Brazil’s Zika mothers are speaking out

I was seven months pregnant when the first reports of links between the Zika virus and birth defects were released.

At the height of Brazilian summer, health officials made regular rounds in my crowded, working-class Sao Paulo neighborhood to hunt out the Aedes aegypti mosquito responsible for the Zika, Dengue, and Chikungunya virus.

Nightly telenovelas were interrupted by public health announcements ordering people to clean out any containers of water where the mosquitos might lay their eggs, and word of neighbors hospitalized with the mosquito-born viruses was on everybody’s lips.

In addition to plug-in mosquito killers and hourly applications of repellant, I wore extra layers of clothing to cover exposed skin despite the 90 degree weather. I held my breath at every ultrasound.

The stories the mothers told me of the treatment their babies received on a daily basis because of their condition appalled me.

By the time my son was born, sturdy and wide awake, the images of Brazilian babies born with microcephaly — a birth defect where a baby’s head and brain is smaller than average — were inescapable, splattered across the headlines of every major news outlet.

International media exploded with a slew of hypotheses behind the surge in birth defects.

The WHO created an official page dispelling rumors, but blaming the sudden crisis on certain prenatal vaccines and even the very larvicide used to kill mosquito eggs seemed far easier than attempting the impossible elimination of ever-present, almost imperceptible mosquitos.

Health experts are still scrambling to explain the exact link between Zika and microcephaly, and Zika is also suspected to cause hearing loss, seizures, vision and growth impairment in babies.

Members of the "Union of Mothers of Angels" group, whose babies all have microencephaly, gather at a park in Pernambuco to prepare for a street protest. (Photo by Katherine Jinyi Li)
Members of the “Union of Mothers of Angels” group, whose babies all have microencephaly, gather at a park in Pernambuco to prepare for a street protest. (Photo by Katherine Jinyi Li)

Public doctors on the ground so far have failed to provide the everyday care necessary to treat the babies’ widening range of symptoms.

For the 7,623 Brazilian mothers whose children are under examination for microcephaly since last October, the future is unclear.

The Zika capital of Brazil

In the northeastern state of Pernambuco, 359 cases of microcephaly have been confirmed since the Health Ministry’s update last month. That’s one fourth of the cases nationwide in state with less than five percent of the population. In May, Pernambuco registered over nine thousand cases of Aedes aegypti transmitted diseases – within one week.

Last December, six mothers decided to get organized after meeting at a Rehabilitation Center in Recife, the capital of Pernambuco. They created the União Mães de Anjos (Union of Mothers of Angels), abbreviated as UMA or “one woman” in Portuguese.

The group has since grown, counting dozens of families in the capital as well as its rural outskirts. Their Facebook page provides updates on diaper and formula drives, public health meetings, and stories of mothers and babies across the state. 

Intrigued by what the Brazilian Health Ministry has called “a generation of affected children,” my son and I took the short flight across the country a few weeks ago to meet our fellow babies and mothers.

Of Brazil’s 1,434 confirmed cases of microcephaly, just 208 of the mothers tested positive for Zika.

I’ve gotten used to Brazilians exclaiming over my son — picking him up, giving uninvited parenting advice, asking upfront about his race, sniffing or rubbing his fuzzy head — all without forewarning or permission of course.

But the stories the mothers told me of the treatment their babies received on a daily basis because of their condition appalled me. Stories of people staring and asking intrusive health questions on the streets, pulling their own children away for fear of contagion, and refusing the mothers entry onto public buses because of their “demon babies” were common.

UMA members regularly gather to walk the city streets with their babies wrapped in cotton carrier slings, holding banners that read “Microcephaly is not the end” and “Our children don’t need your pity, they need your respect.”

I decided to join the UMA mothers on one of their walks. The starting location was set for the capital’s famous May 13th Park, named for the day slavery was abolished in Brazil.

UMA mothers block traffic in Recife chanting "Respect!" and holding signs that read "Boo, prejudice." (Photo by Katherine Jinyi Li)
UMA mothers block traffic in Recife chanting “Respect!” and holding signs that read “Boo, prejudice.” (Photo by Katherine Jinyi Li)

I waited with my son under the forgiving shade of a tall Brazilwood tree, slightly embarrassed at the way I was scrutinizing every passing baby for microcephaly in hopes of finding the right group of mothers.

After half an hour has passed – I never will understand how Brazilian time works – I spotted a young woman carrying a sleeping baby who resembled the infants I had seen on the news headlines. She saw me playing with my baby son and gave a shy, knowing smile — one that young mothers always seem to share regardless of culture, language, or color.

I followed her to a bench where a group of mothers were feeding their newborns and watching over a nearby cluster of young children playing in a dusty gym.

“That one doesn’t have microcephaly, does he?” someone said, looking up at me, and then to my son.

We eased into a comfortable exchange of baby names — funny how once you’re a mom no one asks you for your name anymore — months old, kilos weighed at the last check-up, if he or she sleeps the nights through.

My pudgy, wiggly 4-month-old easily outweighed even the stick-thin 10-month-old. The babies’ arms and legs seized when they gave soft, coughing cries.

