Mohamed El-Dib, MD, of the Division of Newborn Medicine at Mass General Brigham for Children is the corresponding author of a new study that seeks to identify and address gaps in the recognition of cerebral visual impairment (CVI) in the neonatal intensive care unit (NICU).
CVI is common among infants with neurological issues and there is no standard approach for identifying NICU babies at risk for the disorder prior to discharge.
The guidelines developed by Dr. El-Dib and team and an ongoing collaboration with Lacey Smith , the CVI parent community manager from Perkins School for the Blind are part of an effort to improve early identification and treatment at the earliest stages, where the brain is most receptive to change. Here’s what El-Dib and Smith told us about their work:
What is cerebral visual impairment (CVI)?
Cerebral visual impairment, or CVI, is a brain-based visual disorder that occurs when damage or differences in the brain affect how visual information is processed. Unlike vision problems caused by eye disease and ocular factors, CVI stems from injury or abnormalities in the brain's visual pathways.
Children with CVI may have typical appearance and function, but still struggle with tasks such as recognizing faces, locating objects, navigating crowded environments or interpreting complex visual scenes. Because CVI affects how the brain processes vision, symptoms can vary widely from one child to another.
Today, CVI is recognized as one of the leading causes of pediatric visual impairment in high-income countries. Recent estimates suggest that there are more than 180,000 children and young adults with CVI in the United States, although only 14% have been formally identified.
Why is CVI often diagnosed late?
One of the biggest challenges is that CVI can be difficult to identify in infancy. Many of the visual difficulties associated with CVI do not become obvious until children are older and begin interacting with more complex environments. As a result, diagnosis is often delayed until later childhood, with some studies reporting an average age of recognition as late as five years.
Current diagnosis often relies on behavioral observations and concerns raised by parents or caregivers. By the time those signs become apparent, opportunities for earlier intervention during a period of high brain plasticity may already have been missed.
Which babies are most at risk?
Many infants who develop CVI have other medical conditions that can be identified shortly after birth. These babies are often cared for in NICUs.
Risk factors include premature birth, white matter brain injury, intraventricular hemorrhage (bleeding in the brain), hypoxic-ischemic encephalopathy (brain injury caused by lack of oxygen), neonatal seizures, stroke, central nervous system infections, and certain genetic or metabolic disorders.
Because these risk factors are already known during a baby's NICU stay, the NICU offers an important opportunity to identify children who may later develop CVI.
What did the researchers discover about current NICU practices?
To better understand how CVI is recognized in the NICU, investigators surveyed 62 healthcare professionals at Brigham and Women's Hospital's Level III NICU, including physicians, nurses and allied health providers.
While most respondents were familiar with CVI and recognized major risk factors, their approaches to managing at-risk infants differed considerably.
Perhaps most strikingly, 95% of respondents reported that they do not routinely discuss CVI risk with families. Many said they lacked confidence in estimating risk or explaining the condition to parents. Among physician respondents, fewer than half reported knowing exactly what steps to take when CVI risk was suspected.
How did the team address these gaps?
In response, the researchers created a multidisciplinary clinical practice guideline (CPG) designed to standardize the identification and management of infants at increased risk for CVI. The goal was to translate known risk factors into clear clinical actions and reduce variation in care.
The guideline recommends that high-risk infants receive a comprehensive ophthalmologic evaluation within the first six months of life, when visual function can be assessed more reliably. It also encourages referral to developmental services and vision-specific supports so families can access interventions as early as possible.
Importantly, the guideline places significant emphasis on communication with families. Educational materials and structured talking points were developed to help clinicians explain CVI risk and the importance of follow-up care.
Has the new approach shown results?
Although still in its early stages, implementation of the guideline appears promising. The NICU team created a tracking database, developed electronic medical record prompts, and streamlined appointment scheduling processes to ensure high-risk infants did not fall through the cracks.
In the first five months after implementation, the team identified 45 infants who met the guideline's eligibility criteria. After accounting for infants who transferred, relocated, were already receiving follow-up care, or died during hospitalization, 39 infants were successfully scheduled for follow-up evaluations.
Researchers also reported greater awareness of CVI among NICU clinicians and more frequent conversations about CVI risk during patient care discussions.
Why does this matter for families?
Early recognition of CVI may give children access to services and interventions during a period when the developing brain is highly adaptable.
By standardizing risk assessment, referral pathways, and family education in the NICU setting, healthcare providers may be able to reduce delays in recognition and help more children receive timely support.
What's next?
The researchers caution that additional studies are needed to determine whether the guideline improves long-term outcomes, including rates of CVI diagnosis, timing of referral completion, and developmental progress.
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Identifying and addressing gaps in recognition of cerebral/cortical visual impairment risk in the NICU
29-Sep-2026