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CHAPTER 1
TELLING THE STORY
This book follows Brazil's Zika epidemic as it unfolded in two somewhat overlapping chapters: the detection of a virus new to the country and the discovery that Zika can cause fetal microcephaly. The account has been drawn directly from human experience: women's experiences with their own bodies and people's experiences within their families and communities, ranging from remote towns in rural Paraíba to the broader realm of Brazilian and world science. Within this framework, these pages tell how doctors and scientists in Brazil followed the trail of a new disease, interacted with their peers, and navigated the waters of science, government, and the press. Their stories are inextricably bound up with the stories of the women whose babies were struck by Zika before leaving the uterus, and they too feature prominently in this telling.
The narrative voice belongs to me, a Brazilian woman who made countless trips to Northeast Brazil to hear and record people's stories. I experienced this time with Zika in two ways, personally and professionally. While doing research for my documentary Zika, I contracted the illness and suffered its textbook joint pain and skin rash. As someone who works with public health and bioethics, and above all as a woman listening to stories, I witnessed firsthand the anguish of pregnant women and caregivers of newborns as they faced a frightening unknown. As I traveled through the Northeast, I grew to understand that Zika, on one level, has become yet another health nuisance for people in the tropics, while on another, it now presents a dread peril for all women of reproductive age.
The setting is the Northeast, Brazil's poorest region, and the lead characters are Northeastern doctors, scientists, and ordinary women. For too many years, the Northeast was home to sugarcane plantations sustained by slavery. The states hit by Zika were also the site of the country's earliest universities and of train tracks laid by the British. The region produced Brazil's first abolitionists. Today, the Northeast can be thought of as divided between the coast and the sertão – the term for the parched rural areas that dominate the interior. When Zika struck, it was the inhabitants of the sertão who suffered most, far from the eyes of anyone enjoying a day at the beach.
Even more specifically, I followed people affected by the epidemic in five states within the Northeast, where its impact was harshest: Alagoas, Bahia, Paraíba, Pernambuco, and Rio Grande do Norte (see map on p. xx). On December 26, 2015, Paraíba led Brazil in the rate of reported cases of microcephaly, with 82.75 per 10,000 live births, while Pernambuco ranked a close second, with 80.38 per 10,000. Additionally, the first wave of Brazilian scholarship on the Zika epidemic and microcephaly came from physicians in Paraíba, Pernambuco, and Bahia.
The people of the sertão are known for their warmth and generosity and, to my good fortune in writing this book, they are consummate story tellers. While it was heartrending to see how the epidemic had devastated their forgotten, anonymous region, it was also enthralling to hear them weave their accounts, many extending interviews for hours, introducing me to their families, inviting me to join them for a dinner of cuscuz, showing me copies of text messages exchanged with other mothers or scientists, and sharing the details of scientific controversies. My Northeastern roots helped little; no one recognized mine as a regional accent, as time has stripped it of its Alagoan notes. If anything made a difference, it was the fact that I was a woman listening to stories of maternity, birth, or anguish over a sick child, to the Northeastern culture of motherhood being told and being heard.
There was a Brazilian, or perhaps Northeastern, touch to how science was done during these discoveries of Zika and its vertical transmission. Human warmth and solidarity often characterized interactions between the men and women who played leading roles. As science advanced, it walked hand in hand with religious beliefs. Dr Adriana Melo, an obstetrician from the state of Paraíba, and Géssica Eduardo dos Santos, the very first woman to donate amniotic fluid for Zika research, shared a sense of mission; they both responded to the epidemic by giving of themselves, though their belief systems differ: Dr Adriana is a Spiritist and Géssica is Catholic.
The Northeastern outlook was also visible in how mothers dealt with their situation. Some women said their children not only had Zika but quebranto as well. They explained it in these terms: "It's the evil eye ... except when it attacks a child, you call it quebranto." To break or mitigate the quebranto spell, the women said, you have to visit nine faith healers, known as rezadeiras. They also talked about the need for early stimulation, like exercises, activities, and other rehabilitation techniques to prevent or minimize delays in neuropsychomotor development. Among the many women I met were three from Juazeirinho, a city in Paraíba, whose children had been diagnosed with congenital Zika syndrome. One of them rebuffed the notion that a pesky mosquito had caused the disorder, insisting instead that she'd suffered a fright during pregnancy. She refused to take part in a medical research study, because she felt science could never explain what she already knew. Some of the researchers and doctors who I interviewed, especially in southern Brazil, scorned as scientific blasphemy the thinking of some Northeasterners. Others listened to these stories in solemn silence, and I wondered if they might not also be men and women who embrace traditional or folk modes of thought but had been regimented by the discourse of scientific neutrality.
