Ana Carolina Caceres

A 24 year-old Brazilian woman who was born with microcephaly, a birth defect linked to the Zika virus, says better care for those afflicted with the condition is what is needed, not abortion.

Ana Carolina Caceres was born 24 years ago with microcephaly, a condition in which babies are born with smaller than normal heads caused by incomplete brain development. As a result, her parents were told their daughter would never walk or talk and that she would eventually enter a vegetative state and remain in it until she died.

But they were wrong.

“I grew up, went to school, went to university. Today I am a journalist and I write a blog,” Caceres recently told the BBC. “I chose journalism to give a voice to people like me, who do not feel represented. I wanted to be a spokesperson for microcephaly and, as a final course project, I wrote a book about my life and the lives of others with this syndrome.”

She adds: “I can say that today I am a fulfilled, happy woman.”

So why are world leaders causing panic throughout the world, asking women not to get pregnant and calling for increased access to abortion due to the spread of the Zika virus, which may be linked to an increase in the number of children born with microcephaly?

Caceres says she’s offended by these reactions. In fact, when the Brazilian health minister said that Brazil would have a “damaged generation” because of microcephaly, Caceres said if she could speak to him, she would say, “What is damaged is your statement, sir.”

This is because in spite of all the reporting to the contrary, “microcephaly is a box of surprises,” Caceres says. “You may suffer from serious problems or you may not. So I believe that those who have abortions are not giving their children a chance to succeed.”

She survived, as do many others with the condition.

“Our mothers did not abort. That is why we exist,” she says.

But it wasn’t always an easy life. As The Guardian reports, she had her first major surgery at the age of nine days and suffered two cardiac arrests during the procedure.

She would have five more operations in the following nine years resulting in the removal of part of her skull to allow her brain to grow. But it also meant that she had to be constantly on the alert against banging her head as she grew up. She also suffered from seizures but eventually outgrew them.

In spite of it all, Caceres remembers her childhood as a happy time playing in the streets with the kids in her neighborhood. She went to school like everyone else her age and participated in all classes except physical education, admitting that she has yet to learn how to ride a bike.

The medical bills were tough. Her dad, who works as a lab technician, and her mother, who had to quit her job as a nursing assistant in order to take care of Ana, struggled to keep up with the bills.

“The whole family got together – uncles, aunts and others. Everyone gave what they could to cover the costs,” Caceres says.

Somehow, they managed, and she has a bright future ahead of her.

But this doesn’t mean everyone with microcephaly will have such a good outcome.

“Microcephaly is like a fever,” said Dr. Alexandra Prufer, an associate professor of child neurology at the federal university of Rio de Janeiro. “It’s a range of problems that can occur from the mildest symptoms to the most severe developmental disorders.”

No two cases are alike, but Caceres is determined to bring hope into the increasingly desperate narrative surrounding the Zika virus and its as-yet uncomfirmed links to microcephaly. In addition to writing a book about her experience with the condition, entitled Selfie, she has given at least 70 interviews to newspapers, TV and radio stations over the last few weeks. She has also spoken out in opposition to calls to overturn Brazil’s abortion restrictions.

“ . . . [W]hen I read that activists in Brazil were urging the Supreme Court to allow abortion in cases of microcephaly, I felt offended and attacked,” Caceres said.

“I believe that abortion is a short-sighted attempt to tackle the problem. The most important thing is access to treatment: counselling for parents and older sufferers, and physiotherapy and neurological treatment for those born with microcephaly.”

Fully aware that not everyone will have as good an outcome as she has, she is recommending that mothers and pregnant women remain calm.

“If there are still parents who choose to abort, I cannot say anything. I think the choice is theirs,” Caceres says. “But they need to make that decision knowing all the facts.”

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