“The most we can do is to write — intelligently, creatively, critically, evocatively — about what it is like living in the world at this time.” Oliver Sacks. “To take a photograph is to align the head, the eye and the heart,” Henri Cartier-Bresson
If you have been following my contributions to Thursday Doors over the years, you will know that I do voluntary work as a doctor overseas. Last year I was working at Kakumbi Rural Health Centre in Eastern Province, Zambia. It was distressing to see the lack of medical care for people with severe mental illness, schizophrenia and bipolar disorder. Their families would look after them as best they could; but if the patients became violent or started destroying property, this support could end. Patients would roam around the village, clearly very disturbed, behaving inappropriately (throwing stones at vehicles, wandering about naked).
Unfortunately, the Zambian Health Service has been unable to provide medication to treat this group of patients. I started treating them using very basic psychiatric medication which I bought from a local pharmacy (with some financial help). These patients need long term medication and if the supply were to stop, they are likely to relapse and become very unwell. So last year I asked my friends on Facebook if they would like to contribute and I raised over £1000. All this money has now been used up, purchasing medication locally for over 20 patients.
Drs Keith and Ginny Birrell (from North East England) are currently volunteering in Kakumbi. They have expanded the pool of patients to include people suffering from epilepsy and children with learning disabilities. Some of their anecdotes follow:
They have treated a 14 year old boy suffering from epilepsy which was so disabling that it prevented him from attending school. With medication, he is now almost seizure-free and is keen to start school (although he will be twice the age of his classmates in Year 1).
With anti-psychotic medication, a 49 year old woman, who suffers from chronic schizophrenia, is no longer having hallucinations or having violent outbursts.
Walking and bicycling are the main ways people get about in rural Zambia. Cycling can be very dangerous for people living with epilepsy, but with regular medication seizures can be well controlled (if the patient feels an epileptic attack coming on, they have been trained how to stop, dismount and lie in a safe place). Being able to ride a bike because their epilepsy is well controlled might seem trivial, but to this group of patients it is a major improvement in their quality of life.
When patients are stable, Dr Keith is trying to reduce the dose of anti-psychotic medication – to reduce side effects, not to save money!
I am hoping to raise £2,500 to buy medication for this group of vulnerable and disadvantaged patients. (I have donated £100 instead of sending Christmas cards this year.)
Patients with seizures can be like buses; there are none for ages, then two appear within minutes of each other.
This morning, Loveness, a 10-year-old girl, limped into the clinic with her granny. I was surprised to see that Loveness had a left-sided hemiplegia. Her granny told us that she had had a stroke following a bout of severe (“cerebral”) malaria when she was two. She had recently moved with her mum to live at her granny’s house, which was in our catchment area.
It was difficult taking a history because of the stigma of seizures. Local people think that a seizure is a sign someone is bewitched and that the evil spirit inside the sufferer might escape and enter anyone who tries to help. Granny gave very guarded answers to our questions.
A detailed history is absolutely essential, with a reliable witness able to describe exactly what happens during a seizure. It is important not to ask leading questions, as patients often want to “please” the doctor by answering in the affirmative.
Loveness started having seizures spontaneously in January 2020. She had an aura, a sensation which precedes an attack; she felt someone was pushing her. She would fall down, unconscious and rigid, following which her whole body would shake for a few minutes. She had occasionally bitten her tongue and wet herself during a fit. She had been having about three convulsions per week since January, but recently she had experienced three in one day. The seizures were becoming more prolonged. Her granny sought help at the health centre because of this deterioration.
Zambian children in the health centre are often very subdued. Some are frightened of a muzungu (white) doctor, but they usually refuse to answer questions, preferring their carer to give the history. I needed to examine Loveness’ central nervous system, and this gave me an opportunity to engage with her. I like to squat or kneel, so I am at eye level with the child. I even take my mask off so that they can see my facial expression. If I can make the child relax and smile while I am gathering information, that’s a bonus. We played games while testing her cranial nerves, screwing up her eyes, blowing out her cheeks, showing me her teeth, watching my finger moving in all sorts of weird directions. She had lost the use of her left arm and her left leg was stiff (hypertonic), with limited movement.
I came to the conclusion that the cause of her seizures was organic brain damage/scarring caused by cerebral malaria; she has epilepsy. In the UK, she would have seen a paediatric neurologist, had multiple scans and electroencephalograms, perhaps even being considered for brain surgery. Here in rural Zambia, we have two drugs to treat epilepsy – phenobarbitone and carbamazepine. The latter has fewer side effects but works best in temporal lobe epilepsy. We decided to try it and I will see her in the village next month during the community child health clinic.
I have some diazepam for rectal administration, to halt continuous epileptic convulsions, an emergency. (The drug is extremely effective but out of date and I can’t bring myself to throw it out because I cannot get any more.)
Just as we finished explaining the management plan to granny, the registrar told me that a baby was having convulsions now in the waiting room.
Agness was just four months old, but her disabled mother felt that breast milk was not providing her with enough nourishment, so today, for the first time, she fed her some pap – a thin, maize meal porridge, with cooking oil, sugar and salt. She didn’t use a spoon, but cupped the pap in her hand and poured it into Agness’ mouth. Health educators advise against this traditional feeding technique when giving educational talks in the villages. I don’t know why she didn’t use a spoon. Perhaps she was too poor to afford one.
Agness stopped breathing as she inhaled the pap into her lungs. She had a seizure, probably caused by lack of oxygen reaching the brain. The mother said that she had convulsed for an hour, but I didn’t consider that was reliable information, as she had no means of telling the time. The baby had regurgitated some of the pap.
The baby was extremely distressed, breathing rapidly at 76 breaths per minute, with inspiratory wheeze (stridor). I couldn’t hear any sign of any pap still in the lungs. She was not cyanosed. I don’t have a paediatric pulse oximeter to measure the saturation of oxygen in her blood. We calmed the mother and grandmother down, and Agness was able to breast feed intermittently. It seemed to give her some comfort.
Aspiration pneumonia is very tricky to treat. There had been some cooking oil in the pap, and this could cause lipoid pneumonia. Although initially, children may appear to be recovering, their condition can deteriorate a day or so later. We don’t have oxygen at the health centre. Intravenous antibiotics would normally be withheld for 24 hours to see if the baby is going to recover spontaneously.
The baby was now breathing at 60 breaths per minute and looked more comfortable. I thought we might be exiting the woods, but on reviewing the child after lunch, it was clear the child needed oxygen and more care than we could provide. I organised a transfer to the local hospital (I have since learned that the baby has made a full recovery after a week’s admission).
In this blog, I write about and post photographs of the wonderful variety of animals and birds in South Luangwa. I don’t want to give the impression that I am just having a fabulous time on safari for three months so I include pieces about my work and clinical problems I am trying to manage. WordPress statistics tells me that clinical pieces are popular, too.
But it’s probably obvious to some of my readers that my writing about these tragic cases helps me to cope with my own feelings and emotions. Extracting and transforming my sadness, frustration and helplessness into words on a laptop screen is cathartic. And in the words of the BT advert, it’s good to talk.