, RIO DE JANEIRO, Brazil, Jan 12 – Brazil’s 2015-2016 zika scare has largely dropped out of the headlines, but one year on, thousands of parents are struggling as they learn to care for brain-damaged babies.
Brenda Pereira, 23, weeps in dismay as she leaves the doctor’s room with her four-month-old daughter Maria Fernanda in her arms.
- Brazil has confirmed 2,289 cases of babies born with microcephaly in the epidemic that started in 2015.
- Authorities say there are 3,144 other suspected cases pending confirmation.
- Since most of those babies are no more than a year old, Brazilian doctors' experience of treating them is limited.
The pediatrician has just told her that Maria Fernanda’s case of microcephaly is worse than previously thought.
The zika disease, spread by mosquito bites, causes babies to be born with abnormally small heads.
“I hope she will be able to speak. That she will be as normal as possible,” says Pereira.
“That is why I bring her to the doctor: to try to make her fit into society. Because people do not see our children as people.”
Brazil has confirmed 2,289 cases of babies born with microcephaly in the epidemic that started in 2015. Authorities say there are 3,144 other suspected cases pending confirmation.
Since most of those babies are no more than a year old, Brazilian doctors’ experience of treating them is limited.
In cases like Maria Fernanda’s, the doctors do not have answers to all the parents’ questions.
“If the doctors do not know, then how can I?” she says. “I have learned to live with her because I must.”
No disability payments
Pereira, from Rocinha, Rio’s biggest slum, only learned her baby had the condition after Maria Fernanda was born.
The baby’s father abandoned her, she says, because he did not want “a sick daughter.”
Pereira had to leave her job to care for the baby 24 hours a day. She moved in with her own mother, leaving her other daughter, aged six, with relatives.
She struggles to pay for the physiotherapy sessions Maria Fernanda needs to stimulate her.
Maria Fernanda does not qualify to receive child disability welfare payments from the state, because Pereira’s own mother is above the $70-a-month earnings threshold. She works selling bags of ice on Ipanema beach.
“I have had to put my whole life on hold and live for the baby. But as far as the government is concerned, you have to be extremely poor in order to receive a subsidy,” Brenda Pereira says.
“Brazil is not equipped to deal with such a major illness.”
‘Where is the government?
In Rio de Janeiro, last year’s Olympic host city, the State Brain Institute was overwhelmed by microcephaly cases and had to set up a special walk-in clinic.
For Brenda and 400 other families from the surrounding state, it provides scans and other costly tests for free.
But back at home, life looking after a child with microcephaly is hard.
Alzira Meneses has to travel 155 kilometers (nearly 100 miles) to the Rio clinic with her six-month-old son Arthur.
She says there is only child brain specialist in her home town Cabo Frio.
Meneses, 35, has failed to get Arthur an appointment due to strikes by healthcare workers against spending cuts in the economic crisis.
She is unemployed and receives no public welfare subsidies.
“Where is the government? Where is it?” she asks angrily.
Praying for strength
The Rio clinic also provides counseling sessions for families.
The coordinator of the clinic, Fernanda Fialho, says psychological support for the families is needed almost as much as research into the illness.
“It is very important because there is no treatment for microcephaly. What these babies need is someone who is psychologically sound to look after them.”
In the nearby waiting room, Arthur’s father plays with him.
Unlike some babies with microcephaly, Arthur is able to breastfeed and does not need to be fed through a tube. But he is starting to have sight problems.
“We pray a lot. We ask God to give us the strength to accept it,” Meneses says.
“We do not know what might happen. There is no use in asking yourself what tomorrow brings.”