The study, led by Ceilidh Smith and Mohamed El-Dib of the Division of Newborn Medicine at Mass General Brigham for Children, together with colleagues at Perkins School for the Blind, Boston Children’s Hospital, and Massachusetts Eye & Ear, set out to map how neonatal clinicians actually think about CVI risk. Rather than beginning with a new diagnostic device, the team began with a diagnostic question aimed at the system itself: when a baby in the NICU carries clear neurological risk factors for later visual impairment, does anyone notice, stratify that risk, refer the child onward, and tell the family what to watch for? The answer, drawn from a survey of NICU providers, was a qualified and troubling no.

The findings reveal a striking asymmetry. On one hand, providers demonstrated genuine familiarity with the established risk factors for CVI. These are well catalogued in the pediatric literature: extreme prematurity and very low birth weight, periventricular leukomalacia, germinal matrix-intraventricular hemorrhage, hypoxic-ischemic encephalopathy treated with therapeutic hypothermia, neonatal stroke, particularly stroke involving the posterior cerebral artery territory that supplies the visual cortex, bacterial meningitis, and prenatal exposures to substances such as alcohol and cocaine. Each of these conditions can damage the posterior visual pathways, the occipital cortex and its white-matter connections, or the broader networks that support visual attention and processing, even when the anterior structures of the eye remain perfectly healthy.

On the other hand, when it came to translating that knowledge into consistent clinical action, the survey exposed considerable variability. Providers differed in how they stratified risk, meaning two infants with essentially identical neurological histories might be flagged for visual follow-up by one clinician and overlooked by another. Referral practices were similarly inconsistent, with no shared threshold determining when a baby should be sent for ophthalmological or neurodevelopmental evaluation of visual function. And communication with families, arguably the most consequential step of all, showed the widest spread: some providers discussed CVI risk with parents in detail, others mentioned it only in passing, and some did not raise it at all during the NICU admission.

The technical heart of the problem lies in what CVI actually is. Unlike ocular blindness, which can often be detected by examining the retina, lens, or optic nerve, CVI is a disorder of visual processing. A child with CVI may have normal acuity on a standard eye chart yet struggle profoundly with visual attention, visual memory, recognizing faces or objects in cluttered environments, navigating complex scenes, or interpreting motion. The NIH-sponsored working definition published in Ophthalmology in 2024 by Myoung Yoon Chang and Lotfi Merabet, one of the coauthors of the new study, emphasized exactly this: CVI is a spectrum of higher-order visual deficits arising from damage to or dysfunction of the brain’s visual pathways and processing networks. Because these deficits are behavioral and functional rather than structural at the level of the eye, they are notoriously difficult to detect in a newborn who cannot report what she sees.

That difficulty is compounded by the natural history of the developing brain. Visual function in neonates is assessed through subtle behavioral responses, such as fixation, tracking of a face or high-contrast target, and orientation to light, using tools developed for term and preterm infants by researchers including Daniela Ricci and colleagues, and structured frameworks such as the Neonatal Assessment Visual European Grid, or NAVEG. But many infants at risk for CVI look deceptively normal in the first weeks of life. Visual behaviors may emerge late, be fragmented, or be masked by the general immaturity of a preterm infant’s nervous system. Epidemiological work from the United Kingdom by Teoh, Solebo, and Rahi has documented shifts in the causes of severe childhood visual impairment, with cerebral causes now dominating, and studies of very preterm and very low birth weight children by Geldof and colleagues have shown that cerebral visual dysfunction is common even in children who pass basic eye examinations.

