Sohini Chattopadhyay: My father needed a liver. Did it have to be from me?
Dispatch from India: A journalist on how conflicted she felt when she considered donating part of her liver to her father—in a country where women face social pressure to be organ donors.
Hello, I’m Emily, and this is a newsletter about how we seek and tell stories to make sense of a rapidly changing world & our personal and collective place in it.
Hello again, dear readers!
I meant to send this off in January, but due to some personal transitions that have complicated the juggling act of living and working (and administrating), I’m kicking off this newsletter for the new year according to the Chinese calendar instead—and with another guest essay I’m keen to share with you.
Sohini is a journalist in Kolkata, and we met at a workshop in her city in 2018. Her writing offers an illuminating look into the Indian psyche and culture; and one piece she published a while back, about the conflicting feelings she grappled with when she considered donating part of her liver to her ill father—in a country where women make up 78% of organ donors but just 19% of organ recipients—was fascinating to me. It’s a piece that deftly weaves between public policy, social mores, and personal experience, and I thought it would be something that you might also find interesting. Thanks, Sohini, for consenting to repurposing it and republishing it here!
Sending you all my warmest wishes. I hope your year has got off to an encouraging start.
A letter from India by Sohini Chattopadhyay
In the spring of 2018, I found myself in the position of being my father’s potential liver donor. Although he had steadfastly refused a transplant, he then slipped into a sickness so severe that my mother and I feared we might lose him.
I am his only child and our blood groups are compatible. Between taking him to endless medical appointments, I began undergoing my own transplant work-up—the long and expensive series of tests to ascertain my fitness to be a donor.
One morning when I walked in with my test reports, the transplant surgeon at the New Delhi hospital waved them aside and asked, “Has anybody put pressure on you to donate?”
“No,” I said. “Why?”
“People don’t ask women if they want to donate,” he said. “If there’s anything like that, I will give them some clinical reason for rejecting you.”
India, my country, is often viewed by the world as being an unsafe place for women, steeped in a culture that is patriarchal and misogynistic. The World Economic Forum’s 2021 Global Gender Gap Report, which examines gender inequality based on access to work, education, health, and political empowerment, ranked India at 140 out of 156 countries.
Although the bodies of women in India are policed like international borders, families don’t appear to mind them being cut up (by large male teams of surgeons) for organ donations. Data from several other countries also shows that women make up the majority of living organ donors there, but a study carried out across India between 2013 and 2019 revealed that women in my country constitute a strong majority—at 78 percent.
The cadaveric organ donation rate in India is abysmally low because of cultural misgivings, mistrust in the health care system arising from reports about organ trafficking, and the absence of state initiatives and infrastructure to facilitate it. In 2019, 88 percent of 9,751 kidney transplants and 77% of the 2,590 liver transplants performed in India were from living donors—a high proportion compared to global figures, which in 2018, was 36 percent for kidney transplants and 19 percent for liver transplants. Still, 500,000 people reportedly die each year in India waiting for an organ donor.
Indian law permits both related and unrelated persons to be living donors for strictly noncommercial reasons. The donor and recipient must prove their relationship and emotional closeness through documents and photographs, and satisfy the authorities that the donation is made for “reasons of love and affection”. The process is simpler for grandparents, parents, siblings, children, and spouses because the relationships are documented in identification papers.
Yet, at the hospital, I noticed women all around me: mothers, sisters, daughters, daughters-in-law, and sisters-in-law. They were donors or donors-in-waiting, heavily outnumbering male donors.
The year his daughter Sheena turned eighteen was the longest year of Ramendra Nath Singh’s life.
Although she had offered to donate her liver to him without being asked, Singh felt a strange weight descend, as if a balloon had lodged itself in his chest, clamping his breath and shrinking his appetite. She was a child after all, in her first year of engineering studies. When he took her to the hospital for preliminary tests, she was detected with jaundice; the doctors would not touch her until she recovered fully.
