Oscar is a shy little soccer-loving boy who turned ten on January 18th, 2004.
He was terribly badly burned in a rural house fire on June 25th, 1999. He lived in a 'four-corner house' of mud brick with a thatched roof, set in windy marshland at the Ntuli stand, Mbabane, 46 kilometres from Newcastle in KwaZulu Natal. He attends the Bumbisizwe �Special� School in Madadeni, near Newcastle, KwaZulu Natal Province. There is no reason why he has to attend a school for cripples other than social prejudice. Physically he would be able to cope in a 'normal' school. Nsizwa Vilakazi, another boy being assisted by Children of Fire, attends the same school.
Oscar started school late so he is one year behind where he should be academically. In late September 2003 Oscar came to visit Children of Fire in Auckland Park, accompanied initially by his mother Nelly and her neighbour. The neighbour came because the maternal grandmother had just died and Nelly felt unable to travel by herself. We accomodated them all and funded their food and travel. Oscar then joined a group of children, all of whom are helped by Children of Fire, to attend a Burns Camp in the Magaliesburg lake and mountain area of South Africa. The burns camp had a variety of enjoyable activities designed to increase children�s confidence. Children of Fire provided UMashesha (quick mover) volunteers because they knew all the different children, speak all South Africa�s 11 languages, they are trained first aiders and most of all because they come from similar environments to the children and relate to them well.
Most of the camp activities were well organised by another charity called Eco Access. Generous funding was provided by Du Pont and there was some involvement from another charity called the World Burns Foundation (WBF). About a month after the burns camp, one of the WBF members telephoned Bronwen Jones, Director of Children of Fire, from Los Angeles and said that he wanted to adopt Oscar. She said: �I was very surprised. We had talked about squatter camp children in need of sponsorship through the charity�s other projects, but not the idea of sponsoring let alone adopting, a burned child.� The WVF man continued and said that he would like to fly Oscar and one of the UMashesha volunteers out to Germany for Christmas for a holiday. Children of Fire was not averse to Oscar and a volunteer having an overseas holiday but thought that the idea of adoption should not be raised with his family at that stage. We also said that Christmas was too soon and that he should aim for an Easter holiday instead. If people agreed, there would have to be a hard copy letter of invitation and a lot of checks and balances before we could support it formally and before other authorities would agree. We phoned Oscar�s reconstructive surgeon for his opinion and he said that it could be a good thing. We also sent one of the UMashesha down to Newcastle in KwaZulu Natal to explain to Oscar�s mother and to his school about the holiday.
UMashesha Elizabeth Botopela wrote: �I talked about the holiday with Nelly and Oscar and a representative of the Newcastle Mayor�s office. Nelly�s main concern was that a lot of people had raised her expectations for her son in the past and that she did not want him or the wider family to be disappointed again.� We waited for the letter of invitation to arrive in the post and talked to the UMashesha about which one would be best suited to travel with the little boy. Then, unexpectedly, an email arrived, saying that the member of the WBF had changed his mind.
Children of Fire was shocked. But we should not be surprised. It is easy for do-gooders from another country to have a great idea, dip in and out of people�s lives, and the local organisations are left to pick up the pieces. Next time we will simply say �no� at the outset. We will pay the costs for another volunteer to go and explain to Oscar, his mother and his school that the exciting offer of an all expenses paid holiday was false.
On May 12th 2003, Oscar had ground-breaking surgery with R25000-worth of skin flown in from France accompanied by a French technician, at the Albert Luthuli Hospital in Durban. The surgery was be performed by Professor Anil Madaree with follow-up grafting on June 9th. Children of Fire travelled to Newcastle and to Durban to serve a High Court order on the hospital superintendent, to ensure that Oscar was not removed from hospital before the surgery took place, nor before he had fully recovered. This was in response to previous behaviour by his mother, who seems easily confused. Oscar's mother nontheless retains sporadic contact with the charity, through relatives that translate for her.
She called us on May 4th 2003 through relative Bruce Khumalo and in September 2003 again asked us to take her child to live in Auckland Park. She repeatedly requests that Oscar should live as a member of trustee Bronwen Jones' family where another badly burned child already lives full time. Because of the immense difficulty of caring for a burned child, physically, emotionally and financially, we sought other options but sometimes it seems that Nellie's wish may indeed be the best option for Oscar's future. Nellie was advised to admit Oscar to hospital immediately in Newcastle on May 4th or at the latest on May 5th 2003, so that he could be swabbed and cultures taken to determine if he has any sepsis under the skin that could jeopardise surgery. After many phonecalls and many days, Oscar was eventually taken direct to Durban without testing as time had run out.
The charity first offered to assist Oscar early in 2000 through some people fundraising on his behalf in Newcastle. That offer of assistance was not taken up. Oscar and his mother met trustee Bronwen Jones in Johannesburg in September 2000, during recordings for the 'Felicia Show' (in an episode focusing on burns). His mother phoned the charity shortly afterwards and then wrote to Bronwen, in Zulu, requesting that she take Oscar away and 'put him with other children like him'. The charity then arranged to visit Oscar and his mother at their home near Newcastle and to discuss their problems with the professionals and well-wishers involved in Oscar's care. That visit took place on November 11th, 2000.
