I read today Of a little girl Whose face was burned away. She cannot see, She cannot speak, Her hands are gone, She cannot eat. Unless someone helps her, She is alone. Her youthful mother Could not rescue the infant >From the flames of a shack fire. The pain, the shock, Was too much for her to bear. With the mother gone, Only nurses’ arms hold Dorah now.
But she can hear, She can think. What would she think of you and I, if we just leave her there to die?
– Bronwen Jones
Some four years ago I read about a little girl called Dorah Mokoena. I wrote a poem about the child that I imagined she was. A girl I cried for, even though we had never met.
That could have been the end of the story. But Dorah was in my mind and so, at a parents’ evening at my son Tristan’s school, I asked the other mothers and fathers if they would help me do something for the little girl.
They did nothing at all.
I was astonished at their lack of compassion and I suspect that it was their indifference that made me feel that it was even more important that I should not ignore Dorah’s plight.
I asked my son and his friend Thobeka if they would go with me to the Far East Rand hospital in Springs to visit Dorah. As they had never met anyone disabled, I wondered if it was the right thing to do.
We were all quite uncertain about how we would feel. I told the children all that I knew about Dorah and they selected their most treasured toys to give to her.
As I drove, their excessive chatter and my near total silence marked a mutual fear. We were afraid of how we would react, face to non-face with the anguish of a little girl.
The hospital was full of anticipated drab corridors and dull stairs but the children’s ward was colourful and bright.
As Dorah was lifted out of her cot, all waving arms and gurgles, Tristan and Thobeka stared open-mouthed at the small person metamorphosed into a problem by flame.
We sat on the floor and introduced ourselves by touch and name. Dorah took in the new voices and listened intently as the children demonstrated how the toys they had brought with them worked. It was a new experience for them to have to talk so much to a stranger because just pointing or saying “see” was not enough.
Thobeka seemed swamped by sadness for Dorah’s disabilities. She was lost for words when she needed to talk into the vastness of silence. Even afterwards she found it hard to articulate what she felt. But Dorah couldn’t see other people’s discomfort or distress. She was interested instead in the plastic CD player and its tinny reproduction of Christmas carols and light classics.
Tristan guided her toes to the numbered keys of the toy piano. Like learning Braille, he used Dorah’s big toe as if it were an index finger and rubbed it gently on the raised number 1, number 2, number 3, up the keyboard.
We sang the notes to her and Dorah sang too. The voice of a phoenix.
Dorah discovered the bell inside Tristan’s soft Humpty Dumpty doll that jingled when he shook, and a squeak and a crackle in his hat.
Most of all Dorah seemed to like the little German bear that played music and waved his arms when we pulled out a long string. He used to sing Tristan to sleep. Dorah, though, was wide awake. Her emotions showed in her expressive toes. Flexing, in time to the music. A sheer wriggle of pleasure.
The toddler sang along to a Schubert lullaby, but was unable to shape words with her teeth all askew, her gums pushed far beyond where they should be. Because Dorah had no lips. Lips that would help shape her face.
Where her nose should be was a triangular hole. And what was left of her lidless eyes was hidden behind an opaque protective veil.
Her whole home was a pink painted metal cot with a bright plastic ball, a couple of teddies and a few educational toys for companionship. Her neighbours, infants on drips, came and went. But Dorah was always there.
Other child patients visited her. Short- term friends, cheerily they called “Hello” as they limped past in green and white striped hospital pyjamas, on bandaged feet or with arms in slings. One look at Dorah and even those with black eyes inflicted by their own parents realised, comparatively, how much worse their troubles could have been.
We were told that her eyes could only tell night and day apart, but that they were unable to see colour or form. And yet, on our first meeting, it seemed to me that her eyes did follow movement as she turned and tilted her head towards different voices. I became more convinced of this on subsequent visits.
Dorah had been in hospital since October 1994. She had been brought in after being terribly burned in a shack fire in Botleng near Delmas. As the fire raged around the infant, something hot and heavy fell on her face. She had used her hands to try to push it away and they were burned off.
Over the following weeks, months, years, gradually the full picture emerged. But all we knew from our first visit was that a little lovable girl – who looked as hideous as any ghoul ever drawn in a story book – needed our friendship.
I felt strongly that Dorah the child was not being catered for by the hospital system. She had no regular friends and no family. Tristan, Thobeka and I talked about Dorah’s needs and we agreed to visit her regularly. By the second meeting, the children were bewildered to find that someone had stolen the CD player that they had given to Dorah. Gradually all their selflesslygiven gifts disappeared. We placed a notice on the wall in four languages: “Yilelikuphela ikhaya lika Dorah futhi yilezi izinto anazo … This is Dorah’s only home and these are all her possessions …”
The stomach clench of fear of our first visit quickly became just a memory. We looked forward to spending time with Dorah. The three children would sit on a blanket and play ball, Dorah turning her head from side to side like a spectator at a tennis match but catching the ball too.
Sometimes on a Saturday or Sunday it seemed such a schlep to drive all the way to Springs. Sometimes when money was tight, I worried about even covering the petrol costs. But the children and I were convinced that we were an important anchor in Dorah’s life and that, even if she was too young to understand a period of seven days, she knew that we were coming to visit her. If we did not turn up, we would have failed her like too many people had failed her before.
