Their children can't eat, speak or walk - so forgotten Zika mothers raise them together

8 minutes ago Share Save Camilla Veras Mota BBC News Brasil Reporting from Maceió, Alagoas state Share Save

BBC Rute Freires lives with her daughter Tamara, who has congenital Zika syndrome

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. Zika Love Stories: I went to Brazil to find out how families are coping

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.

Felix Lima/BBC News Brasil Rute befriended neighbour Anne Caroline Rosa and her children Moisés and Maria

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.

Moving in together

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.

Felix Lima/BBC News Brasil Alessandra Hora raised her grandson, who has congenital Zika syndrome, after losing her son

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.

Felix Lima/BBC News Brasil Lenice França, Anne Caroline Rosa and Rute Freires supported each other through the ups and downs of raising children with 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.

Winning higher compensation

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.

Felix Lima/BBC News Brasil Lenice, with her son Enzo, helped look after Tamara so Rute could resume her education

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.

Mysterious drop in cases

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.

Felix Lima/BBC News Brasil Mardjane Lemos diagnosed the first cases of microcephaly caused by Zika in the state of Alagoas

Attenborough gives 'family feels' in new show Parenthood

11 minutes ago Share Save Paul Glynn Culture reporter Share Save

BBC/Silverback Films/Russ Maclaughlin A father lion seen patiently playing with his young cub in the new series

Sir David Attenborough's latest BBC One series documents how parents from across the animal kingdom sacrifice everything in order to raise their young. And in the case of the African social spiders, in Namibia, it is quite literally the final sacrifice. As we discover in Parenthood, the mother spider gives her life for her spiderlings, who, when the time is right, slowly but surely creep up on her and their other elderly relatives en masse and eat them alive... making room for the new generation. Known as matriphagy, for director Jeff Wilson this moment provided the scene for "the perfect natural history sequence", as well as "the best narration I've ever heard him [Sir David] do." "David knows exactly what is needed to tell the story," says Wilson. "It's a story about the ultimate commitment of a parent. How far do you take your parenting commitment? "I'm not asking any human parents to go that far," he clarifies. "But we all know that if you turn up at the school gates without a snack that you're verging on being eaten by your child anyway! "So there's a damn good lesson in that."

'Amazed with the wonder'

Capturing such a scene in a "non-intrusive way" requires a huge collaborative effort from a top team of scientists and cinematographers, he adds. "The spiderlings are about the size of a grain of sugar, and the adults are about the size of your thumbnail. So it's a very small world that you're in." Wilson warns viewers will be left "shivering with disgust" while also "amazed with the wonder of it all".

Watch: African spider mothers sacrifice themselves to feed their young

Parenthood - not to be confused with the 1989 Steven Martin family comedy film - mines the rich well of universal truisms around parenting, he notes, something that lends itself nicely to storytelling. Wilson realised the unique angle of exploring parenting in the wild had potential, after previously working with Sir David on another BBC and Silverback Films collaboration called The Mating Game. The filmmaker was "inspired" by observing "how adaptable other parents" in the wild are, and how alive they are to changes in the natural world. So he went looking - in jungles, grasslands and oceans - across six continents for where more "lessons could be learned" about parental change, dedication and ingenuity. "The world is changing for everybody really quickly," he stresses, with a nod to the serious threats caused by climate change. "We wanted to tap into that idea that there is an uncertain future for both animals and humans. "How do we adapt to a world that is changing around us? It's so relevant to all of us." He continues: "As a parent myself I constantly worry, what is the world that my children are going to grow up in?"

BBC Studios Bafta award-winning broadcaster Sir David Attenborough's previous series include The Life Collection, the Planet Earth franchise and The Blue Planet

Aside from the heroically maternal spiders, other potential breakout viral stars of this series include: Orangutans who spend up to a decade teaching and showing their young various behaviours and foods Boxer crabs which clone an anemone underwater to protect their young, creating weapons so they can protect themselves from predators Elephant mothers navigating unpredictable waterways with their babies, and the challenges they face to keep their family alive during droughts, deluges and flash floods An old fish which climbs waterfalls to build nests for its young, while being overtaken by younger, fitter males A poison dart frog father who carries his tadpoles on his back – one-by-one - up huge trees, from pools on the rainforest lawns to much safer and better ones on the treetops. "It's like watching [US rock climber] Alex Honnold free solo," jokes Wilson

