Abstract

Introduction

In 2015, the Zika virus epidemic in Brazil was recognized internationally as a significant emerging public health problem, given the evidence of this virus as a cause of fetal malformations in the gestational period, with severe effects on the fetus’ central nervous system, especially microcephaly¹1 Camargo Junior KR. Zika, microcefalia, ciência e saúde coletiva. Physis. 2016; 26(1):9-10.

2 Diniz D. Vírus Zika e mulheres. Cad Saude Publica. 2016; 32(5):1-4.

3 Lesser J, Kitron U. A geografia social do zika no Brasil. Estud Av. 2016; 30(88):167-75.-⁴4 Valle D, Pimenta DN, Aguiar R. Zika, dengue e chikungunya: desafios e questões. Epidemiol Serv Saude. 2016; 25(2):419-22.. This condition was later called Zika Virus Congenital Syndrome (ZVCS) and demanded a wide range of clinical and epidemiological studies and studies on its social and human consequences.

Babies with ZVCS had microcephaly or other neurological disorders and possibly brain calcifications, epilepsy, hearing and visual impairments, and psychomotor development delays⁵5 Williamson KE. Cuidado nos tempos de Zika: notas da pós-epidemia em Salvador (Bahia), Brasil. Interface (Botucatu). 2018; 22(66):685-96., resulting in a chronic health condition that comprises continuous physical and structural disabilities. As they demand daily arrangements for elaborating new life forms, such illnesses are fragilizing experiences and generate family suffering. The vulnerability experienced by relatives of babies with ZVCS combines difficulties in accessing income, weaknesses in affective and social bonds, and living with stigma and unequal access to public goods and services, with long-term social and economic repercussions⁶6 Sá MRC, Vieira ACD, Castro BSM, Agostini O, Smythe T, Kuper H, et al. De toda maneira tem que andar junto: ações intersetoriais entre saúde e educação para crianças vivendo com a síndrome congênita do vírus Zika. Cad Saude Publica. 2019; 35(12):e00233718..

Like all human reproduction-related issues, gender played an important role in the impacts and responsibilities in the Zika virus epidemic, imposing dramatic consequences on women, involving pregnancy, the baby’s birth, its diagnosis, and treatment¹1 Camargo Junior KR. Zika, microcefalia, ciência e saúde coletiva. Physis. 2016; 26(1):9-10.

2 Diniz D. Vírus Zika e mulheres. Cad Saude Publica. 2016; 32(5):1-4.-³3 Lesser J, Kitron U. A geografia social do zika no Brasil. Estud Av. 2016; 30(88):167-75.. The epidemic showed an impacting scenario, with the birth of children with unknown health needs and the pilgrimage of families seeking health services, which notably led mothers to a fight for rights before the State⁷7 Moreira MCN, Mendes CHF, Nascimento M. Zika, protagonismo feminino e cuidado: ensaiando zonas de contato. Interface (Botucatu). 2018; 22(66):697-708..

In the face of the epidemic, different public institutions turned to developing clinical research and providing care to children and their families. In this context, a line of Zika care and studies was developed in a research institute in Rio de Janeiro, Brazil. The research “Psychosocial Implications of the Zika Virus Congenital Syndrome (ZVCS): the experience of relatives in caring for children with neurological disorders from a group device” was conducted and aimed to support family members by offering a space for sharing the emotional experience of their babies’ illness and investigating the consequences of ZVCS for parenting and family care. The theoretical framework was guided by a psychoanalytical psychosocial approach with an interdisciplinary perspective, articulating the psychic record and the social reality and its determinations in individual stories⁸8 Enriquez E. A organização em análise. Petrópolis: Vozes; 1997.,⁹9 Sá MC, Azevedo CS. Uma abordagem clínica psicossociológica na pesquisa sobre o cuidado em saúde e o trabalho gerencial. In: Baptista TWF, Azevedo CS, Machado CV, organizadores. Políticas, planejamento e gestão em saúde: abordagens e métodos de pesquisa. Rio de Janeiro: Fiocruz; 2015. p. 219-53., in dialogue with Public Health studies related to the Zika virus epidemic. This paper is an excerpt from this larger research and targets the baby’s and family care experiences’ subjective effects. It aims to study the impact of the birth of babies with malformation, parental psychic reorganizations, and consequences on care, particularly maternal care.

