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Research Update: What Do Outcomes Look Like at School Age After Neonatal Seizures?

January 29th, 2026  | News  | Research

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Families impacted by hypoxic ischemic encephalopathy (HIE) and other newborn brain injuries often live with long timelines of uncertainty. One of the most common questions we hear is: What will life look like when my child is older?

A newly published multicenter study from the Neonatal Seizure Registry offers important, long-term insight by examining neurodevelopmental outcomes at ages 5–6 for children who experienced acute provoked neonatal seizures, including those related to HIE. Hope for HIE has been a proud partner of NSR since 2019, and many Hope for HIE families continue to participate in NSR studies.

This study goes beyond infancy and early toddlerhood—where much of the existing data stops—and looks at how children are functioning as they enter school. This study concept and design was co-produced with researchers and patient-families to ensure its relevance and importance to the population studied, as with all NSR projects.

The figure below describes the NSR cohort and participation in the suite of NSR studies. Attrition is common, and a call for the importance to families and communities to continue participation to enhance knowledge and close data gaps. We are grateful to the families who continue to ensure the unmet needs and unaswered questions are possible to study.

Study at a Glance

• Who was studied:
  164 children from nine U.S. centers with EEG-confirmed acute neonatal seizures (nearly half related to HIE)
• When outcomes were assessed:
  Comprehensive evaluations at 5–6 years of age
• What was measured:
  Cognition, adaptive skills, behavior, executive function, autism traits, sensory processing, epilepsy, cerebral palsy (CP), and school placement
• How results were analyzed:
  Researchers used a person-centered approach (latent class analysis) to identify patterns of outcomes, rather than focusing on single diagnoses

What The Study Wanted to Know

Most prior studies stop in infancy or early toddlerhood, focus narrowly on motor outcomes, or rely on single diagnoses. This multicenter study from the Neonatal Seizure Registry set out to answer a more meaningful question: What patterns of neurodevelopmental outcomes emerge by early school age (5–6 years), and what—if anything—predicts them?

What The Study Found

When outcomes were viewed across domains—not as single diagnoses—nearly two-thirds of families reported behavioral, executive-function, attention, or sensory concerns by early school age, even when early development appeared reassuring.

Commonly cited neonatal markers (seizure burden, EEG patterns, MRI findings, or seizure etiology including HIE) did not reliably predict behavioral dysregulation, underscoring how easily these challenges can be missed without long-term follow-up.

What This Means and Why It Matters

This study reinforces several critical truths for the HIE and neonatal seizure community:

• Early reassurance is not the same as long-term certainty
  Children can meet early milestones and still struggle later with attention, regulation, executive function, or sensory processing.
• Behavioral and sensory outcomes are central—not secondary
  These challenges affect learning, relationships, emotional health, and school success and deserve early identification and support.
• All children with a history of neonatal seizures need follow-up beyond infancy
  Especially around school entry, when subtle challenges become more visible.
• Families are not imagining these concerns
  This research validates lived experience and underscores the importance of listening to parents.

For families, this data can be both reassuring and empowering: many children do well in core areas of development, and it is appropriate to advocate for screening, supports, and accommodations when concerns arise.

For clinicians and systems of care, the message is clear:

• All children with a history of neonatal seizures—including those who appear to be developing typically—should receive behavioral, executive-function, and sensory screening prior to school entry and beyond.
• "Typical Development" is not appropriate to describe children with neurocognitive and behavioral impacts. This can and does restrict families and children from getting necessary support, being heard, and supported.

For Hope for HIE, this study reinforces why long-term, family-centered follow-up and honest, nuanced communication matter—and why behavioral outcomes must be treated as central, not secondary, when we talk about HIE's impact later in childhood.

RESOURCES

• Neonatal Seizure Registry
• Child Mind Institute
• Understood.org
• NCLD

Citation: Glass HC, Numis AL, Soul JS, Wusthoff CJ, Lemmon ME, Benedetti GM, Chu CJ, Massey SL, Thomas C, Anwar T, Sturza J, Berl MM, Li Y, Rogers EE, Rau S, Gidley Larson JC, Guerrero JL, Franck LS, McCulloch CE, Shellhaas RA. Profiles and Predictors of Neurodevelopmental Outcome at 5-6 Years in Children With a History of Acute Provoked Neonatal Seizures. Annals of Neurology. 2026 Jan 3.
doi: 10.1002/ana.78100. PMID: 41482857.

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