It was an afternoon of mourning for the Sindhi and Patel communities in Indore in April. Thirty-six people from the two communities had died after the Beleshwar Mahadev Jhulelal temple, built on a deep stepwell, had collapsed in Indore’s Sneh Nagar earlier that month. As thousands gathered for a few hours at two different shok sabhas (condolence meets), organised a few 100 metres apart in the same locality, a 53-year-old bespectacled, moustachioed Sindhi man in a kurta zipped from one meeting to another, making impassioned appeals at both gatherings.
Sandeepan Arya, who has made it his life’s mission to spread awareness on organ donation, urged the mourners gently, “Organ donation is an opportunity to help humanity. Eyes can be donated only till eight hours after a person dies. As of 11 pm on March 30, 12 bodies reached the mortuary. Of these, eight families agreed to change this tragic time in their lives into something wonderful by consenting to donate organs. Three of these eight families also agreed to donate their kin’s skin, which can be used to treat innumerable burn victims in India. I want to thank those families for setting a great example, even on the darkest day of their life.”
Sanjay Khanchandani (45), who lost his sister-in-law Bhumika Khanchandani in the tragedy, said, “Bhumika was my younger brother’s wife. She wanted her organs donated after her death and had informed her husband about her decision. When she passed away, we contacted Muskan (Arya’s NGO).”
Vijay Sachdeva (44), a social worker and blood donor who joined Muskan during the pandemic, said, “My aunt, Bharti Kukreja (58), died in the incident. I requested my uncle to donate her eyes and skin. He agreed to my request. This is the fourth time my family has donated the organs of their loved ones over the last 10 years.”
As soon as he received the news of the temple tragedy, Arya and his team rushed to the spot. From there, they went to the mortuary to convince families to donate organs. “We have to be very delicate when we talk to mourning families regarding organ donation. It can take as long as 3-4 hours at times to convince families to donate organs. We always have a team on standby to start the retrieval procedure as soon as a family agrees to donate organs,” said Arya.
Muskan was started in 1991 to help poor girls get married with the help of contributions. Soon, the NGO started working in multiple areas, including eye donation. The first pair of eyes donated by the NGO belonged to Arya’s mother. He credits the work done by the NGO for receiving calls from two families that wanted to donate organs.
“Because of these two families, six more came around. Soon, other families too consented to donate the organs of their loved ones. But many bodies were recovered after eight hours. By then, the corneas had decomposed,” he rued.
Five transplants from eight pairs of corneas collected so far have been successful. Confirming this, Dr Sanjay Dixit, Dean, Mahatma Gandhi Memorial Medical College, Indore, and in charge, State Organ and Tissue Transplant Organisation (SOTTO), Madhya Pradesh, said, “Five lives have changed due to corneas received from the victims of the temple disaster. The patients are very happy and thankful to the families of the deceased for making this decision during a difficult time.”
Among those who received a cornea was a 35-year-old artist who had lost vision in one eye due to a virus two years ago. He would use his hair to hide his damaged eye. Five to seven days after the transplant, he got almost 80 per cent of his vision back. He can now read and drive.
“He was extremely happy. He does not need to hide his eye anymore,” said Dr Shweta Walia, Department of Ophthalmology, MGM Medical College and MY Hospital, Indore.
Dr Ankit Deokar, who performed one of the surgeries, added, “The recipient was on the waiting list for six months. He was ecstatic to see the faces of his parents after such a long time. Before the transplant, he was unable to walk, eat or go to the washroom by himself. He could barely read with one functioning eye. Thanks to the transplant, he will be able to read again.”
Another recipient of this life-changing gift was an 80-year-old woman. She had undergone an eye surgery 20 years ago, after which she lost vision in one eye. She also has hearing problems. “She had lost all hope and wondered why we were even bothering with the surgery since she could not see with the other eye. We implanted the lens, did a cataract operation and the cornea transplant. She can now see up to 3 metres and do her own work. She was delighted,” added Walia.
Yet another recipient of the cornea was a 65-year-old beggar, brought to the hospital by a trust.
Anil Gore (33), an eye technician from Sankara Nethralaya who was at the mortuary to retrieve the corneas, explained, “We have a success rate of 70 per cent in case of cornea transplants. About 30 per cent of corneas cannot be transplanted due to negative tests or advanced age of a donor.”
According to the Eye Bank Association of India (EBAI), an NGO, 9.70 lakh Indians suffer from blindness due to cornea disorders that can benefit from transplants.
Calling his father his inspiration, Arya said he started promoting organ donation in 2004. Financially secure, thanks to the cloth business started by his father, he said he is able to give back to society. “My father was known for his social work. He always said that we should help people however we can, including in death. He told us to donate his body after death. Once, he got a call regarding an eye donation on Diwali. He asked me to drop everything and attend that call. Because of him, I started raising awareness on organ donation from 2004 onwards. When my 76-year-old mother died a few months later, I donated her eyes. My father was 81 when he passed away in 2010. We donated his eyes and body as per his wishes,” he said.
Initially, Arya’s wife Kirti would get upset when he would miss important family functions to attend calls related to organ donations. She came around once she saw the difference her husband’s work was making. “Once he missed the engagement of a close relative. I was very upset. Then he introduced me to the mother of two children who had received a kidney thanks to his NGO’s efforts. I stopped bothering him after that. I feel proud of the work he does,” said Kirti.
The couple’s two sons, who are engineers, also help Arya by spreading his message within their network.
Talking about the skill required to approach mourning families to consent to donate organs, Arya said the National Organ & Tissue Transplant Organisation (NOTTO) holds training to sensitise nursing staff, social workers, ambulance drivers and people who do work related to last rites. Since 2004, Arya and his team have been going to shok sabhas to raise awareness.
He added, “We can only motivate families to donate organs. We cannot pressurise them. There have been times when upset families have dismissed our work as ‘business’.”
Earlier, he would receive calls from hospitals to counsel families to donate organs. “We are known quite well now. Families call us up directly. The work done by our NGO speaks for itself,” he said.