Methods

The research was carried out from March to December 2017 in an outpatient clinic of a research institute geared to pediatric care for children with ZVCS. The study period was a critical moment in the epidemic, in which most babies were less than one year old, in a context of scarce scientific information and preliminary design of specific public policies.

The investigation was developed through a one-hour group meeting held every week and open to mothers, parents, and other relatives of the children attended at the pediatric outpatient clinic geared to Zika. They were invited to participate in the group in a room close to the offices while waiting for medical care. All those willing to participate were included as research subjects.

The authors conducted the groups, and one of them was a member of the clinical team. The dual belonging of one of the authors was clear to the participants. The researcher must consider such an issue from the viewpoint of the psychosociological approach, and must be aware of the subject’s idea of him and its implication.

Based on recognizing the situation of vulnerability imposed by illness, we aimed to provide a space for receiving and listening to the subjects and, simultaneously, producing knowledge about their experiences of caring for babies with ZVCS. We intended to support family members with the group space, favoring the expression of their narratives, the exchange of experiences, and the individual and collective elaboration of their experiences with their children.

The methodology was based on the clinical, qualitative perspective¹⁰10 Turato ER. Tratado da metodologia da pesquisa clínico-qualitativa: construção teórico-epistemológica, discussão comparada e aplicação nas áreas da saúde e humanas. Petrópolis: Vozes; 2008., particularly the French clinical-psychosociological approach. Such an approach is anchored in the understanding of the clinical device simultaneously as research and psychosociological intervention⁸8 Enriquez E. A organização em análise. Petrópolis: Vozes; 1997.,¹¹11 Barus-Michel J. O sujeito social. Belo Horizonte: PUC-Minas; 2004.. Therefore, we understand that the construction of group narratives leads its participants to share their pain and apprehend and symbolize the situations in which they are involved. The psychoanalytic orientation provided an understanding of the group as a place to look closely at the subjects and a field of mediation, recognition, support, and continence of subjective and psychosocial experiences¹²12 Kaës R. O grupo e o sujeito do grupo: elementos para uma teoria psicanalítica do grupo. São Paulo: Casa do Psicólogo; 1997.,¹³13 Figueiredo LC, Savietto BB, Souza O. Elasticidade e limite na clínica contemporânea. São Paulo: Escuta; 2013.. The coordinators were guided by an active clinical stance in tune with the participants’ modulations, encouraging sharing individual experiences and recognizing difficulties and impasses, but highlighting that there were also group processes of coping with the illness situation.

Thirty-two group meetings were held. Two meetings were staged in the ward due to many babies with ZVCS hospitalized at any given time. While hospitalization is a more tense moment for relatives, mothers showed much interest in group meetings and brought dense narratives of their care course.

It is important to note that the context of the epidemic was also accompanied by an overload on families regarding the demands for participation in research and this situation was also found in the clinic where we developed our work. This study provided simultaneous support to the subjects through the adopted methodology.

The groups began with a presentation of their proposal: as a space for talking and listening to the experience of relatives from the diagnosis of Zika; and as a research space, presenting its objectives and the Informed Consent Form. We also informed that psychology professionals could monitor relatives and had guaranteed their presence in the group, regardless of their participation in the research. We used a question that could trigger the narratives to start the group; in the first months, it was: “You are bringing your children with Zika to receive care. What was this experience like for each one of you?”. Later, with the presence of older babies, we modified the questions a little, as follows: “How is this moment of child care? What are your concerns at the moment?”. All group meetings were recorded and later transcribed.

Throughout this period, 59 families participated in the groups, totaling 86 relatives, including mothers, fathers, grandparents, and uncles. It is worth mentioning that most caregivers were mothers, representing 64% of the total number of participations, with grandmothers and fathers sharing the same percentage level of 15%. Most families lived in suburban areas of the city and other municipalities in the state. They had low schooling and more than one child. The maternal role in caring for the child with ZVCS, as a way of experiencing parenting, in which the mother-child dyad predominates⁷7 Moreira MCN, Mendes CHF, Nascimento M. Zika, protagonismo feminino e cuidado: ensaiando zonas de contato. Interface (Botucatu). 2018; 22(66):697-708., was expressed in the narratives and analysis developed here. Other studies on Zika or other chronic illnesses highlight the fundamental gender issue⁵5 Williamson KE. Cuidado nos tempos de Zika: notas da pós-epidemia em Salvador (Bahia), Brasil. Interface (Botucatu). 2018; 22(66):685-96..

