15th Dec 2019 6:46:06 PM

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Children of Fire Bridging taboos, as thousands don't yet know the challenge they face

"Diarrhoea" is hard to spell and a problem that people now know is associated with 17,000 cholera cases in South Africa. But soiled beds and nursing incontinent adults at home is an increasing challenge. A significant percentage of the population will suffer such indignity as they die from AIDS. Bronwen Jones has been caring for incontinent 11-year-old Irene Peta and explains what it is like day to day and why it needs to be talked about.

"Shit" is a mild expletive, inoffensive to many. But human excrement is taboo. Having had it on my mind and in the air for several weeks now, I am going to write about this most distasteful of subjects.

First let me explain why I am in this situation.

I am acting in loco parentis for a little girl who lost most of her legs in a fire in Alexandra a decade ago. At the same time as losing her legs, she lost her parents. Other burn damage destroyed her sphincter, left her with no buttocks and scarred her elsewhere physically as well as emotionally. When I met her, she had one strong wish: to live without a colostomy. The see-through bag drained her body waste; an unseemly smelly sack that was always with her, hanging in front of her tummy. It was not meant to smell but it did.

So I sought medical opinion to see if improvement was possible. I learned that she had medical records at two state hospitals and that there was no way to send the records from one of the hospitals to the other, so that all the information and X-rays could be in one place.

I was reminded that I was not allowed to see her medical records, even though I knew I could not make any reasonable decisions without access to that information. I also knew that I needed time to read it and absorb the contents, as doctors seem invariably to have highly illegible handwriting and they'll always use a long word where a short one would do.

Eventually I secured a fat medical file with agreement of the appropriate authorities. I waded through it to find a huge amount of paperwork that no longer had any relevance at all to the child's life and some other paperwork that was quite inaccurate.

I talked to a surgeon who had known the child for a long time but he didn't care as he was in the process of emigrating. Eventually I found a couple of surgeons at another hospital who were prepared to try to improve the girl's life.

It seemed that the colostomy could be closed but that her bottom would not be able to work as it should, because there was no muscle to close the anus. It also became clear that her hip was fused, the muscle burned away inside, and that this meant that she could never sit upright and so, gradually, her spine was becoming more deformed.

A sphincter can, apparently, be replaced by taking muscle from the thigh and putting it in position. But I was told that there was only one doctor in South Africa who had this skill and that he was allegedly not nice enough to share his expertise. I was also told that it would not even be appropriate to consider such surgery until the child had finished growing; that it might be an option when she was about 16 years old. There are even curious devices like electronic sphincters but God knows what happens if one runs out of batteries. Do you block like a bad drain - or simply explode?

We went back to the drawing board. It seemed that the hip had to be dealt with and it was dangerous to operate in the area so close to the colostomy. After nearly a year of prevarication by people who were neither family nor doctors, the first operation went ahead.

For the first time in ten years, the little girl was using her bottom instead of a bag. She felt euphoric and then depressed, as not knowing when something would happen or not, was quite alarming.

But that was the first in an intended series of three operations. Next her hip was broken with the aim that for the first time since infancy, she would be able to sit on a normal chair and use a normal lavatory. Finally the third operation in this batch will be an appendicostomy. This will allow the child to live without nappies and to decide exactly when she wants to use the lavatory, as she will flush out her own system with a syringe-like device.

I am sitting in the time between operations two and three. Why is the little girl with me? Because she cannot live in a two-room township house with no bathroom, sharing a single bed with her grandmother, while she is trussed up like a chicken (in plaster and broom handles!) and defecating all day long.

But looking after her has made me think of a host of other people in similar situations who never talk about what it is like day to day. There are the paid professional nurses who work with the mentally-disabled, or with geriatrics. One sometimes hears terrible tales of cruelty to those in their care. Now I am less surprised at the stress they clearly feel. And there are families coping alone at home with no support from anywhere, not wanting to show their mother, father, husband, whoever, how disgusting they find their task. For the patient it is embarrassing to have no control and to suffer the indignity of smells and stains and reading the distress in the face of the caregiver.