We subsequently learned that social services only started to look at Oscar's case on 3 November 2000 - almost 17 months after his injury. This highlights a common problem in South Africa whereby hospital social workers and field social workers seem not to communicate with each other. As one third of South Africa's burns cases are caused intentionally, it would seem logical to have an investigation of the home circumstances as soon as a child is sufficiently badly hurt to require hospitalisation. Clara Nelly Hadebe alleges that her former boyfriend, Oscar's father, (now married and living elsewhere) might have set the fire, to burn her possessions. Oscar's father is called Albert Sbusiso Ndlovu. He is married and has six other children. Nelly does not allege that he intended to hurt the child as people were not normally sleeping in that building. Nelly had recently taken the father to the maintenance court and secured a monthly payment of R200 total for Oscar and his sister. She suggested that that had made him angry. Other people have alleged that there was community jealousy at Nelly having bought nice possessions with her factory-worker earnings and that that could have sparked an arson attack. There does not seem to have been any police investigation.
Following the burns, Oscar had no hair on his head except for a few tufts at the top of his neck, at the back. His nose was still recognisable, as are his lips, but his mouth was compressed from both sides as the cheeks are massively misshapen and lumpy, overlapping the mouth area. This made talking and eating difficult. The overall facial shape was like that of a very old, fat man with jowly pitted cheeks, not that of a once-handsome little boy.
The Newcastle Advertiser has a photo of Oscar before he was burned, which would be helpful for further reconstruction. Oscar's forehead is furrowed with scarring and his left eye is almost closed over but he can still see light through it. The left ear could be rebuilt with cartilage but was hardly recognisable as an ear. The right ear has retained its shape and his right eye still works well.
Oscar has raised scars (keloids) on both shoulders. They are largely the same colour as the rest of his skin and look as if someone has stuck lumps of play-dough all over him with no pre-determined pattern (or thrown smaller lumps of molten syrup that have stayed put). The left arm is severely contracted, darker and pitted, at the inner elbow. This could be eased with continual use of thermoplastic splints (at least at night), instead of surgery. Oscar wore a light green jade bead bangle on the left arm (given to him by Chinese wellwishers) but it was not tight. He stopped wearing it on admission to the Catholic children's home St Anthony's in April 2001 and was told to wear a cross around his neck instead. The left hand was severely deformed but Oscar still uses parts of both hands to hold things. The right hand functions well but has keloids on the back. He can take his own clothes on and off but found it hard to open the waist button of his trousers. Oscar's right shoulder blade is largely clear of scarring; but the left shoulder blade is totally covered. Oscar has a swathe of scarring across his trunk (at the back) and more keloiding on his buttocks, mainly on the left side. His legs are largely undamaged except for flat scarring from skin grafts. Oscar's chest, stomach, and groin area are undamaged but he has keloiding on the inner left thigh.
Prof Anil Madaree, a leading plastic surgeon in Durban, has worked on Oscar's hand and will help with his face. During 2001 no occupational therapist was consulted about splinting his left arm with thermoplastic material. Nor was there anyone in the children's home where he still was throughout 2001, who was equipped to take a regular interest medically, to ensure that Oscar started wearing pressure garments on his face again.
The charity made this request to several people and organisations in the Newcastle area in November 2000 but it was not acted on throughout 2001. The garments would be less effective now that the scars are more than three years old. We also recommended that Oscar and his mother should spend time with Zulu-speaking child psychologists at Wentworth or at Newcastle Hospital. In November 2000 Oscar had only really tiny patches of yellow scab on the scalp or neck area and it should have been safe at that time to re-admit him to Wentworth. Nelly demonstrated where there was pus in a spot by squeezing it with her fingers. She did not forewarn Oscar about what she was going to do, or that it would be painful, nor did she first wash her hands, nor did she think for a moment about whether it was a good thing to be squeezing the spot at all. Nelly was very anxious about skin expanders that will be used on Oscar's stomach area to provide donor skin for his face. She had little concept about the way skin is in layers and what lies below, and she feared that Oscar's digestion would somehow be interfered with. When Nelly was anxious, that anxiety was transferred to Oscar. Patients are much happier and heal much better if they understand what is going on. Likewise if their main caregiver also understands. Nelly understands very little English but will nod as if she understands, rather than ask for explanations in her own language. Both she and Oscar needed pictures (that they could keep) to show how the body works and a very very rough timetable for when operations will take place.
The charity previously bought a book How the Body Works (an Eyewitness Science Guide by Steve Parker: ISBN 0-7513-0081-0) for one child that we helped. While it was quite expensive, the diagrams in it are very good. It would be even better if such books were also in Zulu and Sesotho, but it is a good investment for a child who will have operations for many years to come.