BBC/Silverback Films/Jeff Wilson The new series was filmed over three years in 23 countries across six continents

As hi-tech, close-up images draw us into their worlds, their stories are also driven along in dramatic, heart-rending fashion by a bittersweet musical score courtesy of British composer Tom Howe (who also worked on Mulan and Ted Lasso). The series also includes a theme song by Sam Ryder, recorded at Abbey Road, which Wilson hopes will become a hit. All of which brings us back to the show's famous narrator, Sir David, who - at 99 years old - is still providing "special" and "unique" TV moments, his director tell us. And always in no more than two takes. "There can be very few people on Earth who have the ability to communicate to an audience from two [years old] to 102, and feel like they're communicating it at their level," says Wilson, who is also series producer. "And that's not [just] Sir David as we see him on screen, that's Sir David in real life." He continues: "When you're working with a partner who understands the natural world as well, if not better than you do, that's always exciting."

'Relatable parental dilemmas'

BBC/Silverback Films A white headed langur mother and infant hanging out together

Bend It Like Beckham 'made me feel heard and seen'

11 minutes ago Share Save Grace Dean BBC News Share Save

Simran Sandhu Simran Sandhu says she wasn't allowed to join a football team until she was 14

Growing up, Simran Sandhu just wanted to play football. She loved having a kick around the garden with her brothers, but her Punjabi dad wasn't keen on her joining a team. He didn't even like her playing FIFA on the PlayStation. Football was a boys' sport, he said. Simran was jealous of her younger brothers, who were allowed to play on teams and who she spent her weekends watching from the sidelines. "Even when it came to just playing in the garden I'd noticed silly things like my dad would be paying more attention to my brother, passing the ball to him more," Simran, now 23, says.

Simran Sandhu Simran wanted to join a football team like her younger brothers

It wasn't until Simran was 14 that her dad let her join a team. And around that time, she also first watched Bend It Like Beckham - and was surprised by how much Gurinder Chadha's 2002 film reflected her experience. People would point to Jesminder Bhamra, the film's main character, and say, "That's literally you", Simran says."When I heard the title, I didn't expect it to be so close to my heart. It made me feel heard and seen."

Simran Sandhu Simran loved football from a young age

The film focuses on Jesminder's passion for football and her Punjabi parents' resistance to her playing the sport. They're more concerned about her sister's upcoming wedding and Jesminder staying out of trouble. Jesminder, or Jess, as she's known, has to sneak behind her parents' backs as she joins a girls' team with her friend, Jules. The film, peppered with witty one-liners and iconic scenes, follows the teen's attempts to placate her family while chasing her dream of getting scouted. A sequel is now on the cards, Chadha said last month. "We've been part of changing the game for women, so it felt like this was a good time for me to go back and investigate the characters," she said, suggesting that the new instalment could come out in 2027, which would mark the film's 25th anniversary. BBC News spoke to women about the film's legacy. "I wanted to be Jess," says Maz Ullah, who's watched Bend It Like Beckham dozens of times. "I'd never seen a brown girl on TV who represented me so well." Maz rented the film from Blockbuster in the early 2000s. It was a "mirror" of her life, she says.

Maz Ullah Maz says her dad wouldn't let her play football

When she was young, her dad - himself a huge football fan - took her to a shop and told her she could pick any sport to start. But when she chose football, "he was like, 'Except for football, you can't play football, you should play tennis,'" Maz says. The concept of female footballers was "alien" to her dad, she says. "That conversation and that attitude impacted my confidence." Maz gave up her dream of playing. Though some people of Indian heritage told the BBC the film represented their culture well, Northumbria University's Dr Aarti Ratna, who researches Asian representation in sport, says the film draws on some stereotypes and many South Asian female footballs do actually have enthusiastic parents. This was the case for Riya Mannu, who plays for Birmingham City FC. "My dad didn't question it when I said I wanted to play," the 18-year-old says. But she still faced barriers, including having to join a boys' team when she was eight because she couldn't find any girls' ones nearby. Riya says she's watched the film, which starred Keira Knightley and Parminder Nagra, dozens of times. She even saw a stage adaptation and got a photo with Chadha. It was one of the things that inspired her to become a footballer, she says. Even people who don't follow football say the film has had a huge impact because of its representation of South Asian culture. "It was a staple in a brown household," says Jasmine Rai, 25, adding it was "the first time I saw a brown girl in a positive light" in a film. Her friend Natasha Retnasingam, 25, says she's watched the film at least 20 times - "I can recite that movie," Natasha says. "For me, it was less about football and more about the fact you can go after your goals no matter what."

