RECIFE, Brazil — Shortly after Leonardo da Silva was born six months ago with the condition known as microcephaly, the baby’s father gave the mother an ultimatum. “It’s me – or the demon,” he told her.
“The demon is you,” Soraya da Silva, 33, replied. She has not seen the father since, she says. Neither has she received any help from the government, which has struggled to get a grip on the public health emergency that surrounds a Zika virus epidemic.
Authorities in Brazil are investigating more than 4,000 suspected microcephaly cases that it says could be linked to Zika. And Recife is a hotbed, with more cases in and near the poor northeastern city than anywhere else in the country.
Yet mothers in Recife are battling poverty and prejudice in caring for children with this birth defect, which leaves babies with abnormally small heads and can cause learning, speech, vision and motor problems.
With no government benefits to help care for Leonardo, da Silva relies on other mothers, neighbors and donations – signs that Brazilian society is reacting more quickly than its leaders.
Da Silva, estranged from her alcoholic father, said she was lucky to inherit her little ramshackle house from her late mother. But she desperately needs formula, diapers and cleaning products for her son. And she feels acute isolation.
“Alone,” the overwhelmed mother said. “Me, my son and God.”
‘Everyone is trying to organize’
On a recent morning, da Silva and other mothers changed diapers, munched cookies and chatted after therapy sessions for microcephalic babies at the Altino Ventura Foundation.
By the time da Silva and her son returned home, a power outage had hit her street. Dishes were piled up in the sink -she had not paid her bills, so the water supply had been cut off. Da Silva manages with the help of a neighbor, who fills up a container for her, and she saves her baby’s bathwater to be reused.
She has no credit on her prepaid cellphone and no idea where the bus fare for the next day’s appointments will come from because she had not succeeded in registering for free public transport, as some mothers have done.
Da Silva was infected with the Zika virus early in her pregnancy. The virus has increasingly been blamed for the sharp surge in microcephaly cases, though congenital diseases such as rubella, genetic factors and even alcohol abuse during pregnancy can cause the condition.
A local nongovernment group is helping her navigate the torturous bureaucracy to get benefits. Like her, many mothers of microcephalic babies have been abandoned by their partners. Many have turned to support networks on the WhatsApp cellphone chat service, widely used in Brazil, or reached out to Facebook pages that link needy moms with donors.
“Everyone is trying to organize, including the mothers themselves,” said Angela Rocha, a pediatrician and infectious-diseases specialist at Recife’s Oswaldo Cruz Hospital.
‘We are not alone’
Last month, President Dilma Rousseff mobilized 220,000 troops to give out leaflets and help householders eliminate breeding grounds of the mosquito that spreads Zika. Her government is spending an extra $47 million over the next year on setting up additional microcephaly rehabilitation centers.
But Rousseff is mired in a political crisis, a deepening recession and a vast corruption investigation. And activists say her government is more focused on the mosquito than those affected by microcephaly.
“The first thing they should do is make the disabled benefit less bureaucratic,” said Viviane Lima, 35, a receptionist in Manaus with two teenage microcephalic daughters. “The government is doing nothing.”
Lima was inspired to set up a nationwide WhatsApp group and a Facebook page for mothers of microcephalic babies by the response to a television interview she and daughters Ana Victoria, 16, and Maria Louisa, 14, gave. Their microcephaly was caused by genetic factors.
Recife mother Rosana da Silva (no relation to Soraya da Silva), 26, whose third daughter was born five months ago with microcephaly, used Lima’s network to meet other mothers in her area. Her daughter’s microcephaly has been linked to toxoplasmosis, she said.
She has just registered on a Facebook page called Heart and Mind that connects mothers like her to potential donors. The effort is co-founded by Sao Paulo journalist Maria Clara Vieira, 24. “People have been touched by what is happening,” Vieira said.
At her home in a low-income Recife community, Jaqueline Vieira (no relation to the journalist), 25, whose 4-month-old son has microcephaly, opened a cupboard full of powdered milk and diapers. “All of this was donated after Heart and Mind,” she said.
She caught Zika-like symptoms two months into her pregnancy and broke up with Daniel’s father after the baby was born. The single mother, who also has another son, stressed the importance of support networks such as the Union of Mothers of Angels, a WhatsApp group.
“We are not alone,” she said.
‘I am a better person’
Parents of older microcephalic children said Brazil needs to overcome a deep-rooted prejudice toward people with disabilities, which many in this highly religious country traditionally viewed as diabolical.
“Brazilian society is very prejudiced and inhuman,” said Valéria Santana, 47, a coordinator at Recife’s Center for the Rehabilitation and Valorization of the Child, a nongovernment resource for disabled children. The center is helping Soraya da Silva with her benefits claim and has just started physiotherapy classes for eight microcephalic babies.
Santana’s 28-year-old son, Thiago, was diagnosed with microcephaly at age 4. After Santana broke up with the boy’s father two years later, he wrote Thiago out of his life.
Thiago can’t speak and needs permanent care. Yet he wore a huge smile and kissed the hand of everyone he encountered at the center on a recent afternoon.
“I am a better person than I was because of him,” his mother said.
But caring for babies with microcephaly has taken a heavy toll on some families in Recife.
Hotel receptionist Daniele Santos, 29, had Zika-like symptoms of fever and a rash when four months pregnant with her son, Juan Pedro. Microcephaly was diagnosed at seven months. She and the baby’s father, Waldir da Silva, 39, were terrified when they saw how tiny the baby’s head was at birth three months ago.
Juan Pedro cried incessantly. Waldir, an unemployed bus driver, struggled. “It was more difficult for him than it was for me. I started to look for information, to see what I could do, but not him. He didn’t really believe it,” Santos said.
The couple split a month later. In recent weeks, Waldir has been trying to get close to son and mother, attending hospital appointments. “I am still not sure,” Santos said.
Waldir said he would like to help more. “How can I do this? A job,” he said.
Santos’s maternity leave expires April 1. Her $232 monthly salary, the legal minimum, makes her ineligible for benefits. She depends on the WhatsApp group and Facebook donations.
“As love is the basis for everything, it strengthens me to face the future,” she said, tenderly cradling her little boy. “Because I love him so much.”