CHALLENGES IN SOCIAL INCLUSIVENESS FOR
SCHOOL AGE CHILDREN WITH CONGENITAL
ZIKA SYNDROME IN BRAZIL

Alessandra Santana Soares Barros

► To cite this version:

Alessandra Santana Soares Barros. CHALLENGES IN SOCIAL INCLUSIVENESS FOR SCHOOL AGE CHILDREN WITH CONGENITAL ZIKA SYNDROME IN BRAZIL. 10th World Disability & Rehabilitation Conference (WDRC 2025), The International Institute of Knowledge Management (TIIKM); The Rock Creek Foundation, Aug 2025, Bangkok, Thailand. hal-05236340

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# CHALLENGES IN SOCIAL INCLUSIVENESS FOR SCHOOL AGE CHILDREN WITH CONGENITAL ZIKA SYNDROME IN BRAZIL

BARROS, Alessandra Santana Soares

Faculdade de Educação – Universidade Federal, Salvador de Bahia - Brazil

[alssb66@gmail.com](mailto:alssb66@gmail.com)

## ABSTRACT

This study took the established description, consensual knowledge, about the array of neuropsychomotor developmental delays observed in children who grew up with Congenital Zika Syndrome - CZS. Most of them exhibit cognitive impairments, muscle tone issues, speech deficits and epilepsy. In addition, structural malformations of the limbs and visual impairments are present, directly affecting the performance of daily activities. Consequently, CZS is characterized as a complex multiple disability associated with severe morbidity, with therapeutic and rehabilitative demands that fall within the scope of long-term or perpetual palliative care. Thus, the purpose of the present work was to present the challenges of social inclusion for these children, highlighting the unique context of Brazil. The choice of focus is scientifically significant, as Brazil continues to report the highest number of documented cases globally, at approximately three thousand. Although mortality rates have risen, a significant number of these children have now reached late childhood - school age years, adding to the complexity of the Brazilian scenario. This study was grounded in a systematic review of the available literature indexed in the Web of Science database, covering publications from 2020 to 2025, through which twenty relevant articles were identified. The VOSviewer tool was used to support the bibliometric analysis. In parallel, ten video documentaries that portrayed the lives of affected children with CZS and their families were critically reviewed through Discourse Analyses. The results were summarized under 3 main scopes: health services were unprepared for the magnitude of impairments posed by CZS; even special schools could not stand for the palliative care needed by those children and the lack of urban accessibility in Brazil is a barrier to social inclusion broadly speaking.

**Keywords:** Congenital Zika Syndrome, multiple disabilities, social inclusion, systematic review, Brazil.
# 1. Introduction – Overview of the Condition

Congenital Zika Syndrome (CZS) involves clinical and radiological abnormalities affecting the central nervous, musculoskeletal, and ophthalmic systems, with lasting consequences for the lives of affected children, their families, and society at large (1). During fetal development, the neurotropic nature of the Zika virus (ZIKV) disrupts brain formation and interferes with synaptogenesis, hindering the migration and proliferation of cells in the central nervous system. These disruptions result in a wide range of neurological impairments that extend beyond the structural malformations evident at birth, such as microcephaly or arthrogryposis.

Cognitive, sensory, visual, and communication impairments are frequently observed, directly impacting individual functioning, family dynamics, and broader social participation (2). Brazil recorded the highest number of Congenital Zika Syndrome cases worldwide — approximately three thousand.<fnref n="2" /> Despite rising mortality rates, many of these children have now reached the later stages of childhood, including school age, which adds further complexity to the Brazilian context. In Brazil, they have come to be popularly known as ‘the Zika children’, a term widely adopted by the media in its coverage of events related to their lives.

Congenital Zika Syndrome involves multiple long-term disabilities that place substantial and enduring demands on the care of affected children. These impairments do not diminish with time; on the contrary, their chronic sequelae tend to intensify as the child grows. Although the underlying brain lesions are neither progressive nor degenerative, the resulting conditions lead to increasing functional limitations (3). For instance, deformities in the limbs and spine progressively consolidate, with joint contractures forming at angles that can make even basic wheelchair positioning difficult. As a result, scoliosis and severe pain from hip dislocations become sources of ongoing suffering for these children.

