Syed Sulaiman Akhtar, 43, was born with a defective bladder. He had to go through three surgeries when he was only three months old. Even after the surgeries, his health did not fully improve. His kidneys started malfunctioning when he was in grade nine; the doctors had to remove one of his kidneys in 1994. For one year and four months after his kidney removal, he survived through dialysis carried out at the Sindh Institute of Urology and Transplantation (SIUT). The doctors then told him that he needed a kidney transplant. On September 29, 1996, his mother donated her kidney to him, changing his life forever.

Akhtar got married in 2005 and today has three children. He has travelled to several countries and participated in the World Transplant Games where he won gold and silver medals in sprinting. “I am very happy. I am enjoying my life and doing everything everyone else does,” he says. “Nobody even notices that I have lost one of my kidneys until I tell them.”

Akhtar is extremely thankful to SIUT and its doctors, nurses and all those working there “who are giving a second life to people” like him. “I had almost lost hope once.”

Not everyone is as fortunate as Akhtar. He was lucky to have found a willing donor from his family whose tissues and blood group matched his. Many cannot find a willing donor. In other cases, even when friends and family members are willing to donate organs, medical incompatibility does not allow the transplant to take place. According to the SIUT website, more than 50,000 people die of organ failure in Pakistan each year. Out of these, 15,000 people die of kidney failure. Another 10,000 lose their lives because of liver failure and 6,500 succumb to heart failure. Many of these lives can be saved if organs become available for transplant.

It is a big if. Medical science has evolved rapidly over the last century or so but has yet to attain a level at which organ transplantation can become a routine remedy, available to all and sundry. Firstly, there are not enough living donors around who are willing to donate organs to others. Secondly, a transplant is a specialised treatment not easily available everywhere. Thirdly, the universal availability of transplant techniques has a potentially massive downside: in poor countries like Pakistan, it can lead to the creation of a black market for organ trade where intermediaries and unscrupulous doctors buy organs from the poor at throwaway prices but sell them to rich patients at asking rates.

This is where deceased organ donation comes in.

Dr Adibul Hasan Rizvi, SIUT’s founder and director, describes deceased organ donation as the process of acquiring organs from a person after their death to transplant into patients who are dying from organ failure. Death, according to medical science, takes place when the brain ceases to function completely, he explains. People often regard a person as alive if their heart is still beating and their heart monitor still shows cardiac activity, he says. But sometimes their brains are already dead. When someone is brain-dead, according to Rizvi, all the voluntary and involuntary activities necessary to sustain life come to an end. It differs from a ‘persistent vegetative state’ in which a patient retains some autonomic functions even when they cannot move most parts of their body, he adds.

Once a person is brain-dead, their organs start shutting down – some earlier than others – but all of them start rotting almost immediately after they stop receiving blood supply, except the corneas. Corneas require very little blood to remain functional for much longer than other organs even within the deceased person’s body. For other organs to remain usable, the deceased person must be put on a ventilator immediately after their death so that their ventilator-assisted cardiac activity continues to supply blood to their organs until they can be removed and preserved for transplant.

In recent decades, the practice of deceased organ donation has become quite common in many countries around the world, says Rizvi. Some of them have lately introduced the ‘opt-out policy’ whereby people can notify the government that they do not want their organs taken out for transplant after their death. France has become the latest country to introduce this policy, joining Spain, Austria, Belgium and Singapore. In Pakistan, deceased organ donation remains a largely novel phenomenon. Only a few lives have been saved through such donations in the country so far, Rizvi says.

The first deceased kidney transplants in Pakistan were carried out at SIUT in 1995 with kidneys gifted by the Eurotransplant International Foundation in the Netherlands. A surgeon there, who knew Rizvi, sent kidneys for 31 transplants, says Dr Rubina Naqvi, a nephrologist at SIUT.

