Living with Congenital Epstein-Barr virus infection
A rare infection a baby can have from birth that causes no symptoms in most infants but, rarely, causes multiple differences.
Understanding Congenital Epstein-Barr virus infection
Rarely, after birth, babies have several birth differences such as a small jaw, undescended testes and cataracts. They may also have slow growth, low muscle tone, an enlarged liver and spleen, small red spots on the skin and bruises, and changes in long bones. Low birth weight may also be reported. It is seen in newborns and infants.
Signs & symptoms
Most infants have no symptoms. GARD's summary lists these rare features:
- Small jaw (micrognathia)
- Undescended testes
- Cataracts
- Low muscle tone (hypotonia)
- Enlarged liver and spleen
- Small red spots and bruises
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask 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
Quick facts
It is an infection with the Epstein-Barr virus that is present at birth.
Also known as: antenatal ebv infection; antenatal epstein-barr virus infection; congenital ebv infection; congenital infection caused by epstein-barr virus; congenital infection caused by human herpesvirus 4; mother-to-child transmission of epstein-barr virus infection
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 Epstein-Barr virus infection.
Explore research for Congenital Epstein-Barr virus infection
Explore actively recruiting Congenital Epstein-Barr virus infection studies with HealthSpark.
Find actively recruiting studies for Congenital Epstein-Barr virus infection 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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