Have a Heart

Too few people in India donate their organs. But there is hope yet

Shah-e-Tara Jasrotia, 64, flaunts a few words in faded green across her arm. “It is a tattoo,” she says, “I got it years ago.” Squint a little, go closer, and the text in Devnagri script on her shrivelled skin begins to gain legibility. Jasrotia has pledged her eyes and body for donation and had it inscribed permanently on her arm nearly 35 years ago. ‘After my death,’ it says in Hindi, ‘I would like my eyes to be donated and my body given away for scientific study.’

“I couldn’t be bothered with doing the paperwork and getting a donor card,” Jasrotia says, “If I die in an accident and my children are not around, at least the hospital would know what to do with my body, and there would be no disputes.” Her tattoo signifies a personal decision she made after her father, a Gandhian freedom fighter from Gujarat, passed away in 1977 and her mother gave away his eyes and body to Maulana Azad Medical College in Delhi. “My parents had been progressive all along, and my mother’s decision moved me,” she says, “[Organ donation] is the best way to give back what you have taken from the world.” Still grieving the sudden death of her father, who was visiting her and her husband in Delhi at the time, Jasrotia took a rickshaw to Chandni Chowk and had herself marked for life with what she wanted done with her mortal remains. “In my days of youth, women would have their husband’s name tattooed on their arms,” she says, “I got this instead.”

Jasrotia is among the growing number of people in India who have pledged their bodies for donation after death and have also volunteered to donate the organs of their relatives. Stories like hers are heartening, but Indian donors remain far too few, judging by records of the Union Health Ministry. India’s donor count is an abysmal 0.08 per million. Spain has the highest ratio: 35.1 per million. The UK has 27, and the US, 26.

Doctors and experts blame India’s low donor count on lack of awareness, influence of religious customs and prevalence of superstitions among Indians at large. Bodies are often held sacred by relatives. Jasrotia had a tough time herself when she decided to donate her husband’s organs after he died in a road accident in West Delhi in 2003. While her children, who are doctors settled abroad, supported the idea of their late father’s organs being put to use, she faced stiff resistance from her husband’s family. They didn’t want the body to be mutilated. They also feared that it would mean her husband would be born with a deformed body in his ‘next life’. “It is still a sore point with the family,” she says, “But I am glad I donated his eyes to All India Institute of Medical Sciences (AIIMS).”

The organ centre at AIIMS has nearly 12,000 people who have voluntarily pledged their organs. The sad part is, only a fraction of these donations actually come through, with relatives of the deceased backing out a little too often, even if that means defying the will of the person whose body it is.

Complications also arise on account of traditional notions of death. Loved ones typically accept its finality only once the heart stops and body runs cold. But this is often too late for a useful organ transplant, which is optimally done once a patient is declared ‘brain dead’: an irreversible end of the brain’s ability to function, and thus sure sign of an inevitable ‘heart death’, that allows other organs to be retrieved while the rest of the body is still alive (on ‘life intensive unit’ support perhaps). As many as ten organs, including such vitals as the kidneys, liver, lungs, heart, pancreas, eyes and bone marrow, can be retrieved from a dead-but-otherwise-healthy body.

If more people knew this, reason medical professionals, more of them would be ready to pledge their bodies. In hospitals like AIIMS or Army Hospital in Delhi, counsellors do the job of motivating families to donate the organs of their kin. “Most of our donors have come through only because our counsellors persisted with the families. There is resistance in the beginning, but counsellors have to be persistent,” says Dr Arti Vij, head of the Organ Retrieval Bank Organisation, or Orbo, at AIIMS. Mukesh Kumar, an Orbo counsellor, says that his job is worse than that of an undertaker. Families all but throw things at him when he suggests that they give up the body for a useful purpose. “But it is a job I have to do and I don’t mind being called names [so long as] a donation does finally come through.” Sometimes, he says, families agree to have organs donated as a way to retain a live memory of the deceased in someone else’s body.

“The act of organ donation is similar to making a monetary donation at a temple, feeding Pandits or starting a trust or memorial,” says Sunny Jain, who lost his 21-year-old brother, Sumit, in a train accident near Ghaziabad three years ago. Sumit, returning from college, was leaning out of the train and hit a pole. He was declared brain dead by a private nursing home in Ghaziabad and the doctor treating him recommended organ donation.