How long would it take? Singh felt guilty counting the days. He had always said no to Sheena when she offered. But the day he vomited clumps of blood and the hospital in Ranchi, the capital of Jharkhand state, struggled to treat him and called the doctors in Delhi, he felt afraid. He wasn’t ready to die yet, he realised, even if it meant taking his daughter’s liver.
Six years earlier, Singh had been diagnosed with cirrhosis: scarring of the liver caused by long-term damage. For some years, the doctors managed his condition with medicine, and then advised a transplant. He registered on cadaveric organ lists in Vellore and Delhi, but a cadaveric transplant is not easy. It requires moving to the city of registration for an unspecified period of time, so that you can rush to the hospital when an organ becomes available. It also requires money, patience (a lot of it), and, most of all, luck.
After he started vomiting blood, Singh’s hold on the world suddenly felt slight, a thing of air and thread, and the lottery of the cadaveric organ list seemed too much of a risk. It would have to be a living donor transplant.
Even so, it was almost a year later that the approval came through for Sheena to be his liver donor. At first, he was grateful for the delay. Perhaps someone else in his family would come forward to donate? Would Sheena be able to marry if potential suitors saw a large scar across her body?
But when fluid started to fill his abdomen—a condition called ascites, where the body is unable to filter out fluids adequately—he again felt grateful that Sheena had offered to be his donor.
In the stupor of the ICU after the transplant, his wife didn’t tell him that Sheena had rejoined college just ten days after her day-long donor surgery; she didn’t want to miss classes. Later, when clarity slowly came back to him and he could again tell day from night, he thought of what he owed his daughter.
Once he was out of the hospital, disentangled from its hum of polite beeps and white light, it seemed impossible to say thank you. It seemed too little. And at the same time, too much.
Being a living organ donor is a curious pressure in itself—knowing that you have the power to save a life. The healthcare system treats organ donors with unusual respect, too: Laboratory technicians moved me to the head of the line and congratulated me for my courage. Doctors praised me, pointing me out to other patients.
My father was like a child, wandering off on his own, his mind clouded by his failing liver. I wanted to pick him up before he never came back. But there was the remote but real possibility of death for donors: generally, one in 200 liver donors die due to complications from the transplant surgery. What if I never woke up after anaesthesia? I didn’t have the courage and readiness the doctors credited me with. I felt guilty thinking more about my own possible death than my father’s imminent one if he didn’t find a transplant.
I often thought of Sheena in those moments. Did such doubts ever cross her mind? Or did she put them aside? Her father waved away my question. “How can anything go wrong when you do such a good thing?” he said. “And even if it does, you would have given life to those who gave life to you.”
I looked for such certitude but found none. I was full of doubt and shame. I found myself in a place where it was difficult to talk to anyone.
While women in India make up the majority of living organ donors, they represent just a small proportion of organ recipients. In 2018, using India’s Right to Information law, I found out that women made up 19 percent of kidney-transplant recipients and 24 percent of liver-transplant recipients in the preceding decade. Indian women give more and receive far less.
Apart from the cost of the organ transplant surgeries, a recipient’s family also has to bear the lifelong cost of medical tests and immunosuppression—the medicines transplant recipients must take to ensure that their new organs aren’t rejected by their bodies. “My guess is that most Indian families will find this is not worth the investment on a woman,” Vibhuti Sharma, an organ transplant coordinator in New Delhi, explained.
Economics is also part of the explanation that the transplant community offers for women being the majority of organ donors in India. Donor surgery requires time to recover, longer in the case of liver donors, which means taking time off from work. Indian women mostly don’t do paid work. In 2020, the female employment rate in India was 27.2 percent, while the male rate was 78.8 percent. Women who do work are paid more than 30 percent less than male workers, according to a 2016 International Labor Organization report. By such calculus, Indian women are particularly cost-effective donors.
It is entirely legitimate for daughters-in-law and sisters-in-law to donate organs, Dr. Aabha Nagral, a gastroenterologist and liver transplant hepatologist in Mumbai, told me. “The question to ask is, are brothers-in-law and sons-in-law donating organs similarly?”
