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Sizwe



Sizwe with Dorah in April 2013, in Pinner Green, London



Photographer Sabina Zaccaro wrote: "And here you have the sweetest player in Vercelli" when she emailed a picture of Sizwe playing the piano with Michele M Prosperi of Save the Children, listening. The photo was taken on 21st April 2012.



Sizwe's ambition in April 2012 is to be a pilot. In one month he flew on four planes via Abu Dhabi, Milano, London and Johannesburg, the planes belonging to Etihad, Alitalia and Virgin Atlantic. He is pictured here on 22nd April 2012 in the cockpit of the Alitalia flight Milano to London. The photo was kindly taken by Captain Tommaso Cipriani.







Sizwe playing with his friend Vincent in late September 2011 at Orion beach in East London, South Africa.





Sizwe had two lots of general anaesthesia with all the associated risks and cost, as well as the cost of a tissue expander, to no avail in mid 2011. The expander was wrongly positioned by a young seemingly-unsupervised surgeon, Dr Dale Geoffreys.

In addition to that, two days before the expander extruded, Sizwe had 20ml saline inserted when the skin was only able to take 10ml.

The psychological cost to a child of hoping to look better and then not improving at all, the fear, the danger, the time missed from school, the costs of the accompanying adult(s) in time and petrol, and the cost to the other children of those adults not being there for them instead, are something that the Department of Health should consider over and above the cost of wasted surgery time, wasted consumables, wasted ward bed.

The ward that Sizwe was in at Chris Hani Baragwanath Hospital was grubby and the nurses were entirely indifferent to the needs of most of their patients. His expander was removed in August 2011.





Sizwe took time to meet the chefs at moyo Zoo Lake in January 2011



The problem with birthday cakes outside is that the wind blows the candles out!



Sizwe celebrated his birthday in stages in January 2011 as his brother was away and the joint 20th and 10th party could not happen on the actual date. But after three different lots of cake, a Harrods toy aeroplane and airport paraphernalia and a Richard the Lionheart shield and sword to paint, Sizwe felt the momentous decade had been sufficiently recognised.







On 12th January 2011, Sizwe had surgery at the Sandton Surgical Centre with Alastair Lamont. Dr Lamont took some cartilage from one side of his nostrils and put it in the other side, effectively narrowing the nose a little from both sides.

A piece of skin was also taken from his neck to place beneath his lower lip.

Previously a skin graft was put in the same position by junior surgeons at Charlotte Maxeke Hospital, better known as Jo'burg Gen.

The mistake that they made was to use skin from Sizwe's groin, which was too far from the placement site and so it was a poor colour match.

They also took a large donor site for a small area, which scarred Sizwe's body unnecessarily. They would have thrown a substantial portion of skin away.

While people have to learn in academic hospitals, with something as sensitive as a child's face, Children of Fire strongly urges improved supervision.

Not only was the too-dark skin disfiguring but the poor quality grafting pulled Sizwe's lip in a manner which affected his speech, affected the way in which people reacted to him and affected his confidence.

Sizwe is hopeful that the new skin graft will work far better than the previous one.

Sizwe had lip, cheek, eyelid surgery a while ago. He met with his favourite "Dr Eyebrows" as he likes to call Dr Alastair Lamont, in Sandton in November 2010, to discuss trying again to improve the pulled-down lip that affects his speech.



Sizwe had his second tissue expander removed in October 2010. Steadily he is progressing towards the hairline that he wants, thanks to plastic surgeon Dr Elias Ndobe at Chris Hani Baragwanath Hospital in Soweto.









Sizwe at school, September 2006.



Sizwe pretending to be a pirate with his friends Doreen (burned), Katrina (blind), Nhlanhla (blind) and Seiso (burned)





Sizwe (9) likes the idea of being a singing chef. He had fun making squidausages after threading spaghetti through frankfurters!
Once they have been in boiling water for a while, the sausages look hairy or like sea creatures.





Sizwe (in soft blue hat) with his friends Feleng (11 months younger) who is also a burns survivor, and Vincent who is not burned. July 2007 at Moyo's restaurant at Zoo Lake when all the kids celebrated the homecoming of the Kilimanjaro climbing teens.

