What happened to the babies born with microcephaly?

When Rute Freires was told by a doctor that her newborn daughter Tamara wouldn’t live long, she started crying uncontrollably.

Tamara had microcephaly – an abnormally small head – one of many conditions resulting from her mother being infected with the Zika virus while pregnant.

Now nine-years-old, Tamara eats through a stomach tube. Her hands are increasingly stiff and contracted and she has a hard time holding her head still.

“I was told early on that she wouldn’t walk, she wouldn’t speak nor smile,” says Rute.

“And yet I would ask every doctor I visited: ‘My kid is going to walk, right?'”

Rute’s daughter is one of the nearly 2,000 babies born to women who contracted the mosquito-borne virus in Brazil between 2015 and 2016.

Back then, the country was preparing to host the Olympics and the world watched with concern as the virus spread across Brazil as well as to dozens of other countries.

A public health emergency was declared by the World Health Organization and Brazilian authorities, whose warning remained in place until May 2017.

It’s still not clear why the outbreak spontaneously ceased and it hasn’t resurged over the past decade.

Zika disappeared from the public eye, and families dealing with its long-lasting consequences have been largely forgotten.

According to government figures, 261 children diagnosed with congenital Zika syndrome – a pattern of birth defects caused by infections during pregnancy – have died. Hundreds more have seen their health conditions deteriorate.

Tamara is one of them. She lives in Maceió, a coastal city in north-eastern Brazil, where 75% of the cases of congenital Zika virus syndrome in the country were registered.

Scientists still don’t have a conclusive explanation of why that region was the most affected.

Congenital Zika syndrome is characterised by heart problems, joint issues and difficulty co-ordinating chewing and swallowing.

Most of those with it do not go through traditional development milestones like crawling, eating, walking, speaking or potty training.

To deal with the challenges of raising her daughter, Rute joined forces with other affected mothers. She first met them in a support group put together by local health authorities in 2016.

“There were so many kids with the same syndrome as Tamara. We started talking to each other, exchanging information… and things finally started to make sense.”

But life was still difficult. A year on, the women felt they weren’t getting enough support from local authorities.

So they formed an independent group, with bespoke yellow shirts, to help each other – and demand more.

Many of the mothers had stopped working and were living off state benefits of around $265 (£199; €230) per month – the minimum wage.

They found themselves in legal battles against the healthcare system trying to secure surgeries, wheelchairs, medication and baby formula.

Several had been abandoned by their husbands – some of whom have remarried and formed new families.

The founder of the association, Alessandra Hora, says men rarely came to the group.

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

The women have found new ways of organising their lives.

After making an application to public housing authorities, almost 15 were able to move into the same complex, where they’ve now lived for five years.

“Our goal was for them to live close to one another so they could help each other – to be the support network that most don’t have,” says Alessandra.

She started taking care of her grandson Erik, who has congenital Zika syndrome, after her son was murdered in their neighbourhood on the outskirts of Maceió.

Rute moved to the Zika mothers’ housing block after her divorce.

She became close to her neighbours Anne Caroline da Silva Rosa and Lenice França, whose children Moisés and Enzo also have congenital Zika syndrome.

Like Tamara, Moisés eats through a feeding tube that comes out of his stomach. He can no longer stand, but he manages a faint smile when his little sister Maria covers him in hugs and kisses.

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

Living so close to one another means the mothers have been able to share tips on how to handle their children’s complex health conditions. But there have been other benefits too.

Rute started taking night classes when Anne Caroline and Lenice offered to look after Tamara – meaning she could resume her studies and obtain a high-school degree.

Tamara can neither walk nor speak, as doctors predicted. A few years ago, she couldn’t fix her gaze on an object either – but thanks to physical therapy she can now even recognise herself in the mirror.

Her eyes follow her mother everywhere she goes. They usually stare at each other when Rute is cuddling with her on the couch and stroking her long curly hair.

The mothers’ decade-long battle for better financial assistance has also paid off.

In December, Brazil’s Congress approved a bill introduced back in 2015 that would see families affected by Zika receive compensation of $8,800, and monthly payments of $1,325 – five times higher than the current allowance.

But President Luiz Inácio Lula da Silva vetoed the bill, saying its financial implications were unclear. His administration had instead proposed a one-off payment of $10,500.

Experts like Mardjane Lemos, the doctor who diagnosed some of the first cases of Zika-related microcephaly, said this was far from enough.

She argued that state authorities had failed the families on multiple levels – failing to contain the virus and under-compensating affected children for years.

Alagoas state’s health department said the virus situation in the region had improved in recent years thanks to their efforts in educating citizens to clear stagnant water and training health surveillance officials.

They didn’t respond to questions about how the state has supported families affected by Zika syndrome.

But ultimately, the mothers were victorious.

President Lula’s veto on the bill was overturned and they were told they would receive the full levels of compensation approved in the 2015 bill.

Even though the number of Zika cases and births of babies with the syndrome have sharply dropped, a new outbreak is possible as the cause of the decline is still unknown, says Ms Lemos.

“The boom in cases seems to have spontaneously ceased. This leads to the theory that there is some natural immunity. But is that really the case? How long does it last? We do not know,” she points out.

A decade on from the outbreak, a lack of research has left many questions unanswered. For example, why was north-eastern Brazil so badly hit, especially poor women there?

One study suggests that it might be related to maternal malnutrition. Another proposes that water contaminated with a bacteria may have produced a nerve-damaging toxin making the effects of the virus on the babies’ brains worse.

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

“We know a little more now [about] the environmental factors that may have contributed to the higher prevalence, but we don’t fully understand how they have contributed,” says Dr Garcez, who teaches at King’s College London, highlighting the lack of research as a problem.

This lack of research might have to do with the fact that those affected are predominantly poor, says Ms Lemos.

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

“I felt such joy when I heard the news, I wanted to scream,” she says.

Now she’s aiming to get a qualification in education and a well-paid job. She wants private health insurance for Tamara and dreams of buying a car one day, to take her to medical appointments.

“Some of the mothers thought this day wouldn’t come,” she adds. “But I didn’t give up hope.”