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Interface - Comunicação, Saúde, Educação

Print version ISSN 1414-3283On-line version ISSN 1807-5762

Interface (Botucatu) vol.22 no.66 Botucatu July/Sept. 2018

https://doi.org/10.1590/1807-57622017.0857 

Dossier: Zika virus: an epidemic in/and its social world

“I never expected this, it was a big shock”: conception, pregnancy and birth in times of zika through the eyes of women in Recife, PE, Brazil

Rosamaria Carneiro(a) 

Soraya Resende Fleischer(b) 

a Faculdade de Ceilândia, Universidade de Brasília. Centro Metropolitano, conjunto A, lote 01. Brasília, DF, Brasil. 72220-275. rosacarneiro@yahoo.com.br

b Departamento de Antropologia, Universidade de Brasília. Brasília, DF, Brasil. fleischer.soraya@gmail.com


ABSTRACT

This article discusses conceptions of conception, gestation and childbirth shortly after the boom of the Zika epidemic in Brazil, from the narratives of female mothers of babies with microcephaly. His children were conceived and gestated in a sui generis context, quite chaotic and insecure, due to the deconditioning of the deficit, the roads of Recife and the neighborhoods of popular litters. Most were born in public hospitals in the state capital of Pernambuco. This way, trying to comprehend these sexual and reproductive experiences of these women, with her we were in 2016 and then in 2017, in this case, from the memory of your gestations and births. Try to be more of the particularity of sexual and reproductive life of Brazilian women, to be thought, for this reason we recover their ideals and practices, comparing them to others, a little wider, on the subject.

Key words: Reproductive health; Woman; Recife; Zika Virus

RESUMO

Este artigo discute concepções de concepção, gestação e parto logo após o “boom” da epidemia de Zika no Brasil, a partir das narrativas de mulheres mães de bebês com microcefalia. Os seus filhos foram concebidos e gestados em um contexto sui generis, bastante caótico e inseguro, por conta do desconhecimento da raiz da deficiência, nas ruas de Recife e em bairros de camadas populares. A maioria nasceu em hospitais públicos da capital pernambucana. Dessa forma, procurando compreender tais experiências da vida sexual e reprodutiva dessas mulheres, com elas estivemos em 2016 e, depois, em 2017, por meio da observação diária de seu cotidiano e relações sociais, mas, nesse caso, a partir da memória de suas gestações e partos. Trata-se de mais uma particularidade, da vida sexual e reprodutiva das mulheres brasileiras, a ser pensada, por isso aqui recuperamos suas ideais e suas práticas, cotejando-as a outras, um pouco mais amplas, sobre o assunto.

Palavras-Chave: Saúde reprodutiva; Mulheres; Recife; Zika virus

RESUMEN

Este artículo discute nociones de concepción, gestación y parto inmediatamente después del “boom” de la epidemia de Zika en Brasil, a partir de las narrativas de mujeres madres de bebés con microcefalia. Sus hijos fueron concebidos y gestados en un contexto sui generis, bastante caótico e inseguro, debido al desconocimiento de la raíz de la discapacidad, en las calles de Recife y en barrios de capas populares. La mayoría nació en hospitales públicos de la capital del estado de Pernambuco. De esa forma, buscando comprender tales experiencias de la vida sexual y reproductiva de esas mujeres, estuvimos con ellas en 2016 y después en 2017, por medio de la observación diaria de su cotidiano y relaciones sociales, pero, en ese caso, a partir de la memoria de sus gestaciones y partos. Se trata de una particularidad más de la vida sexual y reproductiva de las mujeres brasileñas que debe ser pensada y por eso aquí recuperamos sus ideas y prácticas comparándolas con otras, un poco más amplias, sobre la cuestión.

Palabras-clave: Salud reproductiva; Mujeres; Recife; Virus del Zika

What we see and what will we write about(c)

Who has ever been pregnant knows the fear our, at least, felt the uncertainty, that something bad or abnormal regarding the health of the child might be discovered during the pre-natal period. For some women, this is more tranquil, for others a nightmare. Nevertheless, in some degree, the fear of a fetus mal formations is something that afflicts all of those who one day carried a baby in their womb. Perhaps, not by chance, in all cultures, there exist prescriptions and taboos during pregnancy; considered, as a rule, a period that inspires special care with food, emotions, sexual relations and spiritual feelings.