This combination of postural and systemic anomalies clearly results in major limitations in age-appropriate functioning. These are children whose impairments persist — and in many cases worsen — as they grow. While they continue to develop and grow in size, their progress is marked by profound delays that affect their entire bodies (4). As a result, they face extensive limitations that compromise even the most basic daily routines (eating, hygiene, sleep, leisure), interactions within the family, and participation in community life. In the more complex cases, which are far from rare, many require feeding tubes, either inserted through the nose into the pharynx or surgically adapted to the abdomen, simply to receive food and hydration. This, in turn, demands the use of thickening agents, as dysphagia severely impairs their ability to swallow liquids.

<footnote n="2">2 Between 2015 and 2023, over 22,000 cases of suspected Congenital Zika Syndrome were reported in children, of which 3,742 were officially confirmed. (2)</footnote>
## 2. The 'Zika children' today

By the time they reach ten years of age, the milestone now attained by children affected during the initial 2015–2016 outbreak, most children with Congenital Zika Syndrome are living with severe impairments. According to the GMFCS (Gross Motor Function Classification System), the vast majority, 94%, are classified at a severe level, 2% at a moderate level and only 4% at a mild level (5). Severe functional impairment involves, among other challenges, motor disabilities and significant limitations in communication. Speech, when present, is often marked by profound disruptions in fluency and rhythm, and cognitive functioning is affected even in fundamental domains, such as maintaining consciousness and alertness, including clarity and continuity of the waking state. Physically, these children often present with altered muscle tone, predominantly hypertonia, as well as impaired urinary function, with bladders that either retain excessive urine or fail to retain it altogether, requiring the continuous use of diapers. Additionally, many experience persistent difficulties with weight gain and maintenance.

From a psychomotor perspective, nearly all of these children face profound limitations, marked by an inability to initiate or sustain purposeful movement during activity, or to achieve fundamental developmental milestones such as kneeling, maintaining posture, or standing. As a result, most are unable to walk. Moreover, in the most severe cases, which constitute the majority, even alternative forms of mobility, such as crawling or creeping, are absent. Similarly, many are unable to make basic postural adjustments independently, such as shifting position laterally in bed. Significant limitations are also observed in their responses to simple commands, including tasks like using their hands or extending their arms to engage with the environment. Consequently, even in the pre-pubertal stage, a considerable number of children with Zika- related impairments are restricted to functions associated primarily with head and neck control, such as adjusting their center of gravity or holding their head upright (6).

## 3. What is the care model for ‘Zika children’?

There is an ongoing need for comprehensive support and structured care planning for these children and their families, as the disabilities associated with Congenital Zika Syndrome clearly extend beyond impairments in body structure and function. The severity of the damage — well documented in multiple cohort and longitudinal studies — remains constant over time, regardless of access to rehabilitation services (7). As such, care is primarily palliative in nature. Therapeutic interventions — such as physical therapy, occupational therapy, and speech therapy — are largely focused on pain relief, adjusting anticonvulsant medication dosages, adapting wheelchair backrests and seating, and preventing secondary complications, such as pressure ulcers.
Consultations with health professionals also play a key role in anticipating infection risks and adapting more ergonomic strategies for daily care routines, such as bathing, oral hygiene, and ostomy management. These measures are essential for sustaining life, as the high mortality rate among this population is well documented. <fnref n="3" /> Of the approximately 3,000 children diagnosed with Congenital Zika Syndrome in Brazil in 2018, only about half — around 1,580 — are still alive today, according to the latest Epidemiological Bulletin from the Ministry of Health. It is also important to note that the healthcare available, while often irregular and unevenly distributed across Brazil, must address not only clinical demands, but also the psychological support needs of mothers, who face the compounded burden of daily care. This includes managing additional challenges such as the early onset of puberty, with some girls already reaching menarche.

### 4. Challenges to the social inclusion of “Zika Children”.

Despite the stark realities surrounding the quality of life of children with Congenital Zika Syndrome, the reasons why their social inclusion remains such a profound challenge are not always immediately apparent. This paper seeks to address that gap. It is important to clarify at the outset that the findings presented are not based on empirical field research: no interviews, direct observations, or ethnographic engagement with the families caring for these children were conducted.

