Ebola in children: a personal perspective
This article documents reflections of a paediatrician working with the medical non-governmental organisation, MÃ©decins Sans FrontiÃ¨res, in two Ebola Management Centres in Sierra Leone, in December 2014 and January 2015. Patient names have been amended.
The 2014 Ebola virus outbreak in West Africa is unprecedented in terms of scale and international response. It is estimated that 3,922 children under 14 have had confirmed or probable Ebola virus disease (EVD) by 29 April 2015 . As with previous outbreaks, children are under-represented in the epidemic, probably reflecting less exposure rather than reduced susceptibility to the virus . The clinical consequences of EVD in paediatric patients have been sparsely documented but in the current epidemic, children aged under 4 years have the highest mortality . They are likely to have different pathophysiological responses and may require different treatment approaches compared to adults [4â€“6].The impact of the outbreak on children includes high parent mortality and prolonged school closures, and reaches far beyond biomedical issues [7,8]. The following are personal reflections, based on caring for children and young persons with EVD and working alongside health workers in Sierra Leone.
From arrival to discharge in the Ebola management centre
Children and adolescents attended the Ebola management centres as suspected cases prior to test confirmation, as confirmed cases from holding centres or (rarely) as dependants of mothers, where there were no alternative care arrangements. The last scenario occurred when services were overwhelmed, patients were far from home and inevitably, children had already had significant exposure to the virus. The journeys were often long, uncomfortable, hot and sometimes spent next to those who had died en route. With this terrifying and debilitating backdrop, children arrived in management centres, to be greeted by staff wearing full personal protective equipment.
Counselling before and after giving the diagnosis of EVD reminded me of counselling for human immunodeficiency virus (HIV) in sub-Saharan Africa before the arrival of antiretroviral drugs. HIV was (and still can be) an infection that leads to people being insulted and rejected. In the 1990s and since, a lot of thought has been given to pre-test and post-test HIV counselling. In this outbreak, an EVD diagnosis in the perception of many patients equated to suffering and death, but counselling was limited in the first instance. The child or young person who had a positive blood result had to be transferred quickly from the â€˜suspectâ€™ tent to the â€˜confirmedâ€™ area. This was to make space for new patients with suspected infections who, for reasons of infection control, could not be placed next to someone with confirmed EVD. This haste meant the counselling process was sympathetic, provided encouragement and advice, but could be as brief as five minutes.
If children with suspected or confirmed EVD had no infected family members, it was the norm to admit them to an Ebola management centre without a parent or familiar adult. Healthcare providers therefore became the temporary guardians of unaccompanied children. The duty of care extended beyond the medical needs to all needs, including the childâ€™s safeguarding â€“ a unique responsibility, greater than in any other health intervention. Although there was concern for children for their isolation and vulnerability, guardianship was a new experience for us as health staff.
When children started to recover and began to comprehend their surroundings, they were often withdrawn. This was understandable, as they were isolated from their families, may have witnessed the death of a sibling or parent, and were recovering from an illness in a new, unusual environment where needles and oral rehydration fluid were compulsory. A paced, age-appropriate engagement with children was paramount but was not universally achieved in this â€˜outbreakâ€™ situation. Children became carers of their younger siblings and, because it was touching to witness this caring relationship, it was easy to overlook the fact that the carer was a young person too, with their own needs. Survivors were sometimes employed to care for children in the high-risk area. With supervision, this practice could improve hygiene, nutrition, fluid support as well as psychological well-being. In one centre, children were shown the process of dressing into protective clothing, so they could link a person to the friendly monsters in yellow suits.
Discharge, although an incredibly positive moment, was often filled with apprehension, as children may have lost parents and siblings. Ten-year-old Ibrahim was with his mother, and very excited about their discharge home; and so were we. His smile, not seen so often before, was irrepressible and he wanted to ride his bike again. On arrival in the village, however, Ibrahim and his mother brought the news that Ibrahimâ€™s elder sister had died in the treatment centre, so the celebration transformed to mourning, and his jubilation transformed to distress.
Not every child had a known relative; however, the duty to bring children back to a safe environment was critical. How do you find the correct aunt or uncle in a pre-verbal child who may have originally come from a different district far from the treatment centre? There were great examples of interim care before careful reunification, but there were also claims to children by strangers. Safeguarding was more challenging and at the same time more central to care than in other epidemics, when parents are with their children.
Beyond the Ebola management centre
Health workers were sometimes restricted, not only by crude medical tools, but also by where we could go. Some staff working in health centres that were not focused on Ebola were left for days and weeks without relevant knowledge or equipment with which to protect themselves. Meticulous contact tracing was attempted but was far from universal. Households were placed in strict quarantine but often lacked basic commodities and access to healthcare. The death toll owing to absent services and restricted movement meant many children died outside Ebola management centres, from EVD and other causes. In Bo District, during the last 4 months of 2014 more than 95% of pre-burial mouth swabs in children 5 years and under did not have evidence of Ebola. One could argue that there may have been some false-negative swabs and not all deaths were related to the Ebola epidemic but regardless, the toll from non-Ebola killers was high. Malaria, diarrhoea, pneumonia and neonatal deaths are all too prevalent in Sierra Leone and the pre-Ebola under-five mortality rate has been reported as a staggering 161/1000 live births .
The ease of hindsight makes us realise we (everyone) did not act quickly enough to stop this fragile virus wreaking havoc in the lives of West Africans and beyond. We simply did not stop the chain of transmission. As well as the public health catastrophe, we also lost many precious opportunities to learn in real time, through prospective clinical and laboratory data and understanding social barriers, how to change behaviour.
It must now be impossible to walk away from the countries hit by Ebola. If there is a positive aspect for children in West Africa, it is the possibility for greater investment in their health, their countriesâ€™ health workers and future epidemic control.
1. UNAIDS. Global Report: UNAIDS Report on the Global AIDS Epidemic 2013. Available at: http://www.unaids.org/en/media/unaids/contentassets/documents/epidemiology/2013/gr2013/UNAIDS_Global_Report_2013_en.pdf