"I still think it's advisable to get away from the mosquito"

In 2016, after the outbreak of zika throughout Brazil, 325 babies were born with congenital zika virus syndrome in Bahia, according to data from the Bahia Secretariat of Health (Sesab). At the time, besides the fact that children are born with little head, little was known about the epidemic and its consequences. Three years after the beginning of the epidemic, questions remain unanswered. One of them requires an urgent solution: how to welcome and include in society children who will soon have school age? Psychiatrist Darci Neves, a researcher in the field of epidemiological studies on children's development and mental health, is working on this issue. "When this epidemic appeared, I felt called to the amount of babies born with a congenital neurological change.My work is to develop and ensure the social inclusion of these subjects." Since last December she has been coordinating the project "Effects of congenital neurological manifestations associated with zika virus on child development in the context of primary care", with 30 other researchers from the Institute of Public Health of the Federal University of Bahia (ISC-UFBa). The research, which runs until 2020, examines the development of 166 babies with neurological abnormalities, comparing these findings with those of 100 healthy newborns and boys. The schoolboy says there is still much to learn from these children who will soon be leaving the house for the streets, schools and the outside world. But one certainty already exists: "The contact with the family, the link created, makes all the difference in this growth".

At the beginning of the epidemic, while little was known about microcephaly caused by the zika virus, doctors said they did not know what to say to the mothers of babies with the disease. What are you saying today?

At this point, the situation has surprised everyone. Especially because the disease was unknown. This was not an epidemic of an already known disease. Then there was a panic. What is it, what did it generate? And the number of children born with a change was very high. And it is obvious that it has taken the whole society because it is a situation that affects you emotionally. Each individual is sensitized to a tragedy that affects several families. Beside that, there was the fact that we did not know what it was. Some people said that it was caused by pesticides, an infection … We still have little time to know more about this phenomenon. That's why many families did not receive an answer because they did not know her. On the other hand, there was a lot of effort to try to determine if the disease was infectious, how to control the mosquito … It also had many unknown symptoms. In my opinion, at first glance, all that mattered was knowing exactly what it was and how to avoid it. But the most important consequence was that the child was born as he was born. It was neurological damage. And my contribution starts from there.

What answers do we have for these families?

Zika makes us think about all children with disabilities. Before zika, those who worked for child health from 0 to 6 years old were preoccupied. Because it has already been discovered in many ways – neuroscience, pediatrics – that the first six years of life are fundamental to the foundation and construction of the subject from a somatic and psychic point of view. Neuroplasticity, which is a wonderful quality for the brain, demonstrates that the brain has the ability to regenerate and respond to external stimuli. And if these stimuli do not come at the right time, the power of development does not materialize. There is a complete development, as we call it, if everything is neat. The child can somatically grow, gain height, weight, but there is a psychological dimension that also grows and that depends on the quality of the link that this baby has with the family context. This principle that neuroscience discovered and posed for us was more commonly used in the typical child. It was suddenly seen that this principle of neuroplasticity was also valid for the child born of an alteration of the brain. In this sense, the most sensitive period is 0 to 3 years. If the child receives stimulation from the first moment, whether it is already in the intensive care unit or elsewhere, it will develop at another speed, regardless of the neurological impairment. that he undergoes. If you stimulate from the beginning, reduce the damage. So, that's the answer, that's what families need to work on.

What have you observed in the development of these children up to now?

What is shown is that microcephaly is not everything. Some children had microcephaly, it was the lure. Many others did not do it and noticed that there were changes of another order, less noticeable. We do not yet know which ones. It can be in language, cognition, learning. These changes have not been seen. We must keep our watch. These children will present themselves either in health centers or in schools. In the unknown, there is this: it is different from other infections that cause neurological changes. My first concern is: what will the development of these children look like? That's when I'm dealing with mothers. You who are the mother of this child, what can we do now? It's an individual conversation, but I'm trying to create a type of care in a public place, for free, because I'm a champion of the Unified Health System (UAS). The goal is to reach a place that, until then, did not deal with these childhood problems. Microcephaly is now a word that everyone knows what it is, but there were already a lot of congenital neurological changes before the zika. This epidemic brought the subject and shook society, shaken the health services. It challenges us because we were not ready. It was not a subject to which public health was attentive.

And how do the research you coordinate manage with these children?

The research is funded by the CNPq (National Council for Scientific and Technological Development), Capes (Coordination for the Improvement of Higher Education Personnel) and the Ministry of Health. She was created to work with these children. My big question is: what is the level of development of children? And this will translate into three aspects. I measure the motor, the language and the cognition. These three things will show how neuropsychic development takes place. Our job is to go where the child is. We interviewed their mother at her home. We are interested in the mother's level of mental health because her changes are also common. We also assessed the quality of the household stimulus in the home. Whether you have microcephaly or not, the degree of development of your child will depend on the quality of the stimulus that takes place there. We did this because I need to know what it means for that child to have a low or high level of domestic stimulation, and how that affects development. We are currently making a second visit to every home we have ever visited to measure the child. See how is this development. And let's go back a third time to answer that. And these answers will be compared to those of 100 children who did not have a problem, did not go through zika, to see what is the difference between these two groups.

Already have results?

