Retinopathy of Prematurity: A Guide for Parents

In the early stages of ROP, there are no visible signs that a parent can detect. The condition can only be identified through a specialized eye examination performed by a trained retina specialist. This is why routine screening for all at-risk premature babies is essential, regardless of how the baby appears at home.

In more advanced stages of ROP, certain warning signs may become visible. If your baby's pupil appears white rather than dark, a finding called leukocoria, or if your baby does not seem to track objects with their eyes or respond to visual stimulation, contact your baby's medical team right away.

These signs can indicate serious disease that requires urgent evaluation by a retina specialist. Do not wait for a scheduled appointment if you notice any of these changes.

Because ROP gives no early outward warning signs, every premature baby who meets the screening criteria must be examined by an eye specialist trained in ROP evaluation. These exams are typically done in the neonatal intensive care unit, called the NICU, and continue after the baby is discharged home until the retinal blood vessels have fully matured.

Laser treatment and anti-VEGF injections are typically performed in the NICU or a specialized treatment area. Your baby will receive medication to manage pain and stay comfortable during the procedure. Laser sessions can take 30 minutes or longer, depending on how much of the retina needs to be treated. Anti-VEGF injections are quicker but still require careful preparation and close monitoring afterward.

Your baby's medical team will walk you through each step and answer your questions. These treatments have been studied extensively and have a strong history of protecting vision in premature infants.

After laser treatment, your baby's eyes may appear red and swollen for several days. Your retina specialist will schedule follow-up exams to monitor healing and check for any return of abnormal blood vessel growth. After anti-VEGF injection, follow-up is especially important because the disease can recur weeks or even months later. Your baby's care team will set a follow-up schedule based on which treatment was used and how the baby is responding.

Even after successful treatment, children who had ROP need ongoing eye care throughout childhood and into adulthood. Premature babies, with or without a history of ROP, are at increased risk for nearsightedness (myopia), crossed eyes (strabismus), and lazy eye (amblyopia). Regular eye exams with a pediatric eye care provider can catch these issues early and help your child get the best possible visual outcome.

There is no guaranteed way to prevent ROP, but careful management of supplemental oxygen in the NICU is one of the most effective strategies for reducing risk. Neonatal teams aim to use the lowest effective oxygen concentration while still meeting the baby's survival needs. Improved monitoring practices have led to measurable reductions in severe ROP in many NICUs over the past decade. However, as long as babies are born prematurely, some level of ROP risk remains, which is why consistent screening is so important regardless of how stable a baby may appear.

It depends on how the baby responds. Some babies require only a single treatment session, while others may need additional treatment if the disease does not respond fully or if abnormal vessels begin growing again. After anti-VEGF injections in particular, the retina specialist will monitor closely because recurrence can happen weeks or even months after the initial injection. Your baby's care team will tailor the follow-up schedule to your child's specific situation and will communicate clearly if further treatment becomes necessary.

Anti-VEGF injections have been evaluated in clinical trials involving premature infants, and current evidence supports their safety and effectiveness for treating severe ROP. The FDA has approved aflibercept specifically for ROP treatment in preterm infants based on clinical trial safety data. Bevacizumab has also been used for many years with a generally favorable safety profile in this population. As with any medical treatment, your baby's retina specialist will discuss the potential risks and benefits with you so you can make the most informed decision for your child.

If ROP advances without detection or treatment, it can lead to retinal detachment and permanent vision loss. Aggressive posterior ROP is especially dangerous because it can progress to retinal detachment within days. This is why adhering to every scheduled screening exam is so critical. If a screening appointment is missed, contact your baby's eye care team immediately to reschedule. The window for effective early treatment is narrow, and every exam counts.

The long-term outlook depends on the stage of ROP and how early treatment was started. Babies with mild ROP that resolves naturally often develop normal or near-normal vision. Babies treated for more advanced ROP may experience some degree of vision change, ranging from mild nearsightedness to more significant visual impairment. Regular eye exams throughout childhood are essential for catching and managing any vision issues that arise. Many children with some degree of vision loss from ROP go on to lead full, active lives with the right support and monitoring in place.

It helps to come prepared with specific questions. Ask about the current stage of your baby's ROP and whether it is stable or progressing, what the criteria are for starting treatment, and what the follow-up schedule will look like after treatment. You can also ask what signs to watch for at home and what to do if you notice them. Writing your questions down before the appointment ensures you get the answers you need, even when emotions are running high.