Etoile, the French for “star”, is used as a name here in DRC and, with its hint of magic and Saint-Exupery’s Little Prince, I’m going to use the name for a patient who’s very special to the staff and I at Lulimba Hospital.
I found Etoile in the hospital when I first arrived in October. Sharing a bed with other sick children, he made little noise, a bad sign on a paediatric ward. Aged 14 months, he weighed just 5 kilos. When he coughed, his arms and legs shook like twigs in a stiff breeze. The flesh over his rib cage was pulled so taught that I was unable to use my stethoscope to listen to his chest. Etoile was my first case of malnutrition and the measurements taken to work out just how badly malnourished he was were almost off the scale. We had no malnutrition unit when we arrived but we had with us some therapeutic milk so, together with Pierre Kiza, MSF’s specialist TB/HIV nurse, we started to treat this fragile little boy.
With the surge in patient numbers, it was a struggle to give Etoile the attention and care he needed. After a week of antibiotics, Etoile’s weight had dropped to 4.9 kilos and his cough was as bad as ever. Pierre, a gentle but determined nurse with years of experience, refused to give up and suggested we assess Etoile for tuberculosis. Looking at Etoile, you could immediately understand why the Victorians called the disease “consumption”, consuming as it had every gram of spare muscle on the child’s emaciated body.
I hesitated. If we were struggling to set up a malnutrition unit, could we really handle such a disease, which requires months of treatment and meticulous follow-up? Even if Etoile miraculously survived his malnutrition, I doubted they would they come back for follow-up as they lived 15km away in the gold mining town of Misisi, a costly journey.
I hadn’t reckoned on the determination of Etoile’s mother. When a child is admitted to our malnutrition unit in Lulimba, they now get a bed, a mosquito net to lie under, feeds every three hours provided by the nurses and their vital signs are monitored regularly. None of this was in place at the start. Pierre and I stole a thermos flask from the MSF base, gave the mother some charcoal to make a fire on the hospital grounds to boil water, gave her the sachets of F75 milk and explained to her how to prepare and give the feeds. Day after day, night after night, Pierre and I would find Etoile’s mother feeding her sick child, spooning small quantities of milk into the boy’s bony little mouth. She became an integral part of our malnutrition programme as she started helping and explaining to mothers how to feed the other skeletal children who started to arrive.
Neither did she blink at the lengthy course of TB treatment for Etoile. Over a hundred years since Mycobacterium tuberculosis was discovered, we still have no reliable test that can be used in a poor country setting to screen for the disease in children. We explained that, using a scoring system, we were making an educated guess that Etoile had TB and that we had very little to lose by starting treatment.
To understand tuberculosis, you need look no further than Etoile’s home town of Misisi. The town is one of DRC’s many hidden Klondikes. Above the town, thousands of miners scurry like ants in a jagged yellow earthen scar, an artificial valley, kneeding barehanded crushed earth with mercury in the hope of extracting a few shiny yellow grains.
The majority of patients who are admitted to our hospital come from the town, wherethe gold has multiplied the haphazard collection of mud huts that fan out from a wild-west main street offering beer, sex and more prosaic supplies like miner’s headlamps. The crowded living conditions, HIV (which has seen tuberculosis surge in Sub-Saharan Africa as an opportunistic infection) and the lack of access to health care provide ideal conditions for tuberculosis.
We started the anti-TB medications. After a month, there was no improvement in his weight. He nearly died of septicaemia, or blood poisoning. He continued to cough. We treated other types of pneumonia known to attack patients with little or no immune system. How many times had I wished we had an X-ray machine to know what was going on inside his wracked little chest. We tested him and his mother for HIV which, given Etoile’s problems, was thankfully negative. Etoile’s mother persevered with the feeds and told us in good time if he had diarrhoea or a fever so we could treat early (we treated him twice for malaria during his stay at the hospital).
After two and half months, and after a long discussion with Etoile’s mother, we decided that it would be better to treat him at home. He was now taking Plumpynut, a high calorie peanut paste and although his weight remained stubbornly at 5kg, he no longer suffered fevers, his cough had diminished and there was less risk of picking up an infection at home. Having observed his mother’s exceptional care, I broke the rules and sent them home with two weeks supply of anti-TB medications (best practice is where the patient is directly observed taking the treatment by a healthworker), careful instructions and a sheet of paper with a table where Etoile’s mother could cross off each daily dose. She strapped Etoile to her back with a cotton wrap and tramped the 15km home to Misisi.
Two weeks later, Etoile and his mother arrived punctually for their follow-up appointment. The change was extraordinary. Etoile had lost his old man’s face, he no longer cried when I approached him and the weight he’d put on meant I could listen to his chest properly. As the weeks progressed, his hair, once a brittle and sparse and red, thickened and softened, his face continued to fill out and his mother reported that he had started to crawl. Etoile was now a well-known character at the hospital and all the nursing staff would greet him and his mother with beaming smiles when they arrived for an appointment.
As the project here in Kimbi progressed, MSF started support for the health centre in Misisi. I’d found that many of the children who died in our hospital had presented too late from Misisi and that to have reliable, free healthcare in the town – there are many expensive and dubious private clinics – was a priority.
Etoile is nearing completion of his treatment for TB. He has started to walk. He has made it to 7.5 kilos and his weight was measured not at the hospital but at the health centre in Misisi. We no longer have to provide weeks of medication at a time to his mother as she comes daily to the health centre. Meanwhile, I’ve watched other members of our small but growing cohort of TB patients put on weight, stop coughing and smile. One little boy, diagnosed with TB in the malnutrition unit, was always especially sad but when I felt under his arms looking for lymph nodes at our clinic last week, he giggled uncontrollably.
At the clinic, Pierre and I looked at each other and smiled. We’ve shared with Etoile a difficult and at times overwhelming journey. “There are some patients you will never forget and Etoile is one of them,” Pierre said. Etoile, the little star who refused to fade and who represents so poignantly our bumpy ride through this beautiful, troubled land.