What happened to infants born with microcephaly?

When a doctor was told Root Frears that her newborn daughter Tamara did not last long, she started crying uncontrollably.

Tamara had microcephori – an unusually small head – one of the many conditions infected with Zika virus while getting pregnant.

Now at the age of nine, Tamara eats through the abdominal tube. His hands are rapidly rigid and contracted and he still has a difficult time holding his head.

“I was quickly said that she would not walk, she would not speak nor smile,” says the route.

“And yet I used to ask every doctor that I had gone: ‘My child is going to walk, isn’t it?” ,

Root’s daughter is one of about 2,000 infants who are born for women Contracted mosquito virus in Brazil Between 2015 and 2016.

Subsequently, the country was preparing to host the Olympics and the world was seen with anxiety as the viruses were spread over dozens of other countries along with the entire Brazil.

A Public health emergency was declared The World Health Organization and Brazilian officials, whose warnings persisted till May 2017.

It is still not clear why the outbreak stopped spontaneously and it has not alive in the last decade.

Zika disappeared from public point of view, and families dealing with its long -lasting results have been forgotten to a great extent.

According to government figures, 261 children came to know of congenital zika syndrome – a pattern of birth defects due to infection during pregnancy – died. Hundreds of people have seen their health deteriorating deteriorating.

Tamara is one of them. She lives in Mesio, a coastal city in North-East Brazil, where 75% of cases of congenital zika virus syndrome were registered in the country.

Scientist Still not a decisive explanation Why was that area the most affected.

Congenital zika syndrome is characterized by heart problems, joint issues and difficulty in chewing and swallowing.

Most of these traditional development do not pass through milestones such as crawling, food, walking, speaking or potty training.

To deal with the challenges of raising her daughter, the route joined the army along with other affected mothers. She first met in a support group kept together by local health officials in 2016.

“There were many children with syndrome similar as Tamara. We started talking to each other, exchange of information … and things finally started to understand.”

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

So they formed an independent group with Bespoke Yellow shirts to help each other – and more demanded.

Many mothers had stopped working and stayed away from the state gains of approximately $ 265 (£ 199; € 230) per month – minimum wages.

He found himself in a legal battle against the healthcare system, trying to secure surgery, wheelchair, medicine and the child’s formula.

Many were released by their husbands – some of which have remarried and formed new families.

The founder of the association, Alesndra Hora, says that men rarely came into the group.

“I heard from many women that their husbands felt that they were becoming a mother before the role of a wife,” she tells the BBC.

Women have found new ways to organize their lives.

After making an application for public housing authorities, around 15 were able to move to the same campus, where they have now lived for five years.

“Our goal was to stay close to each other for them so that they could help each other – to have a support network that is not the most,” says Alesandra.

He started taking care of his grandson Eric, who has a congenital zika syndrome, his son was murdered on the outskirts of Mesio in his neighborhood.

Root moved to Zika Mother’s Housing Block after her divorce.

She became close to her neighbors Anne Caroline da Silva Rosa and Lenis Franka, whose children have congenital zika syndrome in Moice and ENJO.

Like Tamara, moisés eats through a feeding tube that originates from her stomach. He can no longer stand up, but he manages an unconscious smile when his younger sister Maria covers her in a hug and kiss.

Enzo Zika- One of the few children related to the related microcephorial, who has more autonomy. After many years and in hospitals, the nine -year -old child is now able to walk and speak.

Staying so close to each other means that mothers are capable of sharing suggestions about their children’s complex health conditions. But there are other benefits.

Root started taking night classes when Anne Caroline and Lenis offered Tamara to take care of – which means that she can resume her studies and get a high -college degree.

Tamara can neither walk nor speak, as the doctors predicted. A few years ago, she could not fix her gaze on an object – but thanks to physical therapy she can now recognize herself in a mirror.

His eyes follow his mother everywhere. They usually stare each other when the route cuddling on the couch with her and caresses her long curly hair.

The battle of mothers for better financial assistance has also been paid.

In December, the Brazilian Congress approved a bill introduced back in 2015, which will be seen that the families affected by Zika would receive a compensation of $ 8,800, and a monthly payment of $ 1,325 – five times more than the current allowance.

But President Luiz Inecio Lula Da Silva veto the bill, saying that its financial implications were not clear. Instead, his administration proposed a payment of $ 10,500 each.

Experts such as a doctor, a doctor, who diagnosed some of the first cases of microcefly related to Zika, said it was far away.

He argued that state officials had thwarted families at several levels – failed to include the virus and affected the affected children for years.

The health department of the state of Alagas said that the situation in the region had improved thanks to their efforts in recent years to clean the stable water and train health monitoring officers in recent years.

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

But finally, mothers were victorious.

President Lula’s veto was overturned on the bill and he was told that he would get the full level of compensation approved in the 2015 bill.

Even though the number of zika cases and the syndrome have fallen rapidly in the birth of infants, a new outbreak is possible because the cause of the decline is still unknown, says Ms. Lemos.

“The bounce in matters is easily closed. It leads to the principle that there is some natural immunity. But is it really the case? How long does it last? We don’t know,” she explains.

After a decade from outbreak, the lack of research has unlikely to many questions. For example, why was North-Eastern Brazil killed so badly, especially poor women?

A study suggests that it may be related to maternal malnutrition. Another proposal is that contaminated water with bacteria may produce a nervous-hiratory toxin, causing the virus effect on the brain of infants.

Congenital brain pathology researcher Patrícia Garcez and Neuroscientist Stevens Rehen, who led two projects, respectively, told the BBC that they believe that the answer may be a combination of these and other factors.

“We know a little more [about] Dr. who teaches at King’s College London. Says Garsage, “Environmental factors have contributed to high proliferation, but we do not fully understand how they have contributed, who teach in Kings College London, highlight the lack of research as a problem.

This deficiency of research may have to be done with the fact that the affected people are primarily bad, Ms. Lemos says.

Despite uncertainty, winning the battle for compensation has given a new feeling of optimism for the future.

“I felt so happy when I heard the news, I wanted to scream,” she says.

Now she is aiming to get merit in education and a well -paid job. She wants private health insurance for Tamara and dreams of buying a car one day to take him to medical appointments.

“Some mothers thought that the day would not come,” she says. “But I did not give up hope.”