Dorah, May 2011 with volunteer

Dorah was decidedly grubby after playing in the garden, September 2006.

Dorah had a tissue expander in her scalp in late 2009 which was removed ten days after it leaked. Topical antibiotics on the stitches after bandage kept falling off. The cut on her cheek must have been a mistake during surgery.

Dorah Mokoena will be 10 years old on April 12^th 2004. This little South African girl was severely burned in a squatter camp fire at the age of six months. She was turned away from three hospitals which were convinced she would die.

Because of the severity of the fire and because of the delay in getting appropriate treatment, Dorah lost her nose, eyelids, lips, bone in her forehead and hands. Her ears are deformed. She has a badly scarred chest that will develop unevenly during puberty. Much of the rest of her body has been damaged by trying to repair other parts.

Her biological mother Margaret abandoned her for more than three years but was reunited with her daughter for some two years, following strenuous endeavours by trustee Bronwen Jones and her family and, later, a lot of support in Britain. Margaret abandoned her daughter again upon their return to South Africa in 2000.

Dorah’s early years were spent almost entirely cot-bound. Nonetheless she had several friends who visited her regularly: a young boy Tristan, his mother, and his friend Thobeka. They tried to ensure that Dorah knew the pleasure of childhood friends.

In December 1997 the doctors charged with Dorah's wellbeing intended to remove her eyes, because they said she was blind. And because the dressings used to protect them were deemed too expensive. This decision - and the ability of caring individuals to overturn the decision and to save Dorah's eyesight, led to an appeal published in The Times (UK). The formation of the Dorah Mokoena Charitable Trust in the United Kingdom and the Children of Fire Trust in South Africa followed as a result of the response of the public to Dorah's plight. Later the British charity evolved into Children of Fire International.

The charities assist each other to provide medical treatment, therapy and education for Dorah and other child victims of burns injury and disability within Africa; proactively try to prevent burn injuries through education of Southern African communities; and inform people how to seek the swiftest and best-possible medical treatment for children who are burned.

Dorah’s lips were made by John Clarke, a reconstructive surgeon at Chelsea and Westminster Hospital, London, UK, and previously at Roehampton. They are not flexible but they allow her to eat solid food, for her teeth to grow properly and allow her to speak a little.

David Martin at the same hospital, opened one “hand” out of her right arm stump. Richard Collin at Moorfields Eye Hospital in London, gave Dorah “eyelids” that cover and preserve her eyes. David Gartry attempted a corneal graft at Moorfields Hospital. Colin Haylock of Charing Cross Hospital makes Dorah’s best prosthetic noses.

Simon Kay and colleagues at St James’ Hospital in Leeds will hopefully try to create a thumb for Dorah. This might be done by creating a forearm radial flap, where a cut is made into her right “hand” to make a cleft between the lowest thumb bone and the rest of the “hand”. The cut would be lined with a flap of live skin, veins and all, from her forearm and might make a short mitten-like hand.

If the process is deemed impossible, the alternative would be to cut a toe off from her perfect feet and transplant it onto the “hand”.

The odds are stacked against various procedures succeeding, particularly because the medical profession largely believe that Dorah cannot learn to use a digit if she cannot see it. But the odds have always been stacked against Dorah. She survived despite being on “managed care” (i.e. die gently). She learned to walk despite her South African medical team writing: “This child’s legs are palsied, wasted. She will never walk.”

With inflexible lips, a very late start and even some damage to her hearing, she can nonetheless talk a little.

So we hope, regardless of the odds, that Dorah will get a working thumb that will allow her some independence and some privacy that will otherwise be denied to her for the rest of her life.

Education and personality

Prejudice is the biggest obstacle to Dorah learning. This is more extreme in Africa than in the more affluent parts of the world, but everywhere it is a problem. South Africa’s Department of Education, particularly in Dorah’s now home-province of Gauteng, treats her as a problem that the department wishes would go away.

Officials are offered information on delayed development through prolonged hospitalisation; the physical effects of major burns on development; the loss of hearing due to excessive hospital use of antibiotics after severe injury; the manner in which effectively-blind children can learn; and our accumulated wisdom on multiple disability; and more. Their “solution” in December 2002 and again, when they revisited the topic following media pressure in March 2004, is to dump Dorah in an overcrowded institute for severely mentally disabled children. We have refused this option and Constitutional Court action against the government will procede.

