Irene had a skin graft placed just above her right hip on Wednesday July 11th 2001. The skin was taken from a donor area on her left thigh. If the graft takes well, she will be discharged into the charity's care again on Monday July 16th. The purpose of the operation was to release the keloid scarring and contractures that, among other factors, still prevent Irene from sitting easily.
Irene is a cheeky young lady aged 12, but with the vagaries of South African record keeping she is probably two years older. There are conflicting hospital records and we guess that well-meaning people may have found it easier to get her into school if she appeared to be younger on admission. Irene was burned at the age of 11 months in a shack fire. Her mother and father died in the fire.
She goes to the Hope School in Parktown, Johannesburg. Irene typically stays with her grandmother Maria in a two-room house in Alexandra township, once a fortnight. And Irene sees her sister once a year, in the rural areas near Pietersburg.
Irene lost most of her legs in the fire, and her injuries were such that doctors kept her on body waste bags for the next decade. Irene hated the bags and said they bothered her more than being in a wheelchair. Her left leg bones grew as the amputation is below the knee, and so had to be sawn off periodically because skin growth didn't keep up with the lengthening tibia. The remains of her right leg were wasted through lack of use and through the hip being fused. This came about largely by no plans being made for physiotherapy when Irene was small, and no understanding of such matters by her illiterate grandmother.
The charity organised for Irene to be examined under general anaesthetic in early August 1999 and arranged for Irene to have her colostomy closed in March 2000 at the Johannesburg General Hospital. Unfortunately ill-informed outside intervention prevented the intended operation in March and it took until September 2000 for the Trust to secure in loco parentis authority to be able to assist Irene fully. In November 2000 her colostomy was closed by Dr Peter Beale and in December 2000 Professor Einhard Erken broke the bones in Irene's right hip and re-set it at an angle of about 50 degrees. Dr Mark Eltringham was also involved in consultations.
The intention remains to improve Irene's posture and her long-term comfort. The colostomy closure requires Irene to wear small adult-size nappies as she lost her sphincter when she was burned and so only has partial continence. The nappies cost about R160 for a pack of 15 and were funded by the charity for some months. Irene lives with trustee Bronwen Jones between surgery, as her grandmother is old and frail and it is difficult to keep the home environment clean.
After Irene's hip resetting, we considered an appendicostomy. This would allow Irene to use a normal lavatory and to flush-out her own system at a time of day that suited her. She would then not need nappies and would not need waste bags. The disadvantage of such a procedure, we learned, are the small opening through which a little tube would pass, frequently can become infected. And the home in Alex has no bathroom.
We had also considered giving her an artificial sphincter when she became a young woman, but learned that Irene does not have enough bottom left to hold such a device.
We then consulted gastrointestinal specialist Prof. Julian Oettle at the Helen Joseph Hospital in Johannesburg, who advised that a regime of several medicines could regulate Irene's sytem in such a way that she might eventually not need nappies at all. Instead she would be intentionally constipated and would be able to feel her bottom "working" again for the first time in years. A very low level antidepressant would be used to relax the appropriate muscles. The problem with this medical regime has been Irene's poor "compliance". Essentially when Irene is at school or with her grandmother she tends not to take medicine as prescribed. So we are not yet certain of how well the medicine can work in the long term.
Irene is currently getting the medical supplies that she needs through the state system, but it is not easy. The charity has to collect the medicines. Whatever is prescribed by Prof Oettle is not what is dispensed at the dispensary. It takes a minimum of three phonecalls to get the right file delivered to the dispensary and then the correct material is not handed over. Once she was given a medicine that does exactly the opposite of the one that was actually prescribed. Only by the charity always checking drug names in an appropriate text book was the dispensary's error recognised and the substance changed the next day.
It typically takes five hours to queue for medicine at Helen Joseph Hospital. The charity approached the authorities and has now been given permission to collect supplies more swiftly but this still doesn't overcome the problem of having to make several journeys to secure one month's full prescription.
TThe charity is looking at the possibility of building a wheelchair ramp and a small bathroom onto the little Alexandra house, as currently there is only a watertap in the yard and sewerage is tipped from potties into a pipe in the ground. We are looking at cost, design around the dimensions of a wheelchair, and at municipal regulations. A local councillor offered to assist in late 2000 but by July 2001 had done nothing.
Irene says she does not like staying with her grandmother at weekends because her aunt sells beer from the little house and there is no private place for Irene to clean herself.
Irene had prosthetic legs with which she used to walk but this was not possible while the tibia protruded, because the legs are too painful to wear. She could not sit down with the legs on; and even with the legs off, until her hip was reset, Irene slumped like a sack of potatoes on a sofa. Her old wheelchair had to be sawn in a special shape to allow her to even sit reasonably upright during lessons.
Choosing to reset the hip means that Irene will not wear her legs again. But Irene said that she rarely wore the legs, except sometimes in Alexander as her wheelchair cannot fold and so was usually left at school. When we arranged for the wheelchair to be transported to her home, Irene's grandmother objected that it took up too much space.
The charity is looking at the possibility of funding an electric wheelchair for Irene. They cost in the region of R20,000 but more research is needed as to maintenance and transportability.
ThThe charity funded a chairliner for Irene in May 2001, especially moulded by an occupational therapist, to fit her current body shape and to try to help her sit with the optimum posture. Irene was reluctant to wear the straps that helped her sit upright. We anticipate having to fund an improved version of this in August 2001.
While it is no longer an option for Irene, any research papers on the construction of artifical spincters would be appreciated or on the techniques required to use and place an electronic sphincter. They should please be emailed to firechildren@icon.co.za Medical research into protruding bones of amputees would also help us to help other children.
A local supermarket, Pick 'n' Pay, buys some clothing for Irene, through the kindness of its employees. There is no guarantee that this can continue throughout Irene's life, especially as there is usually little active public sympathy for disabled adults.
Her grandmother's home is so poor that Irene had to share a single bed with Maria. Through the Hope School we managed to secure an extra bed for Irene in mid 2001 but her grandmother complains that it takes up too much space. There are space-saving beds available for less than R2000 that could be a viable alternative. The house has electricity but the wiring looks lethal.
The charity has discussed the idea with Irene that she might one day be able to share a house with another trust beneficiary, Dorah Mokoena. Irene liked the idea but is far too immature to make such a commitment yet. For now she likes pop music, boys and television.. especially all the soapies. Her mid-year school marks are reasonable but not brilliant. What is remarkable about Irene is her feisty nature. She will not let herself get depressed about her disabilities and she is always ready to make a joke and fool around.