Bonga has had a terrible accident. He fell into the swimming pool at his fosterhome. His foster sister Lydia pulled him out and after she and her mother tried to resuscitate him he was rushed to the Red Cross Hospital in Cape Town where they managed to revive him. However, he is still on life support, still unconscious and his prognosis is very bad. March 5, 2002.
Sadly, Bonga passed away in May 2002. A detailed account can be found in the Bonga Diary. Please also see the Bonga Gallery.
Bonga means "Thank You."
The battle to help Bonga has been very similar to the battle for Dorah (see elsewhere on website), though he is medically less complicated. He was burned as an infant. His mother died in the fire and his father, allegedly a paraffin seller, placed Bonga in the hospital system and abandoned him there.
Bonga had a twin sister who died quite some time after he was injured. It is believed that she died from malnutrition.
No attempt seemed to have been made by the hospital system to retain long term contact between Bonga and his biological family though he allegedly had an aunt in Cape Town. The fact that he had had a twin sister only became known to Children of Fire when his now foster mother Anna was in the middle of being "approved" for fostering.
October 2001.
Bonga was moved from St Joseph's Children's Home in Cape Town to live full time with his new foster family, and Children of Fire's Cape Town representative Anna du Bois is now his mother. She and her husband already have three of their own children but the family have all welcomed Bonga into their midst. Children of Fire will still be there to help financially if needed or with advice by phone and email.
Children of Fire strongly recommends the use of foster families where biological families have died, are untraceable, are incapable of coping with the burned child or where they reject the child. However we urge a backup system to try to give natural or foster parents of severely burned children a break once in a while, maybe like the Marang House organisation www.marang.org.za in Johannesburg.
Burned children are complicated to care for emotionally and physically. They cannot be lost among the scores of children in children's homes if there is ever the alternative of a good family that is prepared to take them on.
That said, such families are rare and often social workers are quite negative about moving children, especially if it is to a family of a different skin colour to that of the child. The situation with Oscar (see elsewhere on website) remains unresolved in March 2002.
Bonga was one of the lucky ones. Anna and family have been his friends for quite some time but once they have the authority to help him far more effectively than was possible before. Also they can see every day what he can and cannot do, and care enough to pursue solutions to problems through all the remaining bureaucratic hurdles.
Anna is continuing Bonga's treatment in the Red Cross hospital in Cape Town. As elsewhere in the country, using public hospitals is extremely frustrating if time is precious and some of the inefficiencies of the system simply add to the myth of "African time" - sometimes interpreted as "arrive when you like!"
In November 2001 Bonga finally got something that might help close his wounds on the head - some medicated plasters called Granuflex. And with a strong-willed foster mother at his side, Bonga now has a medical plan for his lip, nose and stump while waiting for his head to heal sufficiently to use tissue expanders. Bonga was booked for 8th February 2002 to have the lip pulled up, left side of the nose reshaped and to have the thumb released. The thumb job will depend on the results of the X-rays though.
Straight after becoming Bonga's foster mother, Anna arranged a hearing test for him. She was aware of him not matching the same speech milestones as her other children and knew that speech and hearing abilities are linked.
Bonga's hearing test revealed 80 per cent hearing in the good ear, and maximum 30 per cent in the damaged ear. He doesn't seem to have an opening in the damaged ear, or if there is one, it's very small and it isn't straight. Moreover, in the good ear he starts hearing only at about 40 decibels, as opposed to 25 for normal hearing.
Anna wrote: "This would explain his "anti-social" behaviour in group situations - he simply doesn't hear what's going on, or can't make out the right sounds and simply switches off. It also explains his liking for lying on top of the drum at the drumming sessions in Red Cross, sitting right up against the CD player and putting his hand ON the instruments when my children practice music."
The next stop was the ENT the following week to check whether there is an opening in the left ear. Then we'll have to decide what to do about that ear and meanwhile will go to a speech therapist to get advice on how to help him learn to speak properly."
Rene Alberty of the Red Cross hospital wrote: "I have found out that certain antibiotics, when given over a long period of time or to burned kids admitted to ICU, could cause deafness to an extent." [It is not clear if this comment has a scientific basis or not].
Anna kept regular notes about Bonga's development that would never be provided in South African institutional care. Trustee Bronwen Jones first met Bonga in 1999 and again the next year, but kept in regular contact by phone and email with his carers.
A small sample from Anna's notes:
Mid April 2000
Bonga eats by himself now and when nurses try to help him, he screams his head off. I was very pleased to see it. He is desperately trying to speak, but he has the same problem as Dorah had - too much noise in too many languages and he simply shuts off.
