My last week at Phelisanong and there still time for some surprises. Little Katleho, aged seven, arrived here last Sunday having, up to now, refused to walk unassisted. She tore up and down the path on a walking frame I gave her and obviously had all the right moves but not the confidence to let go. I decided to walk behind her and gently hold onto her hoody. A few days later, when she was still under the illusion I was doing this, I let go and the rest is history as they say!
Much more dramatic for me was Limpho (pronounced Dimpho). I don’t have any medical background about this child. She is an orphan, severely physically and intellectually disabled. The house mothers think she might be about five years old, but she looks more like an undernourished two-year-old. She lives in the baby house next door to the physio house and spends most of her time crying in her cot when she is not asleep. She has worn away her hair from lying down so much and has a sore on her head.
Her little body is rigid with extensor spasm and she is almost impossible to feed as she gets so distressed by the experience of trying to swallow. If she was in the UK, she would have a peg and be tube fed directly into her stomach. This not being an option I have tried every sort of position and technique I can think of to feed her and only succeeded in getting a few teaspoons spoons of porridge into her in the course of hour. No wonder she is so undernourished.
She does stop crying when I lift her from her cot and one afternoon, I was giving her a cuddle and talking a load of baby nonsense to her, when she suddenly smiled at me, followed by a little chuckle. Honestly, I was so taken back I nearly dropped her, but a greater shock was in store. The following day I decided to try feeding her again and put her in the small Panda seat that I have brought here.
I’ve tried this technique before, tilting the seat back to recline her at a comfortable angle, while I gently assist her to open her mouth and take a small spoonful of Weetabix. This normally results in her clamping down on the spoon and the food just staying in her mouth to dribble out at the lips when the next spoonful is fed. To my surprise the food is gone, and she opens her mouth to receive another spoonful and another, until suddenly there’s nothing left.
The whole cup full is gone in less than 10 minutes. I can’t believe it, neither can the house mothers. Limpho starts crying, but only because we have stopped feeding her. The house mother quickly makes another cupful which Limpho consumes even quicker then cries for more. After the third cup I stop, this must be the largest meal this child has ever consumed in her lifetime and she is starting to look at little uncomfortable. I pick her up and gentle cuddle her to encourage the food to go down in her little distended stomach. She gives a large burp and then a smile as if to say, “just messing with you.”
I can’t really explain what happened. Maybe it was just that I felt very relaxed about the feeding which made Limpo relax and her muscles correspondingly relax. Maybe the angle of the Panda seat was exactly right, or maybe it was a miracle. The head house mother hugs me with delight, hopefully we can repeat the experience at every meal.
I put Limpho back to bed and prop her up in her cot so she can look around, wedging a blanket under her knees and between them. She has a dislocated hip, not uncommon in immobile children with cerebral palsy. Limpho doesn’t seem bothered by her hip and appreciates sitting up and looking around her, as does Bokang in the cot next door to her.
It’s another routine I hope the house mothers will pick up on, instead of lying children down with a blanket over the head to keep them quiet, giving them no chance of social interaction or developmental progression. Bringing about this change in routine would make a big improvement in the quality of life for children like Limpho, but it’s not easy changing the mindset of the care mothers.
It’s been a very emotional morning. In the afternoon I have training with the teachers, covering three areas; infection control, nutrition and epilepsy. The whole course takes less than two hours, but I find it exasperating at times, particularly trying to make it an interactive session. After talking about epilepsy I get them to have a go at putting someone in the recovery position. All the teachers have experienced pupils having major seizures as many sufferers are not on medication, either because it is too expensive, or their condition is undiagnosed.
The teachers are particularly coy about doing the recovery position and eventually I lose patience and tell them that they are not leaving the room until everyone has done it. Finally, it’s done, and class is dismissed. The teacher whose classroom it is chats to me as I tidy up. She shamefully admits to me that she was told that you could catch epilepsy from a person if they were convulsing and their saliva touched you.
I realise that the teacher’s bashful behaviour over the last two hours has been because they were worried about looking ignorant in front of their peers and were reluctant to say or do anything in case it was wrong. Also, they come from a tradition of chalk and talk, so participating in discussion was rather alien to them. Well tomorrow it’s training for the house mothers turn and I will certainly have to turn it down a notch.
The following morning training with the house mothers goes as expected. Mamello translates for me and Mme Elizabeth also attends, the new administrative coordinator. She understands the necessity of good hygiene and the need for hand washing, cleaning products, wipeable changing mats and hygienic rubbish disposal. I give her my notes on a flash stick so she can read them at leisure and produce some basic rules for the house mothers. I also point out to her the need to constantly monitor the situation and follow up any systems she puts it place.
I show her the current rubbish disposal system, which is basically a wall by the river where hundreds of festering nappies are piled up waiting to be burnt one day. She is outraged that her instructions haven’t been followed, I shrug my shoulders and tell her to always check with her own eyes that what she has instructed has been done. She gets my point. Its one thing paying lip service to any training I do, its another putting it into action. That’s why I keep going back to Phelisanong to reinforce everything I have done and slowly things are changing for the better.
Thursday morning and its goodbye again. It’s a cold misty morning and hundreds of people are crammed into the school hall singing, dancing and shaking my hand. I find it emotional and embarrassing. Mamello gives a speech and one of her favourite stories about me and a little boy who was bought here unable to walk. He was born premature and his mother died in childbirth. He spent a long time in hospital and the doctor said he would never walk.
When I saw him it was apparent to me he had delayed development and would walk given the right encouragement. Sure enough he did. It’s not the first time I have made such a prediction and for me they are unremarkable. It’s something I would expect any experienced physiotherapist to be able to do.
The value of such predictions being born out, along with consistently returning and practicing what I preach, is that it adds to the weight my words carry here. Things that I have asked for have gradually happened and training has had an effect. The cumulative effect has resulted in Phelisanong seeing the value of physiotherapy and now have their own full time physiotherapy assistant, who I have trained, a physiotherapy house which I have equipped, a flat path around the center, allowing children with mobility problems a chance to walk to school, children with swallowing difficulties are not fed on their backs, children are being taken out into the sunshine to play, and by having opportunities of regular physiotherapy children have a chance of greater independence and quality of life.
Hopefully one day people will routinely wash their hands, rubbish disposal will be hygienic, children with severe disabilities will be routinely sat up and have a chance of social interaction, nutrition will improve, children with epilepsy won’t be stigmatised. These are some of many messages I try and get across, formally and informally. If I thought about the huge number of problems to tackle it would be difficult to know where to begin, but when I see the difference it makes to individual children like Limpho, I know the work is worthwhile and needs to continue.
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