When it's life or death: Family members donate livers to relatives despite risks
While the Human Organ Transplant Act is designed to reduce the waiting time for people who need a transplant, doctors say there are typically up to 50 patients looking for a suitable liver donor.
SINGAPORE: As she was being wheeled into an operating theatre at the National University Hospital, the last thing Ms Yvonne Chan heard was her five-year-old daughter crying out for her.
“Mummy, please come out again and see me,” the child said as she wept.
Ms Chan was also in tears and her heart crushed a little hearing the plea and her younger two-year-old daughter wailing. But she was resolute, and there was no question in her mind that she was going to go ahead with the surgery.
The 35-year-old engineer was about to donate part of her liver to her father, who had been given six to 12 months to live.
Speaking to Channel NewsAsia, Ms Chan said: “At the time I thought: ‘This is for my daddy, so I don’t think I can have any holding back to say I don’t want to.' It’s not out of gratitude. It’s because of the strong bond I have with him.”
That was in September 2017. Today, her father Casey is healthy and she holds close to her heart the pride of giving him the chance to be “reborn”.
While Ms Chan had every intention to donate her liver from the get-go, tests and discussions with her two older brothers meant that the operation was held nine months after her father was told he would need a liver transplant.
Two “black dots” had been detected on the surface of his liver, and while the doctors could not confirm that he had cancer, the cells were growing, and he was in urgent need of a transplant by the end of 2016.
“CAN I DROP OUT OR NOT?”
Despite that, Mr Chan’s first reaction was to ride it out and face death. While his children were willing to donate to him, Mr Chan was initially not in favour.
Mr Chan, who was at National University Hospital (NUH) on Dec 19 last year for a follow-up appointment with his daughter, said: “I told myself forget it, never mind. I don't want them to suffer, and my age is already catching up. If I receive this liver, how long can I live? 10 years? 20 years?”
But he realised he could not stop his children. His second son William lost 20kg in three months so he could be a suitable donor, and his daughter had done all the tests that showed she was suitable. In the end, Ms Chan did the donation as her liver would fit into her father's body better.
Mr Chan had niggling doubts over whether to do it up until the last minute. Ms Chan was already in the operating theatre being prepared for the transplant. Outside, Mr Chan asked his son-in-law: “Can I drop out or not?”
But it was too late for that. They went ahead. A successful transplant later, Ms Chan wears her scar from the surgery as proudly as a badge.
“I am proud to show everyone that I have this scar, because to me it represents my dad. It’s as if he’s with me all the time. We are two in one now,” she said.
However, there were some who expressed doubts. Her husband asked her “Why you?” while others said she was a selfish mother and wife. These did not stop Ms Chan, and she managed to convince them. It was with the full support of her husband and family that the operation happened.
NOT WANTING THE YOUNGER GENERATION TO BE BURDENED
Mr Chan’s hesitation in getting a donation from his children is not uncommon, doctors from the Liver Transplantation Programme at the NUH told Channel NewsAsia.
“The elderly often have this feeling that they shouldn't burden the younger generation, which is why they refuse,” said the programme’s medical director Dr Lee Guan Huei.
It is not that children do not want to come forward, but the patient or their family so do not want them to take the risk, he said. This is not ideal, he added, giving the examples of countries like South Korea and Taiwan where liver donation among family members is socially acceptable and natural.
In fact, Singapore has a long way to go for liver donation, whether from living or deceased donors, he said.
Despite having the progressive Human Organ Transplant Act (HOTA) in place to encourage people to donate their organs when they die, the number of deceased donors is low, Dr Lee said.
Under the law, someone's organs can be donated when they die unless they opt out. However, this does not always happen. A typical scenario is one in which someone dies without discussing their preferences with relatives. The family does not know what the deceased wants and is likely to come up with reasons not to donate.
“No matter what the law says about the State owning the rights to use organs from people who have not opted out, it’s hard to push in such situations,” he said. He explained that families will be emotional, and the subject is not easy to broach.
He urged the public to discuss death and organ donation with family, as one person can collectively add 70 years of life to others. Organs that can be donated include liver, lungs and heart. He said that even if the deceased had certain diseases like diabetes and hypertension while living, if their organs are working, they can still donate them.
40 TO 50 PATIENTS ON WAITING LIST AT ANY ONE TIME
Liver transplantation is needed in a few situations. For children, it could be due to developmental problems and in these cases, the parents would offer their organ without hesitation, the doctors said. Reasons for adults to need liver transplantation include organ failure caused by cancer or metabolic diseases, sudden liver failure, and drug intoxication.
At any one time, there are 40 to 50 patients on the waiting list, an increase from the “20 or so” in 1997 when the transplantation programme started, Dr Lee said.
The wait for a liver can take anywhere between four months to four years, depending on how high a patient is on the list in terms of priority. This is measured medically on how likely he is to survive in the next three months. The sicker the patient, the higher the priority.
A small proportion of people die while waiting for a liver transplant, while a few people get so much better with treatment that they are taken off the list, Dr Lee added.
Since the National University Centre for Organ Transplantation (NUCOT) started performing liver transplants in 1997, it has completed a total of about 400 child and adult procedures. The one-year success rate is more than 90 per cent, while the five-year success rate is about 80 per cent, said surgical director for liver transplantation Dr Shridhar Iyer.
KNOWING WHAT TO EXPECT AS A LIVER DONOR
Some people underestimate the commitment needed for a liver donation, and think it is just like donating blood, Dr Shridhar said. However, liver donation requires far more commitment, he said. There are stringent protocols surrounding transplants, which include a battery of tests and being interviewed by an ethics committee, he explained.
Donors will also have to be off work or school for six to eight weeks while they recover from surgery.
Dr Shridhar said that a common situation in which people are moved to volunteer themselves, but may not be armed with the relevant information to lead to a fruitful outcome is a social media appeal.
When that happens, about 70 people may come forward at one go. While it is a good thing, it could also cause strain to the system as no one is turned down and everyone is tested. Many a time, potential donors are shocked by the information they receive, deciding not to move forward with the process after being tested.
For example, they are surprised to find out that donating to an adult would mean donating 60 to 70 per cent of their liver. This comes as a discouraging piece of news to them even with the knowledge that the liver will regenerate, he said.
“Sometimes it is hard to explain to them why not take 50 per cent? It's not like you're going to a shop and taking half a kilo of rice. It is more of where the cutting line is drawn,” he said, adding that potential donors are concerned about giving more than what remains.
Risks are also clearly communicated to potential donors. There is a 0.5 per cent risk of death and 15 to 20 per cent risk of complications wordwide.
While he would like more people to come forward to donate their liver, Dr Shridhar said that it is best when they are fully aware of the commitment and risks involved.
For Ms Chan, the risks meant little in her dogged determination to give her father a new lease of life.
She had these words for anyone who would like to donate their liver.
“If you think this is the right thing to do, don’t question yourself, because you’re doing something good. Just be proud of yourself, step forward, do what your heart tells you.”