Social work manager

Mitta Lebaka

Five minutes after I call her to introduce myself and arrange a time to meet, Mitta Lebaka phones me back to suggest that instead of meeting at the Children of Fire charity, where she works, I come to her home in Dobsonville. So we meet at the metaphorical scene of the crime: the home where a child’s desire to warm her hands turned into a tragic accident in a matter of minutes and changed her life irrevocably. Her request brings partial relief. Knowing I was going to be interviewing a burn survivor, possibly at a school surrounded by children who are all burn survivors, caused a level of discomfort and anxiety. As I dress for our interview, my own shallow vanity battles my curiosity about how burn survivors, especially women, navigate a society obsessed with beauty. As I apply eyeliner, mascara and lip gloss, I send a prayer to heaven: “Dear Lord, please don’t let me stare, or worse, allow pity to drip off every word. Amen.”

No prayer or mantra could prepare me for meeting Lebaka. Not because of the scars that cover her décolletage and snake up to her chin, or the slight stoop that seems to accommodate the skin tightened and contracted by third-degree burns. At just 22 Lebaka is a combination of youthful exuberance and a gravitas forged by tragic circumstances. Dressed in a camel-coloured sundress and lime-green cardigan, with a diamanté headband holding back her hair, Lebaka greets me at the gate along with her mother, Gloria, and brother, Thabiso, before leading me into the dining room of her family’s modest home.

In August 1998 Lebaka, then eight years old, switched on the kitchen stove to warm her hands. The synthetic jersey she was wearing caught alight and, as she struggled to take it off, the rest of her clothing ignited, leaving her with third-degree burns over her torso, neck and chin.

But it is not her own burns or scars that dominate the conversation when we sit down to talk. A social worker manager at Children of Fire, the first and only charity in Africa dedicated to child burn survivors, she is neither a victim nor the object of pity I had dreaded prior to meeting her.

Self-assured, eloquent and, thanks to her work at Children of Fire, extremely well travelled, Lebaka springs straight into the work of the charity and a recent trip she took to Goma, in the Democratic Republic of the Congo, to assist a 10-month-old burn victim called Agnes.

“Children of Fire gets emails from all over the world asking us what to do with children who have been burnt. From the picture of Agnes they sent us we could see it was an urgent case. I wasn’t asked if I wanted to go, I was told: ‘You’re going to Goma, then Amsterdam, then Boston.’ As a burn survivor it made sense that I should help. I was overwhelmed, but I knew I had to be in it 100%.”

From Johannesburg, Lebaka undertook an arduous journey to Goma, then to Kigali in Rwanda to secure a visa for the United States, then to Amsterdam, and finally to Boston, where baby Agnes was admitted to Shriners Hospital for Children, one of the world’s leading centres for paediatric burncare.

But not before enduring a five-hour negotiation with the child’s family, who, despite being desperate for assistance, were reluctant to relinquish their severely injured infant to strangers.

“I assumed we’d get there, pick up the baby and drive to Kigali, but I had to sit for five hours and talk to the family. People in Goma have been promised so much and nothing has been delivered, so no one trusts your intentions. And the family did not know how they could trust us to take their baby to America,” says Lebaka.

Even after securing their permission, as they were about to depart the following morning the baby’s grandmother refused to hand over the child’s passport, prompting another round of negotiations, this time with local chiefs and male elders. By the time they had satisfied all concerned that baby Agnes would be in good hands, their visa appointment had been imperilled by the long delay. “That is when I realised the power of Facebook and Twitter,” says Lebaka.

Recognising that there was a risk that they would not secure visas, her colleague and founding director of Children of Fire, Brownen Jones, turned to social media to alert those assisting them in Kigali to the delay. Jones managed to contact Dr Josh Ruxin, founder and director of the Access Project in Rwanda, who is based in Kigali and had been assisting them with the logistics. Ruxin was able to alert the US consulate to the delay.

In the midst of tense negotiations taking place in the squalor of Goma, Lebaka’s primary concern was for Agnes.

“Pictures are deceiving, because I do not know how she had survived. She was underweight, her dressing had not been changed for a week, and it was extremely hot in Goma. My first task after meeting her was to change the dressing. It was hard for Agnes. She had lost her eyelids, but, amazingly, she could still see. After I changed her dressing she associated me with pain. And when I put the tear gel in her eyes for the first time I’ll never forget the giggle she made. For the longest time she had had no relief. It was a life-changing moment for me.”

If Agnes left an indelible mark on Lebaka, Lebaka left an indelible impression on Ruxin, who is assistant clinical professor of public health at New York’s Columbia University.

