Overview
Congenital herpes simplex virus (HSV) infection, also known as neonatal herpes simplex, is a serious infectious condition caused by transmission of herpes simplex virus (type 1 or type 2) from mother to infant, most commonly during passage through an infected birth canal, though in utero (transplacental) and postnatal transmission can also occur. The condition is classified under congenital viral infections and can present in three distinct clinical forms: disseminated disease affecting multiple organs including the liver, lungs, and brain; central nervous system (CNS) disease presenting as encephalitis; and disease localized to the skin, eyes, and mouth (SEM disease). Disseminated and CNS forms carry the highest morbidity and mortality. Key symptoms depend on the clinical form but may include vesicular skin lesions, seizures, lethargy, poor feeding, respiratory distress, hepatitis, disseminated intravascular coagulation, and encephalitis. Symptoms typically present within the first few weeks of life, often between days 1 and 21. Without treatment, disseminated disease has a mortality rate exceeding 80%. Ocular involvement can lead to chorioretinitis, cataracts, and microphthalmia, while CNS disease may result in long-term neurodevelopmental impairment including intellectual disability and cerebral palsy. The mainstay of treatment is high-dose intravenous acyclovir, which has significantly improved survival rates and outcomes, particularly when initiated early. Suppressive oral acyclovir therapy following acute treatment has been shown to improve neurodevelopmental outcomes in infants with CNS and SEM disease. Cesarean delivery is recommended for mothers with active genital herpes lesions at the time of delivery to reduce transmission risk. Despite advances in antiviral therapy, long-term neurological sequelae remain common, especially in infants with disseminated or CNS disease.
Also known as:
Clinical phenotype terms— hover any for plain English:
Neonatal
Begins at or shortly after birth (first 4 weeks)
FDA & Trial Timeline
1 eventModernaTX, Inc. — PHASE2
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Congenital herpes simplex virus infection.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Congenital herpes simplex virus infection at this time.
New trials open frequently. Follow this disease to get notified.
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
Travel Grants
No travel grants are currently matched to Congenital herpes simplex virus infection.
Community
No community posts yet. Be the first to share your experience with Congenital herpes simplex virus infection.
Start the conversation →Latest news about Congenital herpes simplex virus infection
Disease timeline:
New recruiting trial: A Study to Evaluate the Efficacy, Safety, and Immunogenicity of mRNA-1647 Cytomegalovirus (CMV) Vaccine in Allogenic Hematopoietic Cell Transplantation (HCT) Participants.
A new clinical trial is recruiting patients for Congenital herpes simplex virus infection
New recruiting trial: The Effects of Sirolimus in Patients With Dilated Cardiomyopathy Infected With Kaposi Sarcoma-associated Virus
A new clinical trial is recruiting patients for Congenital herpes simplex 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.
Common questions about Congenital herpes simplex virus infection
What is Congenital herpes simplex virus infection?
Congenital herpes simplex virus (HSV) infection, also known as neonatal herpes simplex, is a serious infectious condition caused by transmission of herpes simplex virus (type 1 or type 2) from mother to infant, most commonly during passage through an infected birth canal, though in utero (transplacental) and postnatal transmission can also occur. The condition is classified under congenital viral infections and can present in three distinct clinical forms: disseminated disease affecting multiple organs including the liver, lungs, and brain; central nervous system (CNS) disease presenting as en
At what age does Congenital herpes simplex virus infection typically begin?
Typical onset of Congenital herpes simplex virus infection is neonatal. Age of onset can vary across affected individuals.
Which specialists treat Congenital herpes simplex virus infection?
25 specialists and care centers treating Congenital herpes simplex virus infection are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.