Many AIDS patients in the final stages of dying have diarrhoea, and are too weak to leave their beds. But I don't think the home-based care courses explain the logistics of how families should deal with that. Of how a family of eight living in a squatter camp shack should manage to wash sheets daily and dispose of waste, without putting the mental and physical health of the whole family at risk.

The conversational taboo doesn't help. If you phone me up and ask how I am - and I answer that I am up to my wrists in shit, at best you'd think me vulgar. And you'd far rather I didn't talk about it.

But if you happen to be incontinent one day, be prepared first for the high cost of trying to keep clean. Your local pharmacy will sell you a box of 100 gloves and a big bottle of disinfectant. They will sell you "linen savers" at about R1.60 each. These are small plastic-backed paper disposable sheets that protect the permanent bedlinen - so long as your patient is not a child who wants to move no matter how much you ask her not to. And then there are disposable small adult nappies at about R160 for a pack of 20.

And then of course there's Vaseline and tissues and gradually, as the stench worsens, sinking into the immovable plaster, any manner of room fresheners and body sprays. And surgical masks that actually don't keep the smell out but you'll try anything that you think might just make it more bearable - even drenching them in eau de cologne before use.

In the case of the little girl with no legs, we can use between four and six nappies a day. The same number of linen savers and pairs of gloves. Sometimes she is bored and pokes through the nappy because she "had an itch" and there are more cotton sheets to wash. Sometimes the nappy tears, or one's glove gets caught on the sticky plastic nappy tabs and the glove tears. I am glad that the ban on plastic bags hasn't taken force yet, because I use an old shopping bag to dispose of the nappy and knot it inside another one with all the used tissues, washing rags, linen savers and soiled gloves - that's a minimum of eight plastic bags a day and usually many more.

The task is so unpleasant that, like the smell, it pervades the whole day. As I get up in the morning I know that I must scrub-up like a surgeon and go and clean the child. That after feeding her and maybe changing the whole bed and the mattress protector, chances are that she will have filled another nappy again.

One thinks terrible thoughts about giving the patient less to eat so that she might produce less waste. Trying to work out what she eats that makes the worst smell and wondering how to feed her something sweet scented like condensed milk, that might remain pleasant right through the digestive system and out the other end. I email the key surgeon to try to encourage a speedier resolution to the smelly stage but he seems not to receive it.

And so it comes to a Saturday night when, instead of any ideas of going out on the town, I think at about 8pm, how nice it would be to have a warm bath and settle in for the evening. But I can't imagine soaking in perfumed bubbles and then having to go and mop up adult quantities of poo. At 9pm she calls me to be cleaned. I fill the small tub with water and carry it to her bed. After about 20 minutes, everything seems shipshape except my second municipal waste sack is now full of nappies and there are no more sacks to deal with the next three days.

But no - she says - she needs to pee. I put a sanitary pad in place to hope that the expensive nappy can be saved. I watch her face in morbid curiosity - she has the satisfied look that people have in movies just after they've had good sex. Such pleasure from simple things. I clean her up again and am about to bid her goodnight, when no, she has filled another nappy.

It is well past 10pm before I can contemplate a bath for myself. I find I don't want to eat after cleaning her, as I always fear something could be left on my hands. Somehow the smell of silicon gloves and faeces remains in the air and almost on the tastebuds. Soon I will go to sleep and wake up to another day of the same.

I want to talk to someone about it. But it is not like parents of newborns who can discuss the colour and consistency and the regularity of their little treasure's bowel movements with others newly into parenthood. I want some miracle worker to knock at my door and say that they'll take over the nappies up to the next operation and beyond. But of course no one will make that offer.

And the other part of me is glad. There is no stronger lesson in humility than to have to clean away the body waste of another human. And there is no way in which I could have understood the dread and despair of people nursing their AIDS patients towards death.

My shitty time is at most, just a few weeks more, even if it doesn't feel that way. But what about the people who work with such patients all the time? What about the people who can't buy gloves and nappies and R120 mattress protectors for grownups? It doesn't bear thinking about - but bridge that taboo and think about it. PLEASE.


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