A Handful of Stories

Reportage on health, science and politics. And some meditations on film

Sum of Her Parts

Why are the vast majority of living organ donors in India women?

The year his daughter Sheena turned 18 was the longest year of Ramendra Nath Singh’s life. Although she had offered 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 the first year of engineering studies. When he took her to the hospital for the tests, she was detected with jaundice; the doctors would not touch her until she recovered fully.

How long would it be? Singh felt guilty counting days like this. He had always said no to Sheena. But the day he vomited clumps of blood and the hospital in Ranchi struggled to treat him, and made phone calls to his 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. For some years, the doctors managed with medicine, and then advised a transplant. He registered with Vellore and Delhi on their cadaveric organ list. A cadaveric transplant is not easy — it generally requires shifting to the city of registration for an unspecified time, so that you can rush to hospital when an organ becomes available. It also requires money, patience (a lot of it), and, most of all, luck.

After the bleeding, Singh’s hold on the world suddenly felt slight, a thing of air and thread, and the lottery of the cadaveric 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 his transplant came through. At first, he was grateful for the delay — perhaps someone in his family would come forward to donate. Would Sheena get married if they saw a large scar across her abdomen?

But when fluid started to fill his abdomen, a condition called ascites, where the body is not able to filter out fluids adequately, he felt grateful that Sheena had offered her liver.

In the stupor of the ICU, his wife didn’t tell him Sheena had left to rejoin college just 10 days after her day-long surgery. She didn’t want to miss classes. Later, when he was moved to a ward and could tell day from night, he thought of what he owed her. But once he was outside the hospital hum of polite beeps and white light, it seemed impossible to say thank you. It seemed too little. And sometimes, too much.

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A living donor organ transplant is a remarkable thing, both in terms of the thrilling medical science involved and the human capacity for giving. It involves separate surgeries on donor and recipient, coordinated like an orchestra performance, to check and harvest the organ from the donor, remove the bad organ from the recipient, and then graft the healthy one alongside a thousand other things that must be checked and done right.

Illustration from The Hindu where this story was first published
21 October 2018

Donors undergo major surgery, with no benefit to themselves, to gift one of their organs (or part of one, in case of liver transplants). The liver can regenerate on its own, making it possible for people to donate up to 70% of it. One kidney can pull the work of two.

Over the past decade and a half, India has emerged as a hub for living donor organ transplants (LDOT) in South and Southeast Asia. In 2011, the country performed the second highest number of LDOTs in the world after the U.S., according to World Health Organisation data. In the absence of a national transplant registry, it is not possible to give a more recent figure. The current cadaveric donation rate is 0.56 per million, estimates C.E. Karunakaran, trustee, National Network for Organ Sharing; this means one cadaveric donor per 2 million persons. To compare, Spain’s rate is 34 per million of population, the highest in the world. This is approximately 68 times the Indian rate, for a population that is 4% of India’s. In other words, if there were no living donors, the chances of dying while waiting for an organ in India are pretty high.

Gendered giving

Interestingly, the majority of living donors in India are women. I filed RTIs with five centres, and the data received from three for 2008-2017 shows that women constitute 74% of kidney donors. For liver surgeries, the data I received was much more limited because these transplants happen almost entirely in private hospitals, which do not come under RTI. Here, women are 60.5% of the donors, based on figures for 2009-2017 from five centres.

Globally, too, women constitute a higher proportion of living organ donors. But three things give cause for alarm here. First, the proportion of women donors is markedly higher here than in the U.S., which performs the highest number of LDOTs in the world. In the U.S., women constitute 62% of kidney donors (74% in India) and 53% of liver donors (60.5% in India). Plus, the number of female recipients is conspicuously lower. In the U.S., 35% of liver recipients are women, as are 39% of kidney recipients. In India, the figures are 24% and 19% respectively.

Illustration from The Hindu where this story was first published

Second, transplant figures in the context of the country’s record on gender is worrying. In a United Nations Development Programme report (2017) on gender inequality, India ranked 125 among 159 countries. Third is the almost complete absence of data.

Health data in general is inaccessible in India, difficult to get even through RTIs, but data on women and health, outside of child sex ratio, maternal mortality and fertility rate, is non-existent. It would appear that what happens to women — other than birth and birthing health — is not known or not worth knowing.

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Earlier this year, I found myself in the position of being a potential donor for my father’s liver transplant. One morning, when I walked into the transplant surgeon’s chamber, he took me by surprise. He put my test reports aside and asked: “Are you under pressure to donate?”

 “No,” I said. “Why?”

 “In Indian families, women are often not asked but told to donate. So if there is anything like that, I can give your family some clinical reason and reject you.”

I faced no such pressure from my family. But being a potential donor is a curious pressure in itself.

I found it hard knowing that a person’s life rested in my hands. There is the very remote but real possibility of death — the surgery carries a 0.5% risk of death globally. That means one in 200 donors dies. I found myself thinking guiltily about my own death more than my father’s imminent death without a transplant.

I often thought of Sheena then. Did such doubts ever cross her mind? Or did she keep them aside when they came? 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, but found no such certitude. I was full of doubt, and full of shame. I found myself in a place where it was difficult to talk to anyone.

Policed bodies

I had thought I was the only one, measuring the sum of my unlived years versus the certain death of my father in a few days. The surgeon snapped me alert to the women all around me, donors and donors-in-waiting. Daughters, wives and mothers, but also sisters-in-law and daughters-in-law. What surprised me was that so many women were permitted to donate. In a society where female bodies are policed like international borders, families seemed conveniently okay with women’s bodies being cut up — mostly by men and for men.

