For many infants who later develop cerebral visual impairment, some of the most important risk factors are already known before they leave the neonatal intensive care unit. Premature birth, neurological injury, seizures, stroke, and other conditions can place an infant at increased risk, yet there has been no standardized approach for translating that risk into consistent CVI follow-up.
New work from Mass General Brigham examines whether the NICU can become an earlier point of recognition. Rather than waiting until visual difficulties become more obvious later in childhood, researchers developed a clinical practice guideline intended to identify infants at increased risk for cerebral visual impairment and connect them with appropriate ophthalmologic, developmental, and vision-specific follow-up.
Why Cerebral Visual Impairment Can Be Missed Early
Cerebral visual impairment, or CVI, is a brain-based visual disorder in which damage or differences in the brain affect how visual information is processed. Unlike visual impairment caused primarily by the eyes, CVI involves visual pathways and processing areas within the brain.
Its effects can also look very different from one child to another. A child may have difficulty recognizing faces, finding objects in visually busy environments, navigating unfamiliar spaces, or interpreting complex visual scenes even when the eyes appear structurally healthy.
These differences are not always easy to recognize during infancy because many become more apparent as a child's visual world grows more complex. This can contribute to CVI being identified only after developmental or functional vision difficulties become more noticeable.
CVI is now recognized as a major cause of childhood visual impairment in higher-income countries, while significant under-recognition remains. Perkins School for the Blind estimates that more than 180,000 children in the United States may have CVI, with many not receiving a diagnosis.
The NICU Offers an Earlier Opportunity
Many children at risk for CVI begin life with medical histories that already warrant close neurological and developmental follow-up. Risk factors described by the researchers include premature birth, white matter brain injury, intraventricular hemorrhage, hypoxic-ischemic encephalopathy, neonatal seizures, stroke, central nervous system infections, and certain genetic or metabolic disorders.
Because these conditions are often identified during neonatal care, the NICU may provide an opportunity to recognize CVI risk before families begin noticing specific visual behaviors at home. This makes the NICU an important potential point for arranging appropriate follow-up rather than waiting for functional difficulties to emerge later.
Identifying an infant as being at increased risk for CVI is not the same as diagnosing the condition before discharge. Instead, recognizing risk can give clinicians and families a reason to include vision-specific follow-up within the child's broader developmental care plan.
Clinicians Recognized the Risk, but Follow-Up Varied
To better understand existing practice, investigators surveyed 62 health care professionals working in the Level III NICU at Brigham and Women's Hospital. Participants included physicians, nurses, and allied health professionals.
Most respondents were familiar with CVI and recognized important neurological risk factors. The greater challenge was deciding what should happen once an infant was identified as potentially being at increased risk.
Approaches to risk assessment, referral, and communication with families varied considerably. Ninety-five percent of respondents reported that they did not routinely discuss CVI risk with families, while many also reported limited confidence in estimating risk or explaining the condition to parents and caregivers.
Among physician respondents, fewer than half reported knowing exactly what steps to take when CVI risk was suspected. The gap therefore extended beyond awareness of the condition and into the practical processes needed to connect neurological risk with follow-up care.
Turning Risk Factors Into a Clinical Pathway
The research team responded by developing a multidisciplinary clinical practice guideline for infants considered at increased risk for CVI. The goal is to reduce variation in care by translating recognized neurological risk factors into clearer clinical actions.
One of the guideline's central recommendations is a comprehensive ophthalmologic evaluation within the first six months of life, when visual function can be assessed more reliably. It also encourages referrals to developmental services and vision-specific supports when those services are appropriate for the child.
Family communication is another important part of the pathway. Educational materials and structured talking points were developed so clinicians can explain CVI risk, the purpose of follow-up, and what families may need to watch for after leaving the NICU.
Together, these steps are intended to reduce the variation that can occur when individual clinicians must determine referral and communication practices without a shared protocol. They also make vision follow-up a more visible part of the transition from neonatal care to ongoing developmental care.
