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

Recife, Brazil – Duda baby sitting on the bed, a pink barrette in her hair. I was ready to go home after a month in the hospital – when he began breathlessly. Nurses rushed to his side with emergency oxygen. His sister, in the hallway, pressed her face against the window, watching another medical setback marked by sharp cries.

Born in a head last November with only 10 inches in circumference, Duda is one of the Brazilian Zika babies. She was one of the first children at the University Hospital Oswaldo Cruz Recife to be diagnosed with microcephaly related Zika – a birth defect that leaves newborns with small heads and malformed brains and often cause serious developmental problems. The hospital was soon identified as 20 suspected microcephaly cases per day in children whose mothers were infected during pregnancy Zika, as Recife became the epicenter of a devastating epidemic of the mosquito-borne virus.

Now, as the pace of new cases has declined, Brazil is entering a new phase of the epidemic, in which families and doctors are discovering long-term medical complications Duda and others like her 1,748 infants across the country will face.

Doctors have coined a new name for their disease, “Zika congenital syndrome” – a sign of how much they have to learn. In addition to microcephaly, experts say that some of the affected children have a joint malformation or cerebral malformation, although their heads are of normal size. Much is unknown: How will these babies grow? Will they be able to talk or walk? How long will they live?

medical experts from all over northeastern Brazil are launching year to keep track of these babies and answer these questions. Meanwhile, the huge cost of raising babies is the effort poor families and the government that supports them. The epidemic is overwhelming hospitals and clinics struggling to find enough doctors, therapists – and even basic supplies such as infant feeding tubes -. To meet the need

Duda – born of parents who were eking out a living collecting recyclable materials – is one of nearly 200 babies with birth defects Zika being treated at Oswaldo Cruz, a public hospital with buildings of simple cement in a sprawling urban campus in Recife. Families, most of them poor, hours away by public vans to seek therapy. disability babies vary widely, depending in part on how early in pregnancy their mothers got Zika. Many are missing key milestones such as sitting, smiling, or reach a toy development. They have seizures and difficulty seeing, hearing and eat.

Recife Microcephaly
Cleane Silva Pereira, 18, cares for his adopted sister in law, Maria Eduarda – known as Duda – while she is hospitalized for an illness respiratory infection.
Recife Microcephaly
Veronica Pereira, 10, watches her sister Duda from the hallway.

Many are returning to the hospital on several occasions – most commonly for respiratory problems, said Dr. Maria Angela Rocha, director of the department of pediatric infectious diseases hospital. Your brain has trouble with orchestrating the simple process of swallowing. So the food gets into the lungs, causing infections, he said.

That’s what Duda landed in the hospital for most of July. Duda, whose full name is Maria Eduarda Pereira, had plenty of company :. His aunt, Miriam Pereira, who took Duda after his mother rejected it, slept on a cot in the room, along with sister and sister-in-law Duda

care Duda has been a full-time job, Pereira said. Duda takes medication for seizures, wear hearing aids, and feeds on expensive formula because it is lactose intolerant. Like many babies microcephaly, wearing glasses, which aims to maintain its interest in the world around it so you do not close your eyes throughout the 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 dedicated to taking care of Duda, along with Duda 18-year-old sister-in-law, Cleane. The family is based on a government subsidy $ 281-a-month to support Duda -., As well as a monthly check from a judge who oversaw the adoption procedure Duda and was interested in the baby’s life

Pereira recovered from leukemia, just in time to lift Duda. It is clear about his mission. “It was God who sent me” to care for the child

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

“Whenever it seizes, forgets,” Pereira said.

Recife Microcephaly
Coeli Duda review of X-ray showing her feeding tube bent in the wrong position.

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

However, an X-ray showed the tube was misplaced – twice – and when staff tried to reinsert the tube, Duda lamented. I would not go in the right place. When they removed the tube all the way, Duda had difficulty breathing -. Sending a nurse running down the hall in high heels clacking seeking oxygen equipment

Duda’s family waited in the hallway during the tense episode. Her aunt, however, could not bear to see.

