Zika congenital syndrome – what next?

This is the third of a three-part series on Zika’s effects during pregnancy.


In the first part, I introduced ‘congenital Zika syndrome’ and described how Zika is responsible for a lot more than just microcephaly.


In the second part, I explained why we may still be under-estimating the number of children affected by Zika.


This final post addresses the future direction of research on ‘congenital Zika syndrome’, the numbers of children still being born with the syndrome and what we can expect will happen for the children already born with syndrome.

What next for research on congenital Zika syndrome?

When it comes to congenital Zika syndrome, we know that microcephaly is just the ‘tip of the iceberg’ and we have a lot of research left to do to find out the full extent of the virus on babies. To stretch the metaphor, we have to dive down and find out what’s underneath the water!

Some of the questions we have to answer include:

  • What other problems might Zika virus during pregnancy cause?
  • How commonly do these problems occur? and
  • What’s the long-term outlook for these children like?

Another key question for researchers now is whether, for babies who did not get a diagnosis of congenital Zika syndrome at birth, will more subtle problems be seen as they develop over the next few years?

To answer the above questions, there are two huge international studies, both of which aim to follow 10,000 or more pregnant women throughout their pregnancy and then follow-up their children to assess any long-term effects of Zika virus infection. The first of these, the ‘Zika in Infants and Pregnancy‘ (ZIP), a collaboration between the USA’s National Insitute for Health (NIH) and FIOCRUZ (Brazil’s public health agency, who are a key player in the research project I am involved in). The second is a project by ZIKAlliance, an EU-funded collaboration involving 53 different research institutions around the world. Both will be conducted across Latin America and the Caribbean.

Are we still seeing children born with congenital Zika syndrome?

The Zika outbreak has calmed down a lot since 2015-16 but the virus is still out there and there are still new cases of children born with congenital Zika syndrome every week.

Although the numbers have been lower in Brazil, the virus is still quite active in other parts of the Americas. Over just the last month (May 2017), the number of children born with congenital Zika syndrome in the Caribbean increased from 143 to 188 and the number in the US increased from 66 to 73.

The decline in numbers affected by Zika is great news, but it has also made the disease harder to study as it is making it difficult to find enough people infected with the virus needed for the sort of projects that ZIKAlliance and ZIP are proposing.

As a result, the ZIKAlliance group are considering changing their plans to focus on countries where Zika has been rarer, but future flare-ups might occur, such as Bolivia.

Additionally, the ZIP and the ZIKAlliance project have been talking about teaming up and sharing their data so that they have enough people in their combined studies to provide a meaningful analysis.

I have written more about the current state of the Zika virus outbreak and what we expect the virus will do next in a previous post.

What next for the children born with the syndrome?

It’s important to remember that even if the virus is on its way out, the children it has affected are still out there. The problems these children are born with are likely to stick with them for life. They will need additional care and attention throughout childhood with their basic needs, such as washing and feeding. Many will never be able to go to a normal school and others will never be able to walk on their own.

Sadly, publicity around Zika has already died out, and with this, the funding for services to look after these children is already trickling away.

From my own experience in Brazil, I have seen how the centres which have been set up to look after these children have already been scaled-back, as the world becomes less interested.

My plea to the world, therefore, is to not forget about these children, who will have to live with the disability they were born with for the rest of their lives.






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