Another night in the hospital: the unrelenting struggle of raising Brazil’s Zika babies

RECIFE, BRAZIL — Baby Duda sat in bed, a pink barrette in her hair. She was ready to go home after a month in the hospital — when she began gasping for breath. Nurses rushed to her side with emergency oxygen. Her sister, out in the hallway, pressed her face against the window, watching yet another medical setback punctuated by high-pitched wails.

Born last November with a head just 10 inches in circumference, Duda is one of Brazil’s Zika babies. She was one of the first children at Recife’s Oswaldo Cruz University Hospital to be diagnosed with Zika-related microcephaly — a birth defect that leaves newborns with small heads and malformed brains and frequently causes severe developmental problems. The hospital soon was identifying as many as 20 suspected microcephaly cases per day in children whose mothers had been infected with Zika during their pregnancies, as Recife became the epicenter of a devastating epidemic of the mosquito-borne virus.

Now, as the pace of new cases has slowed, Brazil is entering a new phase of the epidemic, in which families and doctors are discovering the long-term medical complications Duda and the 1,748 other infants like her nationwide will confront.

Doctors have coined a new name for their disease, “congenital Zika syndrome” — a sign of how much they have to learn. Besides microcephaly, experts say some of the affected children have joint malformation or brain malformation, though their heads are normal-sized. So much is unknown: How will these babies grow? Will they ever be able to talk or walk? How long will they live?

Medical experts around northeast Brazil are launching years-long research projects to track these babies and answer those questions. Meanwhile, the immense cost of raising the babies is straining poor families and the government that supports them. The epidemic is overwhelming hospitals and clinics, which struggle to find enough doctors, therapists — and even basic supplies, such as infant feeding tubes — to meet the need.

Duda — born to parents who were eking out a living collecting recyclables — is one of nearly 200 babies with Zika birth defects being treated at Oswaldo Cruz, a public hospital with simple cement buildings in a sprawling urban campus in Recife. Families, most of them poor, travel hours in public vans to seek therapy. The babies’ disabilities range widely, depending in part on how early in the pregnancy their mothers got Zika. Many are missing key developmental milestones, such as sitting up, smiling, or reaching for a toy. They have seizures and struggle to see, hear, and eat.

Many are returning to the hospital repeatedly — most commonly for respiratory problems, said Dr. Maria Angela Rocha, director of the hospital’s department of pediatric infectious diseases. Their brains have trouble with orchestrating the simple process of swallowing. So food gets into their lungs, causing infections, she said.

That’s what landed Duda in the hospital for most of July. Duda, whose full name is Maria Eduarda Pereira, had lots of company: Her aunt, Miriam Pereira, who adopted Duda after her mother rejected her, slept on a cot in the room, alongside Duda’s sister and sister-in-law.

Caring for Duda has been a full-time job, Pereira said. Duda takes medicine for seizures, wears hearing aids, and eats expensive formula because she’s lactose intolerant. Like many microcephaly babies, she wears glasses, which aim to keep her interested in the world around her so she doesn’t close her eyes all day. Duda has been hospitalized seven times in just eight months.

“My life stopped to take care of the baby,” Pereira said. The 41-year-old, who used to clean houses, now devotes herself to taking care of Duda, along with Duda’s 18-year-old sister-in-law, Cleane. The family relies on a $281-a-month government subsidy to support Duda — as well as a monthly check from a judge who oversaw Duda’s adoption proceedings and took an interest in the baby’s life.

Pereira recovered from leukemia just in time to raise Duda. She’s clear about her mission: “It was God that sent me” to take care of the child.

Pereira said Duda is making progress, and can almost sit by herself. But seizures continue to set her back.

“Every time she seizes, she forgets,” Pereira said.

Before Duda could go home last month, the medical team had to insert a feeding tube into her gastrointestinal tract, usually a routine procedure.

But an X-ray showed the tube had been misplaced — twice — and when staff tried to reinsert the tube, Duda wailed. It wouldn’t go in the right place. When they pulled the tube all the way out, Duda had trouble breathing — sending a nurse racing down the hall in clacking high heels to fetch oxygen equipment.

