When Germana Soares was three months pregnant, she went to see her doctor.
She was worried, as any expectant mother would be, because she had an itchy rash across her body. But since itchiness was her only symptom, her doctor simply treated her for allergies and sent her home with some medication.
It seemed to work.
Four days later, her rash had cleared up, and she stopped worrying. The rest of her pregnancy progressed relatively normally.
But when her son was born, the doctor noticed something wasn’t quite right.
Her son’s head was slightly smaller than it should be, and it was a little asymmetrical, with the left side somewhat smaller than the right. Remembering her rash from months prior, her doctor ordered a series of tests.
This condition not only causes a baby’s head to be smaller than normal, but it can also cause a number of other lifelong health problems, including intellectual and developmental disabilities. And in Soares’ case, it was likely caused by a Zika virus infection (transmitted by an Aedes aegypti mosquito) while she was pregnant.
Microcephaly is usually considered a relatively rare neurological condition, but in Brazil at that time — especially in the northeastern state of Pernambuco where Soares lives — it wasn’t. In fact, her state was at the center of a Zika pandemic that hit South America between 2015 and 2016, and it saw a huge spike in the number of microcephaly cases as a result.
874 cases of microcephaly — more than any other region in the country.
They were scared of prejudice and discrimination, she says through a translator. They were so scared that they decided they would have to hide their son’s illness from the world. They thought it was the only way they could protect him from the kids who might pick on him, the adults who might make assumptions about him, and the society that might exclude him simply because he was born different.
But when Soares took her son to his one-month doctor appointment, something wonderful happened: She met Gleise Kelly, another mother of a baby with microcephaly, and they became friends.
They talked about their babies, how they both felt alone against the world, and how they felt misunderstood. Just talking to another person who was going through a similar experience helped them both feel so much better.
And then, over the next few months as they went to the doctor, they started meeting other moms too. They all exchanged phone numbers to continue their discussions outside the waiting room. They set up a chat group on a phone app called WhatsApp.
But Soares and Kelly wanted to go one step further, so they created the Facebook group União Mães de Anjos — the Union of Mothers of Angels.
The Facebook group started with just eight mothers, Soares says, but within two months, they had 200. Today, about 400 mothers across Pernambuco have joined.
The page became a way to share stories and to get advice on how to cope with the disease and with prejudice. It became a place to ask questions, a place to share resources, and an emotional support group. But slowly, the group also transformed into a way for them to make themselves known to the rest of the community — a community they felt wasn’t accepting of them or their children.
“I won’t sit around,” Soares says through the translator. “I am going to do everything I can to fight for my child’s future and I am not going to just wait for people to include him in society.” And the entire group of mothers feels the same way.
União Mães de Anjos became their way to raise awareness about microcephaly and to fight for inclusion on behalf of their children. It gave them a voice.
And it worked. Their group started getting attention in the local press, and the mayor of Pernambuco reached out to them to organize a meeting so that he could better understand what they were going through and what the government could do to help them.
The meeting has now turned into a weekly phone call or in-person meeting, allowing the mothers to advocate on behalf of their children. And Soares says she has begun to see results. For example, there are now more neurologists working in the state to support them.
They also receive donations of diapers, food, and clothes, and the group distributes those across the state.
Fighting prejudice doesn’t happen overnight, Soares says. Instead, you have to work at fighting it from the ground up — starting inside homes and schools — so that change can happen naturally.
“People should respect everyone’s children. They are human beings. They did not choose to be born this way — they are all victims of an illness that was unknown at the time,” she says. “Everyone thinks things will never happen to them — only to others. That is, until it actually does [happen to you].”
Soares’ son is now 18 months old, and while he shows some motor skill developmental delays due to his microcephaly, he is showing improvement every day thanks to some early stimulation and therapy.
Microcephaly exists and it isn’t going away just because people are uncomfortable with it, Soares says. The best thing they can do is raise awareness of it, help those that need it, and fight prejudice so that every child gets the respect and acceptance they deserve.