Imagine two twin sisters, both pregnant at exactly the same time in 2015. For one, everything is going normally. For the other, Ruty Freires, a common mosquito bite will turn her life upside down. At the time, she didn’t even feel sick. However, the Zika virus silently infiltrated her body and reached her fetus. Ten years later, the outcome is grim: her daughter Tamara lives with severe complications, like thousands of other children of this « Zika generation. »
You may remember the panic in February 2016. The World Health Organization (WHO) declared an international emergency. On the eve of the Rio Olympics, athletes even decided not to come, frightened by this virus transmitted by the tiger mosquito, which caused babies to be born with abnormally small heads. The cameras may have long since left, but the tragedy continues. In Brazil, the epicenter of the crisis, 4,000 children were born with microcephaly between 2015 and 2016. And for Ruty, every day is a constant battle.
Investigation into a neuron killer
credit: saviezvousque.net (AI image) How could a virus cause such a catastrophe? At first, it was completely unclear. At the end of 2015, in northeastern Brazil, doctors were seeing up to 12 cases of microcephaly at a time in the same hospital. This was unprecedented. Dr. Celina Turchi, an epidemiologist, still remembers the fear in the eyes of mothers and doctors. Everything was suspected: vaccines, chemicals… But Dr. Ricardo Ximenes confirms that no link has ever been proven with these hypotheses. The real culprit was Zika. The problem is that this virus is sneaky. Laurent Chatel-Chaix, a virologist at INRS, explains that 80% of people have no symptoms. Ruty had neither nausea nor fever. However, the virus crosses the placenta and attacks the fetus’s brain directly. It’s frightening: it invades the neural stem cells and replicates until they burst. « It’s like setting fire to the brain, » summarizes the researcher. The result? Development stops, and the brain remains small and scarred. It took the observations of Dr. Mabel Carabali, then in Colombia, to make the connection: the mothers of affected babies often had rashes and conjunctivitis, distinctive signs of Zika compared to dengue fever.
Surviving against the odds
credit: saviezvousque.net (AI image)
Doctors told Ruty that Tamara would not live past the age of three. Today, she is ten. A victory? Yes, but at what cost. The list of symptoms of congenital Zika syndrome is staggering: epilepsy, vision and hearing problems, muscle atrophy that worsens over time. Tamara cannot walk or talk. Like one in six affected children, she suffers from dysphagia: she cannot swallow solid food and must be fed through a tube directly into her stomach. And that’s not all. The virus leaves its mark even without visible microcephaly. Researchers are realizing that children infected later, in the third trimester, often develop speech delays or motor disorders. This is a phenomenon that we are only beginning to understand, much like the neurological risks now being discovered in babies born to mothers who had COVID-19. For Ruty, who lives in social housing in Maceio, every day is a logistical challenge. Sometimes there is no drinking water, the wheelchair cannot fit through the doors, and her daughter often vomits her meals. Fortunately, female solidarity takes over. The fathers have often deserted after the diagnosis. So, the neighbors help each other out.
Strength in unity
credit: saviezvousque.net (AI image) Faced with isolation, the mothers created their own lifeline: the Association des Anges (Association of Angels). Founded by Alessandra Hora, herself the grandmother of an affected child, this organization is vital for nearly 300 families. It is here that Ruty finds respite, physical therapy for Tamara, and above all, a sympathetic ear. Because outside, life is hard. Uber drivers sometimes refuse to stop when they see the wheelchair, and public transportation is an obstacle course. Despite the laughter that echoes through the association’s premises, death is always lurking. Since 2015, around 300 of these children have died in Brazil, including around 50 within the association itself. « The epidemic is over, but the children are still here, » Dr. Ximenes reminds us. While herd immunity has caused cases to drop in Brazil, the risk of a new outbreak exists as long as the virus continues to circulate in some 60 countries. For these courageous mothers, the fight for their children’s dignity has only just begun.