Michele said: “I was afraid of hydrocephalus. Once, some time ago, I was at the IMIP hospital [Instituto de Medicina Integral Professor Fernando Figueira hospital] and I saw a 10-year-old child with an enlarged head, full of water [she said this with her hands on her head, imitating that the head was much larger than normal]. It was so large that it exploded, and the child died. I feared that my child would have this. Thank God this didn’t happen. I also saw a child with Down [syndrome]. These were the problems I had seen before. I was really afraid of water in the brain. Fortunately, this is not what my child has. (SF field diary, 2016)

The concern of Karina was the “open spine,” that the spine did not close, remain open, and not function, compromising the child. She had already told us about this the previous week. Thus, faced with the possibility that the child would be born “open”, the smaller head was a positive thing, was a relief. It is interesting how everything is relative. She mentioned “anencephaly” and not “microcephaly”. Before the images of children with no encephala, microcephaly also could have been positive. I thought about the internet, the circulation of images, the settling of the imagination, the attempt to find reason regarding the diagnoses and many words she received in a whirlwind. (SF field diary, 2016)

On the one hand, fearful of some abnormality, the pregnant woman is constantly responsible for her own care during the period when she is “two in one”1. But, on the other hand, she imagines the baby even before its birth2, defining it as a person even before its extra-womb existence. Concerning the anguish of discovering what is going on in the womb being more present among the middle and upper classes3, this is also present in the low classes, when frequently these women told us in Recife that they save up money to do an ultrassound exam in private clinics, or at times in unexpensive clinics. This means that these women do not have access to this fetal image within the protocol pre-natal service offered by the public SUS. They must pay for this by themselves.

According to Chazan3, this happens because we live in the “eyes of culture”, where everything must be seen, and thus, controlled. Foucault4 saw something quite similar when writing about medicine, modern thinking and the viewpoint that everything unravels, or, the view of the anatomy that needs to recognize the bodies in your interior to control and thus know. In this register to see in order to control or know in order to anticipate, the ultra-sound exam is actually the main technology and of extreme importance during a pregnancy.

This exam can also identify the sex of the fetus and thus define the person in formation. To learn the sex of the child is something important or relevant in Brazilian culture – both in the upper and lower classes. It is understood, to a certain extent, that, by way of this revelation something is defined. This defines who you are. To buy the baby’s layette, choose the baby’s name and to verify the characteristics of the fetus still in formation. For this reason, currently in Brazil, we see more “revelation showers”. This is a type of party where the baby’s gender is collectively discovered. The pregnant woman does a blood test that indicates the makeup of the baby’s chromosomes and its sex. This exam can be done in the first weeks of pregnancy, but is made public at parties called “revelation showers” – where friends gather and a cake is cut, and the inside color (pink or blue) of the envelope reveals whether the child is a girl or a boy. This curiosity or anxiousness makes no difference in other cultures, where the sex of the child doesn’t matter or that this detail will be revealed only when the child is born.

Perhaps more that the distinction of knowing the person and his/her name, is the desire of knowing the sex, a boy or girl, together with the control of his/her health, or what to expect from this baby. At times, this control tends to be extensive, so that women have ultra-sound images during every month of their pregnancy. Frequently, this control functions as a technology that alleviates and ends the anguish of the mother or the couple, when everything is within the expectations and norms of biomedicine.

And when this is not the result of the ultra-sound exams? Or, even worse, when the baby that is born isn’t the baby expected/or idealized by those waiting for him/her? Contemplating these questions in general, we sought to reflect on how those mothers who had the Zika virus in Recife received the news about the baby they were carrying or had given birth to a baby with disability, that has been conventionally called as the congenital syndrome of the Zika virus (SCVZ)? Further, we tried to describe how it was to carry and give birth in such exceptional and dramatic cases – such as those identified at the first outbreak of this epidemic, between 2015 and 2016. Also called the “first generation of Zika mothers”5, that is, the women who became pregnant in the period when this epidemic was not known, and no direct connection between the Zika virus and irregular fetal formation had not yet been established.

