I leave Maseru on Saturday after a frantic week trying to pull together project logistics up here, from banking, to outreach visits, schools, and assistive devices. I check the ramp building at the school and then the APT chairs that I am supposed to be taking back to Leribe. Something is wrong with them, they are not the quality I hoped for and I can’t take them back. I think about the problem during the journey home, there is a new man helping with the chairs and I must ensure he is learning the correct processes. I call the APT trainer I know in Hlotse and arrange for him to return with me on Wednesday the following week.
Monday I am back on outreach visits with Mme Maja and we are on our last outreach visit of the morning. A family with two children both with cerebral palsy (CP), the parents convinced they have been cursed by witchcraft. Their son is 15 years old and severely disabled with spastic CP, uncontrolled epilepsy and kept hidden away in the hut. The first time I saw him I noted in his history that he also had dislocated hips and bedsores on the hips, about 3-4 cm. circumference. I got the OT to come out and see him on the second visit and prescribe him medication for the epilepsy and reinforce my message about positioning to avoid pressure on the ulcers.
This is now the third visit, and I am careful to avoid the rounded boulder by the front door which I stood on last time to take a telephone call. After the visit Mme Maja informed me that the first-born child was buried under it. I was mortified, but she told me not to worry as she had made the same mistake and sat on it the first time she visited. It was an easy mistake to make as you would never guess someone would bury their child literally on their doorstep.
Mum greets us tells us that the boy’s epilepsy is now under control, but she is worried about the bed sores. I peel back the blanket to reveal bed sores on the hips about 10 cm circumference, bleeding with dark edges, smaller ulcers breaking out on the insides on inside of the knees and ankles, his feet and penis swollen. I am shocked by his deterioration and after calling the OT we agree I need to get him admitted into Motebang hospital, get the wounds properly dressed and treatment for the infection which appears to be assailing his body.
His sister is taken to a neighbour and both parents come with us back up the hill, dad carrying the boy in his arms. Even though the boy is wasted it is still hard work carrying 30 kgs in your arms. I’m glad I don’t have to do it, plus I must admit to concerns about the open wounds and possible HIV contamination, despite being on my second pair of medical gloves and lathering myself with sanitizer.
We arrive at Motebang hospital, and I tell the parents to wait in the car while we try and find someone to help us. We have arrived just after 2pm but when we get to casualty, we find the nurses still eating lunch. They look annoyed at being disturbed, tell us there’s no doctors and direct us to another part of the building. We go down a long dirty corridor full of the walking wounded with bandages wrapped around different parts of the body. It looks like some of them have been waiting days to be seen and my heart sinks.
The next room we are directed to has more annoyed staff in it eating lunch who direct us elsewhere, and so the pattern continues for another two more rooms until we are back where we started in casualty. Staff now begrudging say we can wait in the adjoining room to see a doctor. Mme Maja goes back to the car to tell the parents to bring their son in. Time ticks slowly and I try and zone out because we might be here for hours. A lady eventually comes in a blue coat, and I ask her if she is the doctor, and she says yes. I try to tell her about the boy’s medical history.
She approaches the boy, then retreats deciding to put some gloves on. She approaches again and gingerly peels part of the nappy away to reveal a hideous ulcer. She rapidly retreats again and asks how old he is. “15 years old” I reply. She lights up. “He is not our responsibility. You must go to paediatrics.” Once again, we find ourselves in the corridor with the walking wounded and then in a small room rammed with patients, waiting for the door of the consulting door to open. Being British I don’t like jumping the queue, but Mme Maja encourages me to do so and virtually pushes me through the door. Next moment I find myself in the room trying to explain the boys’ story again.
The young doctor asks for his Bukana and satisfied says “This is an epilepsy clinic, and his epilepsy is now under control so he is not our patient” I start to plead with him “Casualty said you would help. Every person we have seen has turned him away.” He is very sick.” The doctor smiles and tries to calm me.
“I am going to help and will admit him for his wounds. I’m just not going to treat him. Now is there anything else we should know about him? How did he get these sores?”
“He has cerebral palsy, he is immobile, lies indoors all day on a mattress, has swallowing difficulties, and consequently is poorly nourished.”
“I see” says the epilepsy doctor, “That’s not right, is it?”
He points to the boy’s flexed elbows and wrists, typical of someone with spastic CP. I inwardly groan. Epilepsy is a condition commonly associated with CP, yet the doctor seems to know nothing about it.
“He has spastic cerebral palsy” I repeat.
We leave the parents to sort out the admission and say we will return the following day after visits, which we do. Both parents go back home overnight but mum returns at 7 am. She reports that the boy has a drip in is arm, his arm is swollen, he hasn’t been cleaned, or his wounds dressed because there is no water at the hospital. We go into the room where the boy is lying on a filthy blood-stained sheet due to seepage from his wounds. A huge pressure sore has opened on his elbow, and I can see down through several layers of tissue to the bone.
