Your premature baby

• Premature babies are born before 37 weeks of pregnancy.
• We don't understand all the causes but are looking for answers.
• Learn about what to expect, now and in the year or so to come.

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Retinopathy of prematurity (also called ROP) is an eye disease that affects many premature babies. A premature baby is one who is born too early, before 37 completed weeks of pregnancy. ROP happens when a baby’s retinas don’t fully develop in the weeks after birth. The retina is the nerve tissue that lines the back of the eye. ROP usually affects both eyes. 

About 14,000 to 16,000 babies in the United States have ROP. Most babies with ROP have a mild case and don’t need treatment. But babies with severe ROP can have vision problems or blindness. About 400 to 600 babies each year become legally blind from ROP.

If your baby has ROP, getting treatment right away is really important. The disease can develop very quickly and take away your baby’s vision if it’s not checked carefully by his doctor at recommended checkups after he leaves the hospital. So, be sure to take your baby to all of his checkups and eye exams.

If your baby has ROP, visit our online community at shareyourstory.org to find a network of parents of babies with ROP. You can connect with them for support and comfort throughout your baby’s treatment.

What causes ROP?
During the last 12 weeks of pregnancy, a baby’s eyes develop quickly. When a baby’s born, most of the blood vessels in the retina are nearly grown. The retina usually finishes growing in the first few weeks after birth.
 
If a baby is born too early, his blood vessels may stop growing, or they may not grow correctly. These fragile vessels can leak, causing bleeding in the eye. Scar tissue can form, and if the scars shrink, they may pull the retina loose from the back of the eye. This is called retinal detachment. Retinal detachment is the main cause of vision problems and blindness in ROP.

Some things make a baby more likely than others to have ROP. These are called risk factors. Having a risk factor doesn’t mean for sure that your baby will have ROP. But it may increase his chances. We know that the smallest and sickest babies have more risk factors for ROP than larger, healthier babies. Risk factors for ROP include:

• Premature birth. This is birth that happens too early, before 37 completed weeks of pregnancy.       
• Apnea. This is when a baby’s breathing stops for 15 to 20 seconds or more.      
• Anemia. This is when the body doesn’t have enough healthy red blood cells to carry oxygen to the rest of the body.     
• Heart disease     
• Infection     
• Trouble breathing or respiratory distress     
• Slow heart rate (also called bradycardia)     
• Problems with the blood, including having blood transfusions. This means having new blood put in the body.

How do you know if your baby has ROP?
Your baby gets an eye exam for ROP if he:    

• Was born before 30 weeks     
• Weighed less than 3 pounds at birth     
• Was born after 30 weeks or weighed more than 3 pounds at birth but has risk factors for ROP

For the eye exam, your baby sees a pediatric ophthalmologist. This is a doctor who identifies and treats eye problems in babies and children. Your baby gets her first eye exam 4 to 9 weeks after birth, depending on when she was born. She may still be in the newborn intensive care unit (also called NICU), or she may be home by this time. Babies born at 27 weeks or later usually have their first eye exam when they’re 4 weeks old. Babies born before 27 weeks usually have the exam later. This is because the more premature a baby is at birth, the longer it takes to develop serious ROP. This is why it’s so important to take your baby to all her eye exams, even after you take your baby home from the NICU.

If your baby’s first eye exam shows that the blood vessels in both retinas have finished normal development, she doesn’t need a follow-up exam. If your baby’s eye exam shows that she has ROP and her doctor thinks she needs treatment, she should start treatment within 72 hours. Early treatment gives your baby the best chance of having healthy vision.

How is ROP treated? 
Treatment depends on how severe your baby’s condition is. Any of the lower stages can get worse and become higher stages in just a few weeks. So it’s important to take your baby to all his checkups and eye exams so his doctor can make sure he’s getting any treatment he needs.     

• Stage 1 – Mildly abnormal blood vessel growth. These babies often get better without treatment and go on to have healthy vision.       
• Stage 2 – Moderately abnormal blood vessel growth. These babies often get better without treatment and go on to have healthy vision.      
• Stage 3 – Severely abnormal blood vessel growth. Some of these babies get better without treatment, but others develop a condition called plus disease. This means the retina’s blood vessels get big and twisted. Plus disease is a sign that ROP is getting worse, but treatment can help prevent retinal detachment.       
• Stage 4 – Severely abnormal blood vessel growth and part of the retina detaches. These babies need treatment because part of the retina pulls away from the inside wall of the eyeball.      
• Stage 5 – Total retinal detachment. The retina is completely pulled away from the inside wall of the eyeball. Without treatment, a baby can have severe vision problems or blindness.

ROP treatment may include:    

• Laser surgery (also called laser therapy or photocoagulation). Your baby’s doctor uses laser beams of light to burn and scar the sides of the retina. This stops abnormal blood vessels from growing and prevents pulling on the retina.      
• Cryotherapy (also called freezing). Your baby’s doctor uses a metal probe to freeze and scar the sides of the retina. This prevents spread of abnormal blood vessels and pulling on the retina.      
• Scleral buckle. Your baby’s doctor puts a silicone band around the white of your baby’s eye (called the sclera). This band helps push the eye in so that the retina stays along the wall of the eye. The buckle is removed later as the eye grows. If it isn’t removed, a child can become nearsighted. This means he has trouble seeing things that are far away.     
• Vitrectomy. Your baby’s doctor removes the clear gel in the center of your baby’s eye (called the vitreous) and puts saline (salt) solution in its place. Your baby’s provider can then take out scar tissue, so that the retina doesn’t pull. Only babies with stage 5 ROP have this surgery.

Many babies with ROP don’t need treatment. Even with treatment, some babies with ROP may have vision loss. And even if treatment works, babies with ROP are more likely than other babies to have some eye problems later in life, including:    

• Nearsightedness     
• Crossed eyes (also called strabismus)     
• Lazy eye (also called amblyopia)     
• Glaucoma. This is a group of diseases that damage the eye’s optic nerve. The optic nerve connects the retina to the brain. Glaucoma can lead to vision loss and blindness. 

This is why it’s so important to make sure your baby gets all his checkups and eye exams. Even though ROP goes away on its own for many babies, some babies do need treatment to get better. The more often your baby is checked for ROP and the sooner he’s treated, the less likely he is to have vision problems later in life.  Even if your baby does not need treatment for ROP, she is more likely than other babies to have eye problems later in life. Ask your baby’s provider about eye exams at every checkup to help make sure ROP and other vision problems related to premature birth are diagnosed and treated as early as possible.

For more information:
American Association for Pediatric Ophthalmology and Strabismus
shareyourstory.org

Last reviewed February 2013

See also: Premature babies, Common conditions treated in the NICU, NICU reference guide