Research and writing has been done about the relationship between the virus and SCVZ continues, the idea of early stimulation of these babies, the causes of the irregular development of the fetus, the strategies for the control of the mosquitoes vectors and regarding public policies. But little or almost no research/writing has come out about the daily life of mothers of these children. For this reason, we undertook a broader research project. “Zika e microcefalis: um estudo antropológico sobre os imactos dos diagnósticos e prognósticos das malformações fetais no cotidiano da mulheres e suas famílias no estado de Pernambuco” (Fleischer & Carneiro, 2016)(d), where we have been following these women in their daily tasks, afflictions, happy moments, their medical consultations, the time with their families, husbands, relations with money, with their bodies and with the State (Fleischer, 2017).

In this article, we dwell on the ideas about conception, pregnancy and delivery experienced by these women who recently had kids with the syndrome. They live in the outskirts of Recife, and through interviews, informal conversations and three field research trips (September/2016, April and September/2017), we have known their children, families and daily routine. Thus, we will think about the sexual and reproductive life of these “micro moms”, as they call themselves. In this article, we will consider contraception, reproductive planning, pregnancies, the pre-natal period, birth experiences and the ultra-sound images along all these. We will describe how these children were while still in the womb or immediately after birth, about previous time periods when little was known, or little knowledge was sought about the virus, and the notorious mosquito.

The stories of these Pernambuco women and their children

Karina described the birth of her youngest daughter. “They wanted it to be a natural birth. All my children were by natural birth. But I had already decided; I wanted to tie off my tubes. Open to no conversation. I had already signed the papers. At the time of the birth [at the hospital] my husband almost changed his mind; he said that he did not want me to tie off my tubes. I said ‘Listen here, I am the one who cares for the children. I’m the only one. I don’t want any more children. Five is a lot, already too many”. At times when I saw Karina talk about the number of children, I felt that she was constrained, half ashamed. I think that they know full well what the middle class feels about having more than two or three children. (LV field diary, 2016)

In Recife, we contacted many women, but in this article we will work from the stories and our encounters with Julia, Jandira, Jaqueline, Michele, Diva, Karina, Sandra, Debora, Cristina, Zelia, Eva and Solange. All had more than one child, except Debora, the youngest of the latter (age 17), and her first and only child was born with microcephaly. Many of them had between three and five children, that reminds us, on the one hand, of the policies of reproductive planning in Brazil, information and contraception, but, on the other hand, the social ideas about children. Klaas Woortmann6 and Valéria Corozocass7 wrote about this in different time periods, but both focus on kinship in the low classes.

For Woortmann6, children involve a “social calculation”, and reflect the status of that woman and that human being in a community. The research conducted in 1970 with people who lived in rural areas, in the Amazon and Northeast regions, and with persons who lived in urban poor neighborhoods, suggests that having children signifies increasing the solidarity network or “co-parenthood”. For this calculation, it is not valid to have only one child, but many. In addition, this means fostering co-dependence among several children.

The intention of Corozacss7 was to understand the logic of the ideas of reproduction and sexuality among Black women from low classes who were receiving care in a public maternity hospital in Rio de Janeiro. In her ethnography, we notice that the concept of children for these women was different than that of the doctors, for whom planning was necessary and had an economic dimension. The anthropologist asked a woman named Vanessa why she had children. She replied: “I wanted to have children, I like it, I have patience with children, I think that a child is good for you, you are not alone, you have company, you have it all”(p. 241). According to the author, “in Vanessa’s words, the sexual act – defined as ‘making love”—and having children not only coincides, but are associated by pleasure. For the doctors, the children were conceived without planning, without being thought about, but for the women “it was making love and making children”(p. 249).

For some women, to have this number of children was natural and/or common, but for other women, as we saw above in the testimony of Karina that opened this section, it was something different, and to a certain extent constraining. Natural or constraining, we noted almost all our interviewees in Recife sought to tie off their tubes in order to have no more children. And this coincides with data collected by another researcher, who conducted research in a contiguous city, Camaragibe, Pernambuco, about contraception practices and the desire for surgical sterilization8.

