Mme Maja goes on ahead to the home while I dash back down to the car having forgot an assessment sheet. Its Monday and we are on our second visit of the day and the first day of outreach visits since I arrived in district of Leribe. The few days I have been here have been a whirlwind so far, making new contacts, trying to sort accommodation, and now visiting a whole new group of families and children. I’m excited, there seems to be so much potential here for improving the lives of children with cerebral palsy.
The first visit of the day has gone well. A boy with a cheeky smile and good prospective for improving his milestones and independence. We leave the house ladened down with two large bags of dried beans the mother has farmed. Now, having picked up my assessment sheets back at the car, I jump across some bog and briskly walk back down the track, enthusiastic to meet the next child. I am soon at the small homestead Mme Maja has pointed out to me. I can see it’s a very poor compound with a few single room huts, and a rickety cage of sticks housing a few chickens. I go through the open door of the hut where I can see Mme Maja sitting and cheerfully greet the old lady and man inside. The old lady, who I presume is the grandma, sits on the bed despondently while grandfather pokes the fire.
Mme Maja clears her throat, “So I have learnt just learnt the sad news that the boy has passed on Friday.” There is a pause, the grandma starts to sob, and I spontaneously cross the room to hug her. I can’t pass on my condolences in her language and its all I have to offer her. It’s only a brief moment and then I sit down on a bench, looking at the earthen floor while Mme Maja talks more to the grandma.
The mother passed away 10 years ago when the boy was about six and since then the grandma has been the main carer for the boy. He was severely disabled with spastic cerebral palsy. He grew out of wheelchair he had years ago, and since then has mostly been lying on the bed, unable to sit up as his contractures grew worse over the years. He suffered a lot from vomiting and from what Mme Maja translates of the grandma’s story it sounds like his death was due to asphyxiation, the grandmother only realising something was wrong because she noticed his twisted limbs had finally relaxed into a more normal position.
Time passes in slow motion, and I continue starring at the earthen floor trying to imagine the boy and grandma’s life over the years, but its impossible. Eventually Mme Maja suggests we leave, and we take the boys old wheelchair with us. It sounds a little heartless, but its pragmatic way things work here, there are so many children with disabilities and so few wheelchairs. The boy’s father also lives in the compound and brings the old wheelchair down to the car for us. It’s a Shonaquip wheelchair, specialist designed and built to last. South African charities sometimes supply them for the children in Lesotho when they are young, but once they grow out of them it seems difficult for older children to obtain a larger size.
I start the car and we carry on to the next visit subdued. Its only ten minutes down the road to the next child who is three years old, has no assistive equipment and spends her day on the floor, or on the bed in the small tin hut we are in. By the end of the visit, it has struck me she looks the perfect size for the wheelchair we now have in the back of the car. We go with the parents to look and sure enough it fits the girl beautifully, it’s in great condition and doesn’t even need to be repaired.
I take a picture of the proud family and her in the wheelchair. It will change all of their lives for the better, but the moment is bittersweet. We drive on and I take Mme Maja back to her home to assess her son, who I have only met briefly. He is totally dependent, severely disabled and keeps vomiting. Despite all this he has a happy disposition.
While I try to take a history, he starts coughing and a huge amount of viscous phlegm ejects from his nose and mouth. I wonder that maybe as he is so sedentary his lungs are full of secretions and decide to try some respiratory physio to see if I can loosen them. There is just enough room to get him on the floor in the small room and do some vibs and clapping over the chest wall. Nothing happens for a bit, then suddenly he starts being sick and I find myself kneeling in a huge pool of undigested porridge.
He had breakfast over four hours ago and from the evidence I am now kneeling in it appears that because he is so immobile, he has a problem digesting his food. He is also constipated so I guess it reaches a point where if it can’t get out one end it comes out the other. All I can suggest is they feed him smaller meals to give his digestion a chance to work, and we try and build him an APT chair as soon as possible. He has an old one which is at the grandmothers and too small for him and his present slumped position on the settee surrounded by cushions, is certainly not aiding his digestion.
I finally arrive back at the guest house which I am temporarily staying at while I find somewhere to rent. It takes me ages to do my notes as I can’t focus and when I finish, I wash and clean up the dried beans I was given in the morning, which have a selection of grit, straw and vegetation in them. By the time I’ve done that they still need well over an hour to cook so I give up and open a tin. Beans on toast, so quick and easy, you can beat it wherever you are in the world.
Tuesday dawns sunny and bright as usual. The first boy we see is called Ben and has a hemiplegia. He is 10 years old and very interested in the toys I have. It’s such a relief to engage with him as many of the children I see have profound intellectual disabilities and are difficult to interact with. Play is always the easiest way to do physiotherapy, but the children need to be interested in the toys first.