The analysis process was based on the psychosociological perspective⁸8 Enriquez E. A organização em análise. Petrópolis: Vozes; 1997.,⁹9 Sá MC, Azevedo CS. Uma abordagem clínica psicossociológica na pesquisa sobre o cuidado em saúde e o trabalho gerencial. In: Baptista TWF, Azevedo CS, Machado CV, organizadores. Políticas, planejamento e gestão em saúde: abordagens e métodos de pesquisa. Rio de Janeiro: Fiocruz; 2015. p. 219-53.,¹¹11 Barus-Michel J. O sujeito social. Belo Horizonte: PUC-Minas; 2004. and the thematic analysis¹⁴14 Minayo MCS. O desafio do conhecimento. 12a ed. São Paulo: Editora Hucitec; 2010.. It built on the empirical material’s active listening work, through a free-floating reading of the groups’ transcripts, allowing a work of association, construction of meaning, and identification of thematic units, in dialogue with the literature, which facilitated the construction of axes and analytical categories.

The primary research was based on three analytical axes: parenting, family and social support network, and care practices in health services. This paper focuses on the first axis of analysis and aims to understand suffering, parental reorganizations, and their experiences in caring for babies. It was organized around three main categories: (i) parenting, baby malformation, and trauma; (ii) bond and affection: parental psychic reorganizations; (iii) care: maternal role, overload, and adaptation.

The study fully met the ethical requirements of Resolution N° 466/CNS/12, and was approved under CAAE N° 60221416.7.0000.5269. All family names are fictitious. At the end of the research, we held a meeting with relatives to present and discuss the results.

Results and discussion

Parenting, baby malformation, and trauma

Parenting can be understood as a process of building the parent-child relationship from a set of representations and affections of parents vis-à-vis their baby, which becomes especially the object of their subjective work during pregnancy¹⁵15 Missonnier S. O início da parentalidade, tornar-se mãe, tornar-se pai: as interações dos pais e da criança antes do nascimento. In: Solis-Ponton L, organizador. Ser pai, ser mãe - parentalidade: um desafio para o terceiro milênio. São Paulo: Casa do Psicólogo; 2004.

16 Zornig SMA-J. Tornar-se pai, tornar-se mãe: o processo de construção da parentalidade. Tempo Psicanal. 2010; 42(2):453-70.-¹⁷17 Aragão RO. Presença/ausência materna e os processos de subjetivação [tese]. Rio de Janeiro: Pontifícia Universidade Católica do Rio de Janeiro; 2016.. There is then a work to prepare the relationship with the baby, from which the imaginary cradle in which he will be received will be established, full of dreams and future aspirations.

The news of the malformation establishes a crisis, a “fracture” in the ideal represented by the baby, causing a great shock and an extensive process of parental psychic reorganization. The birth of a malformed baby represents contact with an unknown world, with something unrepresentable, in such a way that we could say that “things remain suspended. Nothing supports the situation [...]. It is this hole that traumatizes”¹⁸18 Ansermet F. Clínica da origem: a criança entre a medicina e psicanálise. Rio de Janeiro: Contracapa; 2003. (p. 50).

A striking axis in the parental narrative is precisely the traumatic experience of shock and awe triggered by the diagnosis and the baby’s encounter; some parents say they feel helpless.

The encounter with the baby was a moment feared by mothers as it stirred anguishes related to a body image that portrays the malformation:

The mother is faced with the baby’s body, with its difference, as a risk, configuring what Aulagnier called “encounter trauma”¹⁹19 Aulagnier P. Nascimento de um corpo, origem de uma história. Rev Lat Am Psicopatol Fundam. 1999; 2(3):9-45. (p. 41). The trauma refers to a hole in the symbolic order; an excess, something that breaks out and breaks the sense of continuity of the being, generating a breach in reliability, which can bring an experience of the “meaningless”²⁰20 Pereira LF, Winnograd M. Trauma e narrativa: o impacto da leucemia na infância. Cad Psicanal. 2017; 39(36):175-98..

In the case of Zika, uncertainties and lack of knowledge of the disease and its effects were markedly experienced in the first year of the epidemic, both by family members and health professionals, increasing family suffering.

