“He’s braindead, there’s nothing you can do, and you must start considering organ donation.”
This is what Anzel Schoeman was told by her sister while they were flying back to South Africa.
In 2005, they were on holiday in Egypt. As she was leaving a museum in Cairo, she was told to phone her father urgently. Tranquility turned to trauma. Her husband Nico Theron had been in a motorbike accident; Schoeman took the first flight home.
At the Pretoria East Hospital, Schoeman was with the doctors when they performed a series of tests to determine whether he was brain-dead or not.
“It’s traumatic to see this but it was then I realized this is just a body lying here; the brain is not operating, it’s a machine pumping air into the body,” says Schoeman.
With this realization, Schoeman had no hesitation in agreeing to donate Theron’s organs.
“Just before I left, we had discussed the subject because my sister was a doctor. For me, it wasn’t such a struggle to make the decision, [I didn’t have to wonder] ‘would he have wanted this?’ ” she says.
When a person dies, their heart, lungs, pancreas, kidney and liver can be used to save up to seven lives, according to the Organ Donor Foundation of South Africa (ODF). In addition to that, up to 50 people can be helped with tissue donation. The eye’s corneas, skin, bone, tendons and heart valves are used for this.
Schoeman agreed to donate most of Theron’s organs, but the doctors couldn’t use his lungs because of the scar tissue that formed during the trauma. The organs need to be harvested as quickly as possible to increase their effectiveness during the transplant process. Amid the trauma, and with little time to come to terms with what had happened, Schoeman made a sentimental decision.
“At that stage, I didn’t want to give his corneas because he had the most beautiful light blue eyes. I just couldn’t get over myself to say yes for the eyes.”
Unfortunately, that legacy is not being lived up to today.
“We have one of the lowest donor per million population rates; we have 1.8 donors per million population,” says Samantha Nicholls, the Executive Director of ODF.
“There is a critical shortage of organ donors in South Africa. Currently over 4,300 adults and children are awaiting a life-saving transplant and less than 600 transplants are performed annually. Many patients can wait years for a transplant and many die waiting as a result of this shortage,” she says.
There are a few reasons for this shortage, says Nicholls. These include a lack of awareness, religious and cultural misconceptions, and a lack of urgency.
“People do not realize the great need and do not want to think about their own death and the gift they could give through their death. They think it will never happen to them, some think organ donation is unnecessary because they are fit and well, and they do not consider those who are affected by organ failure,” says Nicholls.
Two women who are acutely aware of South Africa’s dire need for more organ donors are Annette Otto and Lizette Cooke. As Procurement Co-ordinators – for healthcare company Netcare – they work with organ donors every day.
They need to assess the patient to see if they are a possible candidate. They then need to talk to the patient’s family to see if they would like to donate. If the family agrees, the procurement co-ordinators do assessments, such as blood tests and x-rays, to determine the functionality of the organs. Once all this is done, they need to refer with everyone else involved in the process to decide who’s going to use what.
It’s a long and emotional process.
“It’s a body lying on a bed on machines and there’s a heartbeat and all the organ functions are there. It looks like this person is sleeping and you have to go and convince the family that this person is dead. Only when they understand that he’s dead can you talk to them about organ donation, otherwise they think you’re going to kill him to get his organs,” says Otto.
The World Trade Organization estimates that 5% to 10% of organ transplants around the globe are done so illegally. In South Africa, between 2001 and 2003, 109 illegal kidney transplants took place at St Augustine’s hospital in Durban.
An Israeli organ-broking syndicate allegedly brought paying Israeli citizens in to South Africa, where they would receive a kidney from willing sellers for $120,000.
“I’m not aware of any incidents of illicit trade… It’s difficult to police, these things can happen. What we can’t account for is illicit trade in human organs for uses other than transplantation; for medicinal uses in the communities, for body parts being stolen from mortuaries. That I’m sure happens. But from a transplant perspective, we have organ registers of what transplantation happens around the country and we look out for this type of thing,” says Professor Jerome Loveland, the Head of Paediatric Surgery at Chris Hani Baragwanath Hospital, in Soweto, and the President of the South African Transplantation Society.
To help prevent trafficking, two independent doctors have to verify that a person is dead before organs can be harvested. Schoeman took part in this process when her husband died.
“Before this, his hands would twitch and I’d call the doctors and tell them. But they said, ‘No, the brain is trying to send impulses to the body but nothing is happening’,” says Schoeman.
“There are various tests they do. One of them is called the doll’s eye where they keep the eyes open and move the head from side to side. If there’s brain function, your eyes will try to focus on something as they turn the head, and there was nothing. The other one is they prick them with needles on their knees and underneath their feet and watch whether they flinch. Another one is taking them off the oxygen and see if they want to inhale. These things are instinct, you can’t control them,” she says.
Otto’s first case was helping Schoeman through the process of organ donation.
“Annette and them came and explained the benefits of organ donation. They don’t switch off the machines because they want the organs. They’re not like vultures sitting there waiting. They keep you calm and updated,” says Schoeman.
It can be a delicate process.
“The family has to have time to absorb everything you tell them. You can’t give them all the information and then say you need a decision. You have to step back and let them do what they need to do,” says Cooke.
“We help them make a decision, at a difficult time, that is right for the family. Organ donation is not always the right decisions for a family, especially with different cultures,” adds Otto.
