At SIUT the dead help the living

Shehnaz: A gift of life from the Netherlands
Shehnaz: A gift of life from the Netherlands

By Zubeida Mustafa

The story begins five thousand miles away in the Dutch city of Maastricht. In mid-January a 14-year old girl slips into a coma and dies due to a ruptured cerebral aneurysm. Her grief-stricken parents decide to gift her organs to the dying. Thus they would have the satisfaction of knowing that a part of their child has not died.

That is how the central registry of the Eurotransplant Foundation in Lieden gets an AB+ blood group donor.

It is noon in Karachi. At the Sindh Institute of Urology and Transplantation (SIUT) in the Civil Hospital there is a call for the director, Dr Adibul Hasan Rizvi, from Dr Ganke Kootstra of the University of Maastricht. There is a cadaveric kidney available. Does Karachi have an endstage renal failure patient who needs the organ and has the matching tissue type?

Thus begins the miracle for Shehnaz, a young woman of 24 and a resident of New Karachi. She has been haunted by the spectre of death for the last four months since her kidneys stopped working. She has survived with the help of dialysis — a procedure in which the function of cleansing the impurities in the blood is performed by a machine to which the patient’s artery is hooked. But life has been robbed of all joy. Since October Shehnaz has had to come to the Institute thrice a week for a four-hour dialysis session. Then too, she feels fit for only a day, after which the nausea returns. She also gets breathless.

If Shehnaz had been more fortunate, one of her relatives could have donated an organ for transplantation and relieved her of her agony. Her mother is in poor health and her father’s tissue type does not match. The brother who drives a rickshaw to support the family of fourteen had been wavering. The husband simply vanished when the subject of organ donation was broached to him.

Shehnaz is not the only patient Dr Rizvi lined up for a transplant operation that red letter day in January when Dr Kootstra called. Two others — one from Multan and another from Badin — also had the same blood type and no donors. When the organ arrived nearly fifteen hours later from the Netherlands, courtesy PIA, the cell sample from the donor’s spleen cast the die in Shehnaz’s favour. Hers was the closest tissue match. (This is important if the organ is not to be rejected by the recipient’s system.)

When I met Shehnaz a month after her surgery, she was in good cheer. Even though she was still in the intensive care unit of the Institute and was waiting to recover fully before going home, she said that she had not felt so fit for a long time. It was nice to be rid of the nausea — and the dialysis machine.

Shehnaz may not have realised it herself but she has made medical history in Pakistan. She is the first case of endstage kidney failure to receive an organ from a cadaver. The technology is not something new for Dr Rizvi, whose experience and expertise in transplantology are matchless.

Nevertheless there was much excitement — and pride — in the Institute on the day of the surgery. It was different taking an organ from a living relative and transplanting it within 20 or so minutes, as Dr Rizvi has been doing since 1986 when Rasheed became transplant patient number one at SIUT. This time a kidney was being grafted 62 hours after the death of an unrelated donor. The operation was a success though the recovery period was longer.

Yet the real breakthrough was not medical. It was in the attitude. When I asked Shehnaz how she felt receiving an organ from the dead, she said she had mixed feelings. She felt sad that a life had been lost. But she was happy that she herself was getting a new lease of life. She felt grateful to the parents of the dead child who had been generous in giving away her organs so that others may live. No, she had felt no fear or doubts. She did not feel superstitious.

But most important of all, a small beginning had been made. Shehnaz’s father, who had not been convinced easily that a transplant could save his daughter’s life, is now fully converted to the blessings of cadaveric organ donation. “If someone else could do it, why not we?” he asked. To the question “would you allow the organs of a close relative who is, God forbid, killed in an accident to be gifted for transplantation?” he answered with a vehement “yes.” He went on to explain that he had experienced the joy of seeing his daughter being pulled back from the jaws of death. He now understands how the dead can help the living.

Will Shehnaz’s case prove to be a turning point for the campaign to introduce cadaveric organ donation in Pakistan? Will Dr Adibul Hasan Rizvi succeed in getting the message across that we cannot simply depend indefinitely on foreigners as a source for transplant organs to save the lives of our critically ill who have no donors? “The fact that a Dutch girl’s organ should be gifted to a Pakistani woman speaks of the bonds of humanity which know no national or racial frontiers. But the crux of the issue is, can Pakistanis be persuaded to donate their organs after death?” Dr Rizvi observes.