Part of the problem is political and that maybe is the hardest factor to overcome in a fledgling democracy. It is so hard for people who have hated each other for so long, to understand that some people’s only motivation for helping an injured child, is love.

A new charity is evolving directly from Dorah’s need for education. The Johannesburg School for Blind, Low Vision and Multiple Disability Children started in 2003. It receives no government assistance at all.

Dorah can walk independently but when her vision deteriorated, so did her confidence. In the family home, she can find her way from room to room. She can walk up and down steps using a bannister, but where there is no railing or other human to hold, she crawls up and down steps instead.

She can jump a little and she likes to dance, mostly when holding on to someone else. She can climb up and down ladders but she doesn’t like going on the slide.  She swings very high, hanging on by her elbows, with enormous pleasure. She enjoys see-sawing with her brother and other children and she loves playing in warm swimming pools or the ocean.

Dorah can ride a bicycle when her more vigorous classmates don’t break the special “hand”rests and she can somersault.

Dorah can drink by herself (she uses her tongue to seal the cup where her lower lip doesn’t have the required flexibility) and she can eat by herself. She uses thermoplastic splints with a spoon or otherwise picks up the food with her arm stumps. It is messy but it works.

Dorah has clear preferences for high protein and high cost foods. She likes smoked oysters and smoked salmon. She prefers chicken to potato; cheese to bread. She will feel the different ingredients of a meal and push the carbohydrate on the plate to one side. She does not like over-sweet cakes and sweets but is quite a fan of junk food, salted snacks, chocolate, sausages and almost all fruit.

She can repeat the whole alphabet and some numbers and months in order. She used to sing favourite songs by tune only (Happy Birthday; Frere Jacques; Away in a Manger; Twinkle Twinkle Little Star; If you’re Happy and you know it... etc) but sometimes vocalises the words as well. At first it was just “yappy (i.e. happy), yappy, yappy” to the tune of “If you’re Happy and you know it” and more recently, quite distinctly, the words of “Happy Birthday to You”.

Some songs are confusing. At a creche that she attended for a while, they used to sing “Good Morning to You” to the tune of Happy Birthday. So we would greet Dorah “Good Morning” and she would start singing the “Happy Birthday” tune... and eventually we worked out why.

She greets her brother by name, asks us how we are, and answers “fine” if we ask how she is. She tells us that she loves us, and she bids us Bye Bye (sometimes Ta Ta) or Night Night as appropriate. She can nod her head and say Ya for Yes but does not accurately hear the S in “yes”. She uses sign language for “more” combined with the spoken word; the same for “finished”. Her understood vocabulary is vast but her spoken vocabulary that we can clearly hear, is maybe no more than 500 words. Dorah speaks very quietly, right in the back of her throat. She “clicks” to indicate she needs to go to the lavatory and throws a tantum if she smells chocolate but isn’t given any!

She is an exceptionally loving child, always ready to give a hug but not always understanding that she is now too heavy for some people to pick up. She is sometimes consciously naughty and often, for those of us who know her well, very funny and mischievous too.

Dorah is aware of her body damage and that other people find her shocking to look at. Sometimes she is sad about it. And when there are too many other burned children visiting, she demonstrates jealousy if they get too much attention.

But because she is part of a functioning family, complete with boisterous dogs and her own possessions, territory, and routine, she is well-balanced. Dorah is a normal little girl against the World’s expectations.

Our commitment to Dorah is to see her through her operations, hopefully most concluded within her childhood. Other people who have had severe burns or similar deformities to those that Dorah has, have had operations spread over many many years, because some aspects cannot be rushed and because the body and the mind need to rest and build between operations. Our extra impediments are money and time. The charity that started around Dorah, has grown. There are huge numbers of burned children in need and each extra one that is helped can, sadly, detract from the time, money and attention that Dorah also needs.

The hands-on work has largely been carried out by one woman and her son, seven days a week for seven years. Fund raising is still linked to the story of Dorah and to a lesser extent, some of the other children who are being helped. The needs are vast and resources few.

If Dorah is forever in hospital she has little chance of catching up on schooling, normal development and social interaction / family life. Most people, who are injured during childhood or born with deformities, continue to have operations well into their adult life.

Dorah's medical timescale. The surgeons involved do not like to commit themselves far ahead because they are terribly aware of the potential for many a slip twixt cup and lip.