Santa-Cyprian, Brixton Firefighter, Sizwe 25 Dec 2009



Woolworths roses enjoyed by 8 year old boys







Sizwe with his family, October 2008



Sizwe is a toddler boy aged three to four years old. His exact birthdate is not known; in fact his biological mother could not even remember the season he was born in, when she was asked. It is possible to determine his age from hand X-rays though. In August 2002 he was taken from his mother and placed in a KwaZulu Natal home for Aids orphans, not because his mother had Aids but because it was the safest place that could be found locally. His father is not known.
Children of Fire was contacted for advice on surgical options for Sizwe. This was followed through as best as possible in KwaZulu Natal but the orphanage did not feel the optimum results were being achieved, nor that there was a step by step medical plan for Sizwe. They decided to bring him to Johannesburg, initially for two days. After consultations it looked like Sizwe would get surgery quickly so it was decided to extend his stay. He has been part of the Children of Fire family for a year. When he first arrived he was drinking everything from a bottle. Quickly he progressed to a baby cup and now he would not dream of using anything so infantile…





While the initial surgeon who promised to help, let Sizwe down badly, other help was achieved. The plastics department and Dr Roger Nicholson at Johannesburg General Hospital and the occupational therapy department have improved Sizwe's left arm and hand radically. But for surgery to be successful, there has to be extensive follow-up and splinting on a daily basis; occupational therapy intervention on a weekly basis. Quickly one young child becomes a full time job. The Aids orphanage put all the children on medicine appropriate for those with HIV-Aids but inappropriate for those who do not have it. Johannesburg GP Dr Giuseppe Trinchero said that the child should be taken off the medicine immediately upon his arrival in Auckland Park and gradually the side effects like a permanently runny nose, disappeared.
Sizwe's first teeth had been damaged too, particularly at the front, from too many drinks of juice or squash. At first he refused to drink water but now he loves it - and milk as well.

Now, beyond the injuries from his burns, Sizwe is a very healthy, happy, lively little boy.
He is extremely sociable, greeting everyone he meets. Entirely immune to social status or prejudice, he'll say 'sharp' and hold out his thumb for the digit to digit greeting favoured by the youth, to a tramp lying on the ground as easily as to an elegant lady sitting at a street café. His friendliness evokes great warmth from the general public and he probably knows every household in our street. Sizwe's most loved item is a car - a toy car or a real car. Driving past the car saleroom in Richmond evokes an ecstatic shout of: 'Car! Car! Lots of car! One, two, lots of car!' He identifies cars by their drivers e.g. 'Mama car' or by their donors: 'Amula car' (a toy red fire engine given to him by Australian volunteer Amelia).

So beloved are cars that the toy ambulance and sometimes the red tractor given to him by crèche-mate Chelsea or the green tractor given to him by school trustees Margaret and Allan Hirsch are piled one upon the other in a toy pushchair and wheeled around the garden endlessly like his own babies.
Sizwe also understands the concepts of ownership so well, that we allow him short term access to some toys by claiming that they are Tristan's cars. This allows him to play with second hand toys donated to the charity without any drama when they have to be handed on to other children.
He refers to cerebral palsy pupil Taylor's wheelchair as 'Taylor car' and gets cross if other children use it - even Zenette van Wyk after her leg surgery or Irene Peta who has no legs at all.

Such is Sizwe's supply of toys that trips to the supermarket are less daunting than they used to be. At first Sizwe, who had never previously been to a shop in his life, could not understand why he could not take all the toys off the shelf -- so temptingly at his shopping trolley seat height. Nor could he understand why 'yummies' and 'chippies' put into the trolley, could not be eaten until after paying at the checkout. But because Children of Fire children are involved in all our day to day activities, so Sizwe has learnt some of the social norms around shopping, eating out in a restaurant and even being quiet in certain environments. He doesn't like hospital queues though nor long cramped kombi taxi journeys.
Ask him to do something like pass a clothes peg while hanging out the washing, he looks at you seriously with his big round eyes and says: 'Say please'. And he is quick to say 'please' and 'thank you' himself, as well as a 'bless you' that sounds more like 'kiss you' when someone sneezes.

When Sizwe first started at the Mimosa Montessori in Auckland Park, one little girl was disturbed by his damaged arm or maybe his missing ear, and started to cry. It did not occur to Sizwe for one moment that she was a little bit scared of him. He just saw a girl crying so he ran up to give her a hug, to make her feel better!
Gradually his day at Mimosa has been lengthened as Sizwe has matured and adapted to the routine. In fact routine and stability is what makes him the confident lovable child that he is. He likes having his own bed and space; his own toys; his cupboard with his own clothes and feeling an equal member of a family. When he wakes in the morning, he rocks his head - or sometimes his whole body - back and forth. When he goes to sleep, he rocks himself to sleep again. He likes to dose off holding a car.. Listening to his favourite lullabies .. Or sometimes like Atlas, he takes a ball upon his shoulders and falls asleep in classic pose.
And throughout the day he sings. Sometimes one line of melody merges into another from a totally different song, but increasingly he has learned entire songs. Some of his favourites are:
'This old man, he played one, he played knickknack on my drum, with a knickknack paddywack, give a dog a bone, this old man came rolling home,' along with Frere Jacques, Jingle Bells, Twinkle Twinkle Little Star, Old McDonald had a farm and so many more. His counting hardly goes up to 'five' in the correct sequence and he is battling with the concept of colour, but he loves to achieve new milestones, even if they are simple things like opening his own tube of toothpaste and squeezing the right amount onto his toothbrush. Given half a chance, he'll do this several times in a row as he is quite partial to toothpaste. He also loves to turn on taps and to dance and splash in water. Or to put on armbands and float in a swimming pool. Learning to turn taps off took a little bit longer. Light switches are also attractive but mostly too high to reach. He also likes to experiment and so, despite being told that soap will hurt his eyes, he had to rub the soap bar in them - not once, but twice - as if to check the veracity of his results.

