Overview
Immune hydrops fetalis is a serious condition that affects unborn babies (fetuses) and newborns. It occurs when the mother's immune system produces antibodies that attack the baby's red blood cells, causing severe anemia (very low red blood cell count). This happens because of a mismatch between the mother's and baby's blood types, most commonly involving the Rh factor (also called Rh incompatibility or Rh disease). When the baby's red blood cells are destroyed faster than they can be replaced, the baby becomes severely anemic. This leads to heart failure and a dangerous buildup of fluid in the baby's body tissues and organs — a condition called hydrops fetalis. The fluid can collect in the abdomen, around the lungs, around the heart, and under the skin, causing widespread swelling. Symptoms in the baby include severe swelling all over the body, difficulty breathing, pale skin, enlarged liver and spleen, and jaundice (yellowing of the skin). Without treatment, immune hydrops fetalis can be life-threatening. However, modern medicine has made significant progress in both preventing and treating this condition. Prevention through Rh immunoglobulin (RhoGAM) injections given to Rh-negative mothers during pregnancy has dramatically reduced the occurrence of this disease. When it does occur, treatments include intrauterine blood transfusions (giving blood to the baby while still in the womb), early delivery when appropriate, and exchange transfusions after birth. With timely diagnosis and treatment, outcomes have improved significantly compared to past decades.
Also known as:
Key symptoms:
Severe swelling of the baby's entire bodyFluid buildup in the baby's abdomen (ascites)Fluid around the baby's lungsFluid around the baby's heartSevere anemia (very low red blood cell count)Pale or yellowish skinEnlarged liverEnlarged spleenDifficulty breathing at birthSevere jaundice after birthHeart failure in the babyPoor feedingLethargy or low energy in the newbornThickened placenta seen on ultrasound
Sporadic
Usually appears on its own, not inherited from a parent
Neonatal
Begins at or shortly after birth (first 4 weeks)
FDA & Trial Timeline
2 eventsShanghai General Hospital, Shanghai Jiao Tong University School of Medicine
NHS Greater Glasgow and Clyde — NA
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Immune hydrops fetalis.
View clinical trials →Clinical Trials
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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 Immune hydrops fetalis.
Community
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Caregiver Resources
NORD Caregiver Resources
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Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
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Questions for your doctor
Bring these to your next appointment
- Q1.What specific antibody is causing the problem, and how does this affect treatment options?,How often will my baby need monitoring and possible transfusions during pregnancy?,Is intrauterine transfusion available at this hospital, or will I need to be referred to a specialized center?,What are the risks of intrauterine transfusion for me and my baby?,What is the plan for timing and method of delivery?,What long-term follow-up will my baby need after birth?,How will this affect future pregnancies, and what can be done to prevent it from happening again?
Common questions about Immune hydrops fetalis
What is Immune hydrops fetalis?
Immune hydrops fetalis is a serious condition that affects unborn babies (fetuses) and newborns. It occurs when the mother's immune system produces antibodies that attack the baby's red blood cells, causing severe anemia (very low red blood cell count). This happens because of a mismatch between the mother's and baby's blood types, most commonly involving the Rh factor (also called Rh incompatibility or Rh disease). When the baby's red blood cells are destroyed faster than they can be replaced, the baby becomes severely anemic. This leads to heart failure and a dangerous buildup of fluid in th
How is Immune hydrops fetalis inherited?
Immune hydrops fetalis follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Immune hydrops fetalis typically begin?
Typical onset of Immune hydrops fetalis is neonatal. Age of onset can vary across affected individuals.
Which specialists treat Immune hydrops fetalis?
6 specialists and care centers treating Immune hydrops fetalis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.