Stories of pregnancy: “They never explained anything to us”

Cristina, Esther and Karina affirm that they had diagnosed Zika virus during their pregnancies. Some women said that they felt like having a virus disease, with spots on their skin, only for one day, like a type of “weak dengue”. Other women affirmed that they had a fever and other types of discomfort, but not necessarily diagnosed as the virus. While others, like Eva, were not certain whether they had contracted Zika at all: “No, I don’t think I had it, as they say, the pregnancy was a risk, I had fever, pain, tiredness, and a cold here and there, but Zika I don’t think I had it. No doctor told me this . . . I don’t know, I don’t think I had it. Could be? No, no … I didn’t have it. (Her expression was thoughtful). (RL field notes, 2017)

Cristina, for her part, did not understand her pregnancy as a risk because of any virosis. To the contrary, she was treated in a special way for another reason: she was age 41 and for this reason was considered in need of special care. Along this same line, Eva was pregnant with twins. Zélia had a pre-eclampsia during her pregnancy, but received little information about what this meant for her, her child and labor during delivery. Michele had herpes zoster and quite a severe kidney crisis, but refused to have the surgery recommended by the doctors, fearing that this might affect her child. Some had Zika and were diagnosed as such; some never came to know if they had had Zika, for lack of a diagnosis during or even after their pregnancies, because they never had a precise blood test. Still other women recognized other dangerous factors or risk, that were not related to the mosquito, the virus or the syndrome.

Beyond the health of the pregnant woman, our conversations with them also involved the health of the fetus. Cristina, Jandira, Sandra Julia, Jaqueline and Karina discovered that the baby had microcephaly during their pregnancies by way of an ultra-sound exam. It was recurrent to hear that “the doctor said that the baby had a small head”. This news was generally given during the second quarter of the pregnancy (between the fourth and fifth month), during morphological exam, a type of ultra-sound that analyzes the possibility of the Down syndrome and heart problems.

Paulinho is Jandira’s first child. Between the third and fourth months of her pregnancy she contracted Zika. She had two ultra-sound exams. In the second exam the problem appeared. Jandira said that on that day, after the exam, she cried all the way to her mother’s home, she cried a lot. Her mother lives close by in the same neighborhood. After that, she would cry at any moment, in any place. “The doctor said that he had a problem in his head. That he would take a long time to learn things”. They did not explain many things to her – and this is a complaint/observation of many of the women that we met. At the end, she said, “So, I went to the internet to see what this was. I saw those photographs, the children all ugly, with an ugly head. I asked myself, ‘My God, my child will be like that?’ I became very sad and cried all the time”. (LV field diary, October 2016)

We asked how the pregnancy had been. I thought that Jaqueline would answer this question, but Sandra, her mother, and grandmother of the kid, who continued: “It was normal. The morphological exam he showed us was in the fourth month”. “I think that it was in the third month, mother,” corrected Jaqueline. “Or maybe it was in the sixth month?” asked Sandra again. They were in doubt about when the micro was detected in the ultra-sound exams. “So, it was micro. But we did not know what was normal. They did not explain anything to us, at that point no one was talking about this”, said Sandra. They did not explain this to us”, I heard this many times during that week. (SF field diary, 2016).

Eva, the mother of four children, was pregnant with twins, one of them died in the seventh month, but she was denied an ultra-sound exam, when she affirmed that she could not feel the baby in her womb. She only had access to the exam in the eighth month when she knew that her baby was dead, and the twin was born shortly thereafter with the diagnosis of microcephaly.

The doctors didn’t seem to know about what had happened, because theysupplied little information to the pregnant women at the time. Basically, they communicated that something seemed different, that the child’s head was small, or that the exam did not allow them to see the head, because, according to what Goreti heard from the ultra-sound technician – “the flesh of a woman in very hard to see by ultra-sound”. But they didn’t listen to and/or offer support to these women, who by themselves sought the significance of what was SCVZ. At home, afterward, generally via the internet or in personal encounters or on conversations by cell phone apps with other women that they met in the corridors of the institutions, they were able to piece together information about their children. Their previous experience, with pregnancies and children, was also a central reference for these women. During an interview, we wanted to know if Karina had had an ultra-sound exam during her pregnancy:

Yes, twice. I did the first one at a private clinic here near my home. In the first exam, I saw that there was something in her head, but the doctor thought all was normal. But I knew there was something there. I already had 4 children. In the second ultra-sound exam, they saw the problem. (Notes from SF’s field diary, 2017).

The imagined or expected baby2,3 no longer was such and the rest of the pregnancy still had to be completed. What was the experience of these women during their pregnancy, knowing that they were carrying a baby in their wombs that would have limitations and make many demands on them? Not much has been discussed or written about this important point, as we see it. It is certain that this subject was new and not well known in bio-medicine, but nothing seems to justify the way that these women were [not] communicated about this after the diagnosis. In relation to these sentiments, Diva told us that, with the news (the results of the morphological exam), she “had a mixture of happiness, because she wanted a boy, and sadness when I discovered that he had problems” (Notes from FV’s field diary, 2016). Another woman, Solange “became desperate, and thought of giving the child away, because, according to her, she did not have financial or emotional conditions to care for a special child. She said she didn’t tell her husband about this thought of hers” (LV field diary, 2016).

