Patient perspectives on hemolytic disease of the fetus and newborn and fetal and neonatal alloimmune thrombocytopenia: common experiences and insights.

INTRODUCTION: Hemolytic disease of the fetus and newborn (HDFN) and fetal and neonatal alloimmune thrombocytopenia (FNAIT) are two rare alloimmune diseases of pregnancies where maternal alloantibodies target fetal blood components, potentially leading to risks of serious health conditions and developmental delays for babies, and sometimes loss of the baby. HDFN and FNAIT often have similarly complex journeys, from diagnosis through to burdensome treatments such as intrauterine transfusions and intravenous immunoglobulin.

OUR STORIES: We, the authors, are two mothers with lived experience of these conditions; here, we present our perspectives and insights to raise awareness and to share encouragement with other mothers. Although our experiences of diagnoses and treatments differed, our shared perspectives of HDFN, FNAIT, and alloimmunization collectively highlight the importance of early recognition, multidisciplinary coordination, compassionate communication, and increased provider education about these rare conditions. While we were both fortunate to have access to diagnostics, monitoring, and specialized therapies, we know that many mothers do not have access to such resources. Our shared experiences also highlight the emotional and mental health impacts of pregnancies with prolonged high risk, maternal-infant separation, and intensive treatments requiring us to leave our families at home while we attended appointments and hospital stays. This extended treatment burden also affects ability to work and impacts healthcare costs, and there is a critical need to integrate psychosocial support alongside medical management to meaningfully improve the patient experience.

DISCUSSION AND REFLECTIONS: Despite these stresses, medical progress continues to be made, and we can say from experience that there was opportunity for hope and joy along the way in our pregnancies and in the births of our sons, who are now happy and thriving.