Introduction: Women with an inherited bleeding disorder (IBD) are at an increased risk of developing iron deficiency with or without anemia due to iron loss from bleeding. This risk is further increased during pregnancy, as pre-existing low iron stores are further depleted. Iron deficiency anemia during pregnancy can lead to increased risk of adverse fetal and neonatal outcomes, including premature birth, low birth weight, fetal growth restriction, and impaired infant neurodevelopment (Benson, A. E., et al. European journal of haematology, 109(6), 633-642. and Georgieff, M. K. International Journal of Gynecology & Obstetrics, 162, 83-88.)

Purpose: To evaluate the prevalence of iron deficiency in pregnant women with IBDs.

Methods: This was a single center retrospective study using data from the Utah Center for Bleeding & Clotting Disorders (UCBCD) Registry. The UCBCD Registry is a clinical patient database housed within Epic electronic health records (EHR). It includes accurate demographic, phenotypic, and laboratory data of all persons with a confirmed diagnosis of an inherited bleeding disorder seen at the UCBCD, the only federally funded adult hemophilia treatment center (HTC) in Utah. We included pregnant women with a confirmed diagnosis of hemophilia A or B, hemophilia carrier status, or von Willebrand disease, seen at the UCBCD between November 2013 and July 2025. Anemia was defined as hemoglobin <12.6 g/dL and iron deficiency was defined as a ferritin <30 ng/mL. This study was approved by the University of Utah institutional review board.

Results:

A total of 168 pregnancies among 106 women with IBDs were included in the study. Of these, 53% (n=90) had ferritin levels checked at least once during pregnancy. Ferritin was least frequently assessed in the first trimester, with only 19.6% (n=33) of women with IBD having available data. In contrast, ferritin was measured more consistently in the second and third trimesters, with 34.5% (n=58) and 35.7% (n=60) of women with IBD, respectively, undergoing ferritin evaluation during those periods.

Overall, iron deficiency was identified in 41.0% (n=69) of the 168 pregnancies. This corresponds to a prevalence of iron deficiency of 76.6% among those who had at least one ferritin level checked (n=90). Of those 69 individuals with IBD who were iron deficient, 31.5% (n=53) were anemic.

Iron supplementation was administered in 57.7% (n=97) of pregnancies. Data on the type of iron supplementation (oral vs intravenous infusion) were not consistently documented in the EHR.

Conclusion: Iron deficiency in pregnant women with IBD is a common, yet underdiagnosed health concern. Only half of pregnant women with IBD were evaluated for iron deficiency during their pregnancy, reflecting a missed opportunity for early detection and intervention. Iron deficiency anemia poses significant risk for adverse maternal and perinatal outcomes (Smith, C., Teng, F., Branch, E., Chu, S., & Joseph, K. S. (2019). Maternal and perinatal morbidity and mortality associated with anemia in pregnancy. Obstetrics & Gynecology, 134(6), 1234-1244). These results strongly support the need for review of current clinical protocols surrounding screening practices for iron deficiency in pregnant women with IBDs, with the aim of improving maternal and perinatal morbidity in this vulnerable population.

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2025
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