How to save a life

After doctors declared him brain dead, Naveed’s family decided to fulfill his wish — they gave away his organs.

Anwarul Haq was disconcerted when his son Naveed came up to him with a most unusual request: that Anwarul Haq honour his wish to have his organs donated in the event of his death.

“When you have children later on in life, tell them about your wishes. Why are you telling me this?” he had retorted angrily. Implicit in his response was the hope of seeing his son live a long and healthy life. After all, no parent ever really wants to contemplate the death of their child.

In retrospect, the request shouldn’t have come as a surprise. Naveed was born with an altruistic nature and was a frequent blood donor. Still, the elderly Anwarul Haq was left uneasy by the idea of an opportunity for charity borne out of his son’s demise.

Little did he know that fate would soon force him to consider the request he had hastened to dismiss far earlier than he could have imagined.

On October 24, 1998, 22-year-old Naveed met a serious road accident in Karachi’s Federal B Area and fell into a coma. Within a couple of days, doctors at the Liaquat National Hospital pronounced him brain dead.

While his body was still functioning on life support, Naveed’s family was confronted with a hard decision — one far more momentous than deciding when to pull the plug. And as every passing hour reduced the efficacy of life support, there was little time to squander in debate.

And thus Naveed’s family members decided to fulfill his wish — they gave away his organs.

Thirteen years later, Anwarul Haq’s careworn eyes sparkle with pride as he recounts the way his son became the country’s first deceased organ donor. “He had a benevolent spirit and I knew he would be happy with our decision,” he recalls with a bittersweet smile.

But the decision to donate Naveed’s organs was far from some matter-of-fact consensus reached by family members. In fact, Anwarul Haq explains, the decision was actually taken with a heavy heart and after much debate.

Even as Naveed was being taken by surgeons from the Sindh Institute of Urology and Transplantation (SIUT) for the extraction of his kidneys, his younger brother was at Abdullah Shah Ghazi’s mazar praying for his brother’s revival.

His prayers were not answered, but those of Wajid Hussain and his families were. Wajid, a patient of end-stage renal failure, was the lucky recipient of Naveed’s kidney.

On November 4, 1998, 25-year-old Wajid returned home from a routine session of dialysis at SIUT, just as Naveed’s family was in the process of coordinating with Dr Adibul Hasan Rizvi — a well-known philanthropist and director of SIUT — for the removal of his kidneys.

Feeling listless after the gruelling dialysis session, Wajid lay sprawled on his bed. While the procedure cleansed his body and kept him alive, it also sapped his energy and left him unfit for employment. “The very first time I got dialysis, I experienced fits. It was terrible,” he says.

Wajid’s family had tried to find a permanent solution and his brother had even donated his kidney to him. But just 22 days after the transplantation, Wajid’s body rejected the organ. With little hope, Wajid resigned himself to the recurring nightmare of endless dialysis sessions. Seven months after resuming treatment, he began to feel that his life would forever be at the mercy of the dialysis machine. The needles that pierced his body and the cellophane tubes that carried his blood to and from the machine, all signified his losing battle against kidney failure.

Little did he know that salvation was just a phone call away.

“I got a call from SIUT informing me that my tissue type had matched a deceased donor’s and I would be getting a kidney,” he recalls.

Torn between hope and fear, Wajid rushed to the hospital for the surgery that would change his life. On November 5, Naveed’s kidney was successfully transplanted into Wajid at SIUT. The kidney integrated seamlessly into his system. Ironically, although his body had rejected his own brother’s kidney, a stranger’s organ has been fully functioning inside him for 13 years.

The transplant worked wonders for Wajid’s health. He felt like his former energetic self again. “I am healthy now, working as an accountant for a warehouse,” he beams. “I remember the time when I would have difficulty even walking.”

For Anwarul Haq, Wajid’s good health is a form of immortality for his son. “When I see Wajid, I feel proud that my son’s kidney is well. I feel proud that I was able to keep a part of my son alive,” he says.

However, such heart-warming stories — showing how death can paradoxically mean life for others — are few and far between. Cadaver organ donation has failed to gain momentum in Pakistan, even though cornea transplantation in the country dates back to the 1960s.

In 2010, the organ transplantation law moved by parliament banned commercial organ transplantation, but boosted cadaver organ donation by providing a regulatory mechanism for storage and transplantation of human organs. However, social acceptance of the practice lags far behind medical and legislative advances.

In a country where nearly 18,000 people die of end-stage organ failure, and illegal commercial renal transplantations have grown unchecked, there is a dire need for promoting cadaver organ transplantation.

“It’s preferable to have a deceased donor because it reduces risk, especially in the case of a liver transplant because a living donor’s life is at risk during the procedure,” says Dr Nasir Luck, associate professor of hepatology at SIUT. “And for the transplantation of some organs, like the heart, the only choice is to have organs from deceased persons.”

While living-related renal transplants — legal because the kidneys are donated to family members — are common in Pakistan, those with end-stage renal failure are often unlikely to find donors within the family. Cadaver donation can potentially fill in that gap.

