April issue 2015
The Gift of Life
Mariam beamed as she looked across at her daughter thinking, “What in the world could be better for a mother than to see her daughter alive and well?” — especially when, just a year ago, she had almost lost her.
Saima today is a bright and cheerful little 11-year-old, but just a few months ago, she was sickly, unable to eat much, pale, and constantly itching. Her parents took her from doctor to doctor, who prescribed medicines that gave only temporary relief. Then her illness was diagnosed: chronic renal failure. The dialysis that had to be routinely carried out drained Saima of energy. Mariam and her husband were shattered. At that young age, how would their child cope? How long would she survive?
And then, hope appeared on their horizon: if they found a kidney donor, Saima could grow up into a healthy adult. But how? Kidneys aren’t over-the counter medicines that can be easily purchased.
That is when the couple learnt about the SIUT. Yes, it was kidney failure, and yes, Saima would improve if she could find a donor kidney that matched. Cadaveric donation being in extremely short supply in Pakistan, Mariam was asked if she would donate a kidney to her daughter, if her blood group matched, and all the other necessary factors were present. Mariam didn’t hesitate for even a moment: “Gladly,” she said.
There was a period of hospitalisation and surgery for the mother and daughter, and then the joyful phase of recovery.
(While names have been changed this case is based on surgery carried out in a similar case at the SIUT, and reported in The News, in 2012).
According to SIUT estimates, each year approximately 50,000 patients are in need of organ transplantation at its hospital alone. Every transplant requires detailed, careful checking and serotyping to determine the most appropriate donor-recipient match. Even after transplantation, there’s the tension-filled waiting period — did the recipient’s body accept the donor organ? Were the immuno-suppressant drugs, which help the new organ fit smoothly into its new host body, effective? There are endless complications to look out for and deal with when they occur, before the patient can be pronounced healthy.
Nevertheless, the transplant surgery itself is immensely worthwhile — ask any survivor, or anyone who has almost lost a loved one. There are numerous heartwarming stories, and also heart-wrenching ones of deep loss. And yet, from that pain also comes the miraculous happiness of lives saved.
Although organ transplantation remains one of the most challenging and complex areas of modern medicine, because it is so rewarding it has taken off in a big way: The first successful transplant was in 1954 of a kidney harvested from an identical twin, which minimised adverse reactions. This was followed by the well-known ground-breaking heart transplant surgery by Dr Christian Barnard in 1967. Today it is possible for the heart, kidney, liver, lungs, pancreas, intestines and thymus to be transplanted. Even tissues like bones, tendons, cornea, skin, heart valves, nerves and veins can be transplanted. The organs for transplantation may be provided by individuals who are alive, or dead by circulatory or brain death, up to 24 hours after the cessation of a heartbeat. Most tissues, except the cornea, can be preserved for up to five years.
Dr Mehmet Haberal, a pioneer in organ transplantation and burns treatment in Turkey, was recently in Karachi for the ground-breaking ceremony of the SIUT Children’s and Cardiac Hospital. He is the President of the Turkish Transplantation Society and also the Founder President and President Elect of the Middle East Society for Organ Transplantation (MESOT).
He spoke about his journey thus far. “In the early ’80s, I realised that there were no real transplantation activities going on in the Middle East and there was no communication between transplant centres. So in 1984, I decided to found the Middle East Dialysis and Organ Transplantation Foundation (MEDOTF) to facilitate organ sharing and procurement in the Middle East, and held a meeting in Istanbul where many different Middle Eastern countries participated.
“But later, in 1987, as more countries, including Pakistan, joined, I decided to found MESOT. MESOT’s first meeting was held in Turkey in 1988. And now every two years, a congress of the member countries is held in a different part of the Middle East. I also felt that the society president should come from a different country and so every two years there is a new president of the society. Dr Anwar Naqvi (a senior professor at the SIUT) served as president from 2008-2010. Today, this society is one of the most active — not just in the Middle East — but around the world when it comes to organ transplantation.
“During my medical school career, whenever a patient with kidney disease came to the emergency room, we had no method of treatment. But today, I can say to a chronic kidney disease patient, ‘Don’t worry, at least we have dialysis. We can dialyse you, and if possible we can give you a transplant as well.’ But when it comes to liver disease, we have to find a new liver, because unfortunately, we don’t yet have an artificial liver,” says Dr. Naqvi, adding, “Technology is getting better, and I hope one day we’ll be able to find solutions to making new cells, in which stem-cell research has already made a lot of progress. We never know when or what kind of new things we will find.