“I was dealing with two young men who lost their sister and they knew about organ donation but one of them said we have a problem because he had to speak to the elders. He said I know my sister would have wanted to donate organs but when I speak to the elders they’re not going to understand this. So he had to decide whether he continues and doesn’t tell the elders, or is he going to talk to the elders,” says Otto.
“The younger generation is open to organ donation but the older generation isn’t. If he had gone ahead with the donations he could be extricated from the community,” says Cooke.
Although Otto and Cooke’s job is to find organs that could save someone else’s life, there is an ethical line they can’t cross.
“I had boys who wanted to donate organs but they hadn’t included their grandmother, who raised them, in the decision. They said she would say no but I had to tell them to speak to her. She needed to be part of the decision,” says Otto.
“It’s the same if someone says they only want to donate kidneys, you can’t use the rest of the organs. One girl said we can’t use her dad’s eyes or his heart. She said he looked at me with his eyes and he loved me with his heart. The other organs we could have but the eyes and heart were emotional to her.”
It’s not only an emotional time for donors. Thousands of people in South Africa are anxiously waiting for an organ.
“I’ve also been with people who are on the list waiting for organs… They sit and wait for somebody to die. For them to mentally get past this [guilt] of wanting somebody to die so they can live – I tell them it’s ok to ask, because it’s ok for us who are left behind,” says Schoeman, who works as a volunteer for ODF.
Being on this list doesn’t guarantee you’ll get an organ.
“The first thing you have to take into account is blood group compatibility. The next question is who is the sickest patient on the list. It is tailored by the size of the organ, so the height and weight of the donor come into the decision-making process. You can’t put an adult’s liver into a five-year-old. Last Saturday, the sickest patient was a 19-year-old woman with an auto-immune disease and she got the liver. However, access to a transplant unit is different. If you’re living outside an urban area, and the same applies if you’re not on a medical aid, your access to a transplant center is not as easy,” says Loveland.
Loveland often has to travel with the organs on a commercial plane as they are transported from the donor in one city to the recipient in another. He keeps the organ in a cooler box on his lap during the flight.
“They need to be kept cold. When we harvest organs, we instill a cold preservative fluid into the organs to preserve them and bring down the metabolic rate. It allows us an opportunity to keep the organ out of the body but that time is very limited. For a kidney, you’ve 24 hours as your cut-off but for a liver you’re looking at eight hours. The sooner we can get them where they need to be the better,” he says.
In many cases in South Africa, those that need organs don’t get them.
“If a patient dies while waiting for an organ it is devastating. It’s part of the reality; you’re working with death all the time,” says Cooke.
Cassie Walkers, a former policeman, was fortunate enough to get a kidney from his daughter, Philna, in October 2016. Emotion floods through him as he talks about having to take an organ from his child.
“It’s a big thing; but I had to decide [between taking my daughter’s kidney or] to go on like that and die within two or three years, you can’t go on dialysis forever… I knew my chances weren’t good, to get an organ with the right blood type and at my age, there was almost no chance,” says Walkers.
Walkers has polycystic kidneys. He says when the doctors removed his kidney it was as big as an ostrich egg and weighed 14kg.
“I was in hospital for three weeks to take the kidney out,” he says. He creates a rugby ball sized shape with his hands to show the hole they had to cut in his abdomen.
“They had to take it out in pieces.”
His life has changed dramatically since the transplant.
“It’s unbelievable. I’m living again. Within the next three or four weeks I’m going to play golf again… I haven’t played for 10 years because I wasn’t able to hold a club,” he says.
Because it was his daughter, Walkers knows who he got his kidney from. Donors that aren’t family need to be kept anonymous.
“An organ donor and their family have just made a massive decision and they need to be alone in that. You don’t need seven, eight or nine families harassing them, even if it’s to say thank you. Also, it’s up to us medical practitioners to decide what organs are suitable to use and how to use them. It’s not for the patient to then go and say ‘I’m 23, why did you put a 44-year-old’s liver into me?’ ” says Loveland.
Accidentally, Schoeman has met one of the recipients of Theron’s organs. She gave a speech at a tribute day attended by families of donors and recipients. She told her story and mentioned the date of Theron’s death, which triggered the curiosity of a particular family.
“This lady came up to me. I could see she was very nervous. She was asking me questions about my husband and eventually I said ‘ma’am, what do you want to ask me?’ She kept quiet and her husband was standing next to her and then she said, ‘you know what, my husband has your husband’s kidney’. The tears just started flowing and eventually his two sons came to me and just stood there; they couldn’t talk to me. The one eventually said ‘I’m a lawyer, I know how to use words, that’s my business, but the only words I can say to you is thank you because my dad is still alive’,” says Schoeman.
While talking to FORBES WOMAN AFRICA about this, tears start streaming down her cheeks.
“For me, it was nice to meet them and see this person doing well. There was nothing like me seeing something of me, or my husband, in this person. There was no such feeling. I was just so overjoyed that this father still had their father and grandfather.”
She says after Theron’s organs were harvested and the recipients were prepared, her own process of healing started and it helped to know she had helped someone else.
“I had this peace of mind to give. By giving you’re helping so many others.”
As Walkers finally walks on a golf course again, he will understand this more than most.