23 May 2000
The professor has thanked me for offering to help in
organising another Burns excursion. "It was a wonderful experience
with 18 crippled, deformed children. It was remarkable for me to see how
the public responded to their dispositions in a very positive way and in which
way St Elmo's went out of the way to accommodate us. It was a fantastic
afternoon. The process is in place for Bonga. We are very anxious
to get him mobilized and we have asked a person in
private practice to
advise us on prosthesis and further management.
The Department of Plastic
Surgery is also in the process of doing a major reconstructive work to his
face, especially his nose and
forehead."
Bonga banged his head and
the skin on the bold bit split open and became a bit septic. He also now has
sores on his bad leg, because the skin is too sensitive. The nurses put aqueous
cream on him but I think he needs something more substantial. But tomorrow
is the burns unit round and
hopefully I will have some news about the
assessment.
June 2000
Bonga is back at Sarah Fox today. Apparently, he
screamed his head off in the combie all the way to Red Cross and was crying and
screaming and kicking so much there that Red Cross nurses asked the nurse from
SFH to stay and help them deal with him. The results of the "hundred and twenty
tests", as one of the nurses told me, should be known sometime next
week.
August 2000
I spoke to the sister in charge of C2 at RC. She said Bonga spent the entire day at Conradie hospital at the orthpods and came back tired and grumpy. Threw a major tantrum, with screaming, kicking and all that, but after that calmed down and apparently he is fine and happy today again. He might have his shoe as early as next week - or so they claim. But I will have to nail down Prof Rode himself to get anything more precise. This nurse, sister Petersen, is also very fond of Bonga. She is taking him home for the day tomorrow. She was going to take him for the weekend, but then she said - if you also want him, I'll bring him back and you have have him as well. Don't you think it's amazing - at SFH he is considered a stroppy nuisanse and at RC everyone loves him.
By late this afternoon Bonga was still at
the orthopods. I'll ring RC tomorrow.
The situation with SFH
children's schooling is like this: boarders, who should not be at SFH in the
first place, go to the Thambeletu and the Bel Porto schools for the
handicapped. They are picked up by their respective schools' transport every
morning and delivered back to SFH at about 2pm every day. However, TB
children, burns children or raped girls do not go to school at all.
considering that a course of TB treatment is AT LEAST six months, this means
that a TB child effectively misses the entire year of schooling. Children like
Janine also miss years of schooling by being taken back and forth between their
homes and SFH.
We had Bonga again on Sunday and he was again full of smiles, giggles and "talking" - he verbalises non-stop and one can decipher "bolly, dolly, come on, like that, dog, bye-bye" and a few other almost words. And Francois changed his nappy and even tried to pick him up! Whatever next...
I am not about to start yet another fight with the SFH matron about taking Bonga out. I have had enough fights with her as it is. She is the person who told me that I don't understand anything and am just spoiling Bonga and he would be much better off with his own kind - whatever that is supposed to mean...
Just spoke to sister Petersen, the senior nurse in charge of C2. She is also very concerned about Bonga and thinks that he will definitely be better off in St Joseph's. She will try to get hold of Prof today because ultimately he is responsible for Bonga. Let's hope.
Thanks for writing to the Prof. Let's see if something happens. The outing will take place on 26th August and we will go to he Aquarium.
29 Jan 2001
Bonga is doing well. His speech is still VERY bad, but he is trying. He now makes little phrases, like: "Bonga to school", "Papa book please", "Lydia gone," "Fetch Nicolas", etc.
With daily doses of Vaseline, aqueous cream and some calendula, religiously applied by the nursing staff at St Joseph's, his skin is beginning to look much better. My only gripe with St Joseph's so far is that they don't wash him well - like the rest of the kids, so when I pick him up on Friday he is rather smelly. Otherwise, I find the staff there very friendly, dedicated and unafraid to hug and kiss the children.
27 March 2001
Bonga has a septic sore on his head that doesn't want to close. I've tried all sorts of creams but it seems that I will have to take him to he doctor and put him on antibiotics.
21 May 2001
Bonga asked me for the first time about his missing hand. He knows the word hand, but the other day he pointed to his stump and asked - what's that? I said it was his little hand - as opposed to his 'big" right hand.
25 June 2001
Spoke to the social worker
who used to be Mr Maninjwa's supervisor. He is no longer there and Bonga's case
is now in her hands. However, she said she is getting a new social worker to
replace him and that this woman starts on 1st of July and she will be dealing
with his case. She thinks that it will take only a month or two because it has
already been established that Bonga can't go back to his biological family.
