh which we then use for grafting. This generated skin had the same properties as the spot of the graft, which makes the reconstruction unbreakable,” Dr Bath explains.
In the last 11 months, five surgeries at BLK, through expansion and grafting, have helped Sonali speak, hear, move her shoulders and close her eyes and mouth. She can finally blink and eat her food without spilling. She was undernourished because she couldn’t take in food. The most difficult, according to Dr Bath, was the surgery that reconstructed her ear. “It’s a completely burnt area so there was always a risk of the expander ejecting itself. We inflated it (the expander) gradually, the skin could burst,” Dr Bath says.
The frequency and scale of surgeries have put severe strain on Sonali. Besides the excessive and prolonged medication that keeps her away from infections, the cosmetic surgeries demand unusual mental strength. Chandi Das Mukherjee, in his 10 years in Delhi’s hospitals looking after his daughter, has seen many give up, such as an 18-year-old boy he knew who died after an ear surgery simply because he couldn’t take the shock. Not his daughter, he says.
“You lose first in the mind, like in a war. Medical success depends on the patient’s frame of mind. Any surgery means calculated risk and trauma on the body,” says Dr Bath.
For Sonali, every surgery entails strict adherence to the vital parameters, such as blood pressure, blood count, sugar levels and a well-functioning thyroid, apart from steering clear of viral attacks and other casual infections. The period after surgery is often more painful.
Sonali is quick to remember the painful exercises that finally helped her to open her mouth. “After my lips were reconstructed, I was given a dozen ice-cream sticks to insert in my mouth which was practically sealed by the lips. I would insert sticks every hour for the next two months to create a gap, and gosh, it hurt so much,” she says.
Sonali has overcome each such difficulty. To overcome blindness, she has discovered tools to engage herself with the world—a “talking” telephone and a laptop that reads out the alphabets and numerals on the type pad for her. At the blind school near her house in Chhatarpur gaon, Sonali also prepares herself for future jobs via computer literacy.
How does she do it? “I take extra care. I follow rules to the book. I tell myself that I have to do this. I know if I don’t, the surgeries that have taken 10 years would take 20!” Sonali says.
We met Sonali inside her room at BLK last month. It was time for another surgery—the 25th in 10 years. Chandi Das Mukherjee signed the medical undertaking form taking responsibility if she died after the surgery, a ritual before every surgery. “With every surgery, she is born again,” he says, looking at his daughter lying on a bed covered by a spotless white bedsheet.
After the surgery, Sonali will have to sleep on one side for six weeks, as she has several times in the past, so her reconstructed external ear doesn’t break. To look human again, she willingly bears the pain and prays for more money to fund her remaining surgeries.
“What worse can happen?” she says.
Sonali’s attackers have been out on bail for the last 10 years.