The ROP FAQ
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The following posts from the ROP list provide an explanation of the stages of ROP and the zones used to describe the area in which it affects the retina. It is not uncommon for people to find something in each of the postings there is something that helps to clarify the explanation. was moderated by Dr. Scott Richards until August, 2002. The list is now hosted at YahooGroups.
Date: August 7, 1998
From: Guido
Hi Kae and others,
may I give an answer in my words to the questions you raised (I am not an ophthalmologist and Dr. Scott may correct me. You could also visit the web side which gives information in correct medical terms):
stage 1: blood vessels not completely developed (quite normal for a preemie, isn't it ?)
stage 2: enhanced grow of blood vessels (more than normal)
stage 3: scar tissue, blood vessels affecting the vitreous eventually + sign: additional observations (bleedings, well filled blood vessels, rigid pupil...)
stage 4a: partial retinal detachment (vision loss) by traction of scar tissue in the vitreous
stage 4b: partial retinal detachment involving area of best vision (severe vision loss)
stage 5: complete retinal detachment (no vision)
More detailed and additional information is given in terms of zones and hours (describing the affected location and area).
There is evidence that the uncontrolled oxygen supply lead to ROP in the past (up to the 70's). This is related to the change of some physical properties of the blood if the oxygen level is to high.
This is not true anymore since the oxygen level in the blood can be controlled in nowadays. There are even studies which indicate that a prolonged controlled oxygen supply can lower the incidence of ROP (treatment).
The apparent increasing incidence of ROP can be explained by the fact that more preemies of very low gestation weeks survive. The incidence of ROP in correlation to GSA is lower nowadays.
The reasons for ROP are still unknown. There are a lot of studies which correlate the incidence of ROP with brain bleedings, ventilation time, weight, GSA, drugs and so on. But all these factors are also strongly correlated with the premature birth. Light does not seem to play an important role. The development of the fragile system of the eye is severely distorted by the premature birth. It is not known presently what to do (or not to do!) to keep or regain the balance. More than 80 % of the preemies lower than the 28th GSA develop some stage of ROP!. The incidence of ROP is lower in experienced hospitals.
ROP is treated preferably by laser therapy (cryotherapy). The laser therapy destroys spindle cells which induce the (here: increased) growth of blood vessels. A therapy can be successfully applied in a certain time window only (34-38th GSA). The success rates (in terms of saving vision) are decreasing dramatically after this time window.
Who ever says the therapy will glue the retina to the vitreous missed the point (This happened to us).
Date: August 7, 1998
From: Kathleen
Hi Gang:
Okay, I have posted before but Guido Bracke's post describing ROP and possible factors that affect preemie's eyes brings up my question.
As I have written before, I was born in 48, one of a set of twins. I weighed 2lbs-13oz and was in the hospital for six weeks. I have some ROP I think, but not enough for the doctors to have talked about it much. (and I usually grill them to make sure I understand what is going on). I was born Feb 3, but originally due on March 24th.
I have severe myopia, but am still correctable to 20/30 or 20/35 with contacts. I am not correctable with glasses that much, being only correctable to 20/50 in my "good" eye with glasses. However, no retinal detachment yet (though I half expect this in the future), and no other major eye problems although my eyes do seem to be getting worse more rapidly. I do have a lot of vision fluctuation so I can identify with all of you when you write about that. I also have an extreme depth perception problem and don't drive anymore.
Okay, with my history, why not me and ROP? I asked Dr. Scott and he referred me to the web site, but it doesn't say why someone would NOT be affected. Reading this newsgroup makes me feel like the survivor of a plane crash! I have met other Baby Boomer preemies and most have severe myopia, but only when I started reading this newsgroup did I realize how many preemies have ROP.
Any ideas why all the 40's preemies aren't ROP?
Date: August 7, 1998
From: Sarah J. Blake
Kathleen,
Myopia is common with preemies who had stage 1 and 2 ROP which may have regressed, meaning the blood vessels did not continue the pattern of abnormal growth.
Just to add a bit to Guido's post:
There have been a lot of proposed causes for ROP since the increase in incidence. Babies who did not receive prolonged oxygen treatment have also been found to develop ROP. Other proposed factors have included exposure to bright light, receipt of adult blood, oxygen levels that are too low, Vitamin E deficiency, and others that have not been studied.
Other treatments which have a lower success rate include the scleral buckle and the vitrectomy. These are done in cases of more severe ROP. Some of the articles I've read specify cryotherapy for stage 3, scleral buckle for stage 4, and vitrectomy for stages 4 and 5. A few doctors have used vitrectomy to reattach the retina in stage 5 ROP with little success. A few of the eyes in these studies have gained some vision that was not necessarily measurable by standard acuity measurement procedures, but, as stated in one article, may be useful to the individual.
ROP is also associated with microphthalmos (a small eye), strabismus (eyes that do not turn the same way), amblyopia (lazy eye caused by difference in visual acuity between the eyes which causes the brain to prefer the stronger eye), and nystagmus (rapid movement of the eyes which is an attempt to focus).
I hope this helps.
Date: August 7, 1998
From: Guido
Hi Kathleen,
I agree to Sarah's writing. It is consistent to what I found in literature (Myopia is common with preemies who had stage 1 and 2 ROP which may have regressed, meaning the blood vessels did not continue the pattern of abnormal growth).
The myopia of preemies treated by laser is lower than by cryotherapy but still elevated. A very recent abstract of an ophthalmological meeting is confirming this (see below).
I assume that your myopia also results from your prematurity and some stage of ROP although it can not be proved anymore. Did you receive oxygen?
Valeria has a myopia of -11 dpt on her untreated eye !
