WE CAN SAVE MANY LIVES
Kgaogelo Masipa aims to encourage the black community to become organ donors after she lost her daughter to a heart condition – now her son is sick too
THE pain is etched on her face and it’s clear she’s consumed with grief. Her hands are clenched into fists and pressing into her knees as she tries to bring her emotions under control. But it’s no easy task because she’s faced with a situation no mother wants to find herself in: she might lose another child if a heart donor can’t be found.
Kgaogelo Masipa could barely stomach the loss of her beautiful Reshoketswe, who died just a month shy of her sixth birthday in 2009. But now she could face the same earth-shattering pain again – unless her son, Tumisho (3), gets a heart transplant soon.
Like his late sister, Tumisho has been diagnosed with a heart condition and has a large hole in this vital organ.
“I read in the Bible that calamity does not strike twice,” 34-year-old Kgaogelo says. “That’s what I’m hoping for. That’s what my husband is hoping for.’’
Reshoketswe, whose name means “the Lord has been merciful”, died from a rare heart disease called dilated cardiomyopathy (DCM), which caused her heart to be bigger than normal and interfered with its ability to pump blood as it should.
Now Tumisho, the youngest child of Kgaogelo and her husband, David, from Kwaggasrand in Pretoria West, could face a similar fate. The couple also have an older daughter, Phenyo (10).
Kgaogelo wants to change the way black people in particular think about organ donation, she tells us when we meet her at the offices in Brooklyn, Pretoria, where she works as a receptionist.
Her voice is choked when she starts to explain her situation and she has to clear her throat before she can speak.
“Tumisho is doing okay. We have a few challenges here and there. I don’t know where we’d be if we hadn’t joined a support group after our daughter passed away.”
After Reshoketswe’s death, Kgaogelo asked doctors if she could donate the little girl’s organs but was told it wasn’t possible because all her organs had shut down.
“We wanted to donate her organs and save lives because we knew there were other children like her who needed organ transplants. When I was told it was too late to donate her organs I decided to be an ambassador for the Organ Donor Foundation (ODF).”
KGAOGELO and David first realised all wasn’t well with Reshoketswe when she was just three years old. She was admitted to Mediclinic Medforum Hospital in Pretoria and doctors thought she had bronchial pneumonia.
“We took her out of crèche because she was sick and short [of] breathe. We didn’t want her to mix with other children at the crèche because we thought she was going to make other kids sick as well.”
The anxious parents took their daughter to a paediatrician who suggested they consult all kinds of specialists, including a cardiologist and dietician.
Kgaogelo took Reshoketswe to Mediclinic Heart Hospital in Pretoria three times to see cardiologists.
“They told us there was something [wrong]with the rhythm of the heart and they put her on medication and supplements to find out what the problem was. Doctors told me there was fluid around her heart that needed to be drained,” she says.
When Reshoketswe was five her parents were told she’d developed dilated cardiomyopathy. “When specialists told
us my daughter needed a heart transplant, I knew nothing about the Organ Donor Foundation and organ transplants. It was the first time I’d heard of something called a heart transplant.”
This is why she’s determined to spread the word. “In our communities we don’t know such things – we don’t even know who Professor Christiaan Barnard was,” she says tearfully of the doctor who made world history with the first human-to-human heart transplant at Groote Schuur Hospital in Cape Town in 1967.
After being told her daughter needed a heart transplant, she started doing research and came across the Organ Donor Foundation.
“I started talking to my husband, mother, brother and relatives about organ donation and we decided to register. After that we went to the community and started talking to them about donating organs,” Kgaogelo says.
But Reshoketswe never found her donor. “She was on a life-support machine when she passed on. There was a group of doctors around the bed. An ICU nurse came out of the ward and asked if we could take a walk.
“We walked out and she took my hand and told me my child was tired and doctors were trying to resuscitate her but she was slipping away.”
THE government hasn’t done enough to teach people about organ donation, Kgaogelo believes.
But African culture expert Professor Jabulani Maphalala of the Commission on Traditional Leadership Disputes and Claims says the truth is many black people are unwilling to donate their organs. Many cultures believe a person should be buried “whole” in order for the ancestors to accept them.
“Donating blood isn’t a problem to some because they don’t bleed you dry and take all your blood,” he says. “The problem comes when people have to donate hearts, lungs, kidneys and eyes.
“In our culture, we believe a person is not dead but has crossed over to another world to be with his or her ancestors. After a loved one has departed we have what we call uhlambo (cleansing) to accept that he or she is gone to be with the ancestors.”
Maphalala says if a person isn’t accepted by the ancestors after death, the family they leave behind will be cursed. “There must be a good explanation why people must donate organs or else people living in rural and urban areas will be reluctant to.
“If organ donation becomes part of the school curriculum and it’s explained why people must donate, maybe that could change the minds and perceptions. A person who went to a model C or private school might know what organ donation is, but for the rest of the people it’s wrong – culturally wrong,” he adds.
There’s a crucial need for donors. The ODF says there are more than 43 000 adults and children on the waiting list and fewer than 600 transplants are performed each year in SA.
Netcare says about 500 patients receive transplants at its hospitals every year. But at any given time, more than 2 000 people are awaiting various transplants, including heart, lung, liver, pancreas and cornea.
If just one percent of the South African population were to register as organ and tissue donors, this would translate to roughly 500 000 people who could save lives.
And Kgaogelo is determined to grow that number, one way or another. “We – my husband, my mother and I – go around talking to people and parents who have children with heart problems and need transplants,” she explains.
“My aim is not to share the story to make people feel sorry for us but to create awareness that if people donate organs it can make a difference to other people’s lives.”
To register as an organ donor or to join the volunteer network, go to odf. org.za, call 0800-226-611 or e-mail marilyn@odf.org.za