The Transplantation of Human Organs and Tissues Rules, 2014, permits related and unrelated persons to become living donors, but strictly for non-commercial purposes. The donor and recipient must prove their relationship and emotional closeness through documents and photographs.

The process is simpler for near-relatives — grandparents, parents, siblings and children — and spouses. A woman may sometimes face greater scrutiny to check that she is indeed the wife and not an impostor. Some unrelated donors are approved if authorities are satisfied the donation is made for ‘reasons of love and affection’.

The brothers refused

It is entirely legitimate for daughters-in-law and sisters-in-law to donate organs, but “the question to ask is, are brothers-in-law and sons-in-law donating organs similarly?” says Dr. Aabha Nagral, gastroenterologist and liver transplant hepatologist at Jaslok Hospital, Mumbai, and Apollo, Navi Mumbai.

When Dr. Nagral advised a liver transplant to one of her patients, he was flustered but hopeful one of his three brothers would be fit and willing to donate. Each brother declined. In the end, his wife’s sister donated her liver. “Even husbands donating livers to wives is unusual,” says Dr. Nagral.

Doctors say the reason for this disparity is economic. Men work. Women mostly don’t. Women’s employment rate is 27.2%, while for men it is 78.8%. And women are paid lesser than men. Thus, a man’s absence from work due to donor surgery is seen as more costly.

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 “Most women who come to be evaluated here are donors,” says Dr. Puneet Bedi, gynaecologist at Indraprastha Apollo Hospitals, a popular kidney transplant centre. Bedi has to evaluate their gynaecological fitness before the surgery. “It’s quite striking, however, how few women recipients there are,” he says.

Recipient data makes the gender imbalance in transplant surgery even starker. In the U.S., between 2009 and 2017, women made up 39% of kidney recipients, and 35% of liver recipients. In India, the percentages were lower, at 19% for kidney and 24% for liver. According to crowdfunding platform Milaap, of the 495 liver transplants (among the most expensive surgeries in India) they raised money for, 326 (66%) campaigns were for men and 169 (34%) for women.

The stakes appear to be different when the recipient is a woman, says Prakash Saindane, transplant co-ordinator at Apollo Hospitals, Navi Mumbai. Last year, he and his team raised funds for the liver transplant of a two-year-old girl by applying to funding platform Milaap, the Tata Trust, and the chief minister’s fund. By November, the money was ready and the father was declared fit to donate.

 “The transplant took place in June this year, eight months after the money was ready. 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 learnt 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.”

 “I’ve noticed that the parents of a lot of young girls start the transplant work-up (a series of tests to evaluate health before surgery), start the paperwork, and then don’t show up,” says Vibhuti Sharma, transplant co-ordinator, Institute of Liver and Biliary Sciences, Delhi. “Money for a transplant can be organised through charities and fundraising, but it is the lifelong cost of immunosuppression (medicines that recipients must take to ensure the new organs are not rejected by their bodies) and testing that is the problem. The reality is that Indian families will find this is not worth the investment on a girl.”

Interestingly, all the transplant co-ordinators I spoke with, those who agreed to be quoted and those who didn’t, viewed the gender skew in transplants as a problem, but not all the doctors did. Many doctors said women donate because they are inherently nurturing. A couple of them said that women tend to be fitter than men of the same age, and hence more able to donate. But that still doesn’t explain why the proportion of female recipients is so much lower.

This difference in perception might arise from the kind of work doctors and transplant co-ordinators do — the latter are more privy to the human drama that a transplant surgery entails. Doctors mostly aren’t.

The midnight call

When the call came from a Bengaluru hospital last September, it was after midnight. Singh felt real fear, but did not share it with his wife. Instead, he asked her not to call their younger daughter but focus on packing. He booked tickets out of Ranchi, and when they reached Bengaluru, he found them a hotel near the hospital.

When they went to Nimhans where Sheena had been admitted, she was lying unconscious, attached to many machines. The doctors said they had performed a 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 holding a restless balloon. It all seemed to be happening at a great distance. They returned to the hotel; at 11 p.m. that night 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 for dinner on the highway. The impact of the collision ejected Sheena from the car and she suffered a head injury. She was the only one in the group to die.

The year that Sheena had donated her liver to Singh, his younger daughter had tied a rakhi to Sheena: she was seen as the true protector of the family. His wife had started consulting Sheena for most things: where her siblings should take tuition, family holidays, how to handle her diabetes.

In the days after her death, when their relatives came home, one of Singh’s brothers said they had given Sheena too much freedom.

Singh found himself agreeing with him. Had he given her too much independence? In the small hours of the morning, when everyone is asleep except his wife and him, his thoughts return inevitably to her. Sheena, his first-born. And he still wells 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. 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.”

Footnote: When I backed out, my mother donated her liver to my father. My father’s surgery was successful, and he is now in the fourth month of his new liver.

Information obtained from PGIMER Chandigarh, AIIMS New Delhi, Christian Medical College-Vellore, JIPMER-Puducherry, ILBS-New Delhi, Global Hospital-Mumbai, Kokilaben Dhirubhai Ambani Hospital-Mumbai, Medanta- Gurugram, Sir Ganga Ram Hospital-New Delhi.

The Kolkata-based writer and independent journalist writes on public health, politics and film.

Originally published in The Hindu magazine, 21 October 2018

Personal essay published in The New York Times, 15 December 2018

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