However, the figures for deceased organ donation are grim. So far there have been only four local deceased kidney donors whose kidneys were transplanted at SIUT in Karachi and one deceased liver donation, which led to Pakistan’s first cadaver liver transplantation in August 2011 at Sheikh Zayed Hospital in Lahore. The numbers for cornea donation — which is essentially a tissue donation — are relatively better but that is simply because the procedure started decades ago. The Pakistan Eye Bank Society (PEBS), the oldest institution for cornea transplantation in the country, has carried out over 15,000 cornea transplantations since the 1960s, but only roughly 200 out of these were local corneas.

In stark contrast, deceased organ transplantation is an accepted and well-established procedure in Western countries and has recently gained prominence in Muslim countries such as Iran, Saudi Arabia, Kuwait and Egypt.

Why then is cadaver organ donation almost nonexistent in Pakistan? Dr Rizvi blames what he calls a lack of empathy for the cause, a lack borne out of the sad fact that most people do not even have access to basic medical care. “The majority of our population does not even have the means to seek proper medical treatment,” he complains. “How can we then make these people empathise with others who are in dire need of organs? How can we ask them to fill donor cards to save the lives of other people?”

Others blame the lack of social acceptability of the practice and religious reservations. “Historically, there has been religious resistance against organ donation — people believe that one should not tamper with the human body since it is God’s creation,” says Qazi Sajid, the president of PEBS.  “This has played a big role in the past in creating reservations against donating organs.”

Despite these perceptions, there are still people who want to donate their organs. At SIUT, nearly 500 donor cards pledge people’s organs after their death. However, simply having a potential donor fill these cards is not enough.

“It’s the family’s decision at the end of the day,” explains Sanober, a medico-social officer at SIUT. “If the family refuses to give organs, which they do in many cases, what can we do?”

For  organs to be viable for donation — except in the case of corneas which can stay ‘alive’ for a few days after a person’s death — the donor should be clinically dead, yet his body should be functional on life support. During such a critical period, giving away their loved one’s body parts — even if it is for another the sake of saving another human’s life — is often the last thing on the minds of inconsolable family members.

And nobody knows more about this knotty issue than the social workers and doctors who work in the intensive care units of major hospitals and are tasked with the job of sensitising families about cadaver organ donation.

“We try to tell people that God doesn’t need their loved one’s organs, he needs their souls,” says GM Sheikh, the coordinator for deceased organ transplants at SIUT.

But his efforts are often in vain and are even met with outright hostility in some cases. He narrates an incident when he had a close call with a family who had lost a young male relative. “They thought I was a vendor involved in the illegal commercial sale and transplantation of organs and started threatening me,” he explains. “Until the commercial sale of organs does not stop in Pakistan, the true purpose of cadaver organ donation will always be misconstrued.”

While people like Sheikh continue their struggle, there are other institutions like the PEBS which have long abandoned any hope of attracting local donors. Since corneas, unlike organs, can survive outside the body for a longer period (up to a week) and don’t require tissue matching, eye banks in the country have found an easier alternative. For blind people in Pakistan, hope comes from foreign shores. And to turn this hope into reality, in place is a seamless supply chain connecting the sun-kissed coastal city of Colombo with the sprawling metropolis of Karachi.

Waseem Rais, coordinator at PEBS, is a part of this supply chain. Roughly three times a month, Rais goes to Karachi airport, carrying an authorisation slip. He hands the slip to airport personnel who inspect it thoroughly before giving him a tightly wrapped Styrofoam box. Tucked securely inside this air-tight box, are four small sealed glass bottles containing donor corneas from Sri Lanka.

“The glass bottles don’t contain entire eyeballs, just the lens of the eye,” Rais clarifies with a smile. “As soon as they arrive, we surgically transplant the cornea into a patient’s eye. We even donate these corneas to other local hospitals.”

Sri Lanka Eye Bank (SLEB) actively donates corneas to the world — nearly 3,000 a year — with the largest share going to Pakistan. The institution has had a strong liaison with the PEBS since the 1960s and also donates corneas to other eye banks in the country.

But for those who have other malfunctioning organs, like kidneys, replacements must come from the local population. There is currently a waiting list of nearly 300 patients at SIUT, with no-donor status.

Hakim Zadi is one such patient. In SIUT’s spacious waiting area, the emaciated 15-year-old girl patiently waits for her dialysis session to begin. A woman holding a microphone, hovers restlessly on the margins — every now and then she announces the name of the next patient in line for the procedure.

“There was a girl who used to sit with me in the waiting area for dialysis patients,” says Hakim Zadi. “One day, she told me that she was getting a kidney from her father.” She adds wistfully, “I was happy for her, but I pray to God that I also get a kidney one day.”

People like Hakim Zadi can hope that they will be more deceased organ donations in the future. But chances are that these donations will not come from just anyone, but from those who have actually witnessed how such contributions can turn around a life.

It’s been over a decade since Naveed’s family donated his organs but that endowment was not just a one-off philanthropic deed. In fact, it has sent a powerful precedent. “All of Naveed’s friends are now deceased organ donors,” says Anwarul Haq. “All of them carry donor cards in their wallets all the time.”

Then he pulls his hunched shoulders taut with pride: “And so do I.”

Published in The Express Tribune, Sunday Magazine, June 3^rd, 2012.