Mothers of children with fetal/neonatal alloimmune thrombocytopenia (FNAIT) develop significant psychological distress Free

Background: Fetal and neonatal alloimmune thrombocytopenia (FNAIT) is a rare maternal-fetal disorder, resulting from parental platelet antigen (HPA) incompatibility and maternal alloimmunization. Approximately 80% of cases are due to HPA-1a incompatibility. Clinical manifestations range from asymptomatic thrombocytopenia, petechiae and bruising, to intracranial hemorrhage (ICH). FNAIT studies have focused on management of bleeding and antenatal treatment of subsequent pregnancies. Maternal issues are generally overlooked. We recently reported for the first time that over 50% of mothers with FNAIT had psychological symptoms lasting >6 weeks. The severity, time of onset, and duration of these symptoms are not known, as is their exact relationship to FNAIT and whether they pre-existed FNAIT.

Methods: This cross-sectional follow-on survey evaluated psychological symptoms in mothers of children who had been diagnosed with FNAIT. The study received institutional review board approval by Weill Cornell Medicine and was offered to members of NAITbabies, an organization of FNAIT-affected families, via Qualtrics. Responses were de-identified. The survey included demographic and clinical information and focused on the 5 most frequent psychological symptoms from the 1^st survey (McFarland 2025). For stress, mood changes, and sleep disturbances, mothers were asked if symptoms were associated with FNAIT, and their time of onset and duration. For depression and anxiety, validated clinical screening tools were used: the Quick Inventory of Depressive Symptomatology Self-Report (QIDS-SR) and the General Anxiety Disorder 7-item (GAD-7) screen. For all the above, mothers were instructed to answer based on their experiences with their first live child affected by FNAIT. For post-traumatic stress disorder (PTSD), we used the Posttraumatic Diagnostic Scale Self-Report Version for DSM-5 (PDS-5). Data were analyzed using Microsoft Excel 365 and GraphPad Prism 10.

Results: 78.7% (159/202) had psychological symptoms >6 weeks, with stress (92%), mood changes (81%), and sleep disturbances (64%) as the most frequently reported symptoms. For mothers implicating their FNAIT diagnosis, stress was the most frequent. 65% (47/72) of mothers reported the onset of stress immediately after birth of an FNAIT-affected child, with 87% (63/72) reporting symptoms starting ≤1 month postpartum. 70% (45/64) reported their stress lasted for >1 year. 55 affirmed FNAIT-related mood changes, with 39% (18/46) reporting onset at birth, 15% (7/46) within 1 month postpartum and 28% (13/46) within 1 year; 41% (19/46) reported the onset of mood changes >1 month from birth and 76% (31/41) mood changes lasting >1 year. FNAIT-related sleep disturbances began immediately following birth in 55% (22/40), with 22.5% (9/40) reporting onset >1 month postpartum, and 82% (32/39) reporting symptoms lasting >1 year. Of 116 mothers completing the GAD-7 tool, 50% (58/116) met the cutoff for generalized anxiety disorder. 25% (28/112) of mothers completing the QIDS-SR tool met the cutoff for depression. Lastly, 23% (26/112) screened positive for PTSD. No significant differences were identified between mothers whose children had ICH vs. those who did not.

Conclusions: This cross-sectional survey study confirms that mothers of children affected with FNAIT develop significant FNAIT-related psychological distress. Depending on the symptom, onset was seen mostly, but not entirely, soon after birth, and for many lasted over 1 year. All of stress, sleep disturbances, anxiety, depression, mood changes, and PTSD contribute to this psychological distress. This was found even when the child did not experience ICH. While some of these symptoms are “common” in the postpartum period, their prevalence, severity, and, in some cases, chronicity, was substantially greater than expected and should not be attributed to typical postpartum challenges. These data suggest the need for multidisciplinary support for mothers of children affected with FNAIT starting soon after diagnosis. Additionally, prevention of FNAIT itself would dramatically decrease resultant psychological distress and optimally could be accomplished by routine platelet antigen HPA-1a screening in all women early in pregnancy combined with administration of prophylaxis in high-risk women to prevent HPA-1a sensitization.