International
Ueslei Marcelino / Reuters
RECIFE, Brazil — For almost all of her four months of life so far, baby Maria has only ever known a shelter for disabled children in the northeast of Brazil.
Maria was born with microcephaly — an abnormally small head. Her mother handed her to the state authorities when she was just three days old.
“I think when mothers see their babies with microcephaly, they must think, ‘Now what? What can I do? What will it be like?’ And maybe this makes her give up the baby,” said Delza Ribeiro, who was an employee at the children’s home in Recife that received Maria until last Thursday. Maria’s identity and the name of the home was withheld to protect the baby’s privacy.
Maria’s mother is just one of an increasing number of women whose babies have been born with the birth defect that stops the brain from properly developing.
The unprecedented increase has been linked to the spread of Zika virus, carried by the same mosquito as dengue fever and chikungunya. So far, more than 4,000 suspected cases of microcephaly have been reported, with 270 confirmed. In 2014, the total number of cases was 150.
After Zika was first identified in Brazil last May, it has spread to 22 other countries, causing alarm among health authorities worldwide. And the hardest-hit victims have been women and their children.
“We don’t have much of [Maria’s] story,” Ribeiro added. “We haven’t managed to talk to the mother.
“She just gave the child to the family courts and said, ‘I can’t raise this child’. We asked if she wanted to visit the child and she said ‘no.’
Ribeiro said poor women are disproportionately affected, as they are more likely to live in places that attract mosquitos and contract Zika, and more likely to be forced to abandon a baby with microcephaly due to the cost of raising a disabled child.
“I think we’re going to be working a lot with this. It’s mainly affecting low-income families,” she said.
In a country where sex education is haphazard, teenage pregnancy rates are high and family planning options are restricted, this growing global public health emergency has inadvertently become a question of women’s reproductive rights.
Governments in several countries, including Brazil, have recommended couples delay pregnancy.
Yet critics and campaigners have accused the authorities of neglecting and letting down women.
Debora Diniz, an anthropologist at the bioethics institute Anis, is taking a package of proposals to Brazil’s Supreme Court to try to protect those whose children have microcephaly as well as women who want to give up a baby or even abort a pregnancy.
“These three groups of women are living with the damage caused by a systematic neglect of the Brazilian state, which has not been able to eliminate a mosquito,” Diniz said.
“We want access to contraceptive methods, early diagnosis [of Zika] and the possibility of choosing abortion, if that is her choice. No one is talking about only legalizing abortion.”
Eleonora Menicucci, the special secretary for women’s policies, said: "The social movement and the feminist movement are doing their part to ensure women's rights and that the decision of whether or not to have children should always be the woman’s.”
“If the Supreme Court accepts this action, it will be very important for women, who are already having illegal abortions and endangering their lives,” she added.
Among the difficulties for pregnant women is the lack of accurate testing for Zika as well as late diagnosis of microcephaly, which can only be identified beginning around the seventh month of pregnancy, and sometimes not until after the baby is born.
Hilda Venancio Silva, 38, only found out her son had microcephaly as she went into labor.
“It dropped like a bomb on top of us,” the mother-of-three said, from her home in Recife. “My husband and I were totally desperate.
“But, thank God, we are overcoming it with much love, much affection, much unity, which is what we have to offer to Matheus. It wasn’t planned but God wanted to send him.”
She said she would have never opted for an abortion even if it were available.
“There are two paths to follow: either the path of assuming responsibility or the easy path,” she said, adding: “Abortion, for the government, is the easier way.”
Yet abortion remains illegal in Brazil with three exceptions: where there is risk to the mother’s life, in cases of rape or when the baby has anencephaly, in which the skull does not form and the chance of survival is low.
Since the outbreak of Zika, there have been concerns that mothers have turned to illegal terminations when they fear they have the virus.
Pro-choice campaigners and doctors said that while some women were able to afford a private doctor to carry out a clandestine termination, those who could not were at greater risk of a botched abortion.
"Those who can afford to will be able to find a clinic. Those who don’t may run the risk of submitting to an alternative intervention that could put the woman at risk of infection or even death,” said Dr Maria Luiza Bezerra Menezes, the president of the Society of Obstetricians and Gynaecologists in Pernambuco state.
According to the Study Group on Abortion (GEA), unsafe abortions are the fifth leading cause of maternal mortality in Brazil, with 200,000 women hospitalized in 2013 as a result of complications from terminations.
Diniz will take her proposals, including the right to abortion in cases of microcephaly, to court in March.
“We call it a ‘Women’s Rights Action’,” she said. “Why do we call it ‘Women's Rights’ if eliminating the mosquito concerns us all? Because the mosquito has metamorphosed into a scenario of public health tragedy, whose main victims are women and their children.”
On Friday, the Brazilian government announced it would extend its disability income support to mothers of children with microcephaly.
But Diniz dismissed this as an empty gesture: “The government is playing with the ignorance that people have about Brazilian public policies.
“We already have a social security benefit policy that is called Continuous Protection Benefit (BPC), in which all people with severe disabilities can have access to a minimum wage. The government is not giving anything new.”
Those who work with children given up for adoption said the financial burden of a disabled child was often the main reason parents put them into state care.
Meanwhile, sex education in Brazilian schools has been found to be piecemeal and inadequate, taught in an improvised manner with government leaders disputing which aspects to prioritize.
A government health report found the rate of teenage pregnancies has remained constant since 2000, with around one per cent, or 30,000 of mothers aged 10 to 15.
While the report also indicated more women were having children in their 30s, a trend for teenage pregnancies remained prevalent in the northeast, where more than one in five mothers were aged 20 or under.
“To be honest, I never had any education about it,” Venancio said.
While she used birth control pills — which have been subsidized by the government since 2007 — until she wanted to have children, she said she had to seek out information on family planning herself.
“In the past, it was a taboo to talk about it,” she added. “I think it's important. Today's young people have children early, either through lack of information, or through stupidity.
“But if you have greater clarification, who is to say it would not better?”
To Venancio, three-month-old Matheus is a “treasure,” regardless of his microcephaly.
“We just have to learn with him, more each day,” she said. “As the saying goes, 'there’s not special children, there are special parents.' And we were chosen to care for him.”
But for her husband, his son’s impairment represents a more profound injury.
“My family was disgraced by the government and its inefficiency in fighting a disease,” said Jober Alves Silva.
“My family was amputated by the government, an incompetent government. My family is over.”
In the meantime, women must await the decision of the Supreme Court.
Diniz said she was worried about how long this might take and the impact this would have on the epidemic, given the Supreme Court deliberated for eight years over whether to allow women the right to abort babies with anencephaly.
“It is a discussion about the neglect of the state, damage caused by the state to women and how we can repair a historical damage taking care with how women think is the best way to raise a family, with exercising maternity care for their reproduction,” she said.
And as for Maria, there is now a court process under way to try to find an adoptive family for the little girl, but her disability means she is less likely to find a new home.
“We have a serious problem in Brazil with talking about disability,” Ribeiro added, who has left the children’s home to work for Criança Feliz, a project that works with vulnerable young people on the streets of Recife.
“We need campaigns to show the happiness these children can bring, because otherwise, they will stay in the shelter.”
Error
Sorry, your comment was not saved due to a technical problem. Please try again later or using a different browser.