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There are many ways you can help children and their families get the care they need.
No parent wants his or her child to be unwell, and hearing that your baby is having trouble with something as vital as his eyes can be especially difficult to hear. But at Children's, we view the diagnosis as a starting point: With early detection of ROP, we can closely follow the progress of the disease to determine the right time to begin treatment, if needed, for the best results for your baby's eyes.
If your child has mild retinopathy of prematurity (Stage 1 or 2), the abnormal retinal blood vessels usually heal on their own sometime in the first four months of life. But if the ROP worsens, he may need treatment.
The goal of treatment is to halt the abnormal blood vessel growth in the eyes and limit its harmful effects, like scarring or retinal detachment.
Photocoagulation (laser therapy)
Photocoagulation is the first line of defense against ROP. The setup is much like a retinal exam, except your child will be given local or general anesthesia. The ophthalmologist uses a diode laser mounted on the indirect ophthalmoscope to make tiny “burns” in the periphery of the retina, to prevent further growth of abnormal blood vessels.
Your child's doctor will set follow-up exams — usually every one to two weeks — to see how the eyes are responding to the laser treatment. If the ROP continues to worsen, your child may need additional laser treatments or possibly eye surgery.
Formerly the procedure of choice for treating ROP, cryopexy uses a penlike instrument called a cryoprobe to freeze parts of the retina's periphery through the outer wall of the eye. Though it's largely been replaced by laser therapy, cryopexy is useful when the retina can't be fully seen (because of a hemorrhage, for example).
Because both photocoagulation and cryopexy destroy part of the retina's periphery, your child may lose some of his side vision with these treatments. However, the procedure aims to save his “central vision”—the most important part of sight — which is necessary for things like reading and driving.
If your child's retinal becomes partly or completely detached—Stage 4 or 5—your doctor may refer him to a retinal surgeon for treatment, usually scleral buckling or vitrectomy.
Amblyopia:Poor vision in one eye; sometimes called lazy eye.
Cryopexy: A treatment for ROP that freezes tissue along the retina's periphery; also called cryotherapy.
Gestational age: The length of time between a baby's conception and birth.
Macula: Part of the retina directly behind the lens, which is responsible for central vision.
Photocoagulation: A treatment that uses a laser to “burn” tissue along the retina's periphery; also called laser therapy.
Plus disease:A condition in which retinal blood vessels become abnormally twisted and enlarged.
Regression: A return to a previous state; in ROP, this describes the diminishment or vanishing of abnormal blood vessels.
Retina:The light-sensitive inner lining of the eye wall, responsible for capturing visual information and sending it to the brain.
Retinal detachment: When part or all of the retina comes away from the back wall of the eye.
Sclera: The outer layer of the eye; the "white" of the eye.
Scleral buckling: A surgical procedure in which a silicone band is placed around the eye and tightened until the retina is close enough to the wall to reattach itself.
Strabismus: The abnormal alignment of one or both eyes; sometimes called crossed eyes.
Vitrectomy: A surgical procedure in which the vitreous is removed from the eye so that the retina can be reattached.
Vitreous: The gel-like substance that fills the back of the eye and gives the eye its shape.
If your baby is diagnosed with prematurity of retinopathy, you may understandably be worried about what it means for the future. Will my child be able to lead a normal life? is a question that many parents in your situation ask. And for the vast majority of babies with ROP, the answer is yes.
The long-term outlook for your child hinges on two factors:
If your child has Stage 1 or 2 ROP, the abnormal blood vessels will often shrink or go away on their own and there's no loss of vision. Down the road, your child may face an increased risk for eye problems like nearsightedness, but in many cases these conditions can be treated or controlled.
Sometimes, though, Stage 1 or 2 ROP will worsen to Stage 3 or higher. Here, the outlook is more guarded. Bleeding and scar tissue may lead to distortion or detachment of the retina, which—even with treatment—can cause moderate to severe vision loss, or even blindness.
Coping and support
We understand that you may have a lot of questions when your child is diagnosed with retinopathy of prematurity. Is it dangerous? Will it affect my child long term? What do we do next? We've tried to provide some answers to those questions here, and our experts can help explain your child's condition more fully. If you have additional questions while your child is being treated at Boston Children's Hospital, we may be able to put you in touch with other Children's families who have dealt with ROP.
Children's also has several resources designed to give your family comfort, support and guidance:
There are a number of outside groups that provide additional help for families facing retinopathy of prematurity. Two to try:
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”