Thursday, November 23, 2017

What it's like to live with microcephaly, the birth defect linked to Zika virus


"She will not walk," a doctor told Ana Carolina Caceres's mother on the day she was born. "She will not talk and, over time, she will enter a vegetative state until she dies."

But the doctor was wrong, Caceres wrote in an essay for the BBC. The Brazilian journalist has lived with microcephaly, the often-devastating birth defect linked to the Zika virus, for 24 years. She does more than walk and talk; she attended university, she wrote a book, she keeps a blog. And although she endured breathing problems, seizures and a series of intensive medical interventions — five operations, 12 years of taking medication — she resents the idea that she, and other children like her, are "damaged."

"Microcephaly is a box of surprises," Caceres wrote. "You may suffer from serious problems or you may not."

Yet Caceres's experience is only one look at life with microcephaly. People born with the neurological condition exist on a spectrum. On one end are those for whom the characteristic unusually small head is largely a superficial concern. Then there are people like Caceres, who suffer some health problems but are otherwise able to live regular lives. About 15 percent of people with microcephaly have no intellectual disabilities associated with it.

RELATED: Here's what you need to know about Zika virus is you live in Florida

But these types of cases are the minority in the current outbreak. Officials in Brazil and other countries hit by the Zika virus say that the cases of microcephaly they're seeing are on the other, more severe end of the spectrum: cases of infants who are likely to live with profound intellectual disabilities, serious speech and motor problems and other health complications that require constant care. In Brazil, there have been at least a dozen confirmed deaths of babies born with the condition.

It's still not completely certain that Zika virus is responsible for these cases — in declaring a global public health emergency Monday, the World Health Organization said that a link is still only "strongly suspected." It's also not clear how the virus might disrupt the development of the head and brain during pregnancy, though a 2014 study of another virus tied to microcephaly found that it worked by attacking stem cells during early brain development.

But the burden of microcephaly on mothers and children meant that the WHO couldn't afford to wait, Director-General Margaret Chan said. The consequences would be too costly.

To Marilia Lima, the mother of an almost 3-month-old with microcephaly, the consequences are already apparent. The Brazilian woman told NPR in January that her doctors told her not to worry when she contracted the Zika virus during pregnancy last year.

Then, at her next prenatal checkup, the problems became clear. Lima's son Arthur was born with problems in his eyes, hips, and arm and leg bones; his head is much too small. He's fretful and he struggles to suckle. Every time Lima goes to sleep, she worries she'll wake up to find her son dead.

"We are living with this terrible thing," Lima told NPR. "It's still something that doesn't feel real to me yet. But I'm at the point where I can't think. I just have to act."

RELATED: WHO declares global emergency over Zika virus spread

Researchers in Brazil are currently scrutinizing more than 4,000 reports of potentially Zika-linked microcephaly to see how many cases can actually be tied to the virus (it may be far fewer than originally reported). Meanwhile, health officials are struggling to forestall new cases and offer support to mothers of infants who have already been born with the condition.

At Oswaldo Cruz Hospital in Recife, Brazil, which Time described as the "ground zero" for concern about the Zika outbreak, doctors say they are seeing 10 infants with microcephaly a day. Since microcephaly is a condition, rather than a single disease, the babies show a range of problems: some can't see, others have frequent tantrums or seizures. And doctors can't predict how those problems will play out later on in life.

"They ask me, 'How will my baby look in one or two years?' It's difficult because the damage to the brain is severe, but we can't make a prediction of the baby in the future," Vanessa van der Linden, a neurologist in Recife, told Time. "I tell the mother, 'We don't know, we need to follow them, and we need to help them with the problems as they appear.'"

Before the current Zika outbreak, microcephaly had been tied to mothers' malnutrition; infections like rubella, toxoplasmosis and cytomegalovirus during pregnancy; and exposure to toxins like alcohol, drugs and certain chemicals while in the womb, as well as genetics, according to the CDC .

It was also been seen in a number of children whose mothers had been pregnant on the day of the atomic bombing of Hiroshima and Nagasaki — like Yuriko Hatanaka, a woman from Hiroshima.

Though Hatanaka was 59 when she was featured in the documentary The Mushroom Club, she had the mental capacity of a 2-year-old. The girl was born six months after the bombing, her father wrote in an essay posted online, and when the grim-faced midwife handed the baby over to her parents, she said only, "Please take good care of your baby."

It took years for Yuriko to learn to crawl and walk, her father wrote. She couldn't go to school, or even use the bathroom by herself. It wasn't until she was 11 that her parents realized that their daughter's microencephaly was caused by radiation exposure.

Along with other parents whose children suffered from the birth defect, the Hatanaka's formed the "Mushroom Club" to fight for recognition. In 1967, the Japanese government officially acknowledged the link between microencephaly and radiation.

Just as there is no specific cause of microcephaly, doctors can't offer any one treatment. Though the condition is not new — there are reports from the 15th century about a French court jester who had the condition — our understanding of it is still vague. According to the New York Times, it's not usually detected until the end of the second trimester — about 24 weeks. In less severe cases, or when the mother had limited access to prenatal care, parents may not find out about their child's illness until after a baby is born.

Even when it is detected early, a diagnosis raises hard questions. There's little doctors can do about microcephaly in the womb. For parents who might consider abortion, time is limited: in most states, the procedure is no longer legal after the point of viability, around 24 or 26 weeks.

After birth, treatments are largely symptomatic: speech therapy for those with trouble speaking, medication to prevent seizures, physical therapy to help with motor and coordination problems. There is no cure, no way to restore a child's skull — and the brain inside it — to the right shape and size.

It is a sad and frightening prospect for parents hoping to have a healthy, independent child. But life with microcephaly does go on.

Erika Martinez of Texas, whose daughter Erilyn turned 7 on Saturday, spoke to the BBC about raising a child with the condition.

"She is developmentally delayed . . . she's mentally like a 3-year-old," Martinez said. "But she's definitely amazing, she's walking and running, she's learning to speak and to do more things independently as in feeding herself and potty training, things like that."

Martinez said she can imagine how scared mothers who have been affected by the Zika-linked microcephaly must feel about the diagnosis. She was 15 when her daughter was born, and she had never heard of the condition before her doctor told her about it.

"They probably think it's the end of the world," she said. ". . . But they're not alone."

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