For other women, like Ester, however, care for a baby with microcephaly was understood as a bestowal, but also a task of social importance that involves devotion, sacrifice and expenditures: “He was a present, but as they say, I don’t wish this for anyone. Eye glasses, medicine, diapers, food . . . It’s really very difficult, I don’t wish this for even my worst enemy. My husband works, right, so I don’t have help from anyone” (Notes from RL’s field diary, 2017). These testimonials reveal the ambiguity of this very initial phase of the familiarity with the news, with understanding of the deficiency, as this unexpected reality affected the family’s plans.

Stories of the Birth: “After the dash came the fright”

Some women, as we saw in the previous section, learned about the health problems of their child while he/she was still in the womb. But the majority of these women of the first generation were only informed about the new situation by an ultra-sound exam when they were in labor, during delivery or even a few days after the birth. Goreti and Esther narrated this moment. The former explained that she only discovered microcephaly when her child was born.

Goreti: I didn’t expect this. It was a shock. It was as if you had planned to make a trip to Rio de Janeiro. But suddenly, the pilot announced that we would land in another city. Instead of Rio de Janeiro, the plane went to Maranhão. You had to change all the places you had planned to visit. You will have to plan what you want to visit in Maranhão. Thus, it was a forced adaptation. (SF field diary, 2017).

The large proportion of these births were vaginal, or as they say, “normal”. Practically there were only two situations with cesarean sections, but even so, this was because these women wanted to do a “tube tie”, as they say. In this pregnancy that they desired to be their last, they wanted “surgery”, and for this reason scheduled the operation, but their previous children had been via vaginal births. However, in their narratives, the vaginal birth did not mean absence of violence, approval or good practices. The births narrated were not easy. To the contrary, the narratives suggest procedures carried out without consent, without previous information, abusive maneuvers, loneliness and/or a moment of tension, as Julia related about her desire to have a “tube tie” and the necessity of her “creating a scandal” to have it guaranteed:

I had passage and everything. He was not a large child. I had lots of water in my womb. My belly was very large, but not him, not the baby. I had had my other children by natural birth. The problem was that I had made an agreement with my pre-natal doctor. I would have a caesarian section to tie off my tubes. I wanted to the tube tie with my previous kid. But that didn’t work out. But they had that thing about age, the number of children. That was to be my last pregnancy. I didn’t want to have any more children. I explained to the nurse, “The way the world is today, there is this law that says that the child can decide everything, can supersede the mother and father. I don’t like this. I think there must be respect. Thus, for this reason, I did not want to have any more children. It is difficult to raise children, teach the right things for them”. (SF field diary, 2016).

They were surprised with the malformation of their children and for this reason were hospitalized for another one or two weeks so that the child could be examined, even though they were recovered and released, as usually happens 24 hours after a vaginal birth or 48 hours after a surgical birth. Or the diagnosis was delivered, during the APGAR or pediatric exams, when the little head of the child was measured and it was discovered that the circumference of the head was between 32 and 33 cm. In two cases, SCVZ was only confirmed after one month and after serological exams were done to detect the Zika virus. Diva, for example, was hospitalized for eight days after the birth and tells us about the emotional abandonment she suffered: “At that time, for me, one psychologist appeared to determine what had happened and to set up an appointment, but this appointment never occurred. For the baby, a neurologist, a doctor and a bunch of students came to see me” (FV field diary, 2016).

Regarding this article, two points stand out: the shock of discovering microcephaly at birth, and the absence of any specific recommendation for the births of women who had Zika during their pregnancy or SCVZ diagnosed. In this way, having the baby really appears to be able to “rest up”, even though the long rest in fact turned out to be a true marathon in search of more specific diagnostics, domestic arrangements for child care, setting up appointments, and finding professionals available to offer therapies of “early stimulation” for these children.

