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Living with the consequences of Zika virus disease

2019; Elsevier BV; Volume: 3; Issue: 4 Linguagem: Inglês

10.1016/s2352-4642(19)30066-5

2352-4650

Barbara Fraser, Lise Alves,

Mosquito-borne diseases and control

Camilla Raquel Alves was pregnant and nearing her due date when a final ultrasound scan made her doctor wonder if she had miscalculated the months. “The doctor questioned how far along I was, because my child had a head the size of a 7-month-old fetus, not one that was about to be born any minute”, Alves recalls. Maria Lys was born in December, 2015, amid media reports about babies with microcephaly born to mothers infected with Zika virus, but when solid medical information was still scant. Since then, Alves, who lives in João Pessoa in northeastern Brazil, has been grappling with the challenges of caring for a child born with the congenital malformations that result in physical and cognitive problems that have become known as congenital Zika syndrome. Although the virus probably arrived in Brazil in early 2014, it flared in 2015 and 2016, spreading rapidly from the northeastern region throughout much of the country. Colombia was the second most affected, but two-thirds of countries in the Americas reported cases as recently as 2018. Brazil declared a national emergency in December, 2015, which lasted until May, 2017. Since 2015, the Health Ministry has confirmed more than 2600 cases of children born with microcephaly linked to Zika virus. Most were reported in the northeast region (58·6%), with the largest numbers reported in the states of Pernambuco (16·4%), Bahia (15·7%), São Paulo (9·7%), Rio de Janeiro (7·0%), and Paraíba (6·9%). Many questions remain about the virus, which has subsided, although risks and long-term consequences remain. Even the extent of the outbreak is unclear, because of inconsistencies in diagnosis and reporting, and because more than half of all cases are asymptomatic or show only mild symptoms. While researchers seek better ways of detecting, tracking, and preventing Zika virus infection, families have found their lives upended as they struggle to care for what some call the Zika generation. Zika virus disease is usually mild, except for the consequences of neurological complications such as Guillain-Barre Syndrome or congenital Zika syndrome, says Marcos Espinal, director of communicable diseases and environmental determinants of health at the Pan-American Health Organization (PAHO) in Washington, DC, USA. “The challenge for the health system, not only of Brazil, but also [other countries], is how to provide the best health services to these children and their families”, he says. “They need to prepare for long-term care of these babies.” At first, Maria Lys seemed like other babies, but with a smaller head. “It was in her seventh month that I started to notice that she couldn't sit up”, her mother says. “Then the convulsions started.” Since then, Maria Lys has been in and out of hospitals with pneumonia and other respiratory problems. Alves says she can afford the milk supplement her daughter needs, “but there are other children who need expensive medicine that many families can't afford and can't obtain through government agencies”. At first, she says, “everyone reached out. Individuals and the government made lots of promises. But now we have been forgotten.” That is one of the greatest risks, Espinal says. “We tend to forget easily. We tend to say [the rate of] Zika [virus disease] is going down, but the kids are still there, and they need help. So it's critical.” Support needs range from basic care at home to various types of therapy and psychological assistance for children and their caregivers. Many of the children have difficulty feeding, making them more prone to inhaling food, which could lead to pneumonia, says Hannah Kuper of the International Centre for Evidence in Disability at the London School of Hygiene and Tropical Medicine (London, UK), who has been studying the impact of Zika on families. Affected children may also have epilepsy, eye problems, and other difficulties similar to those of children with cerebral palsy. Although health officials registered 2751 cases of congenital Zika syndrome in Brazil between 2015 and August 26, 2017, the real number could be higher. Definition of the syndrome “is still in a state of flux”, Kuper says. “For every child with congenital Zika syndrome, there might be ten children affected” but not officially diagnosed. “It's been difficult for health-care providers, because they've been acting in an evidence-free zone”, she says. These problems are magnified in the areas hardest hit by the virus and its aftermath—low-income urban neighbourhoods, where houses lack window screens and running water, so people must store water in containers, creating a potential breeding ground for the Aedes aegypti mosquito, which transmits not only Zika, but also dengue, chikungunya, and yellow fever. Many mothers of children with Zika-related disabilities are single and poor, and must juggle other responsibilities or stop working to care for their children. The difficulties