Fourth birthday – April 12^th 1998 Eyelid reconstruction completed at Moorfields, London.

During late 1998 – Reconstruction of lips Roehampton/Chelsea and Westminster.

Age five - late1999 - corneal graft and cataract removal on right eye; improving shape of lips.

Age six - 2000 – More work on the space between gums and lips to improve oral continence i.e. to decrease dribbling.

Age seven – nine. 2001 – 2003 no surgery. Many discussions with surgeons and requests for help from Swansea to Sydney, London to Leeds. Focus upon stability in her family life as her biological mother had abused and abandoned her again and Dorah became a full member of trustee Bronwen Jones’ family. A visit to the British Association of Plastic Surgeon’s annual congress in Newport, Wales, where a few surgeons agreed to see her and others refused to. Assessment at the MorristonHospital, Swansea.

Age ten - 2004 In April 2004 Dorah will meet with Simon Kay of St James’ Hospital in Leeds, Yorkshire, UK. The quest is for a thumb. We anticipate surgery might take place in July 2004.

Beyond 2004

Dorah needs more skin (tissue) in her face. It can be moved around in the face or into the face. As Dorah's body gets bigger, she may be more able to spare skin.

One can elect to make a saline or air bag "pregnancy" under certain areas of skin to stretch them - but the UK surgeons seem not as keen on this method as their South African counterparts. The problem with delaying moving skin is that while Dorah's skull is now growing in a better shape than before, it is still not growing in the correct proportions and every year skin / tissue movement is delayed, her head will grow more deformed and much of that may be irreversible. It is compensating for areas of permanent bone damage and tightness (all around the nose region, the forehead, and the stretched deformed ears) by growing too much in other areas. The lip work in 1998 has allowed Dorah's jaw to start to move towards its proper alignment but she is still not able to close her mouth.

Maybe 2004 will bring a right hand thumb solution. Maybe even prosthetic thumb implants.Dorah however, is left “handed”.  It is not known if this is how she would have developed if she had never been burned. It may be that of both the injured arm stumps, the left one is simply easier to use. It would be good to open the left stump and create something more useful from the melange of bones that is there.

All child amputees have bones that continue to grow, nearly always faster than the damaged skin can keep up. Sometimes bare bone protrudes through the skin. Always there are times when the limbs are sore or even very painful.

Living in Johannesburg, 2000 metres above sea level, the winters are bitterly cold and dry. These factors combined, lead to Dorah’s hand stumps bursting open and bleeding. We hope that Dorah’s new link with Leeds, will make this pain a thing of the past.

Eyes

Dorah lost the vision in her right eye after infection following the corneal graft.

A keratodontoprosthetic corneal graft to her left eye using part of a relative’s jawbone and /or eye teeth or part of one of Dorah’s bones, could still give her left eye a chance to see. (Christopher Liu pioneered this surgery in the UK but the best person in the field is in Italy; the best person in skull bone replacement is a Bulgarian professor, Dorina Krastinova, in Paris, France).

If surgery was carried out to Dorah’s left eye and failed, she would lose the sense of light and dark to which her diurnal body rhythms are set.

The chance of putting muscles into her eyelids is extremely slim.

2004/2005 - skin grafts are needed in Dorah’s chest as she starts to develop breasts. The skin there is too tight and one breast might not grow at all.

Age 12 onwards - improvements to previous work; extra tissue movement to allow for growing body size. All trustees and supporters are advised to read the considerable amount of text on the burns survivors websites (at least one is cross referenced to from our own site). It would then be clear to them that the operations will have to continue for a long time but can decrease in frequency over the next couple of decades. The sorts of aspects that are of great emotional importance to people with damaged faces are to be able to smile when they want to. And to be able to have the normal facial features like eyebrows.

Dorah has no eyebrows. One adult male who fell into a fire when he was camping, lost his eyebrows. He was operated on to move hair into the eyebrow region, because this feature was important to him. What he hadn't realised was that his new eyebrows were of a different sort of hair that grows rapidly like the hair on one's scalp and so he will have to cut his eyebrows every single day for the rest of his life. Dorah does not have a normal hairline, so her face appears too big. Both eyebrows and hairline can be dealt with surgically, but realistically we are only likely to try to improve her hairline after dealing with the boney deficit (hole) in her forehead and the poor quality skin graft currently on top of it.

text revised March 2004