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Abstract Objective Among neonates with acute symptomatic seizures, we evaluated whether the inability to take full feeds at the time of hospital discharge from neonatal seizure admission is associated with worse neurodevelopmental outcomes, after adjusting for relevant clinical variables. Methods This prospective, nine‐center study of the Neonatal Seizure Registry (NSR) assessed characteristics of infants with seizures, including evidence of brainstem injury on magnetic resonance imaging (MRI), mode of feeding upon discharge, and developmental outcomes at 12, 18, and 24 months. The inability to take oral feeds was identified through a review of medical records. Brainstem injury was identified through a central review of neonatal MRIs. Developmental outcomes were assessed with the Warner Initial Developmental Evaluation of Adaptive and Functional Skills (WIDEA‐FS) at 12, 18, and 24 months corrected age. Results Among 276 infants, inability to achieve full oral feeds was associated with lower total WIDEA‐FS scores (160.2 ± 25.5 for full oral feeds vs. 121.8 ± 42.9 for some/no oral feeds at 24 months, p

Abstract Objective We aimed to characterize (1) the caregiver experience of learning about sudden unexpected death in epilepsy (SUDEP), and (2) caregiver preferences for SUDEP risk disclosure. Methods We distributed a 24‐question survey to caregivers of children with epilepsy. Free text questions were analyzed using a rapid qualitative analysis approach. Results Two hundred and twelve caregivers of people with epilepsy completed the survey, including 12 bereaved caregivers. Caregivers' children had a high seizure burden, with a median seizure frequency of 24 seizures per year (range: 1 to ≥100). Most participants were aware of SUDEP at the time of the survey (193/212; 91%) though only a minority had learned about SUDEP from a healthcare provider (91/193; 47.2%). Caregivers typically learned about SUDEP from a nonprofit or online source (91/161; 56.5%). Almost all caregivers wanted to discuss SUDEP with their child's healthcare provider (209/212; 98.6%), and preferred disclosure from epileptologists (193/212; 91%), neurologists (191/212; 90.1%), and/or primary care providers (98/212; 46.2%). In open‐ended responses, caregivers highlighted the value of learning about SUDEP from a healthcare provider, the importance of pairing SUDEP risk disclosure with a discussion of how to mitigate risk, and the need for educational resources and peer support. Interpretation Caregivers of people with epilepsy appreciate when healthcare providers disclose information about SUDEP, yet typically hear about SUDEP elsewhere. These findings underscore the importance of interventions to improve and support SUDEP risk disclosure. Future work should evaluate strategies to disclose SUDEP risk and the impact of early SUDEP risk disclosure.