Everyday frustrations for Zika mothers

As we waited for more members to show up, a discussion broke out about doctors denying monthly vaccinations for their infants. In Brazil’s public healthcare system, childhood vaccinations must be available at all neighborhood health clinics and administered for free by law.

“The neighborhood nurses refuse to vaccinate our babies, telling us to go to the rehabilitation center for special needs children,” says Germana Soares, 24, UMA’s founder and president. “And when our babies get the flu, we sit for hours in the waiting room as the doctors refuse to see our babies because they have microcephaly.”

Andrea Avelino, 33. with her son, Antonio, who has the symptoms as Zika babies though his mother never contracted the virus herself. (Photo by Katherine Jinyi Li)
Andrea Avelino, 33. with her son, Antonio, who has the symptoms as Zika babies though his mother never contracted the virus herself. (Photo by Katherine Jinyi Li)

“The group provides us with a place to share our everyday experiences, emotions, frustrations,” says Andrea Avelino, 33.

Her son, Antonio, is one year old, born with microcephaly several months before the surge in birth defects. While she never contracted the Zika virus, her son shares the same symptoms of seizures and impaired growth as those infants whose mothers were infected.

Jusikelly Da Silva, 32, one of the founding mothers of UMA, was infected with Zika in her second month of pregnancy. In a third trimester ultrasound, the doctor informed her that the fetus would be born with microcephaly.

“This was when no one even knew what Zika or microcephaly was,” says Da Silva, who stopped working as a saleswoman in order to take full-time care of her daughter, Luhandra.

Brazilian women of color living in the cramped, mosquito-ridden slums are destined to raising a generation of special needs children.

A direct link between the Zika virus and microcephaly still hasn’t been established. Of Brazil’s 1,434 confirmed cases of microcephaly, just 208 of the mothers tested positive for Zika.

According to the Center for Disease Control, 279 pregnant women in the U.S. have been infected with Zika as of their latest report in May. So far, eight cases of Zika have been reported in Washington state, all among residents who travelled to Zika alert countries.

The test for Zika is still in development stages, and many people are infected without even realizing it since the symptoms are similar to those of the common seasonal flu and often go unnoticed. Meanwhile health experts and politicians have complained that funding for Zika research remains too low.

Although the Zika virus infects across class and race, it has a disproportionate effect on Latin America’s poor, both in rural areas or urban favelas. While upper-class women can hide out inside air-conditioned high rises, Brazilian women of color living in the cramped, mosquito-ridden slums are destined to raising a generation of special needs children.

Frustrating medical failures

While many of UMA’s members are seasoned mothers, raising a baby with microcephaly means staying alert to any range of new symptoms as they appear. Because the birth defects are still being studied, pediatricians are unable to provide preventative treatment or guide the mothers in taking care of their babies. Instead, the mothers learn from each other.

“One of the mothers shared a video of her baby convulsing in our group WhatsApp chat, and I realized that my daughter was having the same seizures,” says Da Silva, who was counseled by her fellow mothers to seek out a special medicine to control the convulsions.

Many mothers, like Da Silva, had to stop working in order to take full-time care of their infants’ special needs. Most of UMA’s members are single mothers; stories of fathers abandoning their children upon discovering their birth defects are not uncommon.

Marcilo Marroquin Santiago, 27, began dating Jaqueline Vieira, 25, after the father of her son Daniel left the family. (Photo by Katherine Jinyi Li)
Marcilo Marroquin Santiago, 27, began dating Jaqueline Vieira, 25, after the father of her son Daniel left the family. (Photo by Katherine Jinyi Li)

Marcilo Marroquin Santiago, 27, is the only father present at UMA’s protest. He began dating Jaqueline Vieira, 25, after the father of her son Daniel left the family. Santiago has since become Daniel’s adoptive father, a role which means not only splitting the bills and long nights, but standing by his new family in a misogynistic society.

“The single mothers often don’t have any one to defend them when they face discrimination in the streets or the health clinics,” says Santiago. “Being her partner means fighting by their side.”

The struggle against Zika and its repercussions is still largely one fought in the dark. Despite international mobilization against the virus, no vaccinations, treatment, or therapy exist as of yet for affected mothers or their infants.

When I was home for a visit, the obstetrician suggested I consider an abortion before going back to Brazil.

The unknown can be terrifying for any expecting mother. At a prenatal checkup in the UW hospitals when I was home for a visit, the obstetrician suggested I consider an abortion before going back to Brazil, where such procedures are punishable by three years in prison. I decided to face what may come, rigorously keeping up with my prenatal care in Brazil’s universal public health system.

But there is only so much an expecting mother can do. Microcephaly is not always detectable by ultrasound; many mothers only find out about their baby’s condition after giving birth.

Meanwhile, the Zika virus remains a high-priority public concern. The debate over the right to abortion in cases of microcephaly is in full force. Brazilian health officials predict a second surge in microcephaly cases in the Southeastern region, including Sao Paulo and Rio de Janeiro, later this year.

And in underneath the headlines, a generation of new mothers strive to ensure that their children will not be left out of the conversation.

“We are protesting so that this generation of special needs children will not be rendered invisible,” says Soares, president of UMA. “Our babies are citizens, they have rights, and while they cannot speak we are their voice.”

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