One of Dr. Nagral’s male patients, for whom she had recommended a liver transplant, had hoped that one of his three brothers would be fit and willing to donate. But each brother declined. In the end, his sister-in-law stepped in to donate part of her liver to him. “Even husbands donating livers to wives is unusual,” she said.
The stakes appear to be different when the recipient is a woman, said Prakash Saindane, a transplant coordinator in Mumbai. In 2017, he and his team raised funds for the liver transplant of a two-year-old girl. By November, the money was ready and the father was declared fit to donate. But the transplant only took place in June the following year, eight months after.
“Why? Because the mother, who was pregnant at the time, was made to undergo a medical termination of pregnancy, then they waited for her to recover and donate her liver instead. He did not tell us this; I learned it later. I believe the father’s parents said their son should not risk the operation for a daughter, that the couple could try for other children.”
When the call came from a Bengaluru hospital in September 2017, it was after midnight. Singh felt real fear, but did not share it with his wife. Instead, he asked her not to wake their younger daughter, and to focus on packing their bags. He booked them tickets out of Ranchi, and when they reached Bengaluru, he found them a hotel near the hospital.
When they arrived at Nimhans (the National Institute of Mental Health and Neuro-Sciences), where Sheena was admitted, they found her lying unconscious, attached to many machines. The doctors had performed surgery on her brain the night before, but were cautious about her prospects of recovery. Singh felt his hold on the world slipping away again—a flimsy wisp of thread clinging on to a restless balloon. Everything seemed to be happening at a great distance.
They returned to the hotel. At 11 p.m., they got a call: Sheena was dead.
Singh learned of the dinner plan much later: how Sheena and her friends at IBM had decided to celebrate their first salary cheque by renting a car and driving to a dhaba on the highway for dinner. The impact of the collision had ejected Sheena from the car and given her a head injury. She was the only one in the group to die.
The year that Sheena donated part of her liver to Singh, his younger daughter had tied a rakhi—a ritual thread sisters traditionally tie to their brothers’ wrists during a festival in north India, signifying their brothers’ pledge to protect them—to Sheena’s wrist. She was seen as the true protector of their family. His wife had started consulting Sheena for most things: how she should handle her diabetes, where Sheena’s siblings should take tuition, where they should go for family holidays.
In the days after Sheena’s death, when their relatives came to visit, one of Singh’s brothers said he and his wife had given Sheena too much freedom.
Singh found himself wondering if his brother was right. Had he given his daughter too much independence? In the dark hours of the morning, when everyone was asleep except him and his wife, his thoughts returned inevitably to her: Sheena, his firstborn. He still welled up with anger.
“I wanted to send her abroad to study. I was thinking of a plastic surgery to conceal the surgery scar. I had so many dreams for her,” he said.
“But she made bad friends. Children get out of hand when they live by themselves, you know. This would not have happened if she was in Ranchi. I would never have allowed her out so late at night.”
My mother did not want me to donate my liver. She thought a daughter with a twelve-inch surgery scar would be a poor return on investment in the marriage market. Instead, she donated her liver when I dropped out in fear, pleased with the turn of events and seemingly free of fear herself.
Since her surgery, a curious thing has happened: she displays the large L-shaped scar on her abdomen with an ease I have never seen.
It’s as if she has a pride in her body that she didn’t have before.
This is a guest letter, and views and experiences related are the writer’s own. Guest appearances in this newsletter hope to reflect the variety of life in this world.
SOHINI CHATTOPADHYAY is an independent Kolkata-based journalist who writes about public health, politics, and film. Versions of this story were previously published in the Hindu and the New York Times. Read more of her work at sohinichattopadhyay.com
Being able to take you with me, every step of the way, means a great deal. So please sign up to receive more letters like this and to help keep Movable Worlds going. If you have the means, you can also make a paid subscription to help fund guest writers. Thank you! ❤️