National Center for Advancing and Translational Sciences Genetic and Rare Diseases Information Center, a program of the National Center for Advancing and Translational Sciences

Congenital Zika syndrome


Other Names:
Zika syndrome
Categories:
Subtypes:
Congenital Zika syndrome is caused by exposure to the Zika virus before birth. This may happen if the mother is infected from a mosquito bite or through sexual contact with an affected partner. Signs and symptoms of congenital Zika syndrome include birth defects (like small head size) and other health and development problems.[1][2] Zika virus outbreaks are currently occurring in many countries.[3] Vaccines to prevent Zika virus infection are being researched. The CDC recommends that pregnant women consider postponing travel to Zika-affected areas. People living in or traveling to areas where Zika virus is found should take steps to prevent mosquito bites. Those who have traveled to Zika-affected areas may wish to take steps to prevent sexual transmission of the Zika virus.[4] Babies with congenital Zika syndrome benefit from special medical care to address their healthcare needs.[2]  
Last updated: 12/27/2017

Making a diagnosis for a genetic or rare disease can often be challenging. Healthcare professionals typically look at a person’s medical history, symptoms, physical exam, and laboratory test results in order to make a diagnosis. The following resources provide information relating to diagnosis and testing for this condition. If you have questions about getting a diagnosis, you should contact a healthcare professional.

Testing Resources

  • The Centers for Disease Control and Prevention has information on diagnostic testing for Zika virus infection.
  • The Centers for Disease Control and Prevention has a feature which allows individuals to find their state health department.

The resources below provide information about treatment options for this condition. If you have questions about which treatment is right for you, talk to your healthcare professional.

Management Guidelines

If you need medical advice, you can look for doctors or other healthcare professionals who have experience with this disease. You may find these specialists through advocacy organizations, clinical trials, or articles published in medical journals. You may also want to contact a university or tertiary medical center in your area, because these centers tend to see more complex cases and have the latest technology and treatments.

If you can’t find a specialist in your local area, try contacting national or international specialists. They may be able to refer you to someone they know through conferences or research efforts. Some specialists may be willing to consult with you or your local doctors over the phone or by email if you can't travel to them for care.

You can find more tips in our guide, How to Find a Disease Specialist. We also encourage you to explore the rest of this page to find resources that can help you find specialists.

Healthcare Resources

Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Providing General Support

These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

  • You can obtain general information on this topic from the Centers for Disease Control and Prevention (CDC). The CDC is recognized as the lead federal agency for developing and applying disease prevention and control measures to improve the health of the people of the United States. The CDC has updated information and videos on the Zika virus.
  • March of Dimes has information on Congenital Zika syndrome.

In-Depth Information

  • Orphanet is a European reference portal for information on rare diseases and orphan drugs. Access to this database is free of charge.

Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know.

  1. Congenital Zika Syndrome & Other Birth Defects. Centers for Disease Control and Prevention. Page last reviewed: November 27, 2017; https://www.cdc.gov/pregnancy/zika/testing-follow-up/zika-syndrome-birth-defects.html. Accessed 12/27/2017.
  2. Congenital Zika syndrome. March of Dimes. November 28, 2017; https://www.marchofdimes.org/complications/congenital-zika-syndrome.aspx. Accessed 12/27/2017.
  3. Areas with Zika. Centers for Disease Control and Prevention. Centers for Disease Control and Prevention (CDC). February 9, 2016; http://www.cdc.gov/zika/geo/index.html.
  4. How to Protect Yourself. Centers for Disease Control and Prevention (CDC). March 18, 2016; http://www.cdc.gov/zika/pregnancy/protect-yourself.html.