August 2001
Bonga's operation was cancelled this morning. This time the specialist said that because Bonga has an open wound on his head, they cannot put an expander in. The doctor I spoke to (I think it was the anaesthetist) said that the problem is with the original graft, which was of a very poor quality. Their opinion is that the best for Bonga is to wait, possibly until he is 6 years old, by which time his skull will become harder and hopefully the terrible grafted skin on top of his head will also thicken a bit and they will then be able to put expanders in.
In their view Bonga's deformed lip is not a problem - that is it's not a functional problem, but a cosmetic one and therefore, unless the lip starts pulling down in such a way that he can't close his mouth, they will not do anything about it. Same with the eye - yes, one can see the inside when he yawns, but it isn't "weeping" all the time, and therefore they are not going to do anything about it either. Ditto for the scars on the tummy - wait, wait, wait until it becomes a functional problem - otherwise live with it. So that's where we are.
I know that they have a limited budget and see thousands of burnt children, but I find it frustrating nevertheless. I want him to have as normal a life as possible and have a different idea about what is functional and what is cosmetic. As in **'s case, I don't agree that spending several years on growing hair, but not thinking of giving ** a prosthetic nose is a very clever idea. I know that the absence of a nose doesn't prevent ** from breathing or sneezing, but it prevents ** from beginning to contemplate normal interaction with other people.
Not only I must go on a parenting course despite having three superachieving children and turning Bonga from a mute into a chatty, loving and friendly child in six months, I must now put up with the indifference from the medical profession.
It seems that Bonga's operation has been cancelled again - and NOBODY bothered to inform me about it. I rang St Joseph's and they said - no, Bonga is not going to Red Cross on Friday. His next appointment is only for 14th September.
Last week he was sent to RC because the sores on his head had split open again. Nobody bothered to tell me that he was at RC and what decisions the doctors made. I was just told by the nursing staff at St Joseph's that I must wash the wounds with a saline solution - (just to make sure that its really dry and NEVER heals, I suppose...) and that was that.
Got a phone call from the social worker, Ms G. She said that she has submitted her report to the Wynberg child placement office. They now want to know: how much I pay in school fees for my children, why do I want a foster grant when I am so "rich" and what is my involvement in the community where I live. They also said I must go on a foster parenting training for one or two days before they make a decision. She told them that Bonga has been with us for nearly a year, that we don't need training, but they won't hear of it. They also told her to tell me that I shouldn't apply for the foster grant "because it is a lot of money". To which I replied that I will most definitely apply for it because this child needs a lot of therapy and I will be saving a lot of money to the state by removing him from an institution. Give me strength...
We've decided to put Bonga to the UCT crèche next year - depending on the outcome of the skin expanders operation. If it goes well and he recovers quickly, then there will no reason at all for him to stay at St Josephs anymore. The rest of the operations are not as protracted or disfiguring - or complicated. The UCT crèche is supposed to be quite good, and it is not outrageously expensive - about R600 per month (only R200 less than the boy's school - and more than some UCT degrees!)
Do you remember the wire sculpture of a female nude that hangs on the wall in my living room? Bonga the other day looked at it and asked: "what's that?” and before I could reply he answered himself: "Mama!". and when I laughed and said that this wasn't mama but a woman, he said, "Eysh, mama-woman!"
I am still concerned about the splitting skin on his head and foot. Is there any solution to that? My worry is that come February, even if his skin is OK on the day of the operation, it's bound to split sometime during the six weeks that it takes to stretch the skin. do you have any other suggestions? and what of the comment by that registrar that it is anyways better to put issue expanders in after the age of six?
September 2001
Subject: Re:
staphylococcus
The professor wrote: "The problem for Bonga is that
antibiotics will actaully worsen is problem. Burnt skin has
impaired ability to deal with the organism - hence the delayed
healing."
But what I want to know is this: if antibiotics are bad for
him, what must be done because he isn't getting any better? If they knew that
he has this infection, why didn't they tell me? - it would have saved me R300
and I could have taken measures to prevent its spread within the family And
although blood poisoning may be unlikely, why must the child be left with open
blisters for so long without any attempt to alleviate the discomfort and
pain?
Took Bonga this morning to our own, private GP because yesterday
discovered three more sores on him, some of them with puss. MeanwhileI also
developed similar sores on my hands.