Dr. Regina Coeli come up with an update: The hospital needed a feeding tube longer, thinner, but they had no. She Pereira wrote a prescription and asked him to buy one.

But where? Coeli started calling around. None of the public hospitals had one. Finally found someone with 10 feeding tubes, and ordered them all. Pereira would not have to leave the hospital, after all, to buy a basic part of the medical team for your child.

Coeli said it was the first time the hospital was left without feeding tubes. But the lack of resources to treat microcephaly babies in the state of Pernambuco, Recife, where you feel, is not new. Infants with microcephaly need intensive therapy for their vision, hearing, speech, swallowing and mobility. Oswaldo Cruz does not have enough therapists to treat all babies there, so families often shuttle their children around several clinics.

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

Recife Microcephaly
A support group at the clinic Altino Ventura Foundation physics, audio and visual techniques to encourage parents to discuss their children born with related Zika microcephaly.
Recife Microcephaly
Speech Monica Miranda therapist works with Andriel 11 months old Jonas Gomes, who was born with microcephaly related to Zika, while his mother, Joana D’Arc, watches Altino Ventura Foundation clinic.

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

Marcia Castro, an associate of Brazilian origin of demography in the school of public health at Harvard professor, plans to work with local experts to track a cohort of these newborns in Ceará over multiple years including those with microcephaly related to Zika.

“I do not really know anything about what will happen to children with this condition,” Castro said. “How long will they live? … Just do not know” She said it is important to monitor Zika babies without microcephaly, also :. In a recent study, he found that 20 percent of babies with birth defects or probable Zika have the same type of brain malformation seen in microcephaly, except their head size is normal.

Castro said that early stimulation is key to all these babies: “these children are not going to have a normal life,” he said. “If they are going to have a bit of a better life, you have to start now.”

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

On a recent Tuesday morning, the clinic was full of children with microcephaly moving between appointments with speech therapists, physiotherapists and eye doctors. However, some large therapy rooms were vacant because the center does not have enough money to hire therapists, said Dr. Liana Ventura, president of the clinic.

Recife Microcephaly
Felipe Rocher Wagner photographs of 8 months old, Maria Vitoria, in the lap of his mother Danielle Silva, the Foundation Altino Ventura clinic for a research project the University of Oxford.

The center can afford to treat only 116 babies he said. Another 150 sit on a waiting list and could wait a year for rehabilitation, lack of its most critical period of development. “If we lose our first year, when it develops 90 percent of the vision,” he said. “We are very concerned about this.”

Researchers at the University of Oxford were visiting the clinic, taking pictures in 3-D heads of babies to try to reach a more sophisticated way to measure microcephaly, which is normally determined by the circumference of the head. Ventura urged them to examine ways of unusual hearing babies, too, that she thinks may be an indicator that in pregnancy the baby’s mother was exposed to Zika.

Elsewhere, the staff brought together mothers, fathers and other caregivers in a group to train them on how to massage, sing, speak, and tickle their babies to stimulate their senses and development. In private appointments, doctors reinforced this message.

“Let’s be very real. How many hours a day do you think happens with your eyes open and active?” Marisa Kattah Oculista asked a family for an appointment with 9 months old, Pedro Miguel.

“One hour,” believes Silvino Silva, the grandfather of the baby. During the meeting, Pedro Miguel had trouble opening his eyes. His grandmother, Maria Soares, said the baby was upset and confused because his seizure medication just changed.

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

Recife Microcephaly
Cleane Silva Pereira Duda holds the baby after her feeding tube was removed.

“When awake, she does not move much,” she said. “We do not know what the future.”

He returned to rock the baby -. And it is preparing to spend another night in a hospital bed

Coeli, the doctor who has treated Duda for eight months, said he does not believe that the baby will have a long life.

“It is a very serious case,” he said. However, “we will do everything we have to do to have her stay with us.”

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