Advertisement

SKIP ADVERTISEMENT

My Father Needed a Liver. Did It Have to Be From Me?

In India and other countries, the majority of living organ donors are women.

Credit...Hanna Barczyk

Ms. Chattopadhyay is a writer.

KOLKATA, India — In the spring I found myself in the position of being my father’s potential liver donor. Although he had steadfastly refused a transplant, he had 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.”

Although the bodies of women in India are policed like international borders, families don’t mind their bodies being cut up for organ donation. Women constitute a majority of living organ donors in India — nearly three-quarters of kidney donors and more than half of liver donors.

About 90 percent of organ transplants in India are living donor organ transplants, where a kidney or a part of the liver is taken from a consenting living donor and grafted inside the recipient’s body.

The cadaveric organ donation rate in the country 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.

C.E. Karunakaran, a trustee with the National Network for Organ Sharing, a nonprofit that promotes cadaveric organ transplantation, believes that one in every two million deaths involves an organ donor.

Indian law permits both related and unrelated persons to be living donors for strictly noncommercial reasons. The process is simpler for grandparents, parents, siblings, children and spouses because the relationships are documented in identification papers.

My mother did not want me to donate: She did not want a large scar on my unmarried abdomen. But to be a living organ donor is a curious pressure itself, knowing that you can save a life with your decision. The health care 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 and real possibility of death — one in 200 liver donors die because of the surgery. What if I never woke up after anesthesia? I didn’t have the courage and readiness they credited me with.

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. I was stunned by the apparent gender disparity in organ donation.

I used India’s Right to Information law, which empowers citizens to demand almost any information from the government, to find out if women were, indeed, the majority of donors in the country. Data from four major hospitals from 2008 to 2017 revealed that women constituted 74 percent of kidney donors. Between 2009 and 2018, women were 60.5 percent of donors for liver transplants, according to the data I received from five private hospitals. Those are all legally verified transplants, approved by Indian law. They don’t include the organs stolen from women.

Data from several other countries shows that the majority of living organ donors are women. In the United States, which performs the highest number of living donor organ transplants in the world, women were 62 percent of kidney donors between 2008 and 2017 and 53 percent of liver donors.

And women represent a small proportion of organ transplant recipients in India. Based on the data I received, women made up 19 percent of recipients of kidney transplants and 24 percent for liver. Indian women give more and receive far less.

An Indian crowdfunding platform, Milaap, further illustrated this gender disparity. Of the 495 funded liver transplants — among the most expensive surgeries in India — 66 percent of the campaigns were for men and 34 percent for women. The gap is narrower for pediatric transplants: Of the 305 pediatric liver transplants campaigned for on the platform, 56 percent were for boys and 44 percent for girls. Yet, biliary atresia — the most common condition that necessitates pediatric liver transplants — is slightly more common in girls than in boys.

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,” said Vibhuti Sharma, the organ transplant coordinator at the Institute of Liver and Biliary Sciences in New Delhi.

Economics is also part of the explanation that the transplant community offers for women being a 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. The female employment rate in India is 27.2 percent, while the male rate is 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 and poor returns on investments as recipients.

My mother thought a daughter with a 12-inch surgery scar would be a poor return on investment in the marriage market. She donated her liver when I dropped out in fear, pleased with the turn of events and seemingly free of fear herself. Since the surgery, a curious thing happens: She displays the large L-shaped scar on her abdomen with an ease I have never seen. It is as if she has a pride in her body that she didn’t have before.

Sohini Chattopadhyay is a writer based in Kolkata.


A correction was made on 
Dec. 19, 2018

An earlier version of this article misstated the rate of postmortem organ donations in India. One in two million deaths involves an organ donor, which may allow for multiple organ donations; it is not the case that one organ is donated in every two million deaths.

How we handle corrections

A version of this article appears in print on  , Section SR, Page 9 of the New York edition with the headline: Organ Donation’s Burden on Women. Order Reprints | Today’s Paper | Subscribe

Advertisement

SKIP ADVERTISEMENT