The GP took one look at me and before even looking at Bonga said it was a staphylococcus infection. It's a bacterial infection, which in severe cases can lead to blood poisoning. It lives in the nose and only becomes active if the person's immune system is weak, as in Bonga's case. Left untreated it will only get worse, leading to all sorts of unpleasant consequences. He picked it up at the hospital and I got it from him (along with a fungal skin infection!) because he spends half his time kissing and hugging me.
This diagnosis is in marked contrast with apparent indifference or fatigue shown by some state doctors who seemed to ignore my repeated questions about Bonga's sores. The registrar, who cancelled Bonga's operation two weeks ago because of the sores, simply told me "it will all get better eventually". Not so according to the GP.
Bonga and I are now on a course of antibiotics. We must also put Bactroban cream on the open sores and up our noses. In addition, Bonga must be washed in Dettol and salty water and the rest of the family must have strictly segregated individual towels and sponges. The only nice thing about it all is that Bonga and I get to eat as much natural yoghurt as we want to counteract the effect of the antibiotic on the stomach.
Basically Bonga should be at home, have plenty of vitamins and fruit, have a Dettol + oil treatment every night and he'll be OK.
The nurses at St Joseph's want Bonga to go home "for extended leave", because he has no business being at the hospital for the next five or six months, until the doctors see him again sometime in February. I spoke to the woman in charge of UCT crèche yesterday. She can't wait to get Bonga - she is doing a diploma in teaching and is studying inclusive education and wants to apply all the theory. The crèche is very multicolour, but monolingual - i.e. all instruction is only in English, which is a good thing in Bonga's case.
His birthday is in two weeks. We'll have a proper party for him - balloons, streamers... I am planning to invite three or four of his friends and take them out somewhere once they've played at home.
Bonga cried this morning when I took him back and said in a little plaintive voice - "Mama, I am not going to hospital, I am not staying here...” Broke my heart.
But we know what he wants for his birthday - a bike. The other day he looked at the boys' new bikes and said - "Nicolas bike, Alexei bike. Where is Bonga bike?" We said that he didn't have one. So he replied - "Bonga buy bike!"
You made me feel so much
better! I was really beginning to feel a bit depressed yesterday when this
doctor said that every problem with Bonga that I mentioned wasn't actually a
problem but a cosmetic issue! What is your suggestion for the recurrent wounds
on Bonga's head and foot? Is it possible to give him another graft on the head?
The wounds always come back, both on the head and on the foot.
And if
the decision is NOT to put tissue expanders in his head until next year or
until his six years old, can we maybe concentrate on his hand, lip, eye and
tummy?
October 2001
Bonga started university early... well at least the University of Cape Town crèche; attending for the first time on 29th Oct 2001. He was OK until it was time to say goodbye - he then started crying terribly. His teacher - called Bronwen - said it would get easier - and it did. He now attends for the full day.
He'll go until lunchtime today and tomorrow and from Wednesday he'll have to go full time. He was very emotional on Friday when I came to take him home for good. He understood that something was happening , but wasn't quite sure what it was. We spent the weekend telling him about the new school, the new teacher, the new friends, etc, etc... I bought him clothes, a lunch box, Band-Aids to keep at the crèche, and we talked endlessly about it all. He misses his friend Sisa and keeps on asking about him.
Social workers!
Spoke to the social worker. The report WAS lost, but they did find it and have already approved it. She claimed that the report will be sent to the court either tomorrow or Thursday and we will then be given a court date + paperwork for foster grant. Let's hope. Bonga meanwhile had another difficult night because I was stupid enough to give him ice-cream after supper. He couldn't fall asleep until half past ten and then wriggled so much in his sleep that his nappy came off and this morning he was wet and smelly! But for the rest he had a glorious day "helping" everyone in the garden. Gardening mainly consists of pulling things out and mucking about in mud and dust. Bonga LOVED it. He could spend hours playing with various objects in the dust, examining bugs and leaves - and no one told him that he shouldn't do it because he will get dirty!
Phoned Bonga's social worker in mid October 2001. She had told me 5 weeks ago that the decision on fostering would be made within two weeks. She then gave the number of the office in charge of screening social workers' reports. The number was engaged for half the morning. Finally I got through - oh, no, they said, we know nothing, it has nothing to do with us. Ring the children's court in Wynberg. So I ring the court and they say, on ho, we've never heard this child's name - ring his social worker!
After a few more calls I established that the social worker did write the report and did deliver it by hand to the appropriate office. However, the person in charge wasn't there and she left the report on the receptionist's desk - and never checked whether the man in charge received it in the end!
