Make us your home page
Instagram

Today’s top headlines delivered to you daily.

(View our Privacy Policy)

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]

Long before Zika scare, a Florida family learned to live with microcephaly 02/12/16 [Last modified: Sunday, February 14, 2016 9:21pm]
Photo reprints | Article reprints

© 2017 Tampa Bay Times

    

Join the discussion: Click to view comments, add yours

Loading...
  1. College basketball scandal dips into Tampa Bay

    Preps

    Tuesday's national college basketball scandal has recruiting ties to Tampa Bay.

    In this March 15, 2012, file photo, San Diego State assistant coach Tony Bland, left, talks during NCAA college basketball practice in Columbus, Ohio. Bland was identified in court papers, and is among 10 people facing federal charges in Manhattan federal court, Tuesday in a wide probe of fraud and corruption in the NCAA, authorities said. [AP Photo/Tony Dejak, File]
  2. Datz to open in St. Petersburg, join the James Museum of Western and Wildlife Art

    Food & Dining

    Now Datz news.

    Get it? Tuesday, Datz, the longtime line-out-the-door, oft-Instagrammed and -Yelped Tampa stalwart known for shock-and-awe sandwiches and oh-so-much bacon, announced it is coming to St. Petersburg.

    Lunch guest eat at Datz Deli at 2616 South MacDill Ave. in Tampa. Times files.
  3. Republican leader McConnell pulls the plug on latest Obamacare repeal effort

    WASHINGTON --- Sen. Mitch McConnell on Tuesday officially pulled the plug on the latest plan to repeal the health care law, telling senators they will not vote on the measure and effectively admitting defeat in the last-gasp drive to fulfill a core promise of President Donald Trump and Republican lawmakers.

    Senate Majority Leader Mitch McConnell of Ky. listens during a news conference on Capitol Hill in Washington, Tuesday, Feb. 7, 2017, after the Senate confirmed Betsy DeVos as education secretary. DeVos was approved by the narrowest of margins, with Vice President Mike Pence breaking a 50-50 tie in a historic vote. (AP Photo/J. Scott Applewhite) DCSA119
  4. Lightning's Brayden Point could be perfect fit alongside Steven Stamkos, Nikita Kucherov

    Lightning Strikes

    SUNRISE — Brayden Point ended last season as the Lightning's No. 1 center, thrust into the role as a rookie due to injuries.

    Lightning center Brayden Point (21) advances the puck through the neutral zone during Friday's preseason game against the Nashville Predators. [DOUGLAS R. CLIFFORD  |  Times]
  5. For starters: Rays at Yankees, with Blake Snell starting, Wilson Ramos cashing in

    Blogs

    The Rays open their final road series of the season tonight at Yankee Stadium, which is also where they played their first of the season.

    LHP Blake Snell will be on the mound for the Rays, looking to continue his successful late-season run, in which he is 4-0, 2,57 over his last eight starts.

    Tonight marks Wilson Ramos' 55th start of the season.