What happened to the babies born with microcephaly?

When Rute Freires told a doctor that his newborn daughter Tamara would not live long, she began to cry uncontrollably.

Tamara had microcephaly, one of the many conditions caused by her mother’s infection with Zika virus when she was pregnant.

Now nine -year -old Tamara eats a stomach tube. His hands are increasingly harder and shrinkage and he has difficulty holding his head still.

Rute, “he was told to walk, he would not talk or smile,” he says.

“And I would still ask every doctor I visited: ‘My child will walk, right?’ ‘

Rute’s daughter is one of the about 2,000 babies born from women. He made a contract with a mosquito -based virus in Brazil Between 2015 and 2016.

At that time, the country was preparing to host the Olympics, and the world spread to Brazil as well as tens of other countries as they spread to dozens of other countries.

A Public health emergency By the World Health Organization and Brazilian officials who were warned until May 2017.

It is still not clear why the outbreak has stopped spontaneously and has not re -emerged in the last decade.

Zika disappeared from the eyes of the people, and families dealing with their long -term consequences were largely forgotten.

According to government figures, 261 children diagnosed with congenital zika syndrome – birth defects caused by infections during pregnancy – died. Hundreds of people saw that their health conditions were worsening.

Tamara is one of them. He lives in Maceió, a coastal city in Northeast Brazil, where 75% of Congenital Zika Virus syndrome syndrome syndrome is recorded.

Scientists I still have no definite explanation Why this region is most affected.

Congenital Zika syndrome is characterized by heart problems, common problems and difficulty in chewing and swallowing.

Most of them do not pass through mileage stones, such as crawling, food, walking, speaking or potty education.

To deal with the difficulties of raising his daughter, Rute united his forces with other affected mothers. He first met them in a support group in 2016, which was brought together by local health authorities.

“There were too many children with the same syndrome as Tamara.

But life was still difficult. A year later, women felt that they could not get enough support from local authorities.

Thus, they formed an independent group with an soothed yellow shirts to help each other and demand more.

Most of the mothers stopped working and lived outside the state advantages of about $ 265 (£ 199 £ 230) per month – the minimum wage.

They found themselves in legal battles against the health system trying to secure the operations, wheelchairs, drugs and baby formula.

Some of them were abandoned by their husbands who had re -married and established new families.

Alessandra Hora, the founder of the association, says that men rarely come to the group.

“I heard that many women felt that their husbands felt that they put a mother before the role of their wife.”

Women found new ways to organize their lives.

After applying to public housing officials, about 15 were able to enter the same complex, where they lived for five years.

“Our aim was to live close to each other, so that they were able to help each other, and that most of them were a support network that they didn’t have.”

After he was killed in the skirts of Maceió in his son’s neighborhoods, his grandson, who had Congenital Zika syndrome, became interested in Erik.

Rute moved to the housing block of Zika mother after divorce.

His children, Moisés and Enzo’s neighbors, who had congenital zika syndrome, were close to Anne Caroline da Silva Rosa and Lenice França.

Like Tamara, Moisés eats from a feed tube coming out of his stomach. He can’t stand it anymore, but his little sister Maria runs a slight smile when she covers her in hugs and kisses.

Enzo is one of the few children with more autonomy zika -related microcephaly. After entering and leaving hospitals for many years, the nine -year -old can now walk and talk.

Living very close to each other means that mothers can share clues about how their children will handle the complex health conditions. But there were other benefits.

When Rute offered to look at Anne Caroline and Lenice Tamara, she began to take night lessons – that means that she can continue her work and get high school degree.

Tamara can neither walk nor speak, as doctors guessed. A few years ago, he could not correct his gaze to an object – but thanks to physical therapy, he can now recognize himself in the mirror.

His eyes follow his mother wherever he goes. Rute often looks at each other while hugging it on the couch and caressing their long curly hair.

The ten -year war for mothers for better financial assistance also worked.

In December, the Brazilian Congress approved a draft five times higher than the current allowance that the families affected by Zika received compensation of $ 8,800 in 2015 and monthly payments.

However, President Luiz Inácio Lula Da Silva vetoed the bill, saying that the financial consequences were uncertain. Instead, the management proposed a 10,500 -time payment.

Experts such as Dr. Mardjane Lemos, who identified some of the cases of microcephaly associated with Zika, said it was far from being sufficient.

State officials have failed to have more than one level of their families – argued that they could not include children who could not contain virus for years and who were inadequate.

Alagoas Province Health Department, citizens stagnant water cleaning and health surveillance officials thanks to efforts to educate the virus situation in the region has healed in recent years, he said.

They did not answer questions about how the state supported families affected by Zika syndrome.

But after all, mothers became victorious.

The veto on the design of President Lula was overturned and they were told that they will receive all the compensation levels approved on the 2015 bill.

Although Ms. Lemos, the number of cases of zika and the birth of infants with syndrome decreases sharply, a new epidemic is possible because the cause of the decline is still unknown.

“The explosion in cases seems to have ended spontaneously. This leads to the theory that there is a natural immunity. But is it really like that? How long does it take? We don’t know.”

Ten years of epidemic, lack of research did not answer many questions. For example, why was Northeast Brazil so badly hit, especially poor women?

A study suggests that this may be associated with mother malnutrition. Another suggests that water contaminated water with a bacteria may have produced a nerve damaged toxin that makes the effects of the virus on the brains of infants.

Patrícia Garcez, a researcher of congenital brain malformation, led by two projects, respectively, said that the response to the BBC could be a combination of these and other factors.

“Now we know a little more [about] Environmental factors that may have contributed to higher prevalence, but we do not fully understand how they contribute, King says Dr. Garcez, who taught at King’s College London, emphasizes the lack of research as a problem.

Lemos may be related to the fact that this lack of research is predominantly poor.

Despite the uncertainty, winning the war of compensation gave a new sense of optimism for the future.

“When I heard the news, I felt a lot of joy, I wanted to scream, or he says.

Now it aims to get a good paid job in education and good. Tamara wants to buy private health insurance and one day to buy a car, take it to medical appointments.

“Some mothers thought it wouldn’t come today,” he adds. “But I didn’t give up my hope.”