Ana Carolina FernandesMoreira in front of the sculpture Mater at the Fernandes Figueira InstituteAna Carolina Fernandes
The first cases emerged in October 2015, initially in maternity wards in the Northeast of Brazil. Babies were being born with heads that were too small for their gestational age—a condition known as microcephaly. Many also presented with cranial depressions, despite a normal facial appearance. The malformation was later proven to result from damage caused by the Zika virus, which destroys areas of the brain during fetal development. The mothers of these children had been infected during pregnancy. The total number of cases recorded in the epidemic, which peaked in Brazil in 2015 and 2016, far exceeded that caused by any other infection. “It was an avalanche,” recalls pediatrician Maria Elisabeth Moreira of the Fernandes Figueira Institute, a leading maternity hospital at the Oswaldo Cruz Foundation (FIOCRUZ) in Rio de Janeiro.
A specialist in neonatology (the field that treats newborns with complex medical conditions), Moreira has been following babies exposed to Zika in the womb since the issue first arose. To this day, 180 of them continue to receive treatment at her clinic. She is also taking part in research monitoring their development over time. In July, she and her colleagues published a review article in The Lancet summarizing what has been learned over the last decade about the new disease—which in its most severe form is known as Congenital Zika Syndrome (CZS)—and what remains to be done: improving diagnosis and developing a vaccine.
Moreira spoke to Pesquisa FAPESP via video call in August. She discussed the challenges faced by these children now entering adolescence and their families, expressing outrage at the neglect with which they are treated—sometimes by the very doctors who are supposed to be caring for them.
Ten years ago, the country experienced a Zika epidemic that primarily affected the children of women infected during pregnancy. How are these children doing now?
Children exposed in utero, especially during the first trimester of pregnancy, developed the most severe neurological conditions. They were born with microcephaly and brain calcifications. Many developed cerebral palsy, as well as hearing and vision impairments. Those infected at a later stage experience milder issues.
At what rate do these problems occur?
Four percent of infected mothers went on to have children with microcephaly. In this group of children, the frequency of problems is high. Many suffer from seizures that are difficult to control, requiring specific medications that are not always available in the public health system. There were major medicine shortages during the COVID-19 pandemic and even today there are occasional insufficiencies. These children often experience muscle contractures in their hands and arms, as well as hip dysplasia. All this causes a lot of pain. Imagine what it must be like, not even being able to pick up a toy to play with. Dysphagia, or difficulty swallowing, is also common, and some are malnourished despite having undergone a gastrostomy, when a feeding tube is inserted through an opening in the abdominal wall. Families face difficulties accessing therapeutic support to stimulate their children, who are now at school age but struggle to attend. The whole situation is very hard on the children and their families.
How do they make use of the public health system?
Access to orthopedic surgeries—to correct hip dysplasia, for example—is not easy. Together with the Ministry of Health, we pushed to prioritize care for these children, but we did not have much success. Many are on waiting lists for surgery.
What are the most common cognitive development problems?
Many show delays in speech development and language acquisition. A large number, especially those exposed to the virus late in pregnancy, were not born with microcephaly and were never diagnosed with Zika exposure because most mothers had asymptomatic infections. But even these children exhibit delays in motor and cognitive development, leading to difficulties at school. There are even some cases of autism and behavioral disorders.
Are those with microcephaly more severely affected?
There are varying degrees of microcephaly. The less affected children with milder cases are more responsive to stimulation and various interventions designed to improve their development.
What are those children with milder cases capable of?
Walking, running, learning. I have worked with 8-year-old children with mild microcephaly who can read and write. Their families have been relentless in seeking stimulation for them. Most were well stimulated from the very start, when they received the diagnosis. They still present some developmental delays—they were born with microcephaly, after all—but they do not suffer from motor function problems. They suffer more from cognitive and language difficulties.
Children with milder cases respond better to interventions designed to improve development
And what about the more serious cases?
These are the children that were born with very small heads. They suffered significant brain damage during development in the womb and now experience severe spasticity [muscle stiffness] and cerebral palsy [difficulty controlling movements due to brain lesions]. They are capable of communicating to some degree, but it is much harder for families to elicit conclusive answers from them. The mothers of these children endure real suffering.
How many cases have been confirmed?
