Mes chers amis et ma famille,

I grow busier by the week as word spreads about the American. Some mornings, I show up and there are already half a dozen patients waiting for me; on the longest days, the list can grow past 10. With conversations occurring through one or even two translators (if the parent does not speak French), an initial visit can take over an hour, and infrequently I must ask families to return the following day. By my fourth and final week, I have grown familiar with the most common patient complaints, learned which medicines are most easily obtained, and begun to understand more of the cultural and societal problems the complicate treatment here. 

As there are no EMRs here, patients arrive with a small book shuffled between visits containing a haphazard patchwork of summaries from previous medical encounters. Yet due to a combination of illegible handwriting and foreign words, these books are almost impossible for me to read. I flip through crumbled sets of leaflets containing old prescriptions and try to form a coherent story of previous diagnoses. Often there will be medications like aspirin that shouldn’t be given to children, or others marketed as promoting “cerebral maturation” or “cerebral blood flow” that have not stood up to FDA scrutiny so are not sold in the US; patients will be regularly given scripts written at dosages for adults; once, a patient was on an anti-herpes medication with the family neither knowing what the mediation was for or what the herpes virus is; I’ve seen an autistic child prescribed drugs used to treat the dyskinesias of Parkinson’s disease so that the child “won’t be able to do anything.” The culture of Guinean medicine enshrines the physician’s word above all, and so it is not common practice to educate families on diagnoses, nor for the families to ask questions. 

Sometimes my job is as easy as adjusting the dose of a medication. Other times, such as when I’ve had to explain Autism Spectrum Disorder to a family who has never heard of it, the abundant paucity of health literacy becomes the problem. Generally, making the diagnosis or recommending a treatment is the simple part. I’ve had to re-learn much of how I practice medicine back home, where the plethora of sub-specialists and robust social supports enable me to offer the optimal treatments for each patient; the absence of genetic testing’s precision means little here. First, I must ask: will the family be able to pay for this test, and what medication can they afford? 

A not-quite-2-year-old with cerebral palsy and seizures is brought back in by his mother. He was the first patient I saw in Guinea, and since then, I’ve seen them at least once a week as she comes back with all his other health concerns. Every time they return, he’s only taking half of the medications I’ve prescribed. Mom once told me the patient is one of her seven children and she is one of her husband’s four wives; she says she does not receive enough financial support from him and so my best laid plans keep falling apart. 

Today, she says the patient has been crying, having fevers, and sleeping poorly. He is lying flat on an examination table squirming uncomfortably with an unseeing gaze that roves around the room. A thermometer clarifies that he doesn’t have a fever, but the foul smell of old urine emanating from a visibly wet diaper assaults my nostrils. Donning gloves, I find the patient’s foreskin unretractable and the head of his penis swollen and red. I ask how often she’s been changing his diaper. She says she puts a new one on when they leave the house but otherwise it’s the same diaper all day; at home, he doesn’t wear one and instead urinates into the oversized shirts she dresses him in. I tell her he has a local infection of the skin around his penis that is making him very uncomfortable. I prescribe topical creams and encourage her to change his diaper every time it is wet, or at least as often as she can. Yet as I watch them leave the office once more, I know that even this is asking a lot of them.

A husband and wife arrive with two of their children. The older one is a six-year-old girl with a history of seizures. When she is carried into the room by her father, at first, I don’t think much of their entry, as after all the sick children I’ve seen here this is not an unusual way for a patient to enter a room. The parents state that for the first three years of the patient’s life, she developed like any other child. Then around three years of age, she began having seizures and everything changed. They describe a pattern of gradual developmental regression, with the patient first losing the ability to speak, then interest in playing with her siblings, and now they worry she can no longer recognize them. Then the story grows more bizarre: they claim that each month, she spends ten days in an awake state, ten days having seizures, and a final ten days being “very sleepy.” I look the patient over again, eyeing the collapsed figure in her father’s arms with new regard, then ask to examine her.

The patient doesn’t stir as her father lies her on the exam table. I lift a toneless arm above her body, and when I release, it flops onto her chest. Her limbs are flaccid, devoid of the animating signals that descend from the brain to elicit muscle activity. I press the handle of my reflex hammer against first her toenails then her fingernails and am relieved to see that she at least withdraws to pain. Absent from the room is the sense of alarm I’d expect from the parents. As I begin to explain to the translator that I think the patient needs to be hospitalized, the child springs back to life. As if she had been struck by lightning, she leaps from her back onto all fours and looks around the room appearing confused but otherwise as if nothing had just been amiss. Between the parents’ reaction and her sudden change, I realize that this isn’t strange to them: the patient has been going in and out of seizures for years. I want to send her for an EEG and brain imaging to understand the cause of these episodes, but money is again an issue. I write her prescriptions for seizure medicines and entreat them to start giving her medication today, and then give them scripts for testing. Starting treatment will be as much as we can hope to accomplish for the moment; the other studies will have to wait. 

The second patient is then carried in by the mother. He has the shrunken frame of a visibly malnourished child, and my heart cracks when I hear that he is three years old. They begin his story by stating, “he cannot eat, he cannot speak, and he cannot roll over by himself.” The father has 15 children among three wives but his youngest is different from all the others. Born small and hospitalized several times in the first year of life for nasogastric tube feedings due to poor weight gain, he has since been fed a diet exclusively of Cerelac – a wheat-based Nestlé product designed as a complimentary baby food, but all too often the sole source of nourishment given to children with feeding difficulties here. They say they hoped the American doctor would evaluate their son and help him develop like their other children. I look over his frail body, tiny in his mother’s arms, and it is not difficult to make the diagnosis. On a scale, he weighs as much as a healthy 6-month-old; on the examination table, he looks back at me through eyes that cry with hunger but appear glazed over from having their tears unanswered. 

I hold him by his arms, lifting gently from the table as his head lags his body. I assess his muscle tone and probe for reflexes that appear after birth but gradually disappear as the nervous system matures, and then hand the child back to his parents. His brain development is akin to a 7- or 8-month-old, his body development already eclipsed by that of a healthy 2-month-old. I state as simply as I can that he is not developing because his body and his brain do not have the fuel they need to grow and mature. I explain that I am not going to prescribe him medication today because the treatment for him is food; he needs to see a nutritionist. I share the information for my colleagues in Dubreka and will later reach out to them for an urgent referral. As the family leaves, they thank me several times for helping their two children. While I struggle to understand why a family would continue to have children they cannot afford to feed, I try to cultivate the understanding that they are doing the best they can. As I watch them go, I believe that they will make it to Dubreka, and I hope that they will keep going back.   

When I leave, I wonder what will happen to the children I have cared for here. Having set them on a path, I hope that they will continue to get the care they need – but we are only as good as our follow-up plans in medicine, and I worry that when I’m gone, my work will not be enough, and they will stray. Who can hope to build anything lasting in a month? It is not my burden to carry alone, but I have yet to identify a resident down here who is interested in continuing to follow these patients. I must think smaller; I must remember that each small goodness I do can still helps alleviate some of this suffering and, perhaps, endure in other ways.

Bien à vous,

Le Gringo

///