Why microcephaly? The explanations reported by the women

We sought to understand how did these women understand the causes of microcephaly and/or SCVZ. At the highest peak of the epidemic, the end of 2015, and earl 2016, the origins of microcephaly were controversial and divided publics and opinions in the scientific field5. Among the women it wasn’t much different, the motives for microcephaly were multiple. Because this first generation of women knew very little about the relation between the vector and this new virus, the women constructed their own explanations both during their pregnancies, as well as after, to explain what had afflicted their children. Here, it is interesting to note how several of these explanations were related to reproductive events. But we can’t lose sight that, when they told us about their explanations regarding a physical formation of their children, they had been already intensely exposed to bio-medical and scientific narratives. They mapped out their opinions, however, within this larger picture.

Debora, age 17, told us that she had a normal birth, but that the anesthesia did not kick in completely and the doctors had to force her belly down because the baby did not come out. Her baby lacked oxygen and was born with microcephaly. For her, it was because of this birth that the baby developed the disability. She said that the doctors made a mistake calculating the birth date and that the birth of her baby had surpassed the correct date.

Debora explained that she knew that the nine-month period had passed, but because of the size of her daughter, that was small and light weight, the doctors thought that she was in her eighth month. Thus, she deduced that they made a wrong estimate for the birth date. (YS field diary, 2017)

In addition, Debora also reiterated that the disability could have resulted from medical malpractice, but also by the expectant mothers. “There are babies with micro because the mother close her legs during the birth. You can’t close your legs”.

If the birth itself appeared as an explanation, vaccines appeared as a possible reason. This subject took to the internet and social networks in general, polarizing groups and segments of health professionals, civil society and scientists9. At that time, versions circulated that a batch of prohibited vaccines or unauthorized vaccines had been applied to pregnant women in that region. This could explain why these cities, and not others, had higher rates of the epidemic. Thus, these women as well as some health professionals who accompanied them also considered that something external could have caused microcephaly, and not necessarily the mosquito. When Eva took her son for a consultation with a neurologist, she was asked about the prenatal vaccines. She explained that, yes, she had been immunized for rubella, the flu. And in return she heard from the doctor:

Doctor: But now it is difficult to know if it was the vaccine or the virus.

Eva: What, doctor? A vaccine can also cause micro?

Doctor: My daughter, learn this. This is not a serious country, don’t confide in vaccines. I, myself, never take a vaccine for anything. (RL field diary, 2017)

Jandira, in turn, attempted the vaccine explanation: “They say it is this, right? We still must do a test. I took a vaccine during my pregnancy. But there were women who didn’t have the vaccine and the child was born with micro. So I don’t know” (SF field diary, 2016).

For some, then, the thesis of the vaccines operated with a certain force, while for others, like Zelia, the cause of the microcephaly was neither the mosquito nor the Zika virus, because many women had had the affliction and did not pass it along to their children. By her reading, there was no cause-consequence between having had Zika then giving birth to a baby with and micro. For her, her daughter had been born with micro because she, the mother, had high blood pressure during her pregnancy.

We asked if she thought that Zika had been responsible for the microcephaly and Zelia responded that no, she thought that it had nothing to do with this, that this didn’t make sense. When we were out on the street again, waiting for the Uber car to arrive, she pointed out several women who passed by randomly on the street, and said: “She had Zika when pregnant . . . That one also . . . The neighbor of that one also had it and nothing happened. I didn’t have Zika and my daughter was born like that”. Zelia had pre-eclampsia in three pregnancies and her life was in danger three times. She said that she “fainted very frequently” when she was pregnant with the third child. (YS field diary, 2017).

For this reason, it seems important to us to continue using the local category “microcephaly”, much more linked to the situation and to the recognition of a disability (or a complex set of them), than to immediately adopt the bio-scientific term, “SCVZ”. This latter term presupposes that microcephaly and the set of other symptoms be necessarily linked and explained by the Zika virus. Debora and Zelia, who related the reality of pregnancy complications, or Eva, who recalled the effects of medicines distributed by SUS, as in the case of the vaccines, are calling attention to a larger and more structural picture of care provided in Brazil for women in reproductive age. The term” SCVZ” can place too much emphasis on the etiological explanations of a pathologic picture, when these women, in a more recent moment, seem to indicate to us that it is not important to look to the past, but to look to the future and think about recognizing, respecting and reversing the disability of their children, guaranteeing them a life with more welfare, comfort and happiness10,11.

