Latest news with #microcephaly
BBC News
03-08-2025
- Health
- BBC News
Ten years after the Zika outbreak: 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 had microcephaly - an abnormally small head - one of many conditions resulting from her mother being infected with the Zika virus while 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 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 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 still not clear why the outbreak spontaneously ceased and it hasn't resurged over the past disappeared from the public eye, and families dealing with its long-lasting consequences have been largely 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 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 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 had been abandoned by their husbands - some of whom have remarried and formed new 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 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 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 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 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 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 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 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 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 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 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, 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 didn't respond to questions about how the state has supported families affected by Zika ultimately, the mothers were 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. 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 lack of research might have to do with the fact that those affected are predominantly poor, says Ms 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 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."
NHK
02-08-2025
- Health
- NHK
Photo exhibition on atomic bomb microcephaly underway in Tokyo
An exhibition of photographs featuring people with atomic bomb microcephaly is now underway in Tokyo. In the atomic bombed cities of Hiroshima and Nagasaki, some children exposed to radiation while still in their mother's wombs were born with abnormally small heads, or microcephaly. The condition is often accompanied by intellectual and physical disabilities. The exhibition started on Saturday to mark the 60th anniversary of the launch of Kinokokai, which is a group of people suffering from microcephaly and those supporting them. The 16 photos on display were taken by two photographers, Shigeta Masahiko and Suganuma Kiyomi, in the 1960s and 1970s. Some of the photos show the everyday lives of people with atomic bomb microcephaly, such as doing household chores or sitting at a dining table. In others, they are seen in a hospital living away from their homes. Their families also appear campaigning for relief measures. People with atomic bomb microcephaly are called the youngest hibakusha, survivors of the atomic bombings. Most of the photos on display have not been made public before due to fears that they could lead to discrimination or prejudice. A senior member of the group, Hirao Naomasa, said atomic bomb microcephaly is relatively unknown. But Hirao said he wants people to get a glimpse of the lives of those with it and their families and also become aware of the effects of nuclear weapons. The exhibition runs through Wednesday at Gallery Furuto in Tokyo's Nerima Ward.
RNZ News
21-06-2025
- Health
- RNZ News
Genetic marker found for rare children's brain disease
A New Zealand-led research team has found new information about the cause of microcephaly, a disease that affects brain growth and function in children. Photo: Image by Gerd Altmann from Pixabay An Otago-led team has uncovered a genetic cause for a rare children's brain disorder. University of Otago associate professor Louise Bicknell, co-author of the study, said the international research team were investigating microcephaly, a developmental disorder where children's brains fail to grow. Dr Louise Bicknell says new research has helped pinpoint a genetic cause of the devastating children's brain disease microcephaly. Photo: Supplied/ University of Otago - Sharron Bennett They pinpointed specific changes in a gene called CRNKL1, and their findings were recently published in the prestigious American Journal of Human Genetics. It was the culmination of a seven-year study of a New Zealand family, Bicknell said. "Their wee girl had really severe microcephaly. Her brain was much smaller than we'd hoped for, and there were quite a few structural things that were abnormal about her brain, so quite unusual." Researchers compared her brain structure with that of nine children overseas who also had the condition. "It was only then that, we realised they all had similar features, of a really small brain, as well as these structural [aspects] of other parts of the brain not being so usual." In a striking discovery, nine of the families also showed genetic changes in the exact same spot in the CRNKL1 gene. It proved there was a strong link between these specific genetic changes and the disorder, and it was an exciting breakthrough, she said. "That's when the heart starts racing and you know you are onto something. Your gut instinct kicks in and says, this can't be a coincidence, this must be something." Lead author Dr Sankalita Ray Das, a postdoctoral fellow at Otago's Rare Disorder Genetics Laboratory, said the research findings clearly showed that CRNKL1 was "crucial" for healthy brain development. "Importantly, this knowledge has provided understanding for families affected by these severe conditions and lays the foundation for further research into why just the brain is affected by these genetic changes." The researchers received funding from the Neurological Foundation of New Zealand, Cure Kids and the University of Otago, Bicknell said. Sign up for Ngā Pitopito Kōrero, a daily newsletter curated by our editors and delivered straight to your inbox every weekday.
