Tuesday, March 20, 2018

Long before Zika scare, a Florida family learned to live with microcephaly

INDIAN ROCKS BEACH — Eight months into her first pregnancy, an experience that seemed as close to perfect as possible, the doctors told Angie Barbaro something was wrong with her baby.

He felt awfully small, the obstetrician said.

A radiologist questioned whether the baby was still alive.

The baby was born one month later by emergency caesarean section at a Washington, D.C., hospital. He didn't look like the other newborns. His forehead sloped backward. His dark eyes seemed unusually large.

Angie and Vince Barbaro soon learned that the brain of their son, Anthony, hadn't developed properly, causing his head to be much smaller than average. The condition was called microcephaly, the doctors said.

"We had never even heard of it," Angie Barbaro recalled.

Microcephaly remained relatively obscure — until last month, when a report documented a possible link with the fast-spreading Zika virus in Brazil. Since then, images of babies with small heads have dominated the evening news. U.S. health officials are urging young women to avoid countries where Zika is present, and many women are talking frankly about the risk.

For the Barbaros, it has been surreal to see the world awaken to something they have lived with for so long. They follow each development with deep personal interest. They know firsthand how devastating microcephaly can be.

They've known for 40 years.

• • •

Anthony Barbaro wasn't supposed to live more than two weeks.

After he was born on April 29, 1975, the doctors warned his mother and father not to get too attached. Friends and family were surprised when the new parents gave their child a name.

When two weeks had come and gone — and Anthony was still alive — Angie and Vince learned he would have to undergo surgery. Anthony had also been born with a piece of his brain outside of his skull. It needed to be removed, and the hole in his skull closed.

The doctors gave Anthony a 10 percent chance of surviving the procedure.

"There was no choice," his father recalled. "We had to do it."

Anthony was released from the hospital in August — nearly four months after his birth. He was blind and unable to sit up. His parents struggled to communicate with him.

"It was hard at first," Vince recalled. "But we loved him."

Angie and Vince had two more children, each 16 months apart. Michael and Christina were healthy babies who developed normal motor skills and went on to walk and talk.

Anthony never hit those benchmarks. His mental development halted at around 6 months old.

As he got older, Angie and Vince resisted advice to institutionalize him. Instead, they enrolled him in a school for children with special needs. They put him in a stroller and took him to baseball and soccer games, and the pizzeria they owned in the Washington suburbs.

"Everywhere we went, he went," his father said.

When children and adults would look at Anthony funny — or bluntly ask what was wrong with him — his parents were ready with a gentle explanation.

"He was born this way."

• • •

Late last year, a mosquito-transmitted virus known as Zika raced across the marshy slums of northeastern Brazil. At the same time, health officials in the region noticed an alarming trend: an increase in the number of babies born with misshapen heads.

By Jan. 23, Brazil's Ministry of Health had recorded an unprecedented 4,180 "suspected cases" of microcephaly across the nation.

There is little evidence to prove Zika is responsible for the spike in microcephaly cases in Brazil. The virus — which most often causes mild, coldlike symptoms — has been found in only six of the babies with small heads, the ministry said.

Some experts say the instances of microcephaly in Brazil had been underreported before the outbreak of Zika, and believe that could explain why the numbers have shot up.

But here's why many say a link is plausible.

Doctors often have no idea what causes a baby to be born with a small head. Research shows some cases are caused by missing or abnormal chromosomes. But others are the result of viruses such as herpes, rubella and cytomegalovirus, an extremely common bug that is usually harmless.

"All of these things attack nerve cells and they damage them," said Dr. Steven Winesett, a pediatric neurologist at All Children's Hospital Johns Hopkins Medicine in St. Petersburg. "You lose some, so you don't have as many brain cells to divide. The thought is, the Zika virus probably does the same thing."

Winesett isn't convinced there's a Zika-microcephaly connection.

"It makes logical sense," he said. "But making logical sense doesn't prove it. They need to prove it."

Angie Barbaro never got a definitive answer as to what caused Anthony's condition.

"They kept saying a virus, but they couldn't pinpoint it," she said.

She never pushed the issue. She had a child to care for.

• • •

About 25,000 infants born in the United States are diagnosed with microcephaly each year, recent studies show. Some babies simply have small heads and no developmental problems.

But more often than not, a diagnosis is serious.

A 2014 study of 680 children with microcephaly in the journal Developmental Medicine & Child Neurology found 65 percent had intellectual disabilities or developmental delays, and 43 percent had seizures.

Luz-Maria Delgado, who lives in Ellenton, didn't think her son Antonio would see his third birthday. He's 10 now, and loves Mickey Mouse and trips to the zoo. But Antonio has a host of neurological problems. He can't rotate his body or swallow. He recently got a tracheostomy tube to help him breathe.

"He can verbalize, but not as much as he used to," his mother said. "It sounds more like an infant talking."

Dr. Stephanie Romero, an assistant professor of maternal-fetal medicine at the University of South Florida, said the consequences are serious enough that pregnant women should avoid traveling to countries where Zika is present and protect themselves against mosquitos at home.

"It is concerning," Romero said. "The hard part is that there's not really anything we can do. If someone is going to have these symptoms, there's nothing we can offer as treatment that can reduce the effects for their babies."

• • •

The Barbaros traded Maryland for a three-bedroom condo in Indian Rocks Beach in 2002. Angie and Vince had always dreamed of retiring to Florida. They find the Gulf of Mexico calming.

Most days look like this:

Angie and Vince wake up around 7 a.m. They wake Anthony around 8 a.m. They wash him, dress him, dry his hair, trim his moustache. Then, they carry their 38-pound son to the dining room for breakfast. Anthony always has a big appetite, his mother says. He swallows his food without problems. He is most fond of pancakes, oatmeal and cereal. He lets her know what he likes by eating especially large portions.

Anthony spends the rest of the morning relaxing in his recliner in the living room or listening to music in his bedroom. In the afternoon, his parents usually lift him into his stroller and take him for a walk along the beach.

He accompanies them to restaurants, shops, doctors appointments. They've done all of the rides at Disney World. One time, Anthony went parasailing with his father on Clearwater Beach.

"Everywhere we go, he goes," Vince said. "Same as before."

Anthony turned 40 in April. His family celebrated with spaghetti and meatballs and a vanilla cake with chocolate icing. Michael and Christina, who now live in Florida, came, too, as did other members of the family.

"A lot of people say, 'Vince, how can you do that? How do you not enjoy your life?' " the father said on a recent morning. "I do enjoy my life. I love my son."

Of late, Angie and Vince have been paying close attention to the coverage of Zika and microcephaly on television and in the newspapers. If there's a silver lining, they say, it's that people might learn a thing or two about Anthony's condition.

But mostly, they are hoping women will take the warning seriously — and waiting for the announcement that researchers have eradicated the Zika virus.

"That's what we want," Angie said. "For the babies."

Contact Kathleen McGrory at [email protected]

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