The first local deceased organ donor was a young man named Naveed. He suffered a serious head injury in 1998 when a truck rammed into his motorcycle in Karachi. He was taken to Liaquat National Hospital where he was kept on a ventilator for a day. The next day, doctors told his parents that he was brain-dead and there was no reason to keep him on a ventilator. That is when Naveed’s father remembered something his son had once said while they were having dinner at home. Naveed had wondered out loud at how honourable it would be to support someone even in death. His father then asked the hospital authorities if it would be possible to donate Naveed’s organs. The doctors called Rizvi at SIUT who sent a team of medics to Liaquat National Hospital for retrieving his organs for future transplants.

Naveed’s family wanted one of his kidneys to go to a relative who was undergoing dialysis at SIUT. The other was to be donated to any other person in need. The doctors obliged. The other person – let us call him Taimur – says he was leading a miserable life prior to the transplant. He used to visit SIUT three times a week for dialysis that took a total of 12 hours of his time. He was in his early 20s at the time but could not do any work. After receiving Naveed’s kidney, he regained his energy, time and the will to live a happy life. He got married, and today has children and lives a normal life.

The second deceased organ donor in Pakistan was 22-year-old Shamim Bano, a social worker from Hunza Valley, who died in an accident in January 2005. Her kidneys were transplanted to two patients at SIUT. Her corneas were donated to the Layton Rehmatullah Benevolent Trust, which specialises in the treatment of ailments related to eyesight.

The third deceased Pakistani donor was Abdul Razzak Memon, a professor of pathology at Sindh Medical College, who suffered brain death due to massive intracranial bleeding in 2007. His family decided to donate both his kidneys.

The fourth donor, Syed Imran Shah, was 21 when he suffered a road accident in Islamabad. He was taken to Shifa International Hospital with a serious brain injury. When all attempts to save his life failed, his parents informed the doctors of their wish to donate his organs. One of his kidneys was transplanted to a patient in March 2010 at Shifa, while the second one was sent to SIUT and transplanted a day later.

At 16 years of age, Arsalan became Pakistan’s youngest deceased organ donor. A resident of Lahore, he died in a road accident in 2011. His liver was donated for transplant with the consent of his mother.

There is a wide gap between the number of people who say they support organ donation and the number who actually register to donate their organs. When SIUT and other hospitals reach out to the media to promote the cause, many people make pledges on camera but very few actually follow through.

Until recently, a major hurdle was the lack of a legal framework for organ donation. For a very long time, organ donations happened either because people wanted to save the lives of their close relatives and friends or there were poor donors whose organs were transplanted to the rich. All kinds of unethical and illegal activities went on in the name of organ transplantation, making it look like an activity that one agreed to only when in dire need.

In 2010, the federal government promulgated a law, the Transplantation of Human Organ and Tissues Act, to regulate organ donation and transplant. It was followed by the Punjab Transplantation of Human Organs and Tissues (Amendment) Act 2012 that resulted in the creation of a regulatory authority in the province for organ donation and transplantation. Now that there are laws, there is also hope that they will lead to more organ donation by both the living and the deceased.

The level of deceased organ donation, meanwhile, has been quite low. Rizvi calls it a failure of society, the government and medical professionals. They have all been unable to educate the public on this issue, he says. No one wants to talk about death, he says. Rather than preparing the families of patients for their loved ones’ deaths, he remarks, the doctors keep giving them false hope.

Deceased organ donation is also victim to the myth that doctors may not try to save a life if they know that the person is a donor — that they would rather save their organs for transplant than save the patient. But Rizvi insists that the question of organ donation only comes up after all avenues to save a person’s life have been exhausted. Only then do doctors try to save organs like the heart, kidneys and liver so that other lives can be saved using them. “So, if I am dead, I can live in 12 different bodies by donating my organs,” he says.

Religious perceptions pose another constraint. Many among us believe that deceased organ donation is un-Islamic. Rizvi and SIUT have made serious efforts to counter these perceptions. One major result of their efforts is a recently published volume that contains individual and collective fatwas issued by the ulema and religious scholars of all sects and schools of religious thought. These fatwas categorically state that Islam allows organ donation and transplantation. How this initiative will contribute to changing the public perception – and by how much – is yet to be seen.

