Overview
Neonatal lupus erythematosus (NLE), also called neonatal lupus syndrome, is a rare condition that affects newborn babies. It occurs when certain antibodies from the mother cross the placenta during pregnancy and affect the developing baby. These antibodies, known as anti-Ro/SSA and anti-La/SSB, are found in mothers who may have lupus, Sjögren syndrome, or sometimes no known autoimmune disease at all. The mother may not even know she carries these antibodies until her baby is diagnosed. The most common signs of neonatal lupus include a skin rash that often appears on the face and scalp, and heart problems — most notably congenital heart block, where the electrical signals that control the heartbeat are disrupted. Other features can include low blood cell counts and liver problems. The skin rash and blood or liver issues usually resolve on their own within the first six months of life as the mother's antibodies naturally clear from the baby's system. However, congenital heart block is permanent and may require a pacemaker. Treatment depends on which parts of the body are affected. Skin rashes are managed by protecting the baby from sun exposure. Congenital heart block may need monitoring, medication, or pacemaker placement. Babies with blood count or liver abnormalities are monitored closely, as these typically improve without specific treatment. Early detection during pregnancy through maternal antibody screening can help doctors plan appropriate care at delivery.
Key symptoms:
Red or ring-shaped skin rash, often on the face and scalpSlow heartbeat in the baby (heart block)Low blood platelet count (easy bruising or bleeding)Low red blood cell count (anemia, pale skin)Low white blood cell countLiver inflammation or abnormal liver testsEnlarged liverEnlarged spleenSensitivity to sunlight making the rash worseFluid buildup around the heart (pericardial effusion)Heart failure in severe casesJaundice (yellowing of the skin)
Clinical phenotype terms (36)— hover any for plain English
Multifactorial
Caused by a mix of several genes and environmental factors
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Neonatal lupus erythematosus.
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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 Neonatal lupus erythematosus.
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Questions for your doctor
Bring these to your next appointment
- Q1.Does my baby have heart block, and if so, how severe is it? Will a pacemaker be needed?,How often will my baby need blood tests and heart monitoring?,Should I take hydroxychloroquine during future pregnancies to reduce the risk of NLE?,What is the chance that my next baby will also have neonatal lupus?,Will the skin rash leave any permanent marks or scars?,Is my baby at higher risk of developing lupus or other autoimmune diseases later in life?,Are there any activity restrictions my child should follow as they grow up?
Common questions about Neonatal lupus erythematosus
What is Neonatal lupus erythematosus?
Neonatal lupus erythematosus (NLE), also called neonatal lupus syndrome, is a rare condition that affects newborn babies. It occurs when certain antibodies from the mother cross the placenta during pregnancy and affect the developing baby. These antibodies, known as anti-Ro/SSA and anti-La/SSB, are found in mothers who may have lupus, Sjögren syndrome, or sometimes no known autoimmune disease at all. The mother may not even know she carries these antibodies until her baby is diagnosed. The most common signs of neonatal lupus include a skin rash that often appears on the face and scalp, and he
How is Neonatal lupus erythematosus inherited?
Neonatal lupus erythematosus follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Neonatal lupus erythematosus typically begin?
Typical onset of Neonatal lupus erythematosus is neonatal. Age of onset can vary across affected individuals.
Which specialists treat Neonatal lupus erythematosus?
23 specialists and care centers treating Neonatal lupus erythematosus are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.