Soon we are having a ball, Ben kneels against a chair, using the seat as a table, where I place the toys which he plays with while strengthening his core muscles. As I dig into my bag of tricks I come across a mouth organ, which I have never used and had completely forgotten about. Ben already has a shaker on the seat in front of him and I wonder if he can use the shaker while I play a tune on the mouth organ.
He does and gets it straight away, he’s in time and humming along to a tune he’s never heard before, I’m just making it up as I go along. It’s a magical moment of musical connection and he even anticipates the ending with a theatrical outstretched arm and shake of the shaker. Brilliant! I am absolutely made up by his performance.
We go outside to see him in his wheelchair. Two things are immediately apparent, his wheelchair is too small for him and the access in and out of the house is a three-step nightmare. Like many children with disabilities in Lesotho he lives with the grandparents while the parents’ work. Granny is struggling to walk, let alone get a 10-year-old in a heavy wheelchair up and down the steps. I ask whether the grandpa can get some cement and turn the steps into a ramp.
Grandpa is called and it takes him about 30 seconds to agree he can make an improvement on the current situation. You would think it would be obvious but sometimes these things must be pointed out. Reluctantly I leave Ben’s house, I could have played with him for hours. The rewarding time I shared with him sustains me through the next two difficult visits. A four-year-old and a one-year-old, both blind, both with microcephaly and severe intellectual disabilities.
The four-year-old is obese and already 25 kg and a struggle to lift. He’s diet sounds okay, but he is obviously eating far too much. I point out to mum that at this rate they soon they won’t be able to lift him, and without a hoist it’s going to be a problem for everyone. I suggest she cuts down his portion sizes and leave her with the goal that he doesn’t put on any more weight in the next couple of months and starts to become a more normal circumference.
The little one year old girl in contrast is tiny, has swallowing difficulties and becomes very distressed whenever mum tries to feed her. Swallowing difficulties have featured prominently in the children I have worked with over the years in Lesotho, and I have longed for a speech therapist to advise at times like these. There isn’t one so I must use what knowledge I have combined with a little common sense.
I put myself in the one-year-olds place. If I was blind, had little understanding of the world and swallowing difficulties, being fed spoonsful of food must be a terrifying experience. I suggest to the mum she choose a time when her daughter is relaxed, and not too tired and see if she can give her some tasters of food on her fingers, before even trying to feed her. Then try tiny amounts, make sure she is positioned well, the mouth is clear before she tries another spoonful, and make sure she has plenty of time and patience. Mum nods, she’s a busy policewoman, but at least she has a carer to help.
More visits follow on Wednesday, we spend a fair amount of it lost, as there is sporadic network and lots of missed calls from the mother trying to direct us. At one stage I think we might end up in South Africa, but we finally see the mother waving by the side of the track to direct us to the house. During our meanderings in the day, we pass close to Mme Maja’s mother in-law and pick up the old APT chair that her son has grown out. We also pick up his old wheelchair and take it back to Mme Maja house when we finish our visits. With a little adjustment it still works for him and certainly puts him in a better posture than slumped on the settee. It’s a happy ending to the day and I arrive back at the guest house to find the lovely lady in the kitchen has been boiling my beans for hours, so at last they are finally ready to eat!
Thursday is clinic day. Mme Maja facilitates a clinic at the local hospital for mothers and children with CP. Mme Maja’s son was born with CP and back then she had no knowledge of his condition or how to treat him. When he was six, she met organisers of Malamuele Onward, a South African organisation, based in Johannesburg, committed to improving the lives of children with disabilities in rural communities. Mme Maja went on a residential course to Johannesburg with her son to learn about CP and how she could best assist him as he grows up. Now she works as a volunteer facilitating the weekly clinic at the hospital, training, and transferring the skills she has learn from Malamuele to other mothers.
There are seven workshops in the Malamuele carer-to-carer program she runs once a week on Thursday. The seven-week cycle began last week with workshop 1, What is CP? Today is workshop 2, CP as a way of life, explaining to mothers how CP is a lifelong condition and commitment. Children with CP can change in a positive or negative way over time, depending on how they spend their day and mums learn about how to help their children in a positive way. It’s a brilliant initiative, passing on knowledge and skills to these mothers when there is so little help available to them. From what I gather there are four district hospitals running this program in Lesotho, but not in Maseru district where I have just come from.
At today’s clinic there are over a dozen mums and their children sitting on the floor of the physiotherapy outpatient room at the hospital. Most of the children are quite young, with at least four babies present, but surprisingly it’s not too chaotic. Once the learning session is over a practical session using massage begins, while I start to assess individuals. While the workshop provides a good foundation of knowledge for the mums, I can provide a more specialised assessment of their child’s individual needs.
