Our babies are 'little warriors': how love is transforming tragedy in the wake of Brazil's Zika outbreak
Joana Passos with her daughter Gabi CREDIT: NATALIE BOUGES
The birth of thousands of babies born with physical and mental disabilities as a result of the Zika virus may be heralding changing attitudes towards disabilities in Brazil.
In 2015 to 2016 Zika swept through Latin America and, while the virus usually produces fairly mild symptoms, this epidemic was linked to a spike in the number of babies born with birth defects to women who contracted the disease while pregnant.
Around 2,000 babies in Brazil were born with microcephaly - where the head circumference is smaller than normal - leading to developmental delay and physical problems. An unknown number of other children were born with other less severe impairments, also linked to the virus.
Researchers are still unclear as to why the virus caused these defects and why so many were concentrated in the north eastern part of the Brazil.
Mila Mendonça and Joana Passos, two friends from Salvador, north east Brazil, whose babies have microcephaly, came to the UK to talk to researchers about their experiences of what has been named congenital Zika syndrome - the cocktail of impairments that babies whose mothers contracted the disease have.
When Ms Mendonça, a lawyer, contracted Zika during her pregnancy in mid 2015 no one knew at the time about the risk the virus posed. She had a minor skin rash but thought nothing more of it. It was only during a routine scan in August that she found out that there was something wrong with her baby.
“Nothing can be worse for a mother or father than to receive this news,” she said. By October “the world discovered the link between microcephaly and Zika. It felt like we were keeping a big secret. Complete strangers would come up to me and give me unsolicited advice about my pregnancy. The talk of Zika was growing at the same time as our babies were growing,” she said.
Her son, Gabriel, was born in December 2015, by which time she realised there were many more families in the same situation as her.
Mila Mendonça with her son Gabriel CREDIT: NATALIE BOUGES
“By the time these babies were born it was a relief. They survived, they could breastfeed. They were little warriors,” she said. Like Ms Mendonça, Joana Passos was pregnant with her second baby when she contracted the virus. Her daughter, Gabi, was also born in December 2015.
During her pregnancy her doctor set up a WhatsApp group for affected families so that scientists could co-ordinate research. But that group grew into something much more important, said Ms Passos.
“The group became a space for families to talk about their feelings, anxieties, doubts and happiness about the arrival of new children in their lives and the small victories they had every day.
"We wanted to share this with people who were going through the same experiences. This group gave me strength,” said Ms Passos.
“The health system was unprepared for this. It was very difficult to find information or treatment. Most of the families were socially vulnerable so it was a lot more difficult to find assistance,” she says.
The two friends have formed a charity with other parents and are trying to bring about change - not just for their own children, but for all parents with children with disabilities.
“The mothers are fighters - they fight for the rights of their children and for other disabled children. Together, we are very strong,” she said.
One mother told her how a bus driver refused to help her get on the bus with a wheelchair. The group contacted the transport authorities to discuss the problem which was promptly resolved.
Hannah Kuper, a researcher in disability at the London School of Hygiene and Tropical Medicine, has carried out research on the experiences of the families with Zika-affected children.
“Generally, the attitude towards people with disabilities in Brazil is very negative but Zika has helped raise the profile of other disabilities and we have seen a real shift in attitudes,” she said.
“In terms of stigma we have seen that much less than in other disabilities, such as cerebral palsy. There’s a very high level of knowledge and awareness of Zika. People know it wasn't the fault of the mother - it was this tiny mosquito. There are lots of positive campaigns - this is a special child for a special mother. God has chosen this mother knowing she would be able to look after a child with this disability,” said Prof Kuper.
The mothers also spoke of their problems with health professionals - doctors gave them conflicting and confusing advice, often not based on evidence.
“Health professionals often told us negative things about the development of our children,” said Ms Passos.
“Lots of people told us our children would die soon after they were born. Often this was not based on proper information - the children are now two to three years old and they are still alive. Doctors should try and see the world from our perspective,” she said.
Researchers believe there may be thousands more children affected by Zika whose problems will become more evident as they grow and start school. In fact, researchers believe that for every child with microcephaly there are a further 11 with less serious impairments such as vision and hearing problems.
While the world may have forgotten about Zika, these families are at the beginning of their journey. Gabi and Gabriel will soon start mainstream school and their mothers are worried about how they will cope and the reaction of their classmates and teachers.
But, while these children will undoubtedly face many hurdles their mothers want to stress the joy they have brought them.
“Before being victims of Zika we are families. And families with disabled children can also be happy,” said Ms Passos.
Congenital Zika syndrome | The facts
A distinct pattern of birth defects, called congenital Zika syndrome, has been found among babies whose mothers were infected with the virus while pregnant. These include:
Severe microcephaly in which the skull has partially collapsed
Curved joints such as club foot
Restricted body movements
Source: US Centers for Disease Control and Prevention
About | Zika virus
The most common symptoms of the Zika disease are fever, rash, joint pain, and conjunctivitis (red eyes), usually lasting from several days to a week, and most patients don't need hospitalisation. However the outbreak in Brazil has led to instances of Guillain-Barre syndrome and pregnant women giving birth to babies with birth defects.
How it spreads
Through mosquitoes, which mostly spread the virus during the day
Through sexual transmission
Mosquitoes also spread dengue and chikungunya viruses
There is no vaccine
How to prevent it
Avoid getting mosquito bites by using insect repellants, and wearing long-sleeved shirts and trousers
Use air conditioning and/or a window screen to keep mosquitoes outside
Sleep under a mosquito bed net
Reduce the number of mosquitoes by emptying standing water from containers such as flowerpots or bucket
Source: Centres for Disease Control and Prevention