Retinopathy of Prematurity Fact Sheet
Author: Maura Guimon-Warren
Retinopathy of prematurity (ROP), first recognized in 1942, is an eye disorder that primarily affects premature infants weighing less than 2¾ pounds (“Retinopathy of prematurity”, 2014) The visual system undergoes significant development during the third trimester, therefore the earlier an infant is born, the greater the risk for ROP (Chau, Taylor, Miller, 2013). The effects of ROP can range from normal vision (no long lasting effect) to complete retinal detachment and blindness (“Retinopathy of prematurity”, 2014). ROP is classified in five different stages.
Stages chart adapted from National Eye Institute
Stage I — Mildly abnormal blood vessel growth. Many children who develop stage I improve with no treatment and eventually develop normal vision. The disease resolves on its own without further progression.
Stage II — Moderately abnormal blood vessel growth. Many children who develop stage II improve with no treatment and eventually develop normal vision. The disease resolves on its own without further progression.
Stage III — Severely abnormal blood vessel growth. The abnormal blood vessels grow toward the center of the eye instead of following their normal growth pattern along the surface of the retina. Some infants who develop stage III improve with no treatment and eventually develop normal vision. However, when infants have a certain degree of Stage III, treatment has a good chance of preventing retinal detachment.
Stage IV — Partially detached retina. Traction from the scar produced by bleeding, abnormal vessels pulls the retina away from the wall of the eye.
Stage V — Completely detached retina and the end stage of the disease. If the eye is left alone at this stage, the baby can have severe visual impairment and even blindness.
For infants who fall in stage III (occasionally stage II) ROP can often be treated with laser photocoagulation. Laser photocoagulation will burn away abnormal blood vessels in the periphery of the retina (McCrory & McCutcheon, 2016). This treatment will cause loss of some peripheral vision but, when successful, preserves the central vision and prevents retinal detachment. For infants with stage IV or V ROP, a scleral buckle or vitrectomy may be performed.
Scleral buckle: A silicone band is placed around the middle of the eye and is tightened allowing the retina to flatten along the wall of the eye. When successful this treatment can prevent retinal detachment, but often results in severe myopia (Byrd Steinweg, Griffin, Griffin, & Gingras, 2005).
Vitrectomy: The vitreous (clear “jelly” found behind the lens) is removed and replaced with saline solution. The retinal scar tissue is then removed to allow the retina to relax against the eye wall (McCrory & McCutcheon, 2016). This is generally only performed on infants with stage V ROP.
Impact on Development
Medical treatments for ROP are not always successful. ROP can lead to low vision or blindness. The impact of visual impairments and prematurity on development can be significant. Children born at a low or very low birth weight are 2-3 times more likely to face speech delays, neurocognitive delays, delays in physical development, hearing impairments, and visual impairments (Lakshmanan, et. al., 2017). In fact a majority of children with ROP have additional disabilities (Termote, Schalij-Delfos, Donders, & Cats, 2003). These disabilities generally associated with ROP include:
- mental retardation
- cerebral palsy
- behavioral problems
- deafness/hard of hearing
A visual impairment or blindness itself can also have a significant impact on development. Children who have low vision/blindness are often behind their peers in cognitive development because of their limited exposure to concepts other children can casually observe. For example, think of how often a child may see a knife used during a day. Now compare that to how often that child actually has the knife in her hand. A child with a visual impairment who cannot see their mom or dad spreading or cutting throughout the day will need direct exposure to the knife in order to learn concepts related to what a knife is and how it is used. Further, because vision is generally the primary motivator for movement in babies and toddlers, children with low vision/blindness often do not reach their gross and developmental milestones as soon as their non-visually impaired peers (“Wonderbaby developmental charts”, 2017). Additionally children who are born with ROP are at a higher risk for focal brain damage (Stuart, 1995). This brain damage, especially when occurring to the frontal or occipital lobe can compound the effect on a child’s spatial understanding—an important component to feeling safe and secure while moving (Stuart, 1995). With this information in mind, there are many activities and interventions that can help encourage a child with ROP to learn, grow, and achieve their developmental milestones.
- Activities to encourage reaching and movement:
- Placing a motivating toy just out of reach
- Use a resonance board
- Fill a kiddie pool with preferred textures/toys and allow safe, independent exploration
- Encourage a child to hand objects to someone next to them, encouraging them to switch hands at midline
- Walk them throughout a room and let them touch all the parts (cabinet, refrigerator, etc), this is how they will mentally organize their world! Narrate as you give them the tour (“this is the refrigerator where we store your milk and applesauce!”)
- Once they become mobile, do as much baby proofing as needed to allow them to move throughout as many rooms as possible independently.
- Activities to encourage sensory system integration (Biel & Peske, 2009)
- Use a vibrating baby seat or swing while playing with toys or books
- White noise during nap and bed time
- Use predictable routines to begin to help the child predict what happens throughout the day
- Use a clue to help alert them to the next activity (ie. Let them hold a diaper before initiating a diaper change, give them a washcloth before beginning the bath routine)
- Use a calming voice
- Use deep pressure or hugs
- Activities to encourage language and concept development (Talk, talk, talk!)
- Tell the baby before initiating an activity such as a diaper change
- Use age appropriate details to describe activities and what you see in the world—“I see a red truck in front of us on the road.” “I am using a pan and a spatula to make your eggs!”
- When possible let them experience activities with you (give them their own spatula and pan to explore as you cook their eggs)
- Name everything you can, and use consistent names for toys and activities.
- Above all, take time to enjoy your child and find activities that make you both smile!
Biel, L., & Peske, N. K. (2009). Raising a sensory smart child: The definitive handbook for helping your child with sensory processing issues. New York: Penguin Books.
Byrd Steinweg, S., Griffin, H. C., Griffin, L. W., & Gingras, H. (2005). Retinopathy of prematurity. RE:view,37(1), 32-40.
Chau, V., Taylor, M. J., & Miller, S. P. (2013). Visual function in preterm infants: Visualizing the brain to improve prognosis. Documenta Ophthalmologica,127(1), 41-55. doi:10.1007/s10633-013-9397-7
Development Charts for Blind & Visually Impaired Babies & Children. (2017, April 06). Retrieved April 21, 2017, from http://www.wonderbaby.org/articles/development-charts
Lakshmanan, A., Agni, M., Lieu, T., Fleegler, E., Kipke, M., Friedlich, P. S., . . . Belfort, M. B. (2017). The impact of preterm birth <37 weeks on parents and families: A cross-sectional study in the 2 years after discharge from the neonatal intensive care unit. Health and Quality of Life Outcomes,15(1). doi:10.1186/s12955-017-0602-3
Mccrory, C., & Mccutcheon, K. (2016). Retinopathy of prematurity: Causes, prevention and treatment. British Journal of Midwifery,24(9), 631-634. doi:10.12968/bjom.2016.24.9.631
Retinopathy of Prematurity. (n.d.). Retrieved April 21, 2017, from https://nei.nih.gov/health/rop
Stuart, I. (1995). Spatial orientation and congenital blindness: A Neuropsychological approach. Journal of Visual Impairment & Blindness ,89(2), 129-141.
Termote, J., Schalij-Delfos, N. E., Donders, A. T., & Cats, B. P. (2003). The incidence of visually impaired children with retinopathy of prematurity and their concomitant disabilities. Journal of American Association for Pediatric Ophthalmology and Strabismus,7(2), 131-136. doi:10.1067/mpa.2003.s1091853102420083