There are currently approximately 1,800 confirmed cases of Zika-related microcephaly registered with Brazil’s health ministry, with another 3,200 under investigation. Identifying a Zika infection long after it has occurred is still very difficult. The biggest problem is the lack of a reliable serological diagnostic method in the public health system. Most of the mothers had asymptomatic Zika, and the serological test, especially for those infected early in pregnancy, returned negative results by the time the baby was born. It was therefore not possible to know if the child had been exposed to the virus. The most accurate diagnostic method is the polymerase chain reaction (PCR) test, but its detection window is very short. It identifies the virus’s genetic material up to about 15 days after infection. Serological tests, which detect immunoglobulin G and immunoglobulin M antibodies in the blood should, in principle, provide some information about past infection. But they are susceptible to cross-reactivity with dengue and Chikungunya, which both cause symptoms similar to Zika. No serological test can determine if a child was exposed to Zika in the womb, even if they were born with microcephaly. There is only one test capable of indicating past infection in children: the PRNT [plaque reduction neutralization test, which measures the presence of specific antibodies against the virus], which is only available at research centers and is very expensive. As a result, even today there remains an unknown number of children who may have been exposed to the virus in the womb and affected to varying degrees.
How did your involvement with these children begin?
The Evandro Chagas Institute of Infectious Diseases in Rio de Janeiro, part of FIOCRUZ, has an outpatient clinic for acute febrile illnesses. Around 2015, it began receiving pregnant women with fevers of an unknown origin, not caused by dengue or Chikungunya. Around the same time, a group led by Gubio Soares Santos, a virologist from the Federal University of Bahia, identified cases of Zika in Salvador. Based on these findings, the team at the outpatient clinic investigated and confirmed Zika infection in these pregnant women. The women were referred to the Fernandes Figueira Institute, a FIOCRUZ maternity unit, so that they could receive the appropriate prenatal care. That is how I got involved.
When did these mothers arrive?
At the beginning of 2016. They underwent regular ultrasounds to monitor fetal development until birth. We still follow the children to this day. Of the 90 born with microcephaly who were treated by us, at least 19 have since died. We also monitor children exposed to the virus in utero who did not develop microcephaly, because they too can show developmental delays.
How many are you still following?
We started with the children of 246 pregnant women. Later, other mothers with children who had microcephaly—not all caused by Zika—joined the first group. The institute is one of Brazil’s leading centers for genetics and they were seeking a genetic diagnosis for their children’s conditions. We lost contact with some of these women and children, especially those whose health improved. Today, we have 180 under observation.
What is the situation for the families?
Microcephaly has really disrupted family life. Most of the mothers became single parents. Very few fathers were willing to take on the responsibility of the intense and constant care these children require—that has been left to the women. Imagine what it must be like to live with a child who has seizures, cries out in pain, and frequently needs to visit hospitals and health services for stimulative therapy. The mothers are trapped in this routine. Many had to quit their jobs and give up on their dreams. Politicians have regularly called them “warriors.” One of them recently said to me, “Doctor, I don’t want to be a warrior anymore. I am tired.”
Why are so many mothers left alone to care for their children?
It happens a lot, and not just with Zika, but with other illnesses that affect children. When things get complicated and life at home becomes too demanding, many men simply leave.
And how do these families cope with the medical costs?
In July, Brazil finally passed Law No. 15,156, which states that every family of a child with microcephaly caused by Congenital Zika Syndrome is entitled to R$50,000 in compensation, in addition to the maximum financial support available via the country’s General Social Security Program [currently R$8,157.41 per month]. But so far, no payment schedule has been established. The money is desperately needed. Many of the children are malnourished and need a high-protein diet, including special, expensive types of milk that are not always available at health centers. They also need custom-made wheelchairs, which have to be replaced as the children grow. Many of them have eye problems and need to regularly update their eyeglass prescription. On top of all that, they frequently have to undergo surgery, from minor operations to correct hand and arm deformities caused by contractures, to major procedures, such as hip surgery. Their families are constantly seeking healthcare options and sometimes have no choice but to turn to private health services. I see my patients every Thursday and it is hard to listen to the stories the mothers tell. I do not know how they are managing while they wait for that monthly social security money.
For now, who is supporting them?
Many rely on their parents to help them with general care. From an economic perspective, the number of healthy years of life lost by these children is very high, as we showed in a study we did a few years ago. The mothers drift through the health services, facing countless hurdles. Taking the bus with a newborn is one thing; transporting an older child with cerebral palsy in a wheelchair is quite another. We have referred families to primary care units nearer their homes for minor issues like fevers, but those clinics often do not feel capable of treating these children and send them back to the hospitals that referred them.
These children are now 9 or 10 years old. How are they doing in terms of school access?
Inclusion, especially for the more severe cases, is extremely difficult. Some mothers have managed to find tutors who come to their houses; others have taken on this role themselves. Even children without microcephaly but with developmental delays have learning difficulties, and most schools do not know how to accommodate them.