Jasmine Rai and Natasha Retnasingam Jasmine Rai and Natasha Retnasingam, pictured with Bend It Like Beckham director Gurinder Chadha, praised the film's portrayal of South Asian families

Yasmin Hussain watched the film when she was a teenager. "It was needed," she says. "It was the first time I've ever seen something like that on TV." By the time she watched the film, in the early 2000s, Yasmin had already given up on the sport because she couldn't find a team with a female coach nearby. Before that, she'd been playing with brothers and his friends on the street, but "it was an environment my parents didn't feel that was appropriate or safe for me." "I knew that it's something that I won't be able to be doing long," Yasmin says. "It was just basically a matter of when it was I had to give it up. I didn't think it would be as soon as the age of 13." In the 23 years since the film came out, women's football in the UK has changed massively, says Prof Hanya Pielichaty of the University of Lincoln, who researches gender and sport. Five reasons the film is still iconic

Bend it Like Beckham inspires footballer's career

Why we need to talk about periods, breasts and injuries in women's sport "Finally, people are starting to take women's football seriously, injecting it with sponsorship, with cash, with facilities, allowing women to be full-time footballers rather than a full-time lawyer and a footballer on the side," she says. "It didn't seem like it would ever happen." There have been changes in grassroots football, too, she says. When Bend It Like Beckham came out "we were playing in men's old football kit, we were getting changed in toilets or shabby changing rooms, doing the best that we could, putting in two pounds a week to contribute to the referee," says Prof Pielichaty, who played football for more than 20 years. While there's been huge progress, "there's still some girls fighting to get teams, there's still lots of parents of female footballers having to pay money to get kits and to be in an academy structure," she says.

Handout Yasmin returned to football as a coach

Tan lines are back in fashion. But can you get the look safely?

13 minutes ago Share Save Ruth Clegg Health and wellbeing reporter Share Save

Shutterstock

"I am literally going to apply this fake tan all over my bikini top," Jemma Violet says, as she smears chocolate brown mousse over her chest, neck and halter-neck bikini. I'm watching a TikTok video in which the beauty influencer is explaining how to develop a vibrant set of tan lines - without sunbathing. "Make sure you do your arms and everything... and then wait a couple of hours before washing it off." A flash frame later and Jemma is showing off two very visible white stripes connected to two white triangles poking out of the top of her boob tube. Tan lines glowing, job done.

Jemma Violet

Back in the 90s, I remember the abject horror of having tan lines on display and doing all I could to even mine out - with limited success. Fast forward to the mid 2020s and tan lines have become a fashion statement to be shown off. "When they were out of style they were seen as an imperfection, now they're associated with the summer and an active lifestyle - they've become desirable," Jemma says. "This year it's risen to a whole other level - they're even on the catwalk." Some fake tanners are even using masking tape - the type I use on my skirting boards - to create that crisp line across their skin. "My videos are about getting that tan line safely," Jemma says. "I feel pretty captivating, the look is eye-catching - especially the contrast between the darker skin and the white tan lines." Jemma is one of thousands extolling the virtues of tan lines, with posts notching up more than 200m views on TikTok. But alongside fake tanners like Jemma, there are just as many heading outdoors and under the hot sun, determined to create real tan lines - even if that means burning themselves and suffering the painful consequences. Hashtags such as #sunburntanlines, #sunpoisoning and #sunstroke are popping up alongside videos of young men and women - some in tears - revealing deep red, almost purple, often puckered skin. Some are asking for help and advice, others actually want to show off their badly sunburned bodies. I've even seen one young woman proudly stating, "No pain no gain".