Pakistan’s greatest humanitarian activist, Abdul Sattar Edhi, passed away on July 8, 2016. As per his wish, his corneas were donated to two blind people. “The transplant took place in this very hospital,” says Naqvi at SIUT.

Edhi’s son and heir, Faisal Edhi, says he told SIUT to ensure that the first people on the waiting list got the corneas, be they Muslims or non-Muslims. “I have no objection; my family has no objection. I told them [the recipient can be] anyone — Parsi, Hindu, whoever.”

Faisal says he contacted SIUT several times to find out about the recipients of his father’s corneas but he was told by Rizvi and SIUT that it would not be ethical to disclose their names and contact details. Faisal believes there is no harm in divulging their names if they can be used to promote the cause of organ donation. “Our society is very weak” in breaking new ground, he says. Whenever something big happens in a country like ours, it is always led by great personalities or institutions, he argues, making a case for using his father’s name and those of the recipients of his corneas to raise awareness and change people’s attitude towards deceased organ donation.

Rizvi, however, insists on confidentiality. “It is a requirement of the law.” International rules and regulations and best ethical practices demand that we keep the details of recipients confidential, he says. He agrees that Edhi’s cornea donation became big news because the philanthropist was a great social icon, but, he goes on, “We have been doing cornea transplants earlier too” and never felt the need to reveal the recipients to society as sources of inspiration and awareness.

The SIUT website carries the names and pictures of deceased organ donors. It, however, carries only the pictures of the recipients — never their names.

Following in the footsteps of his father, Faisal himself has pledged to be an organ donor after death. “I have submitted my consent form at SIUT to promote the cause and send a message to society. There are millions of people who cannot see or need other organs to survive. The deceased organ donation programme gives them a chance to lead normal lives. It is the most humane thing to do.”

Most people plan excessively in life. Very few, though, make plans for what will happen after they are dead. To be a deceased organ donor, one needs to plan for what will happen after one’s death. It sounds counterintuitive, but some among us are already doing this by signing up for a programme for deceased organ donation and then informing family and friends about the decision.

Madeeha Syed, 32, a journalist and nature enthusiast, has done exactly that. She believes in leading a life full of purpose, and finds the idea of being able to do something after dying even more worthy.

Syed was working on a short documentary on the heat wave that struck Karachi in 2015 that claimed more than 1,500 lives. She was in a hospital with the families of the deceased and remembers watching hospital staff trying to stuff human bodies into a morgue that had no space left. She recalls a mass burial of unidentified bodies in a graveyard where she was the lone woman among a large number of men. The bodies had serial numbers and dates of death on them. “[The whole place] smelled really bad.” What horrified her was that she knew what the smell was. “It was the smell of rotting blood. It was the smell of death.”

She remembers standing near the bodies and seeing them at different stages of decomposition. “I noticed how empty they seemed. The absence of energy, or the soul as we call it, was causing them to decompose faster.”

This made Syed decide on two things. “One was that I was not going to live a life without purpose and I was going to make every moment count as we do not know what will happen next. The other was that my body would not be wasted in death.”

At first, she did not tell her family about her decision to donate her organs. “They are very emotional about everything,” she says. “The only angry reaction I got was from my father. I understand no parent likes to think about their children dying and that was one of the things that upset him. For him, it was not that I was talking about organ donation; it was that I was talking about dying.” Her mother, however, reacted differently, saying it was generous of her daughter to sign up for organ donation.

Syed still fears that her wish may not be fulfilled after her death and that the people around her may be reluctant to donate her organs. This is why, she says, when she got her donor registration card she put a picture of it on social media to let people know and promote the cause. Now, she carries her donor card with her all the time. This is her way of making her desire clear. “You die knowing you could help save someone’s life.”

This article was published in the Herald's December 2017 issue. To read more subscribe to the Herald in print.