When the charity went to visit Oscar in Madadeni and Newcastle in KwaZulu Natal Province on November 11th/12th 2000, he seemed only to possess one or two pairs of underpants as he was wearing none on the 12th. He has a trust fund of his own but it seems not to be easy to access funds for items such as clothing. We believe that his trust fund can quite legally provide for some basic needs that assist in overall hygiene and in his psychological well being. We nonetheless gave him some pyjamas, toys and books. The charity said that the home environment in November 2000 was unsuitable for Oscar, his sister and his other three half-siblings, and his mother. The buildings had no electricity nor running water, and the pit latrine was squalid. Nelly also claimed that she had recently learned that she was illegally adopted some 35 years previously and that she has no security of tenure at the place she considered home. Nelly suggested that she was adopted as a five-day-old baby (given to her aunt in Durban by a domestic worker) to be a servant for the family.
While her 'mother' is angry when the topic is raised, she too made is clear that the paltry few buildings on the plot of land were for Nelly's 'sister' not for Nelly. Nonetheless some family link would be maintained as Oscar and his siblings seem to care for the grandmother, irrespective of there being a biological link or not. Oscar seemed fond of his mother and we stated in November 2000 that if she was more capable it would be good for that link to be maintained by making a life and home that works for the whole family.
His older half-sisters (the eldest is now 20) could also be good supplementary support for Nelly. The two elder half sisters and one half brother were all fathered by Enoch Dumsani Ndlovu - no relation to Oscar's father despite the same surname. Enoch has 3 other children with his wife in Johannesburg. He works as a painter and does not seem to maintain contact with his children in the Newcastle area but Enoch's mother does.
With the assistance of local nurse Thoko Twala, the charity arranged for Oscar to move to a house in Madadeni with his mother, but said that the local trust (allegedly with R100,000 collected) should bear the bulk of the renting costs involved. The house had electricity, running water and an outside toilet. It was a marked improvement on the previous home but for reasons best known to herself, Nelly started to leave Oscar for weeks on end with other people who were not even related to him, particularly with Thabile Ngwenya who worked in the pharmacy at Madadeni Hospital. We tried to encourage Nelly to undertake training that could equip her for a better-paid career and researched some courses, in Zulu, that were available to her. We arranged a place for her on a St John Ambulance Home-Based Care course in Durban, but she did not take up the offer. Nelly only has Standard Seven in formal education. The charity again visited Oscar in January 2001 when his mother gave us in loco parentis authority to assist him. Oscar was belatedly registered at a school (Khaselhothe) in the Newcastle area but according to his mother he did not like the reaction of the other pupils to him, despite prior counselling of teachers and pupils. The school welcomed him but Nelly refused to let him attend. The charity listened to all Nelly's requests and went so far as to secure her employment in Durban so that she could be close to Oscar as he underwent surgery. Nelly asked us to collect Oscar from Newcastle but then played a game of hide and seek with him until the Child Commissioner had to intervene. Nelly borrowed money from the charity that has not been repaid and travelled to Durban but worked only two days at the job before removing Oscar from Wentworth hospital on the morning that he was due to have an operation; an operation that the charity had also arranged.
It became clear that Nelly was severely depressed. She had removed her son from Newcastle Hospital on several occassions previously, against the advice of medical staff. Nelly started to tell the community things like her son had been 'abducted for open heart surgery'. The Children's Court stepped in under the Child Care Act 1983 (Section 74) and removed Oscar from Nelly's care. He was then placed in a Catholic children's home on April 12th 2001. On April 23rd, 2001, the charity was invited to a Care Plan review of Oscar's needs in the Newcastle area. At that meeting we explained the urgency of Oscar's medical needs and insisted that he be readmitted to Newcastle Hospital that day. We also urged the social workers to look for an appropriate foster family as the charity did not believe Oscar could flourish as one child among 65 children, particularly because of the pain and discomfort around all the surgery that is still to come. Oscar would benefit from a loving foster home with well-educated parents living close to top class medical facilities, with a comfortable income and no more than three children to share the attention and care. Oscar stayed with the charity briefly in June 2001 while we took him for assessment by an ophthalmic surgeon. He liked Johannesburg a lot and was most relaxed in a small loving family environment. That is what he needs most of all. He has been traumatised by all the upheaval in his life in addition to the difficulties of disfigurement. He has a great fear of injections and of being abandoned in hospital. When he stayed with us, he enjoyed playing football, climbing, going out for milkshakes and pizza, visiting the zoo and stroking small animals, and watching simple videos like the story of Pingu the Penguin.
Oscar was returned to his mother's 'care' and she phoned trustee Bronwen Jones in early 2002 to again ask her to 'take him away' and to apologise for her behaviour to the charity at the time she removed Oscar from Wentworth Hospital on the day he was due to have surgery. Children of Fire could not get any co-operation from the social workers in Newcastle despite having at one stage secured a would-be foster mother who had been approved by social services in Pretoria and a Durban-based wellwisher Margaret Hirsch had also arranged a potential foster family for Oscar next time he has to be in that city. Oscar needs a loving foster parent who really has the time to care for him, the money beyond what a social grant of R460 to R700 a month could provide, and at least one sibling for him to bond with - but not too many children in the same house. Oscar also needs counselling and people who can help him negotiate the more difficult situations he will have to face as he grows up.