The social diagnosis, however, can be broader than the relationship between cause and effect or vector-sickness-disability. It can traverse births, personal stories, vaccines or thus still be unknown of unexplainable. In a more conciliatory manner, not necessarily prioritizing specific causal explanations, but finding broader existential explanations. In different moments, Cristina said during our encounters, that “I thought of only having my eldest daughter, however, God put Ana Paula in my pathway”. (Notes from TS’s field diary, 2017). In another segment she specified these meanings:

Cristina discovered that Ana Paula had a “little problem with her head” when she did the first ultra-sound exam when she was six months pregnant. She told us that “I did not want to face reality. So much so that I told my husband, ‘Ah, everything is OK, etc.’ She said that back then she still had hopes that it would be nothing. But when the second ultra-sound exam the diagnosis was microcephaly, I could no longer deny reality. “At that point I panicked”, she told us. “I cried and cried. But then I thought that this was God’s will, right, and then I was calmer. Because God willed this”. (YS field diary, 2017)

For the more religious women, microcephaly appeared as a life’s mission. A religious mission to be respected and that in the last analysis directly confronted the bio-medical explanations, for example12. Julia explained:

“I was not going to get pregnant. Later, I began a treatment to get pregnant. Before this treatment, Juca appeared. He was a victory for me; it was a present from God”. Later she said, referring to the news of microcephaly right after the birth, “I had a lot of tears in the maternity ward”. And continued, “But, after three days, Juca lifted up his rib cage within the crib. No child does this at that age. This was to shut the mouths of the health professionals”. (SF field diary, 2016)

Contraception and abortion

Two other aspects called our attention, regarding sexual and reproductive life, the theme of contraception and abortion. It is surprising to see the number of women who sought a cesarean section to obtain definite sterilization and encounter a definitive form of contraception. Still quite young women, with more than one child, who had had vaginal births before, but wanted a “tube tie” to “avoid” [further pregnancies]. As other studies have shown8, the tube tie is a way the woman has absolute control over her reproductive life, and no longer has to negotiate with her partner to use a condom or the number of children the couple will bare.

Would this be a symptom of something to be analyzed in the field of sexual education, such as the use of a condom, machismo in conjugal relations, and the overload of the woman as he only one responsible for reproduction? We think that this fact can tell us a lot about the access to contraceptives, and the most intimate gender relations between a couple, especially among lower class women.

On the other hand, the epidemic and the number of children born with microcephaly rekindle the debate about reproductive sexual rights and abortion. In the middle of this epidemic, the defense of the right to abortion gathered strength and has been articulated. In Brasília, Anis Bioethics Institute, a feminist NGO, for example, filed a legal brief for the expansion of the legal abortion, considering the disability and the limitations of life caused by microcephaly, aims at including these cases within the legal permission, if this was the desire of women.

However, among the women we interviewed in Recife, abortion did not appear to be considered. For some, receive this type of child seemed to be a divine task. Jaqueline, for example, told us at the beginning of our field research, that many doctors consulted women about their desire to abort because of the pre-natal diagnosis. But the doctors who considered the hypothesis of interrupting the pregnancy were considered “cold”.

And the doctors wanted me to do an abortion. They offered the abortion option, saying that the child would not be born, that if it was born, it would vegetate, etc. I did not want this at all. They said, “You don’t want this? So you are crazy”. They told me that I was crazy, and they called a psychologist to convince me. It was my child! I wanted my child. During the ultra-sound exam, I was looking at that baby; I saw he/she had a finger in the mouth. I said, “Look, he/she has a finger in the mouth, that is so beautiful!” The woman doctor looked at me, and thought that I was crazy. She said that I was crazy, that I needed the professional help of a psychiatrist. Just because I was observing the ultra-sound exam, seeing my child, admiring him/her in my belly”. Doctors are cold, girl. The neurosurgeon was even worse. (SF field diary, 2016)

One dimension that these women brought up and that none of us had thought about was the case of the children born dead [still born] and, from inside the maternity wards, some women described these moments. “Born dead” could be considered the result of an abortion or not. In these two cases, the manner that these children were treated caused consternation. Some stillborn children were destined for scientific studies, according to our informants, without the consent of the mothers.

