A study recently published in Children found notable variation in patient-reported disease trajectories in pregnancies at risk for hemolytic disease of the fetus and newborn (HDFN) throughout the United States (U.S.).
“This is a unique glimpse into disease management and outcomes in U.S. alloimmunized pregnancies spanning across treatment centers” the authors wrote.
Due to the rarity of HDFN, many healthcare practitioners have limited experience diagnosing and managing the disease. Likewise, research on HDFN is restricted by the number of individuals impacted by the condition. Many of the studies that do exist are from referral centers that have substantial experience with HDFN, which may not be representative of experiences in the U.S. as a whole.
To address this gap in knowledge, the authors formed a multidisciplinary team of patients, researchers and clinicians to develop a survey to assess disease severity, management and outcomes. This survey was electronically administered to adults throughout the U.S. who had a history of alloimmunized pregnancy.
Read more about the care team for HDFN
The study included 127 patients representing 200 alloimmunzed pregnancies. Of the 192 pregnancies for which the type of maternal antibody was known, 80 were affected by multiple antibodies.
The anti-K antibody was most commonly reported in pregnancies with one antibody, followed by anti-E and anti-D. Maternal antibodies reached critical levels, or levels indicating a heightened risk of HDFN, in 71% of pregnancies.
In general, weekly ultrasounds were performed after critical levels were reached. In pregnancies where the fetus carried the antigen against which the maternal antibodies were produced, interventions varied widely, with some patients receiving multiple treatments. These included intrauterine transfusions (40%), corticosteroids (50%), intravenous immunoglobulin (14%), therapeutic plasma exchange (7%) and treatment with the drug phenobarbital (9%).
The most commonly reported complications were anemia (29%), fluid buildup in the abdomen (5%) and hydrops fetalis (2.1%). Additionally, severe HDFN was identified in 18% of all pregnancies in the study. There were 11 fetal deaths in the sample, 10 of which were attributed to HDFN.
What is hydrops fetalis?
Hydrops fetalis is a symptom of an underlying medical condition that affects an unborn baby and can occur with HDFN. In this condition, large amounts of fluid accumulate in the baby’s tissues or organs. If it remains untreated, this abundance of fluid can place stress on the fetal heart and other vital organs.
“Obstetric, maternal fetal, neonatal and hematology teams must closely follow these pregnancies through collaborative cross-discipline management to ensure consistent diagnosis, monitoring, and the best possible outcomes for this very treatable disease,” the authors concluded.
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