Overview
Congenital Epstein-Barr virus (EBV) infection is a rare condition that happens when a baby is infected with the Epstein-Barr virus before birth or during delivery. EBV is the same virus that causes mononucleosis (sometimes called 'mono' or the 'kissing disease') in older children and adults. When a pregnant mother has an active EBV infection, the virus can sometimes cross the placenta and infect the developing baby, leading to problems that are present at birth. This infection can affect many parts of the body at once. Babies may be born with an enlarged liver and spleen, low birth weight, jaundice (yellowing of the skin and eyes), low platelet counts that cause bleeding problems, and in some cases, brain or nervous system involvement. The immune system of a newborn is not fully developed, which makes it harder to fight off the virus effectively. Treatment is mainly supportive, meaning doctors focus on managing each symptom as it appears. There is no specific antiviral cure approved for newborns with congenital EBV infection. Some antiviral medications used in adults, such as acyclovir or ganciclovir, may be considered in severe cases, but evidence in newborns is limited. The outlook varies widely depending on how severely the baby is affected and which organs are involved.
Also known as:
Key symptoms:
Enlarged liver (hepatomegaly)Enlarged spleen (splenomegaly)Jaundice (yellowing of the skin and whites of the eyes)Low birth weight or small size for gestational ageLow platelet count, leading to easy bruising or bleedingAnemia (low red blood cell count causing paleness and fatigue)Fever shortly after birthSwollen lymph nodesBreathing difficultiesNeurological problems such as seizures or poor muscle toneRash on the skinPoor feeding or difficulty eating
Sporadic
Usually appears on its own, not inherited from a parent
Neonatal
Begins at or shortly after birth (first 4 weeks)
FDA & Trial Timeline
4 eventsNew York Medical College — PHASE2
Pediatric Transplantation & Cellular Therapy Consortium — PHASE1, PHASE2
Norvir Powder for Oral Suspension: FDA approved
Used in combination with other antiretroviral agents for the treatment of patients with HIV-1 infection
Viread: FDA approved
Treatment of HIV infection in combination with other antiretroviral agents in patients 12 to less than 18 years of age
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
3 availableHivid
Combination therapy with zidovudine is indicated for the treatment of adult patients with advanced HIV infection (CD4 count < 300) who have demonstrated malignant clinical or immunologic deterioration…
Combination therapy with zidovudine is indicated for the treatment of adult patients with advanced HIV infection (CD4 count < 300) who have demonstrated malignant clinical or immunologic deterioration.
Azithromycin
Uncomplicated skin and skin structure infections in adults
Viread
Treatment of HIV infection in combination with other antiretroviral agents in patients 12 to less than 18 years of age
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Financial Resources
3 resourcesNorvir Powder for Oral Suspension
AbbVie Inc.
Travel Grants
No travel grants are currently matched to Congenital Epstein-Barr virus infection.
Community
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Start the conversation →Latest news about Congenital Epstein-Barr virus infection
Disease timeline:
New recruiting trial: EBV-specific Cytotoxic T-lymphocytes (CTLs) for Refractory EBV Infection
A new clinical trial is recruiting patients for Congenital Epstein-Barr virus infection
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Which organs are affected in my baby, and how serious is the involvement?,What tests will be done to monitor my baby's progress, and how often?,Is antiviral treatment recommended for my baby, and what are the risks and benefits?,Are there any long-term risks I should know about, such as liver disease or immune problems later in life?,What developmental support or therapies might my baby need as they grow?,When is it safe for my baby to be around other children or family members?,What warning signs should make me bring my baby to the emergency room right away?
Common questions about Congenital Epstein-Barr virus infection
What is Congenital Epstein-Barr virus infection?
Congenital Epstein-Barr virus (EBV) infection is a rare condition that happens when a baby is infected with the Epstein-Barr virus before birth or during delivery. EBV is the same virus that causes mononucleosis (sometimes called 'mono' or the 'kissing disease') in older children and adults. When a pregnant mother has an active EBV infection, the virus can sometimes cross the placenta and infect the developing baby, leading to problems that are present at birth. This infection can affect many parts of the body at once. Babies may be born with an enlarged liver and spleen, low birth weight, ja
How is Congenital Epstein-Barr virus infection inherited?
Congenital Epstein-Barr virus infection follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Congenital Epstein-Barr virus infection typically begin?
Typical onset of Congenital Epstein-Barr virus infection is neonatal. Age of onset can vary across affected individuals.
Are there clinical trials for Congenital Epstein-Barr virus infection?
Yes — 1 recruiting clinical trial is currently listed for Congenital Epstein-Barr virus infection on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Congenital Epstein-Barr virus infection?
19 specialists and care centers treating Congenital Epstein-Barr virus infection are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Congenital Epstein-Barr virus infection?
3 patient support programs are currently tracked on UniteRare for Congenital Epstein-Barr virus infection. See the treatments and support programs sections for copay assistance, eligibility, and contact details.