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Living with Zika virus congenital syndrome

A pattern of birth defects caused when the Zika virus infects a baby's developing brain before birth.

Understanding Zika virus congenital syndrome

Zika virus congenital syndrome is a pattern of birth defects caused by Zika virus infection of the baby's brain during pregnancy.

GARD describes it as birth defects that result from infection of the fetal brain with the Zika virus before birth. GARD gives no further details here.

Signs & symptoms

GARD doesn't list specific symptoms for this condition yet.

Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.

Diagnosis

  1. Talk with your doctor

    Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.

  2. See a specialist

    Your doctor may refer you to a specialist who knows rare conditions.

  3. Ask which tests can help

    Your care team will decide which exams and tests can confirm the diagnosis.

Care & treatment

Care team
A doctor familiar with rare conditions, plus specialists as needed
Expert care
Ask about multidisciplinary care centers for rare conditions
Treatment
GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
Research
Clinical trials and observational studies may be options. See the research section below.

General information, not medical advice. Your care team makes the decisions.

Everyday life

Living with a rare condition is easier with support.

  • Connect with rare disease patient organizations for support
  • Keep notes on symptoms, changes and questions for appointments
  • Ask about patient registries that help research
  • Look into financial aid and travel resources for care visits
Bring these questions to your next doctor visit
Which specialists should follow my child's development?
What tests can show how the brain and eyes are affected?
What early support services are available for my child?

Quick facts

It is caused by infection of the fetal brain with the Zika virus during pregnancy.

Also known as: congenital infection caused by zika virus; congenital zika syndrome; congenital zika virus infection; zikv congenital infection

Patient organizations

Rare-disease groups that can help

Source: NIH GARD · Zika virus congenital syndromeGARD ID 13441 · GARD page updated September 2026 · Plain-language summary by Know Rare; editorial review pending. General information, not medical advice.

You are more than your diagnosis

Perspectives from people navigating life with Zika virus congenital syndrome.

Explore the Zika virus congenital syndrome blog

Explore research for Zika virus congenital syndrome

Explore actively recruiting Zika virus congenital syndrome studies with HealthSpark.

HealthSpark

Find actively recruiting studies for Zika virus congenital syndrome with HealthSpark. Share your city to explore research near you.

  • Recruiting studies from ClinicalTrials.gov
  • Share your city to look for research near you
  • Eligibility is confirmed by the study team

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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.

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