Without organs there can be no transplantation programme. With man having been endowed with only one heart, liver and pancreas which are so critical for life, these can be obtained only from the dead. Kidneys come in pairs and that has made it possible for surgeons to remove one from a healthy person to give the gift of life to another who needs it. But there too medical (tissue type), ethical and social issues (the need to prevent commercialisation and sale of organs) have acted as restraining factors. Hence not surprisingly, very often a suitable donor is not available.

Dr Anwar Naqvi, the deputy director of SIUT, says that in Pakistan, 2000 patients of kidney failure die every year because they have no organ donor. Will Shehnaz’s case cause people to ponder the need and implications of a programme of cadaveric donation of organs? If it does, a beginning would have been made.

Why are people reluctant to donate their organs after death? Dr Rizvi and his team have worked wonders in motivating the next of kin of 315 renal failure patients to donate their kidney to save the life of a dear one. But organ donation after death can save several lives, Dr Anwar Naqvi observes. He believes that many people could be persuaded to fill donor cards but their relatives are reluctant to allow organs to be removed.

Motivating people has proved to be an uphill task all the way, as the Pakistan Eye Bank’s experience of several decades will testify to. All the corneal grafts in the country which have restored vision to numerous blind people have, with a few exceptions, come from Sri Lanka. There is a strong ingrained belief that the dead must be shown veneration and to mutilate the body is an act of sin. To reinforce this belief, the religious leaders cite many hadis, most of which have been disputed by Islamic scholars.

There is also the fear of the unknown spawned by ignorance and lack of awareness. In the absence of a tradition of strong social commitment, there has been no move by leaders of opinion, be they political party activists or social workers, to educate the people about their responsibility towards the community.

Although religious beliefs have been said to be the constraining factor, it is plain that these are simply used as a pretext by people to absolve themselves of their primary duty to humankind. If that were not so, how could Saudi Arabia which has a more orthodox approach to Islam organise an efficient cadaveric organ transplantation programme. In the last eight years when the programme was launched, the Kingdom has recorded the retrieval and transplantation of 446 kidneys, 45 hearts, three lungs, four livers and 4294 corneas from cadavers. Religious scholars have quoted again and again from the Quran and the Sunnah to prove that removing an organ from the dead to save another’s life is the most noble act of charity a Muslim can perform to show kindness and benevolence to his fellow beings. It is a myth propagated by obscurantists that the corpse is mutilated when the organs are removed.

The fact of the matter is that our people’s approach to death is shrouded in awe, ignorance and sentimentalism. How many are willing even to talk about death? In such a situation, it is not easy to persuade people to be more reasonable and pragmatic.

The time has come to debate this issue threadbare. There is now a core of a growing number of people who themselves or their close relatives have had their lives saved by receiving an organ from another person. If the principle of receiving an organ is acceptable, should not the moral duty to donate be equally binding?\

In some countries, organ donation is recognised as a moral obligation to society. In France, Austria and Singapore a person’s organs can be removed by law without even seeking the permission of a close relative, if brain death has occurred. This is the normal procedure. An individual only has the right to opt out of this system by filing a declaration to that effect. This law has made the retrieval rate of organs markedly high in these countries.

We will have to start by creating the legal framework for organ donation.The Senate has before it a bill since September 1994 which defines the parameters of transplantation of human organs. It has been referred to a select committee which was to report within a month. It never did. The bill provides legal protection for the removal of a human organ for transplantation after the death of the donor, if he has made a will in writing to that effect in his lifetime. The bill does not go into the technicalities of defining brain death, which would be the next logical thing to do. The conventional definition of death will have to be modified if cadaveric donation is to be promoted.

The Senate must no longer delay this piece of legislation. India has already passed a law on cadaveric donation of organs and the first transplantation of a kidney obtained locally from a cadaver was performed last year. Simultaneously a campaign of social education and motivation should also be launched. Even highly educated people in Pakistan tend to be extremely superstitious when it comes to health, disease and death. They need to be informed more about these issues. More importantly, they must be told about the 26,000 men, women and children who die of organ failure in Pakistan every year. Many of these deaths are avoidable with organ transplantation. But only 250 kidney transplantations are taking place in the country annually when 12,000 persons suffer from endstage renal failure. As for the 8000 patients of liver failure and the 6000 heart failure sufferers, there is no hope for them at all in the absence of provision for cadaveric donation of organs. It is time our people were told about the possibilities of the dead giving the gift of life to the dying. It would at least prompt them to take a different view of death.

Source: Dawn 23-03-1995