He is not hugely interested in television but loved the horses pulling sleighs in a video seen at Christmas time and, in our front room, the prettiness of the real Christmas tree with candles. He stared at the ceiling with fascination at the shadows cast by the rotating angel chimes. He is now a bilingual child with a growing English vocabulary and still a lot of Zulu as well. He even knows the concept of insults and referred to someone who had not visited him for a long time as a 'big hocho' (a big bug). Sometimes he laughs genuinely and sometimes he laughs just because all those around him are laughing, as part of the happy group feeling instead of knowing what is funny.

He used to be entirely oblivious to danger and would run out of a gate at high speed or aim for the centre of a road, just assuming that everyone would see him. But now he is a little more circumspect and he points out dangers as 'hot' or 'bad'. And he has an enormous memory for names from Mama to Disdan (Tristan), Docha (Dorah), Amula (Amelia), Helene, Precious, Zenette, Nsizwa, Cello (Sicelo), Jon, Busi, Amu (Amukelani), Luyanda, Caitlin, Taylor, Otto, Katso or Maki (Dimakatso), Charmaine, and so so many more.

His Hero

Tristan is the best big brother ever in Sizwe's world. He'll wash him, dress him, feed him, help with nappy or potty or loo and play soccer - bouncing a ball in such a way that Sizwe tries again and again to do it just like him. Sizwe hasn't got Tristan's fascination with computers, but something active like swingball, or the swing or the seesaw and they're both in, despite the ridiculous height and weight difference. If Tristan tells Sizwe to settle down for an afternoon nap, or to go to sleep at night, 99 per cent of the time Sizwe does so without a murmur of disagreement.

Relationship with Dorah

When Sizwe first met Dorah he was scared or somehow upset at her appearance. He took two full days to work it out. Then as she was sitting in the bathroom one day at a height where he could easily study and touch her, he went and had a good look. He reached out his right hand and gently traced her cheek, her reconstructed lips, the top of her head and very thoughtfully said: 'Ow. Dorah ow.' Then he gave her a kiss.
As time has gone on, he has worked out Dorah's blindness, her lack of fingers and other aspects of her life that are hard. He leads her along, encourages her, chides her and as his own dexterity has improved, he sometimes feeds her. He loves to share a bath with her except when Dorah has a good stretch and leaves him too little space. He takes the shampoo or soap and tries to help wash her as well.

2005

Thomas Ranamane, Jon Maiden and Otto Geukers have all travelled to KwaZulu Natal to progress Sizwe's hoped-for adoption. It has not been easy as the social workers closest to Sizwe's original birthplace told us that permission had been sought and granted in mid 2004. And so Children of Fire tried to encourage a bond between Sizwe and the prospective father. Some aspects were easy as Sizwe is a loveable child - but to raise him properly with the appropriate balance of love, discipline and continual life skills education as well as optimum safety, is another picture. We allowed the boy to spend weekends with a family and found that he did not get his afternoon nap, that he ate junk food, that he did not have a set bedtime and that he did not have his own bed. There was also a serious lack of courtesy in making arrangements such as fetching and returning times and an assumption that we would be endlessly flexible even if the prospective adopters were not. It needs to be recognised that if a child lives continually with one household, that they are integral to his life and his sense of wellbeing. The main adult is the person he looks up to, the one he sees first in the morning and last thing at night. The person who dresses his wounds, splints his limbs, who is there through thick and thin, ready to drop everything if his needs dictate it and taking a serious interest in his school activities.
Anyone seeking to adopt a child, should not reasonably even take a child for a weekend without making a point of letting the child phone the core family and greet them at sleeping time or waking time. They should have photos with them of the family to establish a feeling of security and an understanding that one link is not being broken to be replaced by another. The household, in a child's mind, includes the pets too. Sizwe took a while to learn the difference between Alsatian-mix Comet and Labrador-mix Benjamin or even that these names did not necessarily mean the same as 'dog' but now they are his best pals and protectors, even though they pretty well meet him at nose height. He has learned to feed them, to recognise the older dog doesn't want to be climbed on and that soft stroking is what they like best. Also not to chase them with the pushchair! He also seems to be learning that pictures of lions and bears are not the same as dogs. In December 2004, promises for Sizwe to visit his future adoptive family did not materialise and another family came forward and said how interested they were in adopting a brother for the two little boys they already have. At first it seemed that one family promising a place for Sizwe at a wonderful school when he was older, and a social circle including the political and business elite of South Africa was more than a burned baby boy could hope for. But really nurturing a child takes so much more than money.
Wherever Sizwe ends up, we want him to be at the centre of his family's world. We don't want him picked up late or picked up by strangers. We want him to not be dumped with nannies, most especially not those who aren't trained in child care and in his medical needs. Paid staff go off-duty but families are on 24 hour call. We want the family to be fully versed in his surgical and other medical needs. To hold his hand as the trolley is wheeled down to the operating theatre, time and time again - just like a real family would. The boy who came to stay for two days and who is here a year later, has found a place in our hearts. He's not a victim, not even just a survivor. He's Sizwe - the Nation in one boy.