Karina saw two abortions, one was a baby with micro, where she saw the professionals wrapping the dead child up in a cloth. And taking advantage of the anesthetized state of the mother, made her sign a term of consent making the stillborn available for study. They took the dead baby and left the mother with no support. Karina thought that was horrible and inhuman, as she told us. How many other cases like these must have happened since the beginning of the epidemic? (LV field diary, 2016)

Thus, these women were, in large part against abortion, for religious or personal reasons, also because the child has an elevated value in their conceptions of family, subsistence, kinship and care, as we showed above. We cannot forget that many of them, when circulating around the city with their children, on their lap, heard discriminatory statements about the different formation of their children’s bodies and a common accusation was that they had tried an abortion. These were called “abortion children”. Thus, the disability had become not only an evidence of this amoral act, but also as personal penalization. To disassociate oneself from abortion, however, was important in many ways. But, even so, they still considered the importance of family planning and reproductive life. Knowing that they were the main caretakers of babies and children in their home, they sought above all a tube tie as a definite solution and autonomy for this decision.

Final comments: New Pregnancies

Last of all, we would like to bring up something that began to appear when we were doing our field research: a new pregnancy. Goreti, in May 2017, when we returned to Recife, was pregnant for a second time and, according to her, “the virus was still active, that is to say, the virus was still detectible in the laboratory exams. And, for this reason, she was submitted to a monitoring protocol. For her, it didn’t seem to be a problem. This time, she was expecting a girl. The other women, however, seemed to judge her or not accept a new pregnancy of a woman who already had a child with SCVZ and that, in this case, ran the risk of a repeated experience (SF field diary, 2017). Cristina, for example, commented on this kind of decision as Goreti’s: “I am not crazy, I can see reality. I take care of what is mine”. She seemed to think it quite irresponsible to get pregnant again in these circumstances and still have to let others care for her children. She emphasized several times that “she took care of what was hers” (YS field diary, 2017)

But this debate also opens another dimension: the persistence or permanence of the virus in the bodies of the women who had had the Zika virus. At the time of the explosion of the epidemic, to a certain extent, it was recommended that they not get pregnant. This position came from doctors, the media and officially from the Ministry of Health at the time. It was feared that the SCVZ would peak again in the subsequent Brazilian summer, the period of the greatest proliferation of the mosquito. But also, it was feared that the women who had already contracted Zika get pregnant, it was unknown how the transmission would occur. In the same line, alarming news about the sexual and oral transmission of the virus also circulated, generating social panic. The masculine figure was infrequently mentioned, in official speeches as well as domestic spheres. One or another woman commented that her husband also had had Zika, before or during her pregnancy. No one remembered cases of men who had been called in by the health services to also do serological tests and there were few initiatives, like a local feminist NGO, the Grupo Curumim9, to involve men directly in epidemics and in the care of children with the syndrome.

Since then, not much was invested in this discussion and nothing seems to have been proven in this regard, we still do not know if the transmission of the virus from the mother to the fetus would not occur, even if she still had the virus actively in her body. Even without certainty, women like Goreti reminded us of the value of autonomous reproduction, despite being judged for supposedly not being “good mothers”, for already having a microcephaly child to care for or, for opting to bring another child into the world, for being irresponsible and/or egotists. It seems very difficult to control all this, especially as we notied that the main contraceptive method available to these women was female sterilization. It is interesting to reflect on the overwhelming responsibility of these women as the only person in charge of contraception, pregnancy and reproduction and, in a more dramatic manner as time goes by, as the solo caretaker for the daily and intensive needs of a child with severe disabilities.

Acknowledgements

This text counted on the support of many persons and institutions to be written. FINATEC and PRO-IC and the Department of Anthropology of the University of Brasília provided resources for travel and stay in Recife, Pernambuco. Professor Soraya Fleischer was acccompainied by the Anthropology students Yazmin Safatle, Thais Souza, Lays Venâncio and Fernanda Vieira and Raquel Lustosa did field research and Thais Valim and Lays Venâncio did the preliminary data organization for this article. We would also like to thank David Fleischer for the translation of this article into English.

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c We will mention sections from the field diaries; the prime empirical material generated by this project, in three periods between 2016 and 2017. To guarantee the authorship, we identify the initials of who produced the field diary being cited: Yazmin Safatle (YS), Thais Souza (TS), Raquel Lustosa (RL), Lays Venâncio (LV) and Soraya Fleischer (SF).

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Received: November 19, 2017; Accepted: December 12, 2017

Collaborators

Both authors efectively participated ​in the elaboration of the ideas, writing, data discussion, revision and final approval of the paper.

Translated by David Fleischer ​

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