Duda’s family waited in the hallway during the tense episode. Her aunt, however, couldn’t bear to watch.

Dr. Regina Coeli emerged with an update: The hospital needed a longer, thinner feeding tube, but they didn’t have any left. She wrote Pereira a prescription and asked her to go out and buy one.

But where? Coeli started to call around. None of the public hospitals had one. She finally found someone with 10 feeding tubes, and ordered all of them. Pereira wouldn’t have to leave the hospital, after all, to buy a basic piece of medical equipment for her child.

Coeli said that was the first time the hospital ran out of feeding tubes. But the lack of resources to treat microcephaly babies around the state of Pernambuco, where Recife sits, isn’t new. Babies with microcephaly need intensive therapy for their vision, hearing, speech, swallowing, and mobility. Oswaldo Cruz doesn’t have enough therapists to treat all of the babies there, so families often shuttle their kids around to multiple clinics.

“Not all of the centers have all of the services they need,” said Luciana Albuquerque, a deputy health secretary in Pernambuco, which has 371 confirmed cases of Zika-related microcephaly. But she said the state has invested $8 million to support state clinics and improve mosquito control in 2016.

Pernambuco and its neighboring state, Ceará, have both responded to the crisis by setting up “early stimulation clinics” where babies can get all the therapy they need in one place. Ceará is setting up 19 such clinics for babies with microcephaly as well as other developmental delays.

Marcia Castro, a Brazil-born associate professor of demography at Harvard’s public health school, plans to work with local experts to track a cohort of these infants in Ceará over multiple years, including those with Zika-related microcephaly.

“We really know nothing about what’s going to happen with kids with this condition,” Castro said. “How long are they going to live? … We just don’t know.” She said it’s important to monitor Zika babies without microcephaly, too: In a recent study, she found that 20 percent of babies with definite or probable Zika birth defects have the same type of brain malformation seen in microcephaly, except their head size is normal.

Castro said early stimulation is key for all of these babies: “Those kids are not going to have a normal life,” she said. “If they’re going to have a little bit of a better life, you have to start right now.”

One of Pernambuco’s new early stimulation centers sits inside the Altino Ventura Foundation clinic. The modern, two-year-old facility, which specializes in treating vision problems, recently expanded to treat babies with microcephaly.

On a recent Tuesday morning, the clinic teemed with babies with microcephaly moving between appointments with speech therapists, physical therapists, and eye doctors. But some large therapy rooms were vacant because the center doesn’t have money to hire enough therapists, said Dr. Liana Ventura, the clinic’s president.

The center can afford to treat only 116 babies, she said. Another 150 sit on a waiting list and could wait a year for rehabilitation, missing their most critical period of development. “If we lose our first year, that’s when 90 percent of the vision is developed,” she said. “We are very worried about this.”

Researchers from the University of Oxford were visiting the clinic, taking 3-D images of babies’ heads to try to come up with a more sophisticated way to measure microcephaly, which is typically determined by head circumference. Ventura urged them to examine the babies’ unusual ear shapes, too, which she thinks may be an indicator of when in the pregnancy the baby’s mother was exposed to Zika.

Elsewhere, staff gathered moms, dads, and other caretakers in a group to coach them on how to massage, sing to, talk to, and tickle their babies to stimulate their senses and their development. In private appointments, doctors reinforced that message.

“Let’s be very real. How many hours a day do you think he spends with his eyes open and active?” eye doctor Marisa Kattah asked a family during an appointment with 9-month-old Pedro Miguel.

“One hour,” estimated Silvino Silva, the baby’s grandfather. During the appointment, Pedro Miguel had trouble opening his eyes. His grandmother, Maria Soares, said the baby was upset and groggy because his seizure medication just changed.

Back at Oswaldo Cruz, Cleane Pereira said her sister-in-law, Duda, is also largely inactive.

“When she’s awake, she doesn’t move much,” she said. “We don’t know what the future will be.”

She went back to rocking the baby — and preparing to spend yet another night in a hospital bed.

Coeli, the doctor who has treated Duda for eight months, said she doesn’t think the baby will have a long life.

“It’s a very severe case,” she said. But “we are going to do all we have to do to have her stay with us.”