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As Zika emergency eases, agony goes on for parents
2,500 Brazilian babies left with severe disability
By Pam Belluck and Tania Franco
New York Times

ESCADA, Brazil — Not a soul was in sight on the narrow dusty street, except for a cat skittering under a three-quarter moon.

It was 2:30 a.m., and Vera Lúcia da Silva was readying her baby for a journey to the city of Recife, 2½ hours away. Cradling Sophia Valentina, she walked through the fog-shrouded town, then climbed into a government van for the jostling ride, arriving just after sunrise.

They make the arduous trip several times a week. It is the only way to get the treatment and therapy Sophia needs for an ominous array of problems caused by the Zika virus.

Now more than a year old, Sophia is a child of the Zika epidemic, one of nearly 2,500 babies in Brazil born to infected mothers, with brain damage so profound the consequences are only beginning to be understood.

In November, the World Health Organization lifted its emergency designation from the mosquito-borne virus, but Zika has hardly disappeared.

Thousands of new Zika infections continue to be reported throughout Latin America, and WHO officials said their action simply signals that, like malaria or yellow fever, Zika is a continuing threat rather than an urgent pandemic.

For families of Zika babies, however, the disastrous effects are only deepening.

That is especially true in the impoverished cities and villages of northeastern Brazil, where the connection between the mysterious virus and infants born with tiny misshapen heads was first detected and where hundreds of families are struggling to give these babies the best lives possible.

The babies can have seizures, breathing problems, trouble swallowing, clubbed feet, vision and hearing problems, and ferocious irritability. They also can have weakness and stiffness in muscles and joints, preventing them from even lifting their heads.

While the children are still small enough to be held, fed, and carried, ultimately many may be unable to walk, attend regular schools, or live on their own as adults.

“These babies, most of them or all of them, they’re going to live very long lives, you can keep them alive a long time, and they will need assistance from someone 24 hours a day,’’ said Dr. Ernesto Marques, an infectious-disease expert at the University of Pittsburgh and the Oswaldo Cruz Foundation in Recife. “The consequences to the society are huge.’’

Near the bed where da Silva was dressing Sophia for their middle-of-the-night walk to the van, a piece of paper read “Grave risk of aspiration.’’

Sophia had serious dysphagia, swallowing problems afflicting older Zika babies whose brains cannot coordinate skills for eating. Doctors advised adding thickener to her formula, but if unsuccessful, she would need a feeding tube threaded through her nose.

“I am asking God that she will not have to use the feeding tube,’’ said da Silva, who is 32. Previous use of one caused the baby to cough up blood.

Da Silva’s husband, Ronaldo, 34, tried to reassure her. “God,’’ he said, “would never give us 100 kilos if we could only carry 50 kilos.’’

At the Altino Ventura Foundation clinic, five therapists examined Sophia. One shook a rattle by her ear. Another removed Sophia’s tiny lavender eyeglasses, waved a shiny silver pompom and flickered a flashlight, but her eyes seemed barely able to follow the stimuli.

“Sophia is a child with very compromised visual, auditory and motor skills,’’ said Kyrla Melo, a physical therapist. “She has no head control, she does not roll over, she does not sit.’’

When Sophia’s mother was three months pregnant with her, a mosquito bit her arm. She developed diarrhea and a rash on her arm, belly, and face.

A doctor said it could be chikungunya, a mosquito-borne illness that seldom has lasting effects and is not transmitted to a fetus. Zika, carried by the same mosquito, was barely known in Brazil then.

Things seemed fine until a six-month ultrasound. “Your daughter has microcephaly,’’ a doctor told Vera Lúcia da Silva. “A smaller head, and the child’s brain has not developed.’’

Da Silva despaired. Still, two weeks later, when a doctor said, “If you don’t want a child with microcephaly, you are not obligated to have it,’’ she rejected abortion. “No, even if she has microcephaly, I am going to love her the way she comes,’’ she said.