Children with Zika Syndrome have a 22-fold increased risk of death, study finds

Children born with congenital Zika syndrome (CZS), as the set of sequelae caused by infection during pregnancy is called, including microcephaly, are 22 times more likely to die between one and three years of life than children without it. problem.

The conclusion is from an unprecedented study published this Wednesday (23) in The New England Journal of Medicine, with data from the Long-Term Surveillance Platform for Zika and its Consequences, coordinated by Cidacs (Center for Data and Knowledge Integration for Health) from Fiocruz in Bahia.

The study analyzed data from 11.48 million live births in Brazil from 2015 to 2018, a period that concentrated the largest number of cases of Zika virus infections, especially in 2015 and 2016. Of this total, 3,308 children were identified with the congenital syndrome, of which 398 died.

The results show that the risk of death increases with age. Up to 28 days after birth, for example, the possibility of the child dying is seven times greater than that of babies without the syndrome. Between one and three years of age, the risk is 22 times greater.

This is the first study to investigate mortality from SCZ at 36 months of life. The syndrome involves several dysfunctions resulting from the effect of the Zika virus on the babies’ central nervous system. Children can have structural abnormalities such as microcephaly, functional abnormalities such as difficulty swallowing, and clinical abnormalities such as epilepsy.

According to Enny Paixão, lead author of the study and researcher at Cidacs/Fiocruz, the high mortality rate of these children can be attributed both to the serious anomalies caused by the zika virus in intrauterine life and to problems with care.

“It is necessary to have very well-established clinical follow-up protocols to improve the quality of life and survival of these children”, says she, who is also an assistant professor at the London School of Hygiene and Tropical Medicine.

The study showed that among the causes of death are problems that can be managed with adequate monitoring, such as infectious diseases and protein-calorie malnutrition due to difficulty in swallowing. That is, these children are unable to ingest the necessary amount of food.

Many also have difficult-to-control epilepsy. One suggestion, according to Paixão, would be to reduce the time interval between one appointment and another to observe the response to medications and change them if necessary. But, according to the entities that provide assistance to families of children with the syndrome, it is very difficult to access specialists.

Adriana Melo, a doctor from Paraíba, who was the first to associate the Zika virus with cases of microcephaly in 2015, explains that children with SCZ can also die from pneumonia resulting from bronchoaspiration (when food goes down the respiratory tract).

She says many of the risks can be reduced with appropriate therapies, offered in services with multidisciplinary groups, and support networks for the families of these children.

Since the beginning of the pandemic, Melo has directed two projects in Campina Grande (PB) that have accompanied around one hundred families of children with the syndrome, Ipesq, a research institute, and the NGO Amor sem Dimensions.

“We have a WhatsApp group, and these mothers are very well oriented. They know, for example, how to assess the saturation and risk symptoms of these children. When one is at risk, there is an immediate mobilization”, he says.

Social networks have also been used as a way to pressure the public authorities for adequate assistance. Melo says that, recently, two of the children he accompanies had a respiratory infection and needed admission to the ICU.

“One of these children spent the whole day saturating less than 50% and there was no vacancy. We only managed at night. But then there was no ambulance from Samu to transport her to the hospital. After a lot of struggle, we managed. support network, many would have already died.”

According to Germana Soares, director of the NGO União de Mães de Anjo, which monitors around 400 families of children with congenital Zika syndrome, even in cases where the sequelae are very serious, there is always something to be done to promote quality of life. of children.

“We see some kids at the same level [de gravidade da síndrome]from families with higher purchasing power, undergoing therapies and being monitored in private services and realizes that they can evolve more, within their limitations, of course”, says she, mother of Guilherme, 6, who was born with the syndrome.

Soares says that care for these children has gotten a lot worse when Zika is no longer a health emergency. “Funds stopped coming, medicines, promises to build rehabilitation centers were not fulfilled. Donations decreased a lot. We fell into invisibility.”

She says that the children are growing up, now at the age of five, six, seven years old, and now they have other needs. “Mothers can no longer carry them on their laps. At the same time, they can’t get wheelchairs and orthotics. There are places where the rehabilitation queue takes three years. It’s still very difficult.”

During the pandemic, the situation of children with the syndrome worsened even more. Many rehabilitation sites were closed, which caused some to suffer limb atrophy. “As many do not walk, the only physical activity they have is in therapy”, says Soares.

According to Melo, from Campina Grande, at the height of the pandemic, when social distancing was necessary, the group gave virtual guidance to mothers. The physical therapists provided guidance on posture, the speech therapist taught the correct way to reduce the risk of bronchoaspiration. “But of course some kids have had regressions.”

For her, even though the children carry serious sequelae, the worst of them is still the social one. “When you don’t have a place in the ICU, you can’t have surgery, put a probe [para alimentação], is desperate. Therefore, the support group is essential. When a child dies, it’s a collective mourning.”

The doctor explains that there is a contradiction in most Brazilian rehabilitation services. “They discharge these children because they won’t walk. It’s as if they could only have therapies if these children could walk. But without therapy, they worsen scoliosis, atrophy, lose respiratory function.”

Although the majority of SCZ cases occurred in 2015 and 2016, the height of the Zika epidemic, new reports have not stopped. In 2020 alone, 1,007 new cases of the syndrome were reported by the Ministry of Health, of which 35 (3.5%) were confirmed and 597 (59.3%) remained under investigation, according to the latest official bulletin.

For Enny Paixão, public managers need to invest in primary prevention, that is, elimination of mosquito outbreaks Aedes aegyptywhich transmits zika, the distribution of repellents to avoid being bitten, and finally, remind pregnant women that the infection can be transmitted sexually and, therefore, the use of condoms is also very important during pregnancy.

“Once the child has the syndrome, it is clear that it is possible to develop protocols to minimize deaths, but even so, many things will not be avoided because they are serious manifestations. Therefore, preventing infection is essential.”

The proliferation of Aedes aegypti, which also transmits dengue, chikungunya and yellow fever, is favored in places with poor sanitation. According to the Saneamento Brasil Panel, a platform of the Trata Brasil Institute that presents the country’s main socioeconomic and environmental indicators, almost 35 million Brazilians live without access to water service, while 47.6% of the population does not have access to sewage collection, which represents almost 100 million people.