Now I know all the hoops we must jump through and there aren't so many of them in theory. The report must be approved by the person in the social services department, who will then send it to the Wynberg magistrate's court to the children's court division. They will set a date for a court hearing. we will then have to go to court in person - the social worker, Bonga and myself, and the magistrate will either give final approval or send us packing.
For now, though, I am trying to get the social worker to ring the right office to find out where is her report!
Bonga's very first birthday party was a resounding success. He was at first very confused and couldn't understand why we left his friends at St Joseph's on Friday afternoon. He then wasn't sure why we went to pick them up on Saturday morning!
However, once we got to the little puppet theatre, he and his two friends really liked it. In addition, a puppet gave Bonga a special birthday bunch of field flowers! And told everyone that it was Bonga's birthday!
At home they had animal shaped chicken pieces, crisps and fizzy drinks.They then even managed to have a bit of a nap, before watching a video and eating cake. Bogna blew all his candles with great joy.
Once the two friends were back in St Joseph's we could give Bonga his presents. And he liked everyone of them and in particular the Barney bike! However, we discovered that his left leg and foot are so weak that he can't really cycle very easily. He does half a turn with the right pedal, then half a turn backwards and then forward again because he can't press the pedal down with the left leg. But he'll get there.
The festivities started at 9:30 in the morning and ended nearly at 6 in the evening!
Mid November 2001
Bonga went for a check up by the plastic surgeon at 12:00pm.
Anna said: "We promptly arrived at five to twelve. The nurse on duty informed me then that the appointment should have been in fact at 12:30 because the clinic opens at one!
"So this is the system: EVERYONE is told to come at the same time, whether there are 10 patients or 50. Then every child who has bandages has the bandages removed by the nurse and the wounds covered by "clingfilm". And then everyone waits. There are no toys or books or magazines - just rows of very uncomfortable wooden benches. The only form of entertainment is a TV set that is permanently on - but without any sound.
"Although the clinic officially starts at 1pm the two doctors pitched up at 2pm. Bonga was examined at 2:30. The examination took 7minutes. We had been waiting for two and half hours by then.
"It is a complete mystery to me why everyone has to come at the same time and then wait for up to THREE hours."
[What Anna did not know was that only waiting two to three hours is good going in the SA state hospitals in 2001.]
The other children found his absence rather hard to deal with - especially Jacques - they miss him a lot and constantly ask about him. They want to know if he has new parents, if he has a lot of food to eat, has he got his own room, does he still live in South Africa, is he happy...?
February 2002
Bonga's operations - They told me month after month that they won't operate because of the wounds on his head and won't do anything with his lip either because there the problem is cosmetic rather than functional (in fact this is not entirely true - he may not dribble all the time, but most of the time his mouth IS open and he does dribble). Maybe we should try the private option.
Bonga's operations have been cancelled because of the quality of the original graft. But my worry is that it will just keep on splitting and the operation ill be postponed every time. Is there no other solution? Is it possible to give him another graft, of a better quality, before proceeding with expanders?
[Children of Fire urges hospitals treating severely burned children to plan for the long term and give them the best possible grafts early on.]
I realise that from the state medical services point of view, Bonga's lip and eye are really not a problem, but we want him to have as normal a life as possible: that's hard being hairless and with only one ear, one hand and one fully functioning foot.
How are the children?
Does Tristan behave with Dorah like with a sibling, i.e. get cross with her,
feel jealous? The reason I am asking is because out of my three Lydia and
Nicolas treat Bonga as a lovable baby and never feel jealous, but Alexei does.
He gets annoyed when Bonga gets special treats, like extra juice or something
equally silly.
We have discovered that Bonga is allergic to the
chemical colorants/ additives in things like jelly and commercial sweets. He
had a bowl of jelly at 5pm on Sunday and couldn't fall asleep until 3.30am! And
while he was whimpering and crying and tossing and turning I remembered that a
while ago he got a bag of colored "chemical" sweets at the hospital and it was
the same story. But ordinary cake, made from plain flour, eggs and sugar does
not have any effect on him.
Bonga has something that
looks like warts on his bad foot. He limps and says it's sore. I am worried
that if I put the usual anti-wart cream it might hurt him. Any suggestions?
There is no speech therapist at a "normal" crèche. He is of course
entitled to this service at Red Cross but the waiting list there is so long,
that he will become mute if we go that route. This means paying for a private
therapist, and normally that's R70 a go. Even if we find a sympathetic one, who
will charge less, it won't be for free. Bonga also needs a new insole for his
left foot, and all sorts of other things like that.
It is so complicated looking after this lovable little boy. But you know that because of all you have to do for Dorah.