While the Brazilian government has provided therapy and some financial assistance, mothers of kids afflicted by Zika say it doesn't come close to meeting the overwhelming needs of caring for children with severe development delays.
RECIFE, Brazil (AP) – As the sun dyes the early morning sky a reddish hue, Angelica Pereira carries her 1-year-old daughter out of the tiny white house sitting on a dirt road where piles of garbage float in puddles.
The driver sent to fetch her and other mothers with babies disabled by the Zika virus is two hours late, which could mean less time with the therapists who help her daughter move rigid limbs and a floppy back.
While battling these logistical challenges, Pereira also struggles to find and afford expensive drugs that families must pay for because government health plans don't cover them.
"We are always chasing something. We have to drop everything else, all our chores, our homes," said the 21-year-old. "There are so many of us with children with special needs. (The government) is forgetting about that."
Zika initially was known only to cause flu-like symptoms in some people. But a surge late last year in cases of babies born with small heads in northeast Brazil set off worldwide alarm about the virus, which was later linked to a birth defect known as microcephaly. When the connection was made, then-President Dilma Rousseff promised that affected families would get the help they needed.
While the government has provided therapy and some financial assistance, mothers such as Pereira say it doesn't come close to meeting their overwhelming needs caring for children with severe development delays.
Some families plan to sue the government to get more families with disabled children the $275 a month now currently provided to households earning less than $70 a month. They also want the government to pay for medication for babies with epilepsy, increasingly common in children whose mothers were infected with Zika during pregnancy.
"These are women in need of financial aid, who are from remote towns and are finding new problems every day with their children," said attorney Viviane Guimaraes, who is helping several families enroll in a program for the disabled.
State-run health care in Brazil is woefully underfunded, and patients often wait months for treatment. People who can afford get care through private health plans.
Jusikelly da Silva says she is desperate to get a brain scan for her 10-month-old Luhandra, who was sitting up and eating solid foods before a seizure several months ago left her virtually motionless. Silva has tried for three months to get the radiology test and an appointment with a specialist.
"It's horrible because I feel that the longer I wait for these exams, the worse it can get, and I won't be able to take care of her," said Silva.
Many mothers end up borrowing money from relatives to pay for private hospitals and doctors for specialized treatment. Silva says that isn't an option for her; just trying to buy baby formula is a struggle. She and her five children live on the $250 her husband earns each month working at a warehouse.
The health secretary for Recife state, Jailson Correia, says the city has yet to receive funds from the state or federal government for a special child development division. The plan is to create a group of pediatricians, child neurologists, social workers and physical, speech and occupational therapists who treat children with congenital Zika syndrome.
Correia says the city has offered epilepsy drugs on a case-by-case basis because they are not provided through the public health plan, but that help won't last forever.
"The city's financial resources are already strained," Correia told The Associated Press. "We need the state and federal levels to take a more active role."
Federal officials didn't respond to repeated requests for additional information about how they are responding to the crisis.
The Zika crisis comes as Latin America's largest nation weathers a two-year recession that has pushed inflation and unemployment to over 10 percent. A proposal under consideration by Congress would cap public spending, raising fears about cuts for health and education.
Treating children with neurological problems is not cheap.
Researchers exploring the health burden for governments fighting Zika conclude that each child with microcephaly in Brazil would cost about $95,000 in lifetime medical expenses, a little more than half the $180,000 it would cost in the United States.
Jorge A. Alfaro-Murillo, a researcher at the Yale School of Public Health, said the estimates are based on cases of mental disability, adding that microcephaly is a more severe condition. He said total costs, including special education and income loss, can add up to much more.
Brazil has confirmed more than 2,000 cases of microcephaly so far, and Health Minister Ricardo Barros says almost all of these babies are enrolled in rehabilitation centers to stimulate development. More than half of the children are from poor households with a monthly income of less than $70.
Ana Carla Maria Bernardo, 24, says she had to close her beauty salon when a test taken shortly after her daughter Carla Elisabethe was born showed the child had brain damage caused by a Zika infection while still in the womb. Carla's father was recently fired from his job as a doorman, but Bernardo says the government won't provide financial aid because his former salary was over minimum wage.
Meanwhile, Bernardo says it takes her nearly two hours each way on buses to get from her Recife suburb to the rehabilitation center.
"I wish the government would help us," said Bernardo. "They have the resources. It's just a matter of them taking some interest in us."