The social context increased parental fears and potentiated the effects of the traumatic encounter with the baby, as it anticipated fears about his/her future and how he/she would be accepted socially. At the time of the onset of the epidemic and the discovery of the relationship between microcephaly and the Zika virus, the media carried news and images that reinforced fear and uncertainty for family members and even referred to babies in a disqualifying way²¹21 Diniz D. Zika: do sertão nordestino à ameaça global. Rio de Janeiro: Civilização Brasileira; 2016.. Health authorities also referred to babies violently, calling them “a sequelae generation”²²22 Mariz R. Zika: Ministro defende mobilização para evitar "geração de sequelados". O Globo [Internet]. 2016 Jan 13 [citado 20 Jun 2018]. Disponível em: https://oglobo.globo.com/brasil/zika-ministro-defende-mobilizacao-para-evitar-geracao-de-sequelados-18465397
https://oglobo.globo.com/brasil/zika-min... or “lost generation”, highlighting ethical issues and state violence²¹21 Diniz D. Zika: do sertão nordestino à ameaça global. Rio de Janeiro: Civilização Brasileira; 2016.. This context reinforced parental anxieties:

According to Diniz²¹21 Diniz D. Zika: do sertão nordestino à ameaça global. Rio de Janeiro: Civilização Brasileira; 2016., the use of the dehumanizing “vegetable” metaphor was used by doctors to refer to babies. It is disrespectful and offensive to parents. The experiences of loss heightened by child malformation since birth is a public event and the fractured ideal that the child represents affects the family network and the experience of being a father and mother in society²³23 Gomes AG, Piccinini CA. Malformação no bebê e na maternidade: aspectos teóricos e clínicos. Psicol Clin. 2010; 22(1):15-38., corresponding to a social recognition denial experience²⁴24 Honnet A. Luta por reconhecimento: a gramática moral dos conflitos sociais. São Paulo: Editora 34; 2009.. The psychosocial fragility is manifested then through the lack of social support and stigmatizing behaviors that disqualify the child and his family, instilling in parents fears about the future.

Bond and affection: parental psychic reorganizations

Creating a humanizing bond, making the baby your child, implies building a shared story in which the otherness component is present²⁵25 Aragão RO. Quem é esse bebê, tão próximo, tão distante? In: Atem LM, organizador. Cuidados no início da vida: clínica, instituição, pesquisa e metapsicologia. São Paulo: Casa do Psicólogo; 2008. p. 179-88.:

Psychic parental work is hard. It requires time to overcome the trauma and build affective investment and bond with the real baby²⁶26 Aulagnier P. Nascimento de um corpo, origem de uma história. Rev Lat Am Psicopatol Fundam. 1999; 2(3):9-45.. As suggested by Gomes and Piccinini²³23 Gomes AG, Piccinini CA. Malformação no bebê e na maternidade: aspectos teóricos e clínicos. Psicol Clin. 2010; 22(1):15-38. in their study on malformation and motherhood, mothers feel that:

There is much dedication, but also ambivalence, in the sense of the existence of contradictory and antagonistic effects:

There is a subjective, initially strange work of transforming the baby into a family member. The mother’s adjustment effort will allow her to establish contact with the baby’s emotional state²⁷27 Klautau P, Damous I. Caminhos e descaminhos do luto: o trabalho de separação na relação mãe-bebê. Cad Psicanal. 2015; 37(33):51-68.,²⁸28 Roussillon R. L'entreje(u) primitif et l'homossexualité primaire "en Double". In: Roussillon R, organizador. Le jeu et l'entre-je(u). Paris: P.U.F.; 2008. p.117-34.. From the affective investment in their son’s particularities, some parents showed that he was both an object of care and recognized in his singularities. Mothers considered their baby’s sensitivity and unique tastes:

The narratives also indicated another repercussion in the subjective maternal position: extreme maternal involvement, hindering any baby distancing. Children in serious situations demand more care and trigger intense anxieties in their mothers, which can lead to excessive involvement and responsibility:

While maternal overprotection can be adaptive and zealous protection, to some extent necessary for the child, it can also be understood otherwise:

Another situation of a baby that is also severe is emblematic of the presence of selfless motherly love. In this case, issues arising from the weak family and social network made the situation dramatic:

This fragment portrays an experience of family fragility, with massive affective investment directed at the sick child, hindering care for other children. In these situations, parental reorganizations articulated subjective processes, and socially vulnerable contexts were also identified in other studies on Zika, in which motherhood is associated with the tireless struggle for the sick child⁷7 Moreira MCN, Mendes CHF, Nascimento M. Zika, protagonismo feminino e cuidado: ensaiando zonas de contato. Interface (Botucatu). 2018; 22(66):697-708. and the radical change in family routines. Precariousness is often expressed in the flawed social networks, with even the removal of family and friends.

