Living with Congenital varicella syndrome
An extremely rare condition in which a mother's chickenpox early in pregnancy causes birth differences in her baby.
Understanding Congenital varicella syndrome
It is linked to infection up to 20 weeks into pregnancy. Newborns may have low birth weight and differences of the skin, brain, eyes, arms, legs, hands, or feet. The range and severity vary greatly, depending on when in pregnancy the infection happened.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Skin scarring
- Small head (microcephaly)
- Cloudy lens of the eye (cataract)
- Small eyes (microphthalmia)
- Shorter or smaller limbs
- Developmental delay
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include eye disease specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Eye disease specialists (ophthalmologists)
- 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
Quick facts
It is caused by the mother's chickenpox (varicella zoster) infection early in pregnancy, up to about 20 weeks.
Also known as: antenatal varicella virus infection; mother-to-child transmission of varicella syndrome
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Congenital varicella syndrome.
Explore research for Congenital varicella syndrome
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- Recruiting studies from ClinicalTrials.gov
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- 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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