An interesting study concludes that the color vision is affected to some degree by the blue light (bilirubin) which is often applied on preemies. Any experiences here ?
Date: August 17, 1998
From: Kathleen
In Response to Guido's questions and Sarah's comments:
Assume I did have oxygen because I can't imagine them not giving oxygen to a 2lb-13 oz preemie in 1948, however have never seen my birth records and figure that 50 years later, they aren't even on microfiche.
Was Rh-negative and had lots of blood transfusions for that.
It just puzzles me to see postings by people born later than me (early 50's-60's) who did not escape severe ROP, yet I did. If they could do epidemiology studies on our old hospital records, maybe they would find some indicator in common of those minus ROP versus those with ROP.
This disparity in outcome should ease some of the guilt I read in many new parents of preemies postings on this newsgroup. Possibly there is more "luck of the draw" in the outcome for preemies than we want to admit. There seems to be more than a little angst by the parents of new preemies about "doing the right thing." Maybe this isn't something you can conquer by your actions. You take what are the logical steps, fight for your child's eyesight, search for the best doctors, and try to make the most informed decisions. But in the end, the outcome may not be favorable. But you have done your best. Even for us old timers, and the efforts of our parents, which might not have been as useful as parents today (who questioned doctors about anything in the 50's?), there is only so much anyone can do. Speaking as a preemie who statistically shouldn't be here, its better than the alternative.
Hopefully, more effort can be put into helping all of us adjust to the vision we have. I think the most important goal for parents of ROP children should be to help them figure out where they will fit in the world and how to maximize that place. Actually getting a job is a major accomplishment for a person with any major visual problem (not training for a job, actually getting someone to hire you). Also, maybe it is just me, but even the people I have written to on the web with only severe myopia find that personal relationships are a major problem. People think you are sweet, cute and courageous when you are young and surmount personal difficulties, but it is a totally different story when you are an adult. I think people nowadays are afraid of commitment anyway, and they seem even more antsy about relationships where they might actually have to make a sacrifice. Although, as I now have my own "seeing eye" husband, it does seem that once made, these relationships are more sturdy than usual.
Have to go back to work, lunch over.
Date: August 7, 1998
From: Sarah J. Blake
Very insightful comments. I think there are a lot more people around with mild ROP than we may realize. I keep remembering seeing the name of a classmate on a referral form when I worked during the summer at the Commission for the Blind. She had 20/40 vision and was listed as having ROP. I kept thinking, "No way! She doesn't have any troubles!" I wonder now where she is, if she struggles with myopia, etc. I think that a lot of people with mild ROP like you have may never give it a second thought. I learned a few weeks ago that one of my best friends is a late 50's preemie, as preemie as I was. I never knew. She is fully sighted and is married to a mid-50's preemie who is totally blind. I was amazed. I kept saying how surprised I was to learn that she was a preemie. I used to think that all preemies so young and small developed severe ROP.
Perhaps the statistics are a bit misleading. Ten thousand babies of the 40's and 50's developed ROP and were classified as legally blind. Epidemiologically it's considered an epidemic. (Is that redundant?) But how many preemies of that time period did not develop ROP? How many developed milder forms of ROP and are not classified as legally blind? Of those who are classified as legally blind, how many are totally blind? How many have 20/200-20/400? How many have any degree of useful vision? These are things not addressed in any of the older literature. They're beginning to be addressed now, but I think they skew our perception of ROP and it's prevalence. Doctors mention the word blind without ever explaining that a person who is legally blind can still have very useful vision or that legal blindness refers to the 20/200 acuity with correction. A person who has 20/200 without glasses or contacts and 20/60 with glasses or contacts is not legally blind. These people are not represented in any of those statistics on ROP.
Sorry to ramble. You hit me in an area where I just ramble. (smile)
Date: August 7, 1998
From: Pam Berryman
Hi Sarah and group,
I, too, was not aware of milder forms of ROP until this last year. As you mentioned, Sarah, the older literature never addressed ROP in terms of varying degrees of vision nor clearly explained the nature and complications related to the five stages. I assumed that all premature babies with ROP fell somewhere within the category of "legal blindness."
As I think back to elementary school years, I do remember that a friend, Barbara, whom I became close to did have ROP. There was a period of a few months that she lived with my parents and I due to severe problems in the home environment. Mom had taken her to see my ophthalmologist in order to be sure she was receiving the best eye care and wanted to have a clearer understanding of her visual impairment. I never knew what her acuity was, but mom did tell me that she saw much better than I did in one eye but only had light perception in the other. Apparently, the optic nerve was severely damaged, and Dr. Lioli told mom that Barbara could become totally blind suddenly due to the frailty of her optic nerve. I did learn later that she was prescribed some glasses and was taking drivers ee--this was in 1994 when I last talked with her.
My close friend, Sue, in Chicago learned last summer when visiting a low vision clinic that her myopia was related to ROP. Sue's vision does fall within the range of 20/70-20-100. She has vision in both eyes. She did have some brief services through the Commission for the Blind and attended a college prep program in Detroit in 1973. We were both surprised to learn that this specialist did denote retinal changes that he believed were ROP related. Her vision has remained stable. My friend, Dina has ROP with vision in one eye of 20/50. However, she does have some field restrictions. Before cataract surgery, her vision had dropped to 20/100, and she was wearing a -22 lens for myopia. Removing the lens enabled her to now use a -1 prescription for correction with the visual improvement of 20/50. Her other eye is a prosthesis.
Not to ramble, but I am now finding that there are persons with varying degrees of ROP who are not represented. Sue had many years of eye care, but no ophthalmologist ever explained the nature of her eye condition to her? Was this out of neglect or because ROP