Other repercussions of the ZVCS on the subjective maternal position identified by us are also pointed out in other studies on malformation and motherhood²³23 Gomes AG, Piccinini CA. Malformação no bebê e na maternidade: aspectos teóricos e clínicos. Psicol Clin. 2010; 22(1):15-38.,³⁰30 Ciccone A. Clinique du Handicap: fracture dans la transmission. In: Ciccone A. La transmission Psychique inconsciente. Paris: DUNOD; 2012. p. 157-97. and move towards anxiety, depressive processes, in which there are great difficulties to carry out the work of mourning.

In our research, we followed the story of a baby whose mother and grandmother participated in the groups. The mother produced an emotional withdrawal vis-à-vis her baby, who underwent surgery and several hospitalizations. She struggled to look at and touch him. Care was transferred to the grandmother. We can understand that the child’s future uncertainty may have hindered the maternal subjective investment, acting as a brake on the circulation of affection and mother-baby care²³23 Gomes AG, Piccinini CA. Malformação no bebê e na maternidade: aspectos teóricos e clínicos. Psicol Clin. 2010; 22(1):15-38.. Thus, the “primary relationship”³¹31 Stern DN. A constelação da maternidade: o panorama da psicoterapia pais/bebê. Veronese MAV, tradutor. Porto Alegre: Artes Médicas; 1997. (p. 165), a motherhood-specific theme, deals with establishing the affective bond with the baby, of the mother recognizing the baby as her own and giving in to his/her needs is, sometimes, conflicting²³23 Gomes AG, Piccinini CA. Malformação no bebê e na maternidade: aspectos teóricos e clínicos. Psicol Clin. 2010; 22(1):15-38.. It is important to emphasize, in this case, that the maternal affective withdrawal and the difficulties of exercising the caregiving function occurred in a context of significant social vulnerability. The support network’s fragility was evident: the father’s abandonment, the unconsolidated marital relationship, and the mother with no job placement and living only on the continuous cash benefit to which the baby was entitled by social security.

Care: maternal role, overload, and adaptation

Pregnant women and mothers were the central figures in the Zika epidemic due to their anguish and afflictions and their observation skills. From their reports, we could build scientific knowledge about the babies’ neurological changes²¹21 Diniz D. Zika: do sertão nordestino à ameaça global. Rio de Janeiro: Civilização Brasileira; 2016. from their accounts.

Maternal role showed several faces in our study: expression of resistance and struggle, whether for health care and social rights; confrontation with doctors; and a face of mothering in the context of illness.

The demands of a baby born with special health conditions require a maternal functioning proper to the context of biomedical care, traversed, in the case of the Zika Virus epidemic, by a lack of knowledge about the disease and its developments, which becomes part of the experience of households:

In some cases, mothers showed an active presence and influence in decisions regarding the therapeutic plan, operating complex collaborative relationships:

In caring for babies with ZVCS, and as is usual in chronic child conditions, mothers become full-time caregivers, governed by hours of care, tests, procedures, and medications⁵5 Williamson KE. Cuidado nos tempos de Zika: notas da pós-epidemia em Salvador (Bahia), Brasil. Interface (Botucatu). 2018; 22(66):685-96., hindering glimpsing their life projects:

Leadership, exhaustion, and suffering also marked the lives of mothers:

The maternal burden in the sick baby’s daily care is another factor of suffering, hindering the temporary leave for rest or even care for other children. This maternal experience of extreme child dependence, which involves her life continuously and intensely, marks the reports about the Zika epidemic²2 Diniz D. Vírus Zika e mulheres. Cad Saude Publica. 2016; 32(5):1-4.,³²32 Scott RP, Lira LC, Matos SS, Souza FM, Silva ACR, Quadros MT. Itinerários terapêuticos, cuidados e atendimento na construção de ideias sobre maternidade e infância no contexto da Zika. Interface (Botucatu). 2018; 22(66):673-84.. In this study, some mothers narrated with great suffering the distance, especially emotional withdrawal with their other children. In some cases, care for other children has been transferred to grandparents.