Alternatively, the study adopted a meta-analytical approach grounded in documentary research. Drawing on a review of scientific literature published in academic journals across the fields of Pediatrics, Rehabilitation, Public Health, and Tropical Medicine, it compiled findings from previous studies that described and updated the systemic clinical complications associated with children affected by Zika Syndrome. To further illustrate and contextualize these findings, the study also included a critical analysis of newspaper articles, television reports, and social media posts in which mothers shared firsthand accounts of the unique challenges involved in caring for their now ten-year-old children.

It is also important to note that the argument developed in this critical essay is grounded in the most prevalent clinical profile of children with Zika Syndrome—those presenting with severe motor and cognitive impairments.

<footnote n="3">3 A cohort study (8) found that among 3,080 children reported as Congenital Zika Syndrome (CZS) cases, 444 (14.4%) died. Of these, 154 deaths (34.7%) were attributed to respiratory diseases, 152 (34.2%) to infectious and parasitic diseases, and 82 (18.5%) to diseases of the nervous system. Children with CZS were 13.10 times more likely to die within the first five years of life compared to children without the syndrome. Cause-specific mortality hazard ratios were 30.28 for respiratory diseases, 28.26 for infectious and parasitic diseases, and 57.11 for nervous system diseases. Another study (9), based on data from a national Brazilian registry, showed that mortality rates among children with CZS up to three years of age were more than 11 times higher than those observed in children without the syndrome.</footnote>
While it is true that some children with CZS are able to walk and speak, such cases are rare exceptions. As they do not reflect the most common or severe manifestations of the syndrome, children with milder presentations were not included in the sociological analysis that follows.

Finally, it is important to emphasize that the barriers to social inclusion for these children are multifactorial and mutually reinforcing. Although they are presented here in a structured manner, in the lived experience of families these factors are deeply intertwined, making it difficult to isolate or clearly distinguish them within the complexity of the broader social phenomenon.

## 4.1 Brazilian society was unprepared for the magnitude of challenges posed by CZS

In Brazil, the severity of the sequelae was not fully understood — by public officials, opinion leaders, the general population, or even by the mothers of children with Congenital Zika Syndrome (10). The idea that something profoundly serious could be affecting their children's development was, for many, counterintuitive, particularly for first-time mothers, who had little prior experience observing newborns and infants up close. To the untrained eyes of these women — and those around them — nothing seemed especially alarming or extraordinary. After all, even healthy babies are largely inactive in the early months; little is expected of them in terms of developmental performance. They mostly eat and sleep, and their responses are largely governed by primitive reflexes. They suck, for example, as an automatic reaction. It was therefore difficult for these mothers to imagine that such basic behaviors might later disappear — or to anticipate that the same babies who once fed from a bottle would soon require a feeding tube inserted into their abdomen.

Public understanding in Brazil was also limited. Based on existing scientific knowledge from other vertically transmitted STORCH infections, it was already understood that the neurological damage caused by Zika would likely result in severe psychomotor, physical, sensory, and cognitive impairments (11). Nevertheless, the Brazilian media, despite employing the emotive and sensational tone often found in health-related reporting, propagated a parallel narrative (12). While this discourse may not have been intended to downplay the medium- and long-term implications for the lives of children affected by Zika, it certainly contributed to public confusion. In many cases, newspaper and television coverage gave the impression, for instance, that microcephaly — central to the initial diagnosis — merely involved a smaller-than-average head, similar to that seen in other syndromic conditions where children are still able to walk and speak. The ambiguity and suspense woven into the subtexts of Brazilian media coverage ultimately served to fuel continued public interest, allowing the story to be repeatedly repackaged and resold.
The circular nature of media coverage meant that mothers were repeatedly interviewed, which inadvertently reinforced a limited understanding of the condition. Most of these women, coming from socioeconomically disadvantaged backgrounds, often unemployed, working as homemakers, and with limited formal education, had few tools to interpret medical terminology or to seek out additional sources of information. Moreover, part of the difficulty they faced in aligning their expectations with the clinical reality of their children's condition stems from the way in which health information about loved ones is processed: it is invariably a process that engages both thought and emotion. As such, it is vulnerable to denial, frustration, and irrational hope. In this context, distancing themselves from the harshness of medical prognoses offered many Brazilian mothers of children with Zika a more bearable psychological setting that allowed them to keep hoping for better days (13).