In July, a law was enacted that requires the payment of compensation and a lifetime social security benefit. The money is desperately needed
A study by your group estimated that healthcare costs for these children have reached US$600 million over the last 10 years.
Their care places a high financial burden on society in terms of medical consultations and treatments—not to mention the emotional and economic burden on the families, especially the mothers, who have to give up careers and their dreams. The families also have to spend their own money to cover treatment expenses. That is why they are so anxiously awaiting the social security payments. They need it to properly care for their children.
After 2016, the epidemic subsided, and we no longer hear about the Zika virus. Are there still cases?
They still occur, but the number is nowhere near as high as it was during the epidemic. At the hospital where I work, we now see one or two cases a year.
During the epidemic, most cases occurred in the Northeast of Brazil. Has the reason been discovered?
Many hypotheses were investigated, but nothing was proven. I think the problem was the general living conditions in those regions. People in poorer areas with less access to sanitation were the most affected.
Of the cases you have followed, have there been any that particularly impacted you?
I remember one very well from the very early days. A child was born with clubfoot. One day, when she was about a year old, her mother arrived at the clinic after a successful orthopedic surgery, overjoyed that her child could finally wear shoes. I broke down. Small victories like that mean so much to these families. That same child recently passed away.
What were the biggest challenges faced by healthcare professionals at the height of the epidemic?
Everything was completely new to us. As a neonatologist, the only other example of such a high rate of birth defects that I had heard of was the thalidomide scandal of the 1960s. I have seen these problems occur with congenital rubella, but they were sporadic cases; it was not on the scale of an epidemic. This was an avalanche. For us pediatricians, it was so difficult to tell mothers that there was no effective treatment and nothing that could be done. Usually, children show great neuroplasticity. Certain regions of their brains are capable of forming new cells and replacing or absorbing damaged ones. But the devastation caused by the Zika virus was so extensive that there was no way this could happen in children with more severe cases of microcephaly. In children without microcephaly, stimulation can promote neuroplasticity. I found some joy in using developmental tests to identify key problems and working with specific stimuli for areas that determine certain functions. But for those with microcephaly, that was not enough.
What could be done at the time?
What we had to do at that moment in time was treat the symptoms, to improve the child’s quality of life, and provide the necessary stimulation. The problem was that there were not enough health professionals to do that for such a large number of children with microcephaly. Here at the Fernandes Figueira Institute, we trained numerous professionals to work in family clinics to care for these children. Then the local government changed and they were all dismissed. It was heartbreaking. Over time, these families have faced shortages, discontinuity, and neglect.
The doctor said: “Your baby does not need the ICU because he is going to die anyway.” How could anyone say that to a mother?
By whom?
By various groups. Politicians look at these children and say, “there is nothing we can do.” One mother, whose child has severe scoliosis [a spinal deformity] that causes lung problems, recently heard from the orthopedist: “Sorry, but you are not a priority.” These children and their families have never been considered a priority. Another child with microcephaly developed pneumonia and needed to be admitted to an intensive care unit. The doctor told the mother: “Your baby does not need the ICU because he is going to die anyway.” How could anyone say that to a mother? That is her son. He deserves the best possible care. Sometimes in medicine we have to make extremely difficult decisions. But this was not one of them—there was a bed available. It was simply an act of cruelty.
What has been learned about the disease since the epidemic?
We have learned a lot about what to expect in terms of the growth and development of these children and how important it is to monitor development. It is essential to keep track of developmental milestones—such as bringing a foot to the mouth, lifting their head, sitting up—in order to take advantage of windows of opportunity for stimulation. All you need for this is to know how to observe.
Does Brazil have the capacity to support this entire group?
Of course. Monitoring development is not complicated. It simply requires pediatricians in family clinics and basic health centers, and ongoing monitoring of the families. Some people say: “You cannot put specialists in those clinics.” But pediatricians are not specialists, they are general practitioners for children. Seventy percent of the women who had Zika during the epidemic were asymptomatic. So if we have no reliable tests to identify it, how can we know if a child was exposed to the virus? The best way to minimize developmental delays in these children is to monitor their development.
What else is needed to better address this?
A good serological test, mosquito control, and a vaccine.
How is Zika vaccine development progressing?
It is currently in the research phase. It would be really important for women of childbearing age.
What is expected for these children in the coming years?
Currently, they are struggling to access school. Many are entering adolescence, when all sorts of questions related to fertility arise. This will be a new challenge for their families.
The above interview was published with the title “Maria Elisabeth Moreira: The doctor who has not forgotten” in issue 356 of October/2025.
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