Blog 16: Heads

There are around 180 children at Phelisanong and amongst these, a great variety of head shapes and sizes. I thought I’d seen every kind there was to see, until I came across Keneoue. This little girl arrived a couple of days before I did and when I peered into her cot I was shocked. All I could see was a spherically shaped skull with a bulbous forehead which looked like it had been crushed with a meat cleaver, a furrow going right down the middle of the crown.

She was obviously very sick, with weeping pink bed sores on either side of her head. Apparently, she had spent nearly all the 19 months of her life in hospital, until last week she was discharged and sent by the ministry of Social Development to Phelisanong. Her poor health resulted in her being taken back to hospital and put on antibiotics. When I heard that a child had died on Sunday I felt sure it had to be her, but I wasn’t. She returned at the beginning of the week looking much better. Her brown button eyes were open and seem to be amazed at the world she now found herself in.

Keneoue means gift, but that name can’t have been given by her parents as she has been abandoned. There are hardly any details about her and it is unknown whether her ailment is an accident of birth, some genetic defect, or an operation that has gone horribly wrong. The staff are reluctant to pick her up, and feed her by squirting milk from a syringe into her mouth as she lays in her cot.

I look into the cot as I pass by one morning. I have taken to starting the day in the house with the most disabled children, where Keneoue now lives. Somebody has put a bottle by her side which she can’t possibly drink as her hands are tightly clenched into fists and she is unable to suck. I take a deep breath and decide to pick her up. Her head must weigh nearly 50% of her body weight, making it hard to support. Her body is ridged and only the size of a small baby, and slowly I manage to bend her knees and sit her on my lap.   

I can sense everyone is watching me, waiting for something calamitous to happen, and I try to appear more confident than I feel. I pick the bottle up and slide the teat into her mouth and gently press her chin with my finger, closing her lips, trying to stimulate her to suck. She makes a few attempts and then pauses, this continues over the next twenty minutes or so, and slowly she drinks a little milk. One of the house mother’s hands me a small bowl of porridge which I gradually get Keneoue to eat with the aid of a small spoon.

I wonder if anyone has ever cuddled this child or taken the time to feed her in their arms. Later that day Mamello (the Phelisanong manager) comes to the physio room with Keneoue in a push chair and asks me about how to hold her. It’s amazing that despite all the children at Phelisanong, nothing ever happens without escaping Mamello’s attention. She holds Keneoue comfortably in her arms, and we agree that with some TLC, Keneoue will hopefully have a chance of a better life than she has known up till now.

Despite her terrible start to life, Keneoue has already achieved more than some of the children here, in that at least she can swallow. Her next physical milestone will be head control. There are a number of children that have no head control, and the reasons for this vary. Presently I am working with two children, Marsala and Lesojane, who can hold their heads up, but they can’t keep it in the midline. They have a type of cerebral palsy called atheotosis. This means they have fluctuations in muscle tone, involuntary movements, and find it difficult to control and grade the movement of their limbs.

Lesojane is worse than Marsala, he is usually spoon fed by the house mothers while he sits on the floor, bracing himself with his arms. Marsala sits at the table and feeds herself using her hand, lacking the control to use a spoon. Neither child can walk, as when your head and arms are always writhing around, it is impossible to balance.  However, when these children’s heads are held in the midline and their arms fixed they can achieve all sorts of things. Now they both come to the physio room at lunch time, and when Marsala’s head is held she can use a spoon to feed herself.

Lesojane has also been able to sit at the table and feed himself, but he needs two people to help him, one to hold his head and one to guide the spoon. He can also sit at the table with the other children when they play, instead of watching from them from the floor, and he can fix his own head, using his elbows on the table. The picture I take of him and Marsala may seem unremarkable, but you can’t imagine how difficult it is for them to keep still and for me to get a shot of them both motionless at the same moment.  

He and Marsala can both walk with the assistance of two people, one guiding the head, the other the arms. If these children’s bodies get enough of the right input and feedback, they will both eventually achieve more independence. I just don’t know how long it will take and it is certainly very time consuming and takes a lot of patience and effort. Fortunately, I have been blessed with two helpers this time, Sylvia and Malineo, which makes my life a lot easier.

Even with two helpers I can only see about a dozen children a day, because the work is so intensive, and it’s totally new to me. Until I came to Lesotho last year I had never worked with children with cerebral palsy before. The work is complex, every child has different problems and needs. Upper motor lesions are out of my comfort zone, I normally work with adults in outpatients with musculoskeletal problems. However, most of the children I know from last year and I am better prepared, having had time to research their difficulties.   

There are more people around to help as well this year, not only do I have my two assistants but there are five people here from Canada and Nelson from Lesotho, who are involved with HIV education, music workshops and all manner of other business. They often pop by the physio room and the next moment are holding are holding an arm or a leg in position, or just simply playing with the children.

With so many children here the need for physiotherapy is a bottomless pit. I am trying to engage the house mothers as much as possible but it’s difficult. There is a high turnover of care staff as they do back breaking work seven days a week, are paid little, live in cramped conditions and have no training. They tend to do things in a way that makes their life as easy as possible, which is not always best for the children. I’m only going to be here five weeks so it’s easy for me to bust a gut for that time. I will be going home to my own house, van, and a three-day working week.

Things are not helped by the poor facilities here and lack of help from the Department of Social Development. The ministerial head of the department graciously pays a visit this week, as he did last year when I was here (blog 6). There is another election coming and the madness of around 250 million maluti being spent on this event by one of the poorest countries in the world. There are dozens of parties for a population of about 2 million, each party trying to grab a share of the money and power. The consequence will be that eventually another coalition government will be formed and the squabbling and infighting of the Lesotho government will continue.

Meanwhile Phelisanong has only a few broken-down wheel chairs left to try and transport the children over the over the rough ground to school. I meet the minister as I am coming out of the physiotherapy room. I am holding Tokiso under his arms, taking nearly all of his body weight, as I take him out to his walking frame. The minister offers me his hand and I stand there holding Tokiso, wondering if the minister expects me to drop him on the ground, so I can take his proffered hand.

Eventually I manage to sit Tokiso down and then shake the ministers hand as one of his entourage holds an umbrella over his head. I can’t think of anything to say to him, and tell him that I have go to walk Tokiso back before we both get drenched. The minister leaves in a hurry as the hailstones start. He has surely already spent enough time with poor people and orphans to win some crucial votes. Earlier he had visited the house with Keneoue in and asked who had bought her here. He is surprised to learn it is his department and promises he will try and find some more information out more about her. This week has been all about heads, strangely shaped ones, ones that won’t keep still and ones that I feel need uncomplimentary prefixes in front of them.