To Study Zika, They Offered Their Kids. Then They Were Forgotten.

BY MARIANA LENHARO: For Complete Post, click here…

Years after agreeing to take part in research, families of children with congenital Zika syndrome are feeling abandoned.

ROCHELLE DOS SANTOS LEARNED that her daughter would probably be born with microcephaly — a condition where a baby’s head is much smaller than expected — when she was seven months pregnant. It was 2016 and Brazil was going through an unprecedented microcephaly outbreak associated with the mosquito-borne virus Zika. After the baby was born and the diagnosis of congenital Zika syndrome was confirmed, several researchers approached dos Santos to see if she’d join relevant clinical studies. Eager to understand her daughter’s condition, she agreed.

Dos Santos says she was surprised to learn through a social media post last year that an international study that she participated in had been published in the journal Brain & Development. The study took over a year to be completed, and dos Santos had taken her daughter multiple times to the hospital for evaluations. As the head of an association for families of children affected by Zika in Goiás state in midwest Brazil, dos Santos wanted to share the findings with the other caregivers. She says she had to reach out directly to Hélio van der Linden, a neurologist at the Dr. Henrique Santillo State Center for Rehabilitation and Readaptation who authored the study in partnership with researchers in Brazil and the United States, to ask that a copy be shared with her. But she says he told her there was no point because it was written in English.

“Of course, we get upset,” she recalled in her native Portuguese. “We want to have this feedback and better understand this situation that is new for everyone.” Dos Santos — who noted that while she speaks only a little English, her husband reads and speaks English capably — said she feels used and that many other families share the same sentiment. “We know that Covid is now the priority,” dos Santos adds, “but our children are still here, they still have needs.”

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