As time went on, I also came to realise that what I had thought was our kind gesture to Dorah was also of tremendous benefit to Tristan and Thobeka. They learned a thoughtfulness that few children so young ever have. They learned about the five senses and how to help Dorah to maximise the four-and-a-half that she had. We looked at what Dorah had and didn’t have and wondered why she did not walk. Tristan and Thobeka held her short arms over their shoulders and shuffled along the rough grass beneath the shade of the pine trees on their knees. They talked to Dorah, willing her to take her weight on her own perfect little feet.
And we discovered the unused slides and swings, rusting in the hospital grounds. Again the children took Dorah on their laps and allowed her to feel the rush of air, the pleasure of movement, as they slid down slides with her.
I saw so many other children in the wards on prolonged hospital stays and wondered why no one else took them out to play. In many hospitals I have seen groups of nurses sitting chatting for long periods with each other but I was always told that they were too busy to play with the patients. I suggested that they invite local teenagers in to play with children but was also told that that was too complicated to arrange.
As Dorah listened to planes passing overhead, to birdsong, to Tristan and Thobeka’s laughter, she seemed to change. Once we took our gentle old Labrador to meet her. I didn’t ask permission because I was convinced that the hospital administrators would say no. Dorah stroked the dog and was fascinated by this soft living creature totally alien to her world.
I tried to write for newspapers about the pleasure of helping a disabled girl to learn but no one would touch the articles. I contemplated how much healthier it would be for Dorah to be raised in a children’s home with able-bodied contemporaries, but officials thought I was mad to want to mix imperfect specimens with normal orphans.
Most of the time I assumed that the medical profession was doing its very best for Dorah and that it was none of my business to intervene. That is, until I was told that they were going to cut out her eyes.
They said she was blind. Blindness doesn’t necessarily mean no sight at all. But eye- less means not one familiar shadow; no faint glimmer of diurnal light patterns to set one’s body rhythms by. Eye-less means forever in the solitude of dark.
I was horrified. I knew that Dorah could see and that whatever level of vision she had was of great benefit to her.
The doctors insisted that the only way to help Dorah would have been to give her eyelids and this was impossible. Much, much later I learned that the prohibitive cost of her dressings – between R500 and R1 000 a month, depending on the supplier – had also influenced their decision. I wish that they had told me then.
I had a scientific background and my instinct was to preserve what Dorah had while research ploughed on and maybe found a solution. She was only three years old.
I decided that, in the short term, the pen might be mightier than the scalpel. That if I publicised Dorah’s story across the world, an answer had to be out there somewhere.
I wrote an article for a South African newspaper. The news editor was indecisive about publishing it and I said: “For God’s sake, you don’t have to pay me. Just print it!”
A small story appeared and I was turned from kind visitor into bte noir by Dorah’s key doctor for having “politicised” the issue of her future. He gave me a week to find a solution or they would operate anyway.
I was astonished to be handed such responsibility as I am not qualified in any appropriate field except common sense. Rather than question the legality of what he said, I accepted the challenge. I find in many cases the only way to get anything done, that there is a strong moral or practical reason to do, is to ignore rules that are long overdue for change.
I turned to the London Times, where I had previously worked for several years. In my heart I thought a story about a severely disabled foreign black child pauper had almost no chance of getting in. But I was glad to find that John Bryant was still deputy editor and he knew me well enough to understand that my plea for help was genuine.
Again and again, moving mountains came down to the relationships I had fostered with people in decades gone by. Eventually there was proof that if you are honourable in your dealings with people, they will be there when they are needed.
Dorah’s story took up a full page in the most influential broadsheet newspaper in Britain. At two hours’ notice I set up a charity bank account to go with the article. And over the days that followed the offers of help, the notes of sympathy and the donations, tiny or huge, poured in.
Dorah would not have been saved without e- mail. The Internet allowed people to communicate with me quickly and easily. Some perhaps would not have bothered if they had had to write by ordinary post.
I learned stories of other seemingly hopeless burns cases that had been solved. >From a little Albanian girl to a boy in Harlem in the United States, the case histories of success and, some, of failure arrived. The story of the Russian forester Jewgenij Sewerin, whose face was torn away by a bear but was rebuilt by surgery over nine years showed that the impossible was possible.
Victor Emmanuel, my one-time bank manager, was almost in tears as he and his staff dealt with the letters and the pledges. He telephoned as each milestone was reached. Within a couple of days we had 10 000, and the offers of help kept pouring in.
I sat back in joy and uncertainty, wondering how I should cope with taking Dorah to Britain for surgery and still be a good mother to my son. I looked again at the sparse information I had on Dorah’s mother and went in search of her in the massive squatter camps around Delmas.
By that time Dorah’s story was being covered on Sky TV in 42 countries across the world. They came with me on the day that I found Margaret Mokoena.
A skinny young woman, she was astonished at the parade of police, neighbours and camera crew that bore down on her shack. I went back several times later without the entourage to talk to her in detail and to try to work out a way ahead.