Slim Aarons/Getty Images Sunbathers by a hotel swimming pool in Italy, 1974

Having a visible tan in Victorian times was a clear sign you were poor working class and probably spent most of your time hawking barrels of hay for very little recompense. By the 1920s, a few freckles and a well-placed tan line would probably mean you had moved up a social class or two, and suggested health, wealth and luxurious holidays. By the 1960s and 70s sun lovers were using cooking oil and reflective blankets to deepen their tans. But the links between ultraviolet (UV) radiation and skin cancer were becoming more widely known - and indisputable. So marked the beginning of a complex relationship with the desire to change our skin colour - and while tans are still sought after by millions of us, there is now little doubt a natural one carries with it a hefty element of risk.

Jak Howells Jak Howells

If someone had lectured Jak Howells about the risks of sunburn a few years ago those warnings would likely have fallen on deaf - and probably sunburnt - ears. "I know it seems strange to be addicted to lying on a sunbed," the 26-year-old from Swansea says, "but I was." It began when Jak was 15, with a few of his older mates in school using them. By the time he was 19 Jak was on sunbeds five times a week, for 18-20 minutes at a time. "My skin was so burned - my face looked like a beetroot. But I kept on going back for more," he says. "I knew in the back of my mind that there was a risk - I wasn't oblivious - but I didn't take it seriously. Jak says he used to enjoy when people complimented him on how he looked and remarked on his tan. "It gave me such a buzz, I loved it," he says. But it was seeing the look of horror on his mum's face, as she examined a bleeding mole on his back, that made Jak realise his love of sunbeds had gone too far.

Jak Howells Jak Howells's melanoma

Just before Christmas 2021, Jak was diagnosed with melanoma, one of the most dangerous types of skin cancer, which can spread to other parts of the body. What followed, he says, were two years of "hell and horror". Jak had a complicated operation that involved surgeons cutting away two inches of skin from his lower back, chest and groin. But three months later the cancer was back. Jak then had immunotherapy - which uses the body's own immune system to fight the cancer - and was told if that didn't work, he had only a year to live. "The sickness was horrific - I would lie in bed for days," Jak says. "It felt like I had been hit by a bus. I had such a damaged body, I was a shell of a human. I lived for the next scan, the next treatment."

'Massive backwards step'

Melanoma skin cancer rates in the UK have increased by almost a third over the past decade. I asked Megan Fisher from Cancer Research UK why this is happening in an era where the risks posed by harmful rays from the sun and the links to skin cancer are now well known. "It's partly down to those people who may have burnt several decades ago," she explains. "You only need to get sunburnt once every two years to triple your risk of getting skin cancer." As a population, we are growing older, so are "more likely to see more cancers" and "we are spotting them more quickly", she adds. However, there are also concerns part of the increase could be down to the volume of misinformation doing the rounds online. "We've taken a massive backwards step," says Dr Kate McCann, a preventative health specialist. "The message that the sun is good and sunscreen causes cancer is a complete loss of health literacy."

Wiktor Szymanowicz/Future Publishing via Getty Images Fake sunburn featured at London Fashion Week

She says the current trend to create tan lines by burning in the sun, coupled with false claims that suntan lotion is responsible for the very cancer it's trying to prevent is a "perfect storm". "If I see a child or a young person with sunburn now, I know they have an increased risk of cancer in 20 or 30 years." While there are some ingredients in suntan lotions - like oxybenzone - that can cause environmental damage to coral reefs, there is not evidence to suggest it poses a risk to humans, Dr McCann says. "If you don't want to use a suntan lotion with certain chemicals there are plenty of more natural ones on the market - zinc and mineral based ones - but you can't just stop wearing sunscreen."

Jak Howells Jak Howells following his treatment

As a young man Jak relished his tan lines. Now he says he's frightened by the sun and lathers himself up in SPF before even thinking about stepping outdoors. Given the all clear from cancer in December 2022, he now has a career he loves making content and talking about his experiences to raise awareness. Looking back he says he realises what happened to him was "probably self inflicted". "For a long time I blamed myself and I beat myself up about it," he says. "But I have been lucky enough to live through the consequences - and they were horrendous. So maybe now I feel like I've done my time." Back on TikTok, in her own way, beauty influencer and fake tanner Jemma is also trying to prevent others from going through what Jak did. "Skin damage is real," she says. "We're not doing that."