Guilt also emerged in the narratives, expressing the difficulties experienced by mothers in this specific context of treatment:

We can understand that this feeling of guilt expresses an ethical sense of compassion and reparation proper to responsibility regarding the other³³33 Plastino CA. A dimensão constitutiva do cuidar. In: Maia M, organizadora. Por uma ética do cuidado. Rio de Janeiro: Garamont Universitária; 2008. p. 53-88.,³⁴34 Figueiredo LC. Cuidado e saúde, uma visão integrada. In: Figueiredo LC. Cuidado, saúde e cultura: trabalhos psíquicos e criatividade na situação analisante. São Paulo: Escuta; 2014. p. 9-29.. The baby’s developmental difficulties trigger intense fears of failure³¹31 Stern DN. A constelação da maternidade: o panorama da psicoterapia pais/bebê. Veronese MAV, tradutor. Porto Alegre: Artes Médicas; 1997.. They seek to adapt to the care situation and develop a “know-how” to address their different and frail children³⁵35 Wanderley DB, organizador. Agora eu era o rei: entraves da prematuridade. Salvador: Ágalma; 1999. Agora eu era o rei; p. 141-51..

The “life-growth”³¹31 Stern DN. A constelação da maternidade: o panorama da psicoterapia pais/bebê. Veronese MAV, tradutor. Porto Alegre: Artes Médicas; 1997. theme (p. 164) underpins one of the motherhood-specific thematic axes, which refers to the intense fear about babies’ life and development. Throughout the study, this theme became central with the growth of babies, who completed their second year of life at the end of the research. Due to the neurological changes, the intense fear translates into concern with the development stages’ markers.

Thus, the difficulties of anticipating development become a source of distress. Anticipation is proper to the experience of temporality and is protective. It is a guiding thread for symbolization processes³⁶36 Missonier S. Raízes epistemológicas da antecipação e clínicas de sua gênese na perinatalidade. In: Aragão RO, Zornig AS, organizadores. São Paulo: Escuta; 2018. p. 43-71. and, in the case of children, for understanding the variations in their development.

Williamson’s study⁵5 Williamson KE. Cuidado nos tempos de Zika: notas da pós-epidemia em Salvador (Bahia), Brasil. Interface (Botucatu). 2018; 22(66):685-96. with narratives of mothers of children with ZVCS points out that time is experienced simultaneously as uncertainty and hope. He notes that “caregivers also live between eternal waiting and crises, between hope and its lack thereof. [...] While present, hope is on hold, waiting for the future to unfold”⁵5 Williamson KE. Cuidado nos tempos de Zika: notas da pós-epidemia em Salvador (Bahia), Brasil. Interface (Botucatu). 2018; 22(66):685-96. (p. 689).

Based on the complex and unknown manifestations of ZVCS, the reports show some parents’ responses in the face of the unpredictable future. Such responses are permeated by the paradox of wanting to turn only to the present, “thinking about today”⁵5 Williamson KE. Cuidado nos tempos de Zika: notas da pós-epidemia em Salvador (Bahia), Brasil. Interface (Botucatu). 2018; 22(66):685-96., but at the same time, imagining the possibility of overcoming the limits of development that frighten these parents:

The hope of overcoming was present in the account in which children with microcephaly manage to develop closer to the desired condition:

The imaginary way of building a positive representation for the future seeks to allow withstanding the suffering of confrontation with the limits imposed by illness³⁷37 Ferenczi S. Reflexões sobre o trauma. In: Ferenczi S. Psicanálise IV. 2a ed. São Paulo: WMF Martins Fontes; 2011. v. 4, p. 126-35. (Obras completas). and which are still not clear to parents. A psychic work of adaptation that seeks to establish continuity.

We can identify weaknesses and uncertainties at the care level, but simultaneously, the search for life-integrated care, which is expressed in the possibility of parents to be satisfied with their child to invest in their potential:

In some cases, paths of shared care are pointed out with other family members or daycare centers. The demand for children’s socialization and introduction in school life intensifies with growth.

