By LIM WEY WEN
IN July 2005, Mohd Fikri Nor Azmi came into the limelight when he became the first boy to receive a mechanical heart device.
After a waiting period of about five months, he was given another chance at life when he received a heart transplant in December that year.
Playing it forward, Fikri has now become the staunch buddy of 14-year-old Tee Hui Yi, who had spent more than a year in the National Heart Institute waiting for a new heart.
This year in October, Santa came early for Tee with two new hearts and a new lease of life.
Walking out of the hospital with a big smile on her face, Tee is the latest poster girl for organ transplantation.
With Hari Raya Aidiladha and Christmas still lingering in the air, the coming New Year certainly puts us in the mood of giving.
In fact, according to National Transplant Resource Centre (NTRC) chief national transplant coordinator Datin Dr Lela Yasmin Mansor, within four to five weeks after Tee received her heart, the centre had recorded about 10 actual donors.
“We could see that awareness is already increasing, at least (the people) know about (organ and tissue) donation and transplantation,” Dr Lela said.
Despite the renewed interest in organ donation following multi-lingual media coverage and publicity, there is always a possibility that certain pockets of the community may have missed the opportunity to learn more about organ donation, she added.
The gift of life
Organ transplantation is the gift of a donor’s body parts, usually after death, for the purpose of replacing the recipient’s damaged or failing organ with a functional one.
Viewed by all the major religions in the world (Islam, Christianity, Buddhism, Hinduism and Sikhism) as a noble act of selfless generosity, organ and tissue donation is described by the NRTC as the “ultimate humanitarian act of charity”.
Unfortunately, the gap between supply and demand for organ transplants is very wide everywhere in the world.
The shortage of organs can be clearly pictured by looking at the numbers of dialysis patients and those diagnosed with end-stage kidney failure in Malaysia.
“At the moment, we have about 2,600 new patients who are diagnosed with end-stage kidney failure each year.
“On top of that, we have already roughly more than 15,500 patients who are on dialysis programmes and more than half of them are actually suitable for kidney transplants,” Dr Lela said.
Due to the shortage, living donor organ transplantation is resorted to address the lack of cadaveric (deceased) organ donations.
Presently, most living donor organ transplantation for organs such as the kidney and the liver are done with living-related donors.
Living unrelated donors are only allowed when a patient (usually a child) is dying and there are no suitable cadaveric or living related donors available.
Even so, the living donor must undergo stringent evaluation to make sure that he/she is healthy and mentally prepared for the procedure.
More importantly, the donor must know exactly what the impact of surgery (psychologically, economically, and the impact on his/her family) is. Also, he needs to be given the right information to make sure that he/she is making the right decision.
Living unrelated donors have to be further evaluated by a panel of donor advocates (comprising of a medical doctor, a psychiatrist and a social worker) and an Unrelated Transplant Approval Committee (UTAC) (comprising of doctors from the Ministry of Health, universities and private sectors) will evaluate their report.
For Dr Lela, the need for living donors could be alleviated if more people expressed their wish to donate their organs upon death.
“There are already so many deaths in the country, especially on the roads.
“If more people were to pledge their organs and more families are willing to donate the organs of their deceased loved ones, we would not need to subject the living to the risks of surgery just for their need to help someone else,” Dr Lela explained.
Focus on cadaveric organ donation is also needed because while liver and kidneys might be able to be obtained from a living donor, we can’t take the heart, lungs and eyes from a living person.
“With cadaveric donation, a lot of people can benefit. For instance, one donor who donates two kidneys not only will benefit the two recipients, but also another two who gets places on the haemodialysis programme.
“That means four people with end-stage kidney failure can already benefit from the donation, and only more can benefit from other organs,” she illustrated.
One of the most common fear that people have is the misconception that doctors would not try as hard to save a person’s life once they knew that he/she is an organ donor.
“As doctors, our duty is to try our best to save the person right in front of us,” says Dr Lela, who reassured donors that only when a person is certified dead that the issue of organ donation would be brought up.
When Celine Yew pledged her organs in May this year, she realised that there are many people with health problems waiting for new organ transplants to continue their journey in life.
“If my organs can help them go on with their lives, why don’t I help them?” said Yew, who subsequently informed some of her family members about her wish.
Unlike Yew, a lot of our donors may not have brought up the issue with their family.
“What we practise here in Malaysia is expressed consent, which means the consent of the person who wants to donate after death is required either verbally or in written form (the card) for organ donation.
“Otherwise, we will ask the family for permission for the donation,” Dr Lela explained.
In some countries like Spain, Austria and Belgium, presumed consent is practised. In this system, the deceased are presumed to have given their consent for organ donation unless they expressed otherwise.
“Sometimes a family may object to organ donation because they did not know whether it was the deceased’s wish to do so. However, we will try to speak to the family to find out the reason they refused to give consent. If it is due to misconception and misinformation, we will try to correct that.”
Drawing from experience, Dr Lela observed that if someone had told his/her family about his wish to donate, most families would honour that request.
Unfortunately, most people don’t tell their family members, probably because they do not think or discuss about it, fearing that discussing death would tempt death, Dr Lela said.
Her advice is for everyone to think about what they want to do after death. After all, choosing whether or not to donate one’s organs is a person’s right.
“Deciding on one or the other does not make a person a better or lesser person.
“But people should think about (organ donation), get the right information and talk to their loved ones about their wish,” said Dr Lela, who went on to add that when organ donation is discussed openly, the fear associated with it will subside.
At times, when the deceased did not bring up the issue with their families, some family members gave their consent based on their knowledge of the deceased as someone who liked to give and decided that organ donation was the right thing to do.
Nonetheless, Dr Lela believes that given the right information about organ donation, a person will feel that it is only a natural and right thing to do.
Also, if one had informed their loved ones about their wish to donate their organs, it will make the decision-making process for organ donation easier for their relatives in the event of their passing.
A healing process
While in the past the need for organs has always been discussed in organ donation, the needs of the donor and the donor family have also come to the fore in organ donation today.
“I always believe that just like any human being, Malaysians are very caring people. Whenever there is a plea for donation or help, there will be some that will come forward.
“I have had donor families come to thank me for informing them about organ donation, while I should be the one thanking them. This may be because the donation itself had somehow helped them cope with the death of their loved ones,” Dr Lela said.
An optimist at heart, Dr Lela was inspired by the “altruism in the purest form” in donor families she had met.
“Witnessing a family who had given without expecting anything in return when they themselves had suffered a great loss is a positive and beautiful experience.”
Even though organ donation may not be for everyone due to whatever reasons, Dr Lela is convinced that organ donation also becomes a comfort for the family members as part of the healing process.
Of hopes and expectations
Although organ transplantation may promise a fresh start for the recipient, we must keep in mind that just like any other major surgery, it also has its risks and complications that may lead to failure.
“When we say that a transplant worked well, (sometimes) people will expect every one of the transplant patients will turn out well,” said Dr Lela.
“Nevertheless, we must remember that an (organ) transplant is a major surgery, but if they did not have the surgery, a majority of them would have died in a very short time.”
“If you consider the risks, the risk of not having (the transplant) is much worse and the success is still acceptable,” she stresses.
Some of the complications that may arise include the rejection of the transplanted organ and infection.
However, there is no reason for organ donors to be discouraged because every organ donation means a hope of life to the thousands of people waiting for organs to live on.
It helps to remember that in organ transplants, it is the hope that counts.