Sunny, who was 23 and a student then, had to face the decision alone at first. His parents, who rushed to Delhi from Murshidabad in West Bengal, arrived only a couple of days later, and he convinced them that it was the right thing to do. Sunny, who signed over six of his brother’s organs, cannot forget the trauma of his decision. “When the doctor at the nursing home told me about [Sumit’s death], I didn’t believe him, because I could see his heartbeat flashing on the screen. As we were signing the papers, we couldn’t shake off the feeling [that] we were giving him away even while we could see him breathe.” Sunny’s decision clincher was the memory of a conversation he’d had with his brother. Sumit had told him that he would like to have his body given away. “It was a joke then, but now I feel that [his heart stayed alive] only for this.”

Not all families show the same sensitivity. Dr Bhaskar Nandi, group captain at Delhi’s Army Hospital, confirms what Jasrotia has said: it is almost always the family that comes in the way. “It is a very emotional moment,” observes Dr Nandi, a liver transplant specialist, “Discord within families is a dampener, leading to the window period running out and our losing the possibility of retrieving the organs.”

Since the hospital’s transplant wing began in 2004, it has recorded a donor rate of about 45 per cent. In the absence of a law that mandates organ donation, Dr Nandi feels that the role of counsellors is crucial in a country like India. “We have the benefit of being in uniform, so families do listen to counsellors”—who, he adds, have the difficult task of developing a relationship of trust with the family, and doing so fast enough not to lose the window of transplant possibility. As with the Jains, families are usually in two minds about it, and their dilemma is all the worse when they can actually see signs of life on ventilator machines and heartbeat monitors. “They cling to every shred of hope left, and that’s why the counsellor’s role is so sensitive and crucial,” says Dr Nandi.

Preeti Goyal and her two siblings did not need a counsellor when their mother Santosh Goyal passed away in 2003. After a prolonged illness spanning over five years, their 48 year-old mother was enlisted for a heart transplant at AIIMS. But they couldn’t find an appropriate donor in time. The family waited for about eight months before Santosh’s life was claimed by a cardiac arrest. “Though we were relieved, we also felt cheated, because she could have lived if there’d been a donor,” says Preeti, a 33-year-old school teacher and mother of two. Her brother Ankit and sister Robin were in school at the time. “We decided to donate her eyes and bones,” says Preeti, “It was a collective decision that we three took with our father. It was the only way to deal with the trauma of losing her like this.”

For all the efforts of the medical establishment, the availability of organs and donors is just not increasing at a pace worthy of a compassionate society. Orbo at AIIMS is yet to receive any significant donations through private hospitals, while the Delhi government has only recently initiated a donation helpline.

Dr Sunil Shroff of Multi Organ Harvesting Aid Network, an NGO that works on encouraging organ donation, invests hope in expanding awareness and a sound network of hospitals and banks that maintain donor and receiver lists. This he believes is the best way to ensure that patients like Santosh Goyal do not die in queue for a vital organ. According to rough estimates provided by the Union Health Ministry in November 2011, only 4,000 kidney transplants took place that year, leaving about 150,000 patients still in need; and only 500 livers were transplanted, leaving some 20,000 awaiting liver donors.

With better information networks, though, tissue matching—to reduce the risk of organ rejection—is easier. Private hospitals in Mumbai run an efficient kidney swapping mechanism that optimises matches. As the numbers go up and critical mass is attained, this becomes a routine affair. But reaching that mass is a challenge in most parts of India. Donation ratios are higher in the South. Tamil Nadu is No 1, with a ratio of 1.3 per million. Shroff attributes this to State intervention. Tamil Nadu is the country’s only state that has a list of donors available to all hospitals in all districts. Health is a ‘state subject’ in India, but under the Union Organ Transplant Act of 1994, the Centre is advocating the formation of a national network of organ donors and recipients that would function smoothly without too much paperwork.

While there is a long way to go before critical mass is achieved across the country, Sunny and Preeti are busy doing their bit. Preeti attends fundraisers with her family to promote organ donation in assorted parts of the country. Sunny distributes donor cards at work and family meets in West Bengal. “I don’t know the people who have my brother’s organs,” he says, “But each time I see a young boy his age, I wonder if he has a part of my brother in him. It’s worth the effort.”

About The Author

Aanchal Bansal