"There’s a profound concern about how we will support the communities that were affected," says Brickley. "Even though the emergency is over, the need for action on Zika has not ended."
Microcephaly is not the only condition that can result from Zika infection during pregnancy. A range of outcomes, many less visible than smaller head sizes, have been identified in research studies, so the term ‘congenital Zika syndrome’ is now used to describe children who have been affected.
Current studies are looking at patterns in the children’s growth, brain development and experiences of epilepsy. By looking across hundreds of cases, researchers have identified other related symptoms that might not otherwise have been considered, such as urinary tract infections.
"When babies are affected in the central nervous system, they can be affected in the function of the kidneys, or be affected by repeat urinary infections," explains Demócrito Miranda-Filho, a physician and Associate Professor in Infectious Diseases at the University of Pernambuco in Recife. Damage in the brain may mean these children have less control over their bladders, increasing the risk of infection.
Nerve damage can also cause dysphagia: problems coordinating the actions involved in swallowing, which can be fatal for these babies. Because many of them also lack a cough reflex, if they breathed in milk by accident when feeding, it could get into their lungs and lead to pneumonia. Knowing this meant mothers could be more alert to the danger.
Lessons for the future
Researchers in the Microcephaly Epidemic Research Group and others are contributing to a range of advice and guidance for the families, from techniques for safe feeding to how to stretch and stimulate the children as they grow and develop.
But the families are also teaching the researchers. "Every day is different," says Brickley. "As the children get older, we’re constantly having to re-evaluate and test our assumptions and hypotheses."
"For us, it’s really a new experience," adds Miranda-Filho. "We are still learning every day."
There are wider lessons, too, about preparing for future epidemics, and how to put in place strong systems that will be able to respond quickly and effectively next time. An essential part of that is having laboratories equipped with the right tools, researchers and clinicians learning new skills, and scientific networks growing stronger.
For example, the dozen or so research groups in Brazil working with the families affected by Zika have agreed to combine their data, allowing a more powerful analysis than any single group working alone.
Hopefully, this will help answer the families’ questions, which Ximenes says tend to be practical in nature: "What’s known about the disease? What has this investigation brought that may help my children? What expectations may I have according to the more recent findings?
"They are very demanding on translating the scientific findings," he concludes approvingly.