His body is general swollen. The drip, which is just glucose and electrolytes has run out. His epilepsy medicine hasn’t been given to him, or any antibiotics. There is an untouched tray of food left by the side of his bed which a posse of flies buzz happily around. The meal consists of several slices of bread, a lump of something brown, which might have been chicken in a former life and two cups of drink which look like pond water. Clearly the message that he has swallowing difficulties hasn’t got through, or that he is immobile and can’t just reach out and grab a slice of bread.
I feel a range of emotions which I can’t really describe but know that it won’t help to lose my cool. I step out into the corridor and see a man in some sort of blue uniform. “Are you a doctor?” He denies it but is clearly sort of hospital worker. I direct him into the room. “Look!” I point out the filthy sheet, the bleeding wounds, the fly blown food and the empty drip.
“There is no water” he says defiantly.
“Do you have another bag for the drip?” I ask.
He reluctantly goes to a cupboard and gets another bag of fluid. “Here, you change it” he thrusts it at me. “No, you change it”, I eye ball him. He sighs and does so and then to avoid answering my question, of whether he is responsible for looking after the boy, he decides to produce a clean sheet and nappy.
As he is now on a roll I ask for gauze and bandages, and he goes back to the cupboard and brings them. I dress all the wounds as best I can, and we change the nappy and sheets. Every time we move the boy he screams and cries, the wounds smell, and it feels like we are in some horror movie. At last it’s done, mum has brought some in some runny porridge and is able to give him a little food and drink. We leave and I give mum her taxi fares for the next 6 days. They are a very poor family and if she doesn’t come in and feed him no one will. I must go to Maseru the following day to set up a training course and I won’t be back until the weekend. I send a series of messages to the OT, imploring him to check on the boy and add my prayers.
We drive away. “Don’t ever let your son be admitted to this hospital, or any government hospital” I tell Mme Maja.
Then as an afterthought “and if anything, ever happens to me get someone to drive my car and take me straight over the border to South Africa. I wonder if I have made a mistake getting the boy admitted, so far its worse than him being at home. More messages to the OT follow over the new few days and the news improves. Finally, the boy is getting medication and the wound are being cleaned and dressed. Someone is even feeding him.
On Wednesday I return to Maseru with the APT trainer Mahlomola. By lunchtime we are at the workshop. After a brief introduction I leave them to it as I have meetings with principles at the primary and secondary schools. Its hard going crossing the school grounds as I am buzzed by the kids showing me various bits of broken wheelchair. The principals are totally on board with the work we are doing but there are other pressures all around and I must try to resolve these issues.
I return to the workshop to find that APT boards that the trainer has examined are faulty and the four chairs for Leribe will have to be scrapped. I am so glad I brought him up to sort out the processes and make sure everyone is clear about each stage. If made properly these chairs are incredibly strong, but if the processes are faulty they will fail.
On Thursday I work with Ntate Ntsukunyane to do physio at the school with the kids and get three old wheelchairs to work a bit longer by the tech teacher welding them back together again. At the end of the afternoon a deluge pours out of the sky and we are all marooned at the school for over an hour. Eventually we escape and can get back home.
Friday, I dash into town to get supplies needed by the project. I return to meet up with the high school principal and go with her to talk to the priest about the workshop we are hoping to have built at the school. The priest has the lurgy and coughs all over us and I must hope my immune system will cope. I think he is supportive of the project but you never can tell. I send papers to the lawyer to draw up a sublease agreement, before I am dragged away from other administration by a visitation with a boy in a wheelchair pushed by his mates. He only has two wheels on his wagon, can I fix it?
We tried welding it the previous day but its broken again. I tell him to return in the morning and we will go to Saint Angela and get an old chair off them. Next day we go up to Saint Angela, get a wheelchair that I replaced the previous week with a new one. It has four wheels, so it’s a good start and I use half a roll of gaffer tape to stick the back on. The boy is happy, does some tricks and leaves. I measure up another couple of kids for the wheelchairs for my next visit to South Africa. Sister then appears and I take the opportunity to ask her for the Bukana of a boy I am concerned has muscular dystrophy. My worst fears are confirmed as I read the results of a specialist appointment he has had.
The boy is only twelve and already in a wheelchair. This is the second boy I have come across at Saint Angela with this devastating progressive condition. I explain the prognosis to Sister, and she says she will inform the staff. She tells me she is leaving at the end of the year and someone else will be taking over. I don’t know if this will be the dawning of a new era, but we will see what the new year brings.
I go over to Abia high school to check on the APT training course. I have to crawl under the fence because the gate is locked. The course has been a huge success all round and I’m happy that the processes and knowledge behind them have been learnt. Big smiles, a photo opportunity, a beer and we are done. Mahlomola and I jump in the car and drive through the rains back to Leribe. Mme Maja messages me that the boy with pressure sores was discharged home this afternoon. We will go and see him on Monday on our visits and so another week will begin all over again, hopefully with less drama and a bit more relaxed, but you never can tell …