In this story, where a mundane disease of the tropics proved to be a source of tremendous distress for women, the key protagonists were not physicians and scientists but these mothers-to-be. The outbreak of Zika itself was not a remarkable event. The disease has been known among humans in Africa and South Asia for over 50 years. And although Zika itself was a new word and a new disease in Brazil, Aedes aegypti, the vector that carries and transmits the virus, had been a member of the Brazilian household for over 40 years, ever since public health policy last eliminated the mosquito nationwide. In part, this is why the baffling newcomer was first believed to be mild dengue. What was truly novel about Brazil's Zika epidemic was the associated microcephaly outbreak, a product of vertical transmission – that is, transmission of the illness by a pregnant woman to her fetus and the attendant possibility that the virus might adversely affect fetal development and cause permanent damage.
Dr Jernej Mlakar coordinated the team of Slovenian doctors who first detected the DNA of the Zika virus in a stillborn, making use of the best technology available for researching human tissue. In Brazil, Dr Adriana Melo tested the hypothesis of vertical transmission by carefully studying the ailing bodies of women through the lens of her medical specialty and examining the amniotic fluid of two pregnant women. There are clear-cut reasons why it was Dr Adriana and her team who substantiated the link between Zika and microcephaly in Brazil: she was trained to care for women and listen to the wisdom of mothers-to-be. "I just asked the question that my colleagues in Pernambuco hadn't. I looked at these pregnant women. But it was all right there in front of me," she stated, modestly implying that if it hadn't been her, it would have been some other researcher.
Science is urged on by controversy, and expressing doubt plays a valuable role in public discussion. In Brazil this is particularly true given generalized skepticism about national health surveillance data. While there have long been evident failings in the epidemiological reporting of newborns with microcephaly in Brazil, more to the point, there were no lengthy temporal series upon which comparisons could be based, because the disorder was new to Brazil; researchers would need to examine incoming data on a weekly basis, going back to the onset of the crisis. In point of fact, a more thoroughgoing analysis of the situation was only possible once Brazil's Ministry of Health had declared a Public Health Emergency of National Concern, on November 11, 2015.
Some Brazilian researchers urged the use of consistent diagnostic criteria when investigating cases of suspected microcephaly. Others wanted to believe that the numbers might prove in part an artifact of historical underreporting, and they enlivened discussions in the press with basic lessons on how not to confuse a spurious correlation with causality and how other countries were much more diligent about reporting microcephaly. Neighboring countries challenged Brazil's numbers and the notion of a link between the Zika virus and microcephaly, alleging that it all boiled down to lax epidemiological surveillance; Brazil, they argued, had not properly monitored microcephaly in newborns and the Zika epidemic was merely the result of increased sensitivity to the problem.
A report released by the Latin American Collaborative Study of Congenital Malformations (ECLAMC) described the spike in microcephaly cases in Northeast Brazil as "unprecedented" and listed among tentative causes for the surge the facts that (a) rumors about microcephaly had led to an active search for what were previously underreported cases; (b) reported cases included newborns with a normal head circumference because the cutoff for microcephaly was somewhat arbitrary; (c) errors were occurring in post-partum measurements; and (d) the cases were actually attributable to other causes. While the method used to determine head circumference in Brazil is common practice worldwide – a measuring tape is wrapped around the newborn's head right in the delivery room – an epidemic indeed heightens people's sensitivity to a given phenomenon, and thus many cases of microcephaly might well have signaled previous overreporting.
Skepticism about the numbers also reflected skepticism about the idea that Northeast Brazil can produce serious science. Not only were these Northeasterners mistrusted because of their geographic origins; many were also the target of suspicion because they were clinicians, professors, and healthcare providers lacking the usual scientific credentials listed in the bios published in high-impact international journals, which are often home to Nobel laureates. And yet, since the Zika epidemic, the world has been hearing directly from this region, shaking Brazil's intellectual pecking order.