Sizwe attends the Mimosa Montessori in Auckland Park pro Deo each morning, but he spends the afternoon at theJohannesburg School for Blind, Low Vision and Multiple Disability Children, also in Auckland Park. Here (September 2005) he's greeting Caitlyn, a pupil at the school who is blind due to a brain tumour.

Pictures Update - May 2004

There is nothing worse than a toddler in pain. First Sizwe had his original injury. Then a callous surgeon let him starve for 20 hours before he cancelled the operation! And then Sizwe got an infection in his malformed hand and it swelled up to twice its normal size. At around 5am on a Sunday, Helen Joseph Hospital refused to assist but fortunately Johannesburg General did help, eventually.

 

Surgery

Sizwe Hlope went in for surgery with Dr Roger Nicholson on Tuesday May 4th 2004. It was intended that his left inner elbow contracture would be released and that the fingers on his left hand would be released and realigned. However, on release of the elbow, it was found that there had been a 'growth disturbance'; his left forearm is shorter than his right forearm because of the contracture. With the hand unable to comfortably reach the groin area, it was not advisable to try a groin flap. The alternative is a free flap. This is more risky than a groin flap and will take a whole day in theatre as it requires surgeons to attach blood vessels to blood vessels. The inherent risk is that if the blood clots, the flap dies.
For the next two weeks, Sizwe's arm was splinted with the ten degree extension improvement on the elbow, and then it was re-splinted to further improve straightening. The surgeons arranged further surgery in southern hemisphere Spring 2004. Sizwe's inner elbow looked likely to recontract and so we started splinting there again in December 2004. The pressure garments chafed his skin so much that it bled, but the area healed and he started wearing the glove and upper arm garment again in January 2005. Hand splinting to bend his fingers is good but the index finger needs further surgery. Most of his fingernails are missing on the left hand. When Sizwe is about nine years old we might look at giving him a prosthetic left ear.. But the shape of his existing right ear is so unusual, it is hard to contemplate replicating it. We do not anticipate using tissue expanders on his head.

Photos of Sizwe April 2004

  
  


  
  
  


Kissing Charmaine, fellow pupil at the Johannesburg School for Blind, Low Vision and Multiple Disability Children. Walking up St Swithin's Avenue in Auckland Park with Bongani Madlala and Dorah Mokoena in 2004. Checking out Charmaine again in the herb garden at school. In the arms of Tristan before an abortive attempt to get surgery at Milpark Hospital. With his friend 'Short Right' .. Sicelo Maduna. The makings of a marathon runner … or just a conundrum for adults… how can those short legs go so very much faster than mine?! Every door must be opened. Every button must be pushed. Hug the man from Johnson & Johnson in case he can get you artificial skin Integra again. Sit in a café and what's the marmalade for? Well to spread on your drawing paper of course and them to put it on top of your bald head.

Original Site photos












Sizwe was allegedly intentionally burned by his mother. There seems to have been no investigation of this criminal matter by the police. Most of his hair is missing, though he could grow a cool Rastafarian ponytail one day. His left hand and arm were badly burned. His left ear is missing and he sleeps with his eyes partially open because of eyelid contractures. He is said to have up to seven biological siblings; most of them are in foster care. Sizwe in operating theatre 12th May 2008





Sizwe just before surgery at Carstenhof Clinic 12 May 2008







In the operating theatre at Carstenhof Clinic, 12th May 2008









We are still exploring the best options for his future.
Please email firechildren@icon.co.za if you think that you could help.





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