“I meet a lot of exceptional people — talented intellectually and in other ways — in Rwanda. Rwanda has this funny habit of attracting the best of the best. So, among the best of the best, I found Mitta, frankly better than the rest,” wrote Ruxin in a recent email interview.

“The first thing that struck me on meeting her was: ‘She’s a burn survivor herself, she’s giving back and turning her experience into something extraordinary.’ But then as I started working with her I realised that being a burn survivor provided inadequate explanation for who she is and how skilled she is.

“She went into one of the toughest countries on Earth, without wincing, and spent two days helping a family frightened by sorcery and mysticism come to terms with giving baby Agnes a chance in the US. That’s something that’s tough for anyone with decades of experience; for someone as young as Mitta it’s actually just unheard of,” wrote Ruxin.

This strength of character and determination to survive despite the odds predates her birth, says Lebaka’s mother, Gloria. Lebaka was born three months premature after her mother took a nasty fall six months into her pregnancy.

Lebaka’s burns might have been less severe had it not been for her independence, says her mother. “She’s been independent since childhood. The day she got burnt, she woke up really early, at around 5.30am. She tried to kill the fire herself and didn’t want to wake anyone. So she got badly burnt.”

Lebaka remembers little of the day she was burnt, except the fire and her mother’s panic and then nothing. She woke up in Leratong Hospital and did not see herself for three months after the accident.

“When I saw myself for the first time, I could not believe it. And I felt angry that my family had not told me. But people see things differently. And from a family’s point of view, they can’t tell you: ‘It’s awful, you look ugly’.”

Lebaka is the second of Gloria’s children to have suffered severe burns. Two years prior to her accident her older sister, Sake, had an epileptic fit, knocked a boiling kettle off a stove and suffered third-degree burns all over her body.

Lebaka’s effervescent personality and personal mantra that “all you need is compassion and common sense” give no hint of the tragedy that has befallen her family. She lost her two older sisters, Sake and Naledi, within three months in 2008.

Jones, the Children of Fire founder, who first met Lebaka when she was a schoolgirl at Fort Hare High School in Dobsonville, attributes her resilience and courage to Gloria. “The person who made Mitta who she is is her mother. She had a tough start and a tragic accident, but her attitude has always been: ‘What’s the point of whingeing about it? Let me do more than the best I can.’ And that is all due to her mother.”

Lebaka acknowledges her family as the bedrock of her support and her mother’s role in helping her come to terms with the accident and the scars she’ll bear for the rest of her life. After spending three months in hospital in 1998, she returned to school in January 1999. Despite all her objections, her mother remained uncompromising that not only would she go to school, she would also go without a scarf to cover her scars.

A year after the accident Lebaka had major neck surgery, during which skin from her legs was grafted on to her neck. She also underwent breast reconstruction. “I made a choice not to do more. Now it’s not about aesthetics anymore, it’s about function. I’m comfortable and I’m fine with me.”

All children and adult burn survivors inevitably run the gauntlet of pitying looks and well-meaning but misguided strangers.

“When I was a kid, people always wanted to give me sweets. They wouldn’t want their own children to eat too many sweets, but they assume that children who are burn survivors deserve pity. All this attitude does is rob children of their independence.”

A refusal to be the object of pity is a trait displayed by many of the children at Children of Fire, says Lebaka. Most children who have burn accidents are under-fours because they are still exploring their world, she says. Poverty and cramped living conditions make toddlers especially vulnerable as they are exposed to open flames, boiling pots and primus stoves. Around 15000 children are severely burned in South Africa every year.

At any given time, the centre houses between six and 40 children going through surgery, occupational therapy and physiotherapy. To date, the centre has helped 350 child burn survivors from all over Africa. The children it has assisted on the continent include a girl burnt in an acid attack in Gabon, a boy burnt in a rebel attack in Sudan, a girl burnt in a stove explosion in Tunisia and innumerable other children burnt by open fires, in shack fires and in car accidents, or by exploding paraffin lamps, hot polish and some through attacks by parents. Baby Agnes was scalded by boiling water.

Not all children survive. Baby Agnes did not make it, despite the best efforts of Lebaka, Jones, Ruxin and the team at Shriners.

“Baby Agnes succumbed to complications of surgery,” Ruxton wrote by email. “It was a horrible tragedy, but one that brought Mitta in touch with so many, myself included. Mitta’s presence, confidence and compassion provide a very, very high bar for the rest of us. But it’s one that somehow seems obtainable because what she does she does without pretence or ego. She simply does what’s right, and that’s a rare thing today.”

As I prepare to drive away from the “scene of the crime”, I ask Gloria about her daughter’s name and what it means. She smiles, and says: “Mitta’s name is Dimakatso, which, in Sesotho, means ‘miracles’ and here she is: my child of miracles.”

— Gail Smith