When I first took up this book project, I was inspired by classic works on the history of science, and I wanted to understand whether the events I was observing constituted a scientific revolution or whether this was merely a moment when an extraordinary event was reinvigorating the prevalent way of doing medical science – what Thomas Kuhn called "normal science." I found no event that altered scientific thinking; rather, the pieces of the scientific puzzle were simply slipped into their proper place. Guillain-Barré syndrome (GBS) had been described decades earlier, so some of the neurological effects of the Zika virus were already known. Zika is an arbovirus of the genus Flavivirus, and there are other flaviviruses, like West Nile virus and Japanese encephalitis, that also affect the nervous system. In public health terms, the initial challenge was to learn which of the flaviviruses was circulating in Brazil in the guise of mild dengue. Once Zika was discovered, the next steps followed quickly, and they were groundbreaking: the hypothesis was launched that the virus could not only lead to temporary paralysis in children and adults but also cross the placenta and irreversibly damage the fetus. But this hypothesis was grounded in what had already been predicted by the puzzle. There was no scientific revolution but rather a series of discoveries made within the bounds of everyday science.
If detection of the Zika virus in Brazil and the discovery of vertical transmission reflected good practice in normal science rather than a major scientific upheaval, there was still something momentous about the history of Zika in Brazil: there was a shift in the geography of legitimate science within the country's borders. The doctors who announced to the world the discovery of the new disease were from the Northeast, an area many Brazilians consider inferior within the national landscape. Southern Brazil, site of the top universities and research centers, finally had to pay heed to Northeastern scientists and physicians as they explained what they observed and discovered. This time, recognition for a major medical discovery made in Brazil went not to authorities in Rio de Janeiro or São Paulo, beneficiaries of the nation's most generous funding, but to authorities who touted their feats in the lilting accent of the Northeast. They were clinicians and practitioners of bedside medicine – where the focus is on the doctor–patient relationship – many of whom were unknown to the public at large or the academic community. It was these doctors' intimate contact with a tragedy that transformed them into scientists and projected them into the international spotlight as discoverers of a new ailment. Furthermore, the mothers of the babies with microcephaly were also poor Northeasterners, many of them farm workers, many black and brown, women whose faces and biographies are usually all but invisible in Brazil's socially stratified world.
In methodological terms, I conducted an ethnographic study. From February to June 2016, I spent stretches of time in Campina Grande, Paraíba, where I had daily contact with healthcare providers and women. I conducted 31 interviews and engaged in countless private conversations with doctors and scientists. In addition to interviewing these Northeasterners, I also observed and interacted with them; I sat in on appointments, spent time in waiting rooms, traveled to towns in the countryside. For many months now, I've been a member of two WhatsApp groups of mothers of children with microcephaly. There is only one topic in their daily exchanges of texts, audios, pictures, prayers, and chain letters: the special needs of these women's children, their pilgrimages to secure social assistance benefits, and the challenges they face with transportation and other logistical matters. In sharing their daily lives, I saw how the domestic science of caregiving advances alongside the official science of medicine. Before medicine had figured it out, for example, many mothers suspected that their babies' constant crying was not just irritability but convulsions, and that their babies were not seeing or hearing like their age-mates.
My interviewees did not include the authors of the earliest publications on the Zika outbreak that took place in the Federated States of Micronesia, on Yap Island, in 2007. Nor did I go back to primary sources from the early twentieth century, when GBS was first identified, or from the 1940s, when the Zika virus was detected in Uganda. My sources for these events were the academic articles and other peer-to-peer communications that form the official history of science. I did a review of the literature on PubMed and also monitored 5,000 Brazilian and international media sources covering the period from October 2014 through June 2016, scouring thousands of articles on Zika, microcephaly, and congenital Zika syndrome. As a research strategy, following these reports allowed me both to track the public appearances and statements of the scientists and physicians interviewed in these pages and to confirm information on dates and places. Moreover, because the epidemic created a sense of urgency and because Brazilian doctors publish little in English-language journals, discoveries were first broadcast through the press and only later published by scientific periodicals. I also attended dozens of academic seminars in Brazil and abroad.
Whenever we delve into unexplored terrain in examining an illness, it is helpful to rely on science's traditional problem-solving approaches, while still arming ourselves with a healthy dose of doubt. This was how I proceeded in my research. I monitored the mounting number of recent releases in the biomedical literature. Nothing was published in 2007, when the first Zika epidemic struck outside Africa – after all, communication between scientific peers moves more slowly than any public health emergency. Two articles came out in 2008, both on the outbreak on Yap Island. If journal articles can be considered a measure, the academic community's interest in the Zika virus then held steady for several years, until soaring in 2016: two articles were published in 2009; none in 2010; one in 2011; four in 2012; three in 2013; 23 in 2014; 41 in 2015; and 646 from January to June 2016.
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Excerpted from "Zika"
by .
Copyright © 2016 Debora Diniz.
Excerpted by permission of Zed Books Ltd.
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