She had no other children and so it was possible for her to accompany her daughter to Britain for surgery. The Catholic mission Sizanani that Dorah had just been transferred to agreed that we should try to get the child returned to her mother’s custody. With mother and child reunited and Dorah starting to bond with the young stranger, I made plans to travel with them.
I thought we were going for six weeks, simply to try to rebuild eyelids and save Dorah’s sight. They ended up staying for 11 months.
After Richard Collin, a leading ophthalmic surgeon, took on the challenge of rebuilding Dorah’s eyelids, I learned more about the damage she had suffered and the possible solutions. It was only when we set off for Britain that I finally had full access to Dorah’s medical records. I now know that they were mostly inaccurate and that fills me with alarm for all the other South African children and families who never get to see their own records.
An Alberton doctor had described Dorah at three years old: “She has cerebral atrophy and cerebral palsy. Her legs are spastic; they are wasted, too thin for her size. They are not normal legs. She should have been able to learn to walk.”
He said: “Dorah’s eyes are doing her very little good. There are strong reasons to take Dorah’s eyes out. If we’re wrong, we’ll stand corrected. How many people are blind, can’t speak and battle to swallow firm things?”
One doctor who had promised co-operation if we took Dorah overseas was obstructive when it came to getting information that would have helped the British surgeons. Somewhere in South Africa there is still a full mask that was made of Dorah under general anaesthetic but I could not obtain it.
In the United Kingdom I gathered a hat-trick of the best plastic surgeons in one room to assess Dorah’s future. Two seemed to promise the earth but eventually did nothing at all; one, John Clarke, now the top plastics and burns surgeon at the Chelsea and Westminster Hospital rebuilt lips for Dorah and encouraged others to work on her right hand. He had given me a grilling about my motives and expectations and, throughout, maintained a gruff exterior, but carried out little and large acts of great kindness behind the scenes.
Rebuilding lips for a child who has none is terribly complicated. He first cut Dorah’s perfect back with four slits, gradually pulling up two tubes of skin described in the trade as “suitcase handles”. These were lengthened into one tube pedicle, like an overlong frankfurter down one side of Dorah’s back. Then this was cut off at its lower end and slung over her shoulder to be stitched on to her face. The off-the- shoulder number moved on to become the “chin strap” and then, with the lower lip in place, the “ring doughnut” grew on the side until an upper lip could be made.
At every stage Dorah looked like a total freak. Nothing could have prepared us for other people’s reaction to her. Much of the time I was back in South Africa but exchanging some 3E000 e-mails with Helen Manfield, a young woman who took Dorah and her mother into her home. Ten families helped care for the strange South African duo but they stayed with Manfield the longest. Eventually Manfield’s family relationships collapsed under the strain and she backed away from the charity, but her help was vital in the early stages of this long, unpredictable adventure in humanity.
While seeking medical solutions for Dorah was a massive challenge, trying to find an effective role for her mother often seemed the bigger task, but it was important to keep her at her daughter’s side. Margaret Mokoena was described inaccurately in the medical records as a 14-year-old with a drinking problem. In fact she was in her middle 20s, clearly intelligent but largely unschooled. Only now and then had she found work harvesting vegetables on Mpumalanga farms.
Dorah had 17 operations in that first year in the UK. She recently returned there for more surgery to her lips and eyes. A corneal graft to one eye failed but will be reattempted in three years’ time. Her right arm stump was opened into a flexible paddle to which a prosthesis can be attached to hold things. Her new lips were given a gutter so that hopefully 2000 might be her first year without bibs. Her future path is long, painful and expensive.
Dorah is now five years old. She can walk without help, communicate and eat solids. She reaches across the table to take a glass of milk if she is thirsty and says “Eat” when she is hungry. She can feed herself and is continent. Because her mouth cannot close fully, she cannot say the letter M. She has two names for her mother – one is “Yaggedy” – an approximation of “Margaret”. The other is “Gaga”, her word for a Mama who did come back.
Dorah and her mother now live in our home but will eventually have a home of their own. The child is mischievous and funny and very, very strange to look at. Tristan, Thobeka and I love her dearly. It takes courage to look beyond the proverbial skin- deep beauty to the loveliness of a little girl lost. Tristan said: “No one will ever marry Dorah. But she has a pretty heart.”
We miss them enormously while they are away, though Margaret Mokoena and I battle when she is here – it’s difficult for two women to share a house, and we are building an extension for the Mokoena family. Imagine Educating Rita, My Fair Lady (Pygmalion), The Elephant Man, the Helen Keller story and so much more all rolled into one. It is the hardest story to live in the middle of. People are horribly cruel and others astonishingly kind. I would not wish my life on anyone but through anger and most of all through love I will carry on fighting for Dorah and increasingly for other children, because as a society we are letting them down terribly.
The Constitution gives children a right to live. But who is giving them a right to quality of life?
Children of Fire, a charity to help burned children and try to prevent burns injuries, has been established. Telephone/fax: (011) 726-6529 weekdays 9am to noon or write to PO Box 1048, Auckland Park 2006. E-mail: firechildren@icon. co.za. Website: www.icon.co.za/~firechildren