“New discoveries are always being made in the field of biomedical engineering. But nothing is better than human tissue, so we are trying to use human tissue as much as possible in transplantation. But sometimes there is not enough to solve the problem, so we need newer technological activities.”
The founder of the SIUT, Dr Adib Rizvi is also hopeful, “Research will go on. It is a challenge between death and survival.”
But besides the medical and technological side of organ transplantation, there is a whole host of bioethical issues that transplantation raises. What exactly is the definition of death? When and how should consent be given for an organ to be transplanted — especially at a time when family members may be grieving and unable to take life-changing decisions? What about payment for organs that have been transplanted? Doctors and medical personnel must handle these matters with extreme sensitivity.
‘Tourism transplantation’ is yet one more ethical issue to deal with, but organ trafficking is a frightening reality. Readers may recall the horrifying situation some years ago, when unscrupulous doctors took undue advantage of poverty-stricken people who, having little recourse to information or employment, sold their kidneys, giving rise to kidney transplant tourism in this country. Pakistan turned into a haven for this criminal trade, which resulted in a lucrative business for the sale and purchase of human organs. The Supreme Court eventually clamped down on the criminal activity, banning this illegal trade with immediate effect. Doctors then keenly pursued effective, ethical legislation, and succeeded in getting the law on Organ Transplantation passed by the National Assembly in 2010. The law was passed in Sindh in February this year.
Full-scale organ transplantation therefore has to be considered very carefully, because with the growth of this sector, the likelihood of the unethical sale of organs also increases.
Although Pakistan is one of the largest beneficiaries of the 3,000 corneas Sri Lanka donates to the world each year, when it comes to cadaveric donation, most Pakistanis are very hesitant. Undoubtedly, far greater media awareness is critical to encouraging deceased organ donation, as is the necessary hospital infrastructure and medical expertise.
Talking about this hesitancy, Dr Haberal says, “If people believe that you are doing something for the good of society, not for personal benefit, they will have faith. Trust is very important. If people trust you, you can do whatever you want. The SIUT shows that the people of Pakistan trust Dr Rizvi and Dr Naqvi, otherwise they would not be able to do what they do.
Says Dr. Rizvi, “You have to convince the people. When I started transplantation in the Middle East, there was little knowledge about transplants at the time. So I had to show that dead people’s organs can save people’s lives.”
Dr Rizvi shares that patients are always hesitant with regard to the cost of the transplant treatment. “But if you remove these hurdles, people become more open to the idea of transplantation.
“As far as organ donation is concerned, diseased donors can donate their eyes, lungs, heart etc. So if a person comes to the hospital with an injury, of course every effort should be made to save his life, but if that is not possible, we should at least save his organs so someone else, may gain a new life. And this way a patient lives on through his recipients. One man can actually give life to 17 other people. As a Muslim, there couldn’t be anything better.”
Dr. Rizvi believes that private hospitals in Pakistan do not talk about organ donation, despite its numerous benefits, “because as long as the ventilators are working, they are making money.”
A lack of awareness is also a key problem in Pakistan. “PTV is the national channel of Pakistan, but if I ask them to run an advertisement asking people to make a will for their organs to be donated, they charge a huge sum of money. The only people who can help are those in the media, but the media remains silent. It does not investigate health stories.” In Pakistan, far more advocacy regarding renal disease is required, so that people can deal with it right from the start. Lack of awareness exacerbates the problem. And positive media coverage can alter public perceptions regarding cadaveric donations.
But life is never without hope, so, in line with the optimism of Dr Haberal and Dr Rizvi, here is an exciting new promise: 10 years hence, doctors and scientists may actually be able to use 3-D printers to print out human replacement organs, including the heart. An ear printout may be possible in five years’ time, and its actual printing will take only 15 minutes. They call this scientific endeavour ‘Tissue Structure Information Modeling’ (TSIM) — an intuitive software that empowers doctors and scientists to design, visualise, collaborate, simulate and analyse 30 complete models of complex tissue structures.
The future is here and happening!