The support network, both family and institutional, is fundamental to favor the care and the emotional balance of the mother, with a “protective continent”¹⁵15 Missonnier S. O início da parentalidade, tornar-se mãe, tornar-se pai: as interações dos pais e da criança antes do nascimento. In: Solis-Ponton L, organizador. Ser pai, ser mãe - parentalidade: um desafio para o terceiro milênio. São Paulo: Casa do Psicólogo; 2004. function (p. 116). However, lack of support and family and institutional solidarity were also found, expressing psychosocial fragility.

Grandparents are considered fundamental figures and can fulfill a supportive role and curb parents’ vulnerability²³23 Gomes AG, Piccinini CA. Malformação no bebê e na maternidade: aspectos teóricos e clínicos. Psicol Clin. 2010; 22(1):15-38..

Although there is a lot of dependence and many treatment needs, some mothers sought moments when they could be alone, and therefore a little more separated from their children, turning to themselves. At the end of the research, with children almost two years old, the investment in other activities, particularly studying or working, was more present on the part of the mothers:

Although our research and several studies on Zika⁷7 Moreira MCN, Mendes CHF, Nascimento M. Zika, protagonismo feminino e cuidado: ensaiando zonas de contato. Interface (Botucatu). 2018; 22(66):697-708. reaffirm parenting models in which the mother is the primary caregiver, and in many cases, the father is absent, it is essential to highlight that we found a more nuanced reality, with some care sharing reports. An exemplary case was narrated by the father himself, who brought his daughter for a visit, without the mother’s presence:

It is important to note that the possibilities of having the support of a daycare center to share care also depend on the severity of the children’s organic changes. Throughout treatments, the parents were faced with unforeseen circumstances and, in the most severe cases, with subsequent hospitalizations. It is a life of stopping and starting over, imposing precariousness⁵5 Williamson KE. Cuidado nos tempos de Zika: notas da pós-epidemia em Salvador (Bahia), Brasil. Interface (Botucatu). 2018; 22(66):685-96. and difficulties in sharing the child’s care and self-care.

While we observe the desire and even onset of experiences of sharing the child’s care with relatives or daycare in part of the maternal narratives, this process reflects the resources affordable to few families, portraying inequality and social vulnerability processes. Intersectoral public policies are crucial to enhance some level of maternal autonomy, particularly ensuring access to daycare centers, which implies coordinated public education and health policies.

Final considerations

This work discussed the intense parental impact of the birth of babies with malformations, psychic reorganizations, particularly maternal ones, and consequences on care.

In ZVCS, lack of knowledge about the disease and its effects was markedly experienced at the onset of the epidemic by family members and health professionals, increasing suffering. The maternal role, a hallmark of studies on the Zika Virus, originates in care ethics. It derives from the affective bond with her child, the mother’s effort to adjust to her baby, and becomes the source of her hopeful perspective and basis for struggles for health care and social rights³³33 Plastino CA. A dimensão constitutiva do cuidar. In: Maia M, organizadora. Por uma ética do cuidado. Rio de Janeiro: Garamont Universitária; 2008. p. 53-88.,³⁴34 Figueiredo LC. Cuidado e saúde, uma visão integrada. In: Figueiredo LC. Cuidado, saúde e cultura: trabalhos psíquicos e criatividade na situação analisante. São Paulo: Escuta; 2014. p. 9-29..

The complex and unknown manifestations of ZVCS, the baby’s developmental difficulties, and the unpredictable future lead parents to adapt care and develop a unique way of dealing with their different children.

The maternal experience of extreme child dependence involves continuously and intensely hinders these mothers’ glimpse towards other life horizons. It is necessary to reflect on the excessive accountability of women who usually become responsible for the daily and intense care of children with severe disabilities. It is essential to highlight the sociopolitical context’s role as symbolic support, the capacity for continence for parents, and social inclusion, primarily through public policies in health, education, social assistance, and the law. The need for actions that articulate health and education and support the children’s school inclusion is highlighted.

We conclude by pointing out that this paper portrays only part of the research. Among its limits is the lack of a socioeconomic profile of relatives. We understand that it would have been essential to continue the research to portray children and their families’ current situation.

Acknowledgments

We are grateful to family members who were willing to participate in the study and the Research Incentive Program of the Fernandes Figueira National Institute of Women, Children and Adolescent Health - IFF/FIOCRUZ.

References

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