I commence with a one-year-old who I notice mum struggling to feed at the back of the room. Her Bukana (medical book) is already thick with notes. Doctors think she has dwarfism, brittle bones and CP. She has a fractured arm, burns to the stomach (when mum accidently split boiling liquid) and is undernourished. She is very fragile and it’s difficult to know where to begin with her multiple problems. Her muscle tone is stiff, she can’t sit and has poor head control. I decide to start with some basic positioning and feeding advice, nutrition is a fundamental need, but at times like these I wish I could call on a multidisciplinary team like I had access to back in the UK.
By the time I’ve finished my assessment the next three babies have fallen asleep and everyone else has gone home, except a 7-month-old baby who arrived late. Mum brought her on the advice of a doctor who was concerned that she had delayed milestones and might have CP. From looking at her she might be a bit behind but there are no signs of CP. I show mum some simple activities she can do with her daughter to help her achieve her next milestones. Given time and encouragement I’m sure this little girl will do well.
I’m already tired by the day’s events but we go out to visit two more small children, both with hydrocephalus, living in the same single room house. The mums and their children are all lying on a couple of mattresses on the floor when we arrive. Both children have enormous heads, despite having shunts. I think this is because children must go to South Africa for this operation, so it always takes more time than is ideal. The two-year-old is unable to support the weight and size of her head and cries a lot when we try and support her with rolled up towels in a sitting position. We need to let her rest and lie her down on her side. Eventually she will get stronger with short amounts of activity every day, but it’s going to take time.
The three-year-old has some head control and can sit up with support. He’s a bright little button and chatters away. He only has use of his left hand, so I give him a shaker and we play a little music together, which is fun and makes him smile. Unfortunately, his right leg has been very painful for the last few days and he won’t let me touch it. I fear he has dislocated his hip and I tell mum she must take him for a scan tomorrow to investigate the cause of his pain. Throughout the visit both mums are joking and upbeat, and I leave wondering how they remain so cheerful in the dire circumstances they are living.
On Friday we see three older children out in the community. Visits to older children can be very difficult as unless they have been well looked after over the years, with good positioning and stretches they can develop severe contractures, as in all the cases this morning. The other problem with older children is they get heavier and difficult to lift. As there are no hoists to assist parents, older children and adults can often spend the rest of their lives indoors if they have no wheelchair.
The first teenager has spastic CP and spends his life in a tin hut, either on the sofa or mattress on the floor. I think with careful padding he could possibly fit into a standard wheelchair, if I can get hold of one, then at least he could access the outdoor area. The second boy had a road traffic accident when he was six resulting in a severe head injury. He subsequently had seizures and has never walked or talked since. His tone has increased over the years, and he has developed contractures.
We arrive to find smoke coming out the door of the hut as the family have lit a fire inside and there is no chimney. The winter mornings are very cold here and the family appear to have decided smoke inhalation is preferable to freezing. Eventually mum and a sibling carry the 15-year-old outside and put him on the ground with some rolled up blankets. The boy stares vacantly, his eyes flitting with nystagmus, his arms and knees flexed with increased tone, one of the ankles deformed and dislocated.
If there is even a small glimmer of hope to improve his life we must try. He is lifted into a plastic garden chair so I can take measurements for an APT reclining chair which I send the back to Maseru for Thato and Ntseliseng to translate into a cardboard chair. Hopefully this will improve his sitting posture, stop further contractures, reduce future complications and maybe even allow him to be brought out into the sunshine.
The final visit of the day is a 21-year-old lady with spastic CP and intellectual difficulties. She lies on the settee flapping her hands infront of her face and making chirping noises. When I remove the blanket, her pelvis is rotated and her legs “windswept”. This means the whole spine is starting to rotate, personnel care becomes challenging, digestion difficult and sitting up almost impossible. After trying for 20 minutes with blankets and pillows we slightly improve her position on the settee. I doubt if we can reverse what’s happened, but maybe if they position her more carefully it will stop things getting worse in the future.
By the time I finish my notes and do some follow up messages it’s been a long day at the end of a long week. Seeing new patients every day and doing assessments all the time is demanding. Fortunately, there are bright moments to lighten the load, Mme Maja has been a great help, we’ve had some laughs, and it will get easier once I start to do the follow up visits. Leribe district is proving testing, there are a lot more babies and infants to see here than in Maseru. It’s not my area of expertise, but the younger the child the more potential there is to have a positive impact on their development and give parents the right information from the start. I’m learning fast and I am up for the challenge.
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