are compounded in rural areas, where people live on scattered farms. Carrying a child to a main road, waiting for the bus, and travelling to and from the nearest health centre can turn a single medical appointment into a day-long ordeal, says Klayton Galante Sousa of the Federal University of Rio Grande do Norte's Trairi School of Health Sciences (Brazil), who is studying the development of children born with congenital Zika syndrome. “There are many invisible children, because they often don't have access to health care”, he adds. Those who do have access may receive care that is of little help, says Egmar Longo, of the same university. Intensive—and expensive—therapies are in demand, including some requiring a special suit and a cage with physical therapy equipment to build muscle strength and motor coordination. But these therapies are not proven and not practical in the long term, she says. Brazil needs more physical therapists trained to address the needs of children with disabilities like those of the Zika generation, and programmes that focus on how families can adapt the child's environment to their needs, she adds. Where the health system falls short, families sometimes fill the void. When Joana Passos was pregnant with her second child in early 2015, she came down with flu-like symptoms, but thought little about it until a prenatal exam showed something unusual about her unborn daughter's brain. Gabriela's birth in September that year changed Passos' life. She left her tourism job and plunged full time into learning how to help her daughter. “She requires a lot of time from me”, she says. “She has therapy every day, because a lot has been affected—her motor skills, her sight, her cognitive abilities.” Determined to understand congenital Zika syndrome, Passos founded a non-profit organisation called aBraço a Microcefalia (Embracing Microcephaly) as a support network for families. “We share information, tips on how to take care of our children, but most of all we provide support”, she says. The group includes 240 children from Passos's home state of Bahia, most of them born between September, 2015, and February, 2016. Speech, occupational, and physical therapists, nutritionists, and other health professionals work with the group. Besides increasing efforts to serve the first children of the Zika generation, health systems must prepare for future outbreaks of Zika and other emerging diseases by improving detection, prevention, and surveillance, Espinal says. Because Zika symptoms are similar to those of other mosquito-borne viruses, researchers are working on better diagnostic methods and countries are upgrading their laboratories. Prevention has mainly focused on household mosquito control. This “puts a huge burden on women and girls”, who must also deal with the risk of contracting Zika virus during pregnancy, says Rachel Lowe, assistant professor in the Department of Infectious Disease Epidemiology at the London School of Hygiene and Tropical Medicine. “It's a huge pressure on the individual, when it's really a public problem” of improving infrastructure, especially in low-income neighbourhoods that lack services, she says. During the outbreak, women were also most affected by the advice to delay pregnancy, avoid travel to Zika-affected areas, or protect against mosquitoes if pregnant, says Michelle Pieters (Global Health Institute, Duke University, Durham, NC, USA). “Recommendations about pregnancy did not match the reality in many of these countries”, she says. A study she conducted with Michaela Howells (University of North Carolina Wilmington, Wilmington, NC, USA) found that people in Escuintla, in Pieters' native Guatemala, could not afford mosquito repellent and were unaccustomed to using mosquito nets. In addition, adequate reproductive health care and education were not readily available. Unmarried women did not have the same access to reproductive health services as married women, and men often are unwilling to use condoms to prevent pregnancy or protect against possible sexual transmission of Zika virus and other diseases, they say. Their study points to the need for researchers to consider cultural attitudes about the prevention of diseases like Zika, Howells says. Other lessons include the improving prediction of potential outbreaks. The Zika outbreak appears to have gained strength during an El Niño-related drought, which might have increased the need for water storage, Lowe says. Further study is also needed of other possible vectors, as well as non-human primates and other potential reservoirs, she says. Enhancing surveillance systems to detect anomalies, such an increase in cases of microcephaly, that could be related to a disease outbreak like Zika, would enable health officials to react more rapidly than they did during the 2015–16 epidemic, she adds. Families tend to adapt to the long-term consequences of the disease, Kuper says, although mothers bear the weight of looking after children with severe needs. “Sometimes I don't even want to think about the future, because I feel like crying”, says Alves, Maria Lys' mother. “But today I can't imagine my life without my daughter.