Early Implementation Focused on Keeping Infants Connected to Care
The team also addressed practical barriers that can appear after NICU discharge. A tracking database, electronic medical record prompts, and streamlined appointment scheduling were introduced to help identify eligible infants and reduce the possibility that recommended follow-up would be lost during the transition home.
During the first five months of implementation, 45 infants met the guideline's eligibility criteria. After accounting for infants who transferred, relocated, were already receiving appropriate follow-up, or died during hospitalization, 39 infants were successfully scheduled for follow-up evaluations.
Researchers also reported increased awareness of CVI among NICU clinicians and more frequent discussion of CVI risk during patient care. These early implementation findings suggest that a structured pathway can change how infants at risk are identified and connected with follow-up.
The results should not yet be interpreted as evidence that the guideline improves long-term visual or developmental outcomes. Further study is needed to determine whether the approach leads to earlier confirmed CVI diagnosis, greater completion of referrals, or measurable changes in children's developmental progress.
Why Earlier Recognition Could Matter
Early childhood is a period of rapid neurological development, making timely recognition of visual needs particularly important. When a child has CVI, earlier identification may allow families, vision professionals, developmental specialists, and educators to begin adapting the child's environment and support strategies sooner.
Earlier recognition of risk may also influence how later visual behaviors are interpreted. An infant with a significant neurological history may need assessment that extends beyond ocular health alone, particularly if caregivers later report difficulty with visual attention, recognition, navigation, or visually complex environments.
This is one reason CVI should not be treated as interchangeable with other forms of pediatric visual impairment. A child's eyes can appear healthy while the brain has difficulty processing or interpreting the visual information those eyes receive.
For a broader introduction to the condition, Good-Lite's article What is Cortical Visual Impairment CVI explains common causes, signs, and the distinction between ocular and brain-based visual impairment.
Tools for Assessing Early and Functional Vision
Children referred for follow-up may need assessment methods that go beyond conventional letter or symbol acuity, particularly when they are infants, very young children, or cannot reliably respond to standard testing. Preferential-looking, low-contrast, and functional vision tools can help clinicians gather information about different aspects of visual function as part of a broader professional evaluation.
These tools do not diagnose cerebral visual impairment on their own. Instead, they can support assessment of visual behavior, detection acuity, contrast sensitivity, and early visual engagement alongside ophthalmologic, neurological, and developmental evaluation.
Vision & Sensory Assessment Kit
Supports assessment of visual engagement and sensory processing in premature infants and young children using a collection of functional vision tools.
Paddles: LEA GRATINGS® a Preferential Looking Test
Provides a nonverbal preferential-looking method for assessing detection acuity in infants, children, and people with developmental or communication disabilities.
Cards: Hiding Heidi® Low Contrast Face Test
Assesses detection of low-contrast facial information that can be relevant to early visual communication and functional vision assessment.
Standardizing the Transition From Risk to Follow-Up
The Mass General Brigham work addresses a practical problem that exists well before a definitive CVI diagnosis. Clinicians may already know which infants have neurological risk factors but still lack a consistent process for discussing that risk, arranging vision follow-up, and connecting families with appropriate services.
A shared NICU pathway may help close that gap by making CVI risk part of discharge and follow-up planning rather than waiting for visual difficulties to become unmistakable later in childhood. The approach also recognizes that vision care is one component of a broader developmental pathway for infants with complex neurological histories.
Whether this model changes long-term outcomes remains an open question. Researchers are continuing to examine diagnosis rates, completion of referrals, developmental progress, and other outcomes to determine whether earlier risk identification produces measurable benefits for children and families.
The work shifts attention toward an earlier point in the pediatric vision pathway. For some children, recognition of possible cerebral visual impairment may be able to begin during neonatal care, when neurological risk is already known, rather than years later when the effects on everyday visual function become easier to see.
Sources
- Mass General Brigham / MedicalXpress: Q&A: Earlier recognition of cerebral visual impairment in the NICU could help more children thrive
- Smith C, El-Shibiny H, Smith L, et al. Identifying and addressing gaps in recognition of cerebral/cortical visual impairment risk in the NICU. Pediatric Research. 2026.
- Perkins School for the Blind: CVI by the Numbers