The consequences of missing this window are not trivial. Early intervention matters for the developing visual brain. Research on early visual training and environmental adaptation, including work by Elisa Fazzi and colleagues, and international clinical practice guidelines for early intervention in infants at high risk of cerebral palsy, published in JAMA Pediatrics by Catherine Morgan and colleagues, converge on the principle that the first months and years of life represent a period of heightened neuroplasticity during which targeted stimulation and environmental modification can meaningfully shape developmental trajectories. A child whose CVI is recognized at age four, after years of unexplained difficulties with visual attention and learning, has missed years of adapted teaching, high-contrast materials, controlled visual environments, and parent coaching that could have been deployed from infancy. Data from Cincinnati Children’s Hospital presented at the Association for Research in Vision and Ophthalmology documented delays in timely CVI diagnosis even within a specialized pediatric ophthalmology division, underscoring that the gap is systemic rather than confined to any single institution.

What the Boston team proposes, therefore, is not a new test but a new structure. Their analysis points toward a standardized, risk-based clinical practice guideline for the NICU: a framework in which specific diagnoses and imaging findings automatically trigger defined levels of CVI risk stratification, standardized documentation, predetermined referral pathways to pediatric ophthalmology and neurodevelopmental services, and scripted, developmentally appropriate conversations with families about what CVI is, what signs to watch for after discharge, and how to advocate for assessment. The model mirrors what neonatology has already achieved for hearing, where universal screening and risk-based protocols have largely eliminated the era of late-discovered congenital deafness, and for retinopathy of prematurity, where scheduled examinations are standard of care. Vision, paradoxically, has lagged behind, perhaps because the eye itself so often appears normal.

The survey-based nature of the study, conducted as a quality improvement project at a single academic center, means the findings describe one institution’s landscape rather than a national measurement, and the authors are careful to frame their work as identifying gaps rather than quantifying their full extent. But the pattern they describe is consistent with a broader literature: consensus practice guides from the United Kingdom led by Robert Pilling and multidisciplinary referral guidelines from the Netherlands by F. N. Boonstra and colleagues have both emphasized that CVI care is fragmented, that assessment tools vary widely, and that families frequently report long, frustrating journeys to diagnosis. A clinical report from the American Academy of Pediatrics by Susan Lehman, Lan Yin, and Myoung Chang in 2024 similarly called for earlier recognition and coordinated care for children with CVI.

The deeper significance of this study may lie in its reframing of whose job it is to notice CVI. For decades, the condition has been treated as a diagnosis of later childhood, something a developmental ophthalmologist or a teacher of the visually impaired would eventually identify. By locating the starting point in the NICU, among the neonatologists, nurses, and nurse practitioners who care for the highest-risk infants during the very days when their brains are injured, the Boston group shifts CVI from a rare subspecialty concern to a routine quality metric of neonatal care. The work was supported by the Marcia and Louis Kamentsky CVI Research Fund, and its practical orientation, down to acknowledgments of the nursing staff who helped implement a clinical practice guideline, signals that the authors intend the change to be operational, not merely academic. If standardized risk stratification spreads beyond a single center, the thousands of infants discharged each year after hypoxic-ischemic encephalopathy, severe intraventricular hemorrhage, or extreme prematurity could leave the hospital not only with a corrected weight and a feeding plan, but with a clear-eyed account of their visual future and a pathway to catch problems while the brain is still at its most adaptable.

Subject of Research: Recognition of cerebral/cortical visual impairment risk in neonatal intensive care units

Article Title: Identifying and addressing gaps in recognition of cerebral/cortical visual impairment risk in the NICU

Article References: Smith, C., El-Shibiny, H., Smith, L., Erdei, C., Patrizi, S., Heidary, G., Merabet, L. B., & El-Dib, M. (2026). Identifying and addressing gaps in recognition of cerebral/cortical visual impairment risk in the NICU. Pediatric Research. https://doi.org/10.1038/s41390-026-05456-9

Image Credits: AI Generated

DOI: 10.1038/s41390-026-05456-9

Keywords: cerebral visual impairment, CVI, NICU, neonatology, preterm infants, hypoxic-ischemic encephalopathy, visual processing, pediatric ophthalmology, clinical practice guideline, early intervention, neurodevelopment, brain injury