Overview
Neonatal antiphospholipid syndrome (neonatal APS) is a very rare blood clotting disorder that affects newborn babies. It occurs when antibodies called antiphospholipid antibodies, which are passed from the mother to the baby during pregnancy, cause abnormal blood clots to form in the baby's blood vessels. These antibodies are typically present in mothers who have antiphospholipid syndrome themselves, though sometimes the mother may not yet be diagnosed. The antibodies cross the placenta and enter the baby's bloodstream, where they can trigger clotting problems. In affected newborns, blood clots can form in veins or arteries throughout the body, potentially affecting the brain, kidneys, skin, and other organs. Symptoms may include stroke-like episodes, skin discoloration or rash (livedo reticularis), low platelet counts (thrombocytopenia), and organ damage depending on where clots form. Some babies may also have low blood cell counts or signs of inflammation. Treatment focuses on managing blood clots and preventing new ones from forming. Because the maternal antibodies gradually clear from the baby's system over weeks to months, the condition is often self-limiting. However, prompt treatment with blood-thinning medications (anticoagulants) may be necessary to prevent serious complications such as stroke or organ damage. Close monitoring in a neonatal intensive care unit is typically required. The long-term outlook depends largely on whether significant organ damage occurred before treatment was started.
Key symptoms:
Blood clots in veins or arteriesStroke or stroke-like symptoms in the newbornSkin discoloration with a net-like or mottled patternLow platelet count causing easy bruising or bleedingSeizuresKidney problemsPoor feedingBreathing difficultiesSwelling in affected limbsBluish or purplish skin patchesLow blood cell counts (anemia)Organ damage from blocked blood flow
Sporadic
Usually appears on its own, not inherited from a parent
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Neonatal antiphospholipid syndrome.
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Rare Disease Specialist
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 antiphospholipid syndrome.
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Questions for your doctor
Bring these to your next appointment
- Q1.Were blood clots found in my baby, and if so, where in the body?,Has my baby experienced any brain injury or stroke, and what are the expected long-term effects?,How long will my baby need blood-thinning medication?,How often do we need follow-up blood tests and imaging?,What signs of complications should I watch for at home?,Will my baby need developmental therapy or early intervention services?,If I have another pregnancy, what can be done to reduce the risk for the next baby?
Common questions about Neonatal antiphospholipid syndrome
What is Neonatal antiphospholipid syndrome?
Neonatal antiphospholipid syndrome (neonatal APS) is a very rare blood clotting disorder that affects newborn babies. It occurs when antibodies called antiphospholipid antibodies, which are passed from the mother to the baby during pregnancy, cause abnormal blood clots to form in the baby's blood vessels. These antibodies are typically present in mothers who have antiphospholipid syndrome themselves, though sometimes the mother may not yet be diagnosed. The antibodies cross the placenta and enter the baby's bloodstream, where they can trigger clotting problems. In affected newborns, blood clo
How is Neonatal antiphospholipid syndrome inherited?
Neonatal antiphospholipid syndrome follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Neonatal antiphospholipid syndrome typically begin?
Typical onset of Neonatal antiphospholipid syndrome is neonatal. Age of onset can vary across affected individuals.
Which specialists treat Neonatal antiphospholipid syndrome?
4 specialists and care centers treating Neonatal antiphospholipid syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.