As the research continues until 2020, it's been 42 months, we still do not have the results. But this stimulus, or its absence, will affect the development of the child. There are houses that have different degrees of stimulation. And it's not just about rich or poor people. You can even have material goods, but you do not have the relationship, there is no one there. The link is important. You may be a person who does not have so many assets, but she invents. Invent a doll, play, react, watch. But this measure is not simply a game, it examines, for example, the nature of space, its variation. There is the child who spends the day in the cradle, but there is one who wakes up, sits on the chair, drinks coffee, somebody drives to the park, then comes back, drinks fruit juice, goes to the yard. It is the variation of the environment, it is important. Having concrete objects, which allow the child to play and have fun, also makes the difference. And the other block is the relationship with who cares. If you have it all, from the physical and environmental point of view, but the relationship with the one who cares about it is not quality, no compromise. So when we say "quality of the national stimulus", that's all. Sometimes the caregiver may not be the mother, but the nanny. But whoever stays there must make connections.

The research group is also developing community actions …

We already have three support groups operating in the districts of Cabula, Brotas and Itapuã. Until next February, we will open one in Boca do Rio, a type of service close to where the person lives. We understand that the disabled child has times when it may be necessary to go to Sarah Hospital, for example, which is the best in terms of rehabilitation. But she lives in Cajazeiras. She has neighbors. It is there that will take place its social integration, in the nearby school. We want to do something for this child to gain the minimum of autonomy, so that it is mobile. Everyone now agrees that it is possible to reduce the damage, it is not necessary to stay there, that the child is sitting, who does not leave his / her armchair, this is not ok. So, downstairs must have a service. In those places where I talked, we created a stimulation group, with a speech therapist, a physiotherapist … What we are doing out there is not what Sarah does, it 's not like that. is a simpler thing, but not a quack. From time to time, the caregiver and the child – not just the child, but the couple can get into the couple so that the caregiver knows what to do at home – enter the unit for some activities of a duration of three hours. In addition, every 15 days there are psychological support groups for family members. That's part of the research, but we intend to create a model of care. These children are distributed in the districts of the municipality. The only one that has only one is the historic center. Plus, it's the rail suburb.

In 2016, it was said that the microcephaly outbreak was strong because the zika virus was new and that the population was not immune. The reason for the decrease in the number of babies born with microcephaly due to zika has decreased because of this vaccination? [Em 2016, 325 casos foram confirmados e, em 2018, seis].

No doubt we came out of the epidemic, the outbreak was controlled. There are minimum cases that occurred after 2015.

At the time of the epidemic, in 2016, pregnant women were concerned about the constant use of repellents, closing the windows of the house. Has this risk already passed? Or do you still have to keep all this care?

The mosquito is no longer as active as the epidemic has subsided. These measures were necessary because the problem is that you are stung. Once stung, the effects of the infection were not always so visible, some mothers did not even realize it. So I think it's advisable to get away from the mosquito. Depending on the agent responsible for the microcephaly (syphilis, chicken pox or rubella, for example), the baby's brain undergoes various changes.

When the cause is the Zika virus, what changes? Is it possible to identify the cause after birth?

To date, we still do not know if there is a trend for neurologic change in children with Zika virus. All we know is something from one year to the next. The long-term study of development is what we are going to do, the Brazilians. In my study, for example, I do not know if all mothers had zika. In my study, I took all the children who had been warned during the outbreak because they were born altered and who had been confirmed during exams as suffering from a neurological disorder. From a scientific point of view, the children that I am are victims of the epidemic since they were born from August 2015 to August 2016. So we know what are the changes that these children currently have, but not what they will do there in the future. before. Of the 186 children we followed, born at the height of the epidemic, 40% had congenital neurologic changes but no microcephaly. They are born with a normal head size. That's why microcephaly is not everything.

So, is it considered that all children born with the syndrome in the period of the epidemic had neurological impairment caused by zika?

Look, it is a problem that our recordings for congenital neurological changes were not very reliable. When that number of babies appeared, which made it possible to calculate what that really meant, there was a question. And how was it before? But we had no way of answering. Now, yes, I started wanting to record these neurological changes at birth, these cephalic perimeters. And there are researchers in Maranhão who think that microcephaly was not so unusual before, as we think. This epidemic has highlighted several important issues for Brazilian public health.

How do you evaluate how Brazil has gone through this epidemic and how it is now serving children with microcephaly?

I think overload refers to the SUS issue. This is not a system that runs at the speed that should work. Then there was the overload and there was no preparation for it. What happened is that the cause was very disturbing for people. If that had been a problem, it would have had another impact. Here in Salvador, the service is already reasonable, but inside, no. And this is not a case that disappears, the child is there. Now, the next challenge is the school, it is social inclusion. This requires more teacher preparation and resources. If you have a child with a probe, a wheelchair, you need a preparation, a team.

Is Brazil ready to accept them?

There are still difficulties. There are complaints that schools themselves make. The school network does not work legally before for typical children, so teachers also have their problems. Now these questions will double. We have to force it because it will require investment. We are thinking about how to equate children and families with work that impacts on social inclusion. Take care of your health, go to school and be seen in the neighborhood. There were families who did not leave the house because the neighbors continued to watch and comment. Mothers could not stand the curious gaze of their neighbors. Social inclusion must be done in each neighborhood.

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