Whatever the underlying reasons, the fact remains that this underestimation of the severity and permanence of Congenital Zika Syndrome's consequences left Brazil unprepared for the long-term demands in health and care. Resources that could have been allocated earlier to the development of palliative care networks were delayed, simply because the needs of these children and their families were not anticipated.

Above all, the collective image that Brazilian society built around the Zika children failed to account for the extreme fragility and constant dependence on care that, as we now clearly see, define their daily lives. Social inclusion requires not only policy, but a deep understanding of those it seeks to serve and a shift in public perception. Yet Brazil, despite having lived through the Zika epidemic, was slow to fully and objectively acknowledge the realities faced by children with the syndrome.

## 4.2 The failure of school as a pathway to inclusion for 'children with Zika'

In their early years, children with Zika were primarily engaged in early stimulation programs and rehabilitative therapies that collectively constituted what was referred to as their “treatment.” Until around the age of three or four, their weekly schedules were largely filled with speech therapy, occupational therapy, hydrotherapy, respiratory physiotherapy, and regular follow-up appointments with neuropediatricians tracking the course of the syndrome. For mothers, there was a sustained hope for meaningful progress, particularly the eventual achievement of key developmental milestones such as walking and talking, even if on a delayed timeline (14).

The emphasis on neuroplasticity and critical developmental windows, the guiding principles of pediatric rehabilitation, instilled in these mothers a sense of urgency. Many, living in rural areas of Brazil's northeastern states, traveled for hours to reach urban clinics, only to receive care that lasted a fraction of the time spent on the journey. The effort was immense, but gains were limited.
The improvements, however, often fell short of expectations. In some cases, the acute nature of certain conditions — such as persistent crying and seizures — was brought under control over time, largely through medication.

As the children grew older, families began turning to nursery schools as alternative spaces for stimulation, not only sensory and cognitive, but above all, social (15). Given their wider availability and proximity compared to rehabilitation clinics, these institutions seemed like a natural next step. Brazil's educational legislation, with its emphasis on inclusive schooling for children with disabilities in mainstream, rather than 'specialized', settings, also supported this shift. Children with other conditions, such as Down syndrome, for instance, are generally enrolled in and reasonably well integrated into early childhood education programs across the country.

It was not long before a crisis in care emerged within the small classrooms of public nurseries and preschools in Brazilian cities, where some children with Zika Syndrome had been enrolled. By the age of three or four, a significant number of these children were still not walking and showed no indication that they would. Many struggled to maintain a seated posture, remained in diapers, and had begun feeding through tubes inserted either nasally or directly into their abdomens. As a result, they required a level of care approaching that of nursing, support that even the specialized aides, occasionally hired to assist classroom teachers, were not equipped to provide (16).

Moreover, the number of available spots in public nurseries across Brazilian cities has long been insufficient. In many municipalities, particularly in Northeast Brazil, demand consistently outstrips supply. Classrooms, playgrounds, dining areas, and rest spaces are often overcrowded, and the overall infrastructure remains precarious. As a result, the already limited quality of services in Brazil's public early childhood education system ultimately undermined the promise of successful educational inclusion for children with Zika (17).

The mothers of children with Zika quickly realized that their presence would be essential to ensuring the specialized care their children required and, by extension, to making their inclusion in the nursery setting viable. However, for these women, most of whom were low-income, caring for other children, and solely responsible for managing the household, such a commitment placed a strain on the family's overall stability (18).

Over time, the attendance of children with Zika at nurseries and preschools became increasingly irregular. It was common for them to fall ill, often with respiratory or urinary infections, or to require hospital stays for hip surgeries or lengthy, delicate medical examinations (19). The onset of the COVID-19 pandemic and the nationwide social isolation measures implemented by the Brazilian government in March 2020 led to the closure of both
schools and nurseries, as well as rehabilitation clinics. Children with Zika, who had already faced limited access to care, developmental stimulation, and inclusive environments, suddenly found themselves with even fewer resources. Remote care and virtual consultations were introduced in an effort to bridge the gap but met with little success (20).

### 4.3 The lack of urban accessibility in Brazil as a barrier to Social Inclusion

Once COVID-19 restrictions were lifted, mothers were able to return to rehabilitation clinics by mid-2022, though not with the same frequency as before. School attendance became even less common. By then, their children were larger and heavier, yet also more physically fragile, weakened by the ongoing progression of the syndrome's sequelae. Transporting them had become an increasingly difficult task (21). For many mothers, simply carrying their children from place to place became a test of physical endurance and coordination—a burden they often had to bear alone, as many partners had left the household upon confronting the reality of their child's profound dependency.

Most children with the syndrome use wheelchairs, but this offers little relief for their mothers. In Brazilian cities, particularly in the northeastern region most affected by Zika, streets are poorly paved, and sidewalks, when they exist, are narrow, uneven, and often obstructed by parked cars, making passage hard for pedestrians and very difficult for wheelchair users. Public buses are rarely equipped with functioning wheelchair ramps, forcing mothers to rely on the goodwill of fellow passengers or the occasional supportive driver to help lift their children onboard. Faced with these obstacles, many mothers choose not to bring the wheelchair at all when leaving the house with their child (22) (23).

Mobility challenges are even more acute for families living in rural areas. Some must carry their children on their shoulders across unpaved roads just to reach the spot where municipally funded vehicles pick them up for transport to the nearest town. The sheer physical and mental effort required, often under the intense northeastern sun or in the early hours of the morning, gradually compelled many families to keep their children with Zika Syndrome at home for longer periods (24).

Over time, and sometimes in the absence of adequate financial resources, these homes were adapted to accommodate the specialized care the children required. By the time they reached the end of elementary school age, around ten years old, a significant number needed continuous care, including suctioning of airway secretions and careful seated positioning to manage dislocated hips or pressure sores (25). Hospital beds, oxygen tanks, artificial respirators, and monitors for vital signs were installed in their rooms. Removing them from the safety and comfort of this environment increasingly came to represent a risk that was not justified by the promise of social inclusion.
**5. Final Considerations**

When they were around ten years old, some children with Zika Syndrome – until then seen mostly within the confines of their neighborhoods – made the journey to Brazil’s capital. They had come from distant regions and had been in Brasília for several weeks. Alongside their mothers, they attended legislative hearings and parliamentary debates that would determine the final approval of a bill granting a lifelong monthly pension of approximately 8,000 reais to be paid by the Brazilian government, along with a one-time compensation of 50,000 reais, for all families affected by Zika. The lives of those unable to attend in person were brought into the room through slide presentations and home videos that offered an unflinching portrayal of the daily care routines, presented in their full complexity.

Appearing before the broader public and exposing the full extent of the children's disabilities and the emotional and physical toll on their families became a strategic means of mobilizing political support to overturn a presidential veto that had blocked the bill. Connected to respirators and feeding tubes, the children laid bare the reality of their daily existence to politicians, public officials, and civil servants. Their mothers, who had once adopted hopeful slogans such as "Microcephaly is not the end" as part of their collective activism, shifted to a far more direct and urgent message. Printed on the T-shirts worn by some of the women there was a hard statement and a bleak question: "The Zika virus destroyed my child's life — who will pay the price?" The impact of this initiative extended far beyond the halls they entered. Made visible on a national scale, positioned beside their mothers during interviews broadcast by official government television channels, these children were suddenly brought into the public eye. For a moment, the country saw them, thought about them, and by extension, remembered all the other children affected by Zika. In that moment, they seemed, perhaps for the first time, socially included (26).

**6. Conclusion**

Public squares, parks, and shopping centers are urban spaces where social inclusion can take meaningful shape. They are places where children, even without physical contact or verbal interaction, can engage with one another through shared presence. These are environments where children are seen, noticed and discussed. Museums, beaches, and circuses are likewise spaces of leisure and coexistence where citizenship is enacted. Such spaces are meant to be open to all, both disabled and non-disabled individuals. Poverty, income concentration, and deep economic inequality shape life across much of the Global South and are not only the root causes of exclusion but also the forces that sustain such disadvantages over time (27) (28). In Brazil, unregulated urban expansion has resulted homes without sewage systems or access to clean drinking water, which facilitated the spread of the mosquito and, consequently, the Zika virus. That same lack of planning - evident in the absence of curb cuts, reliable public transportation, and accessible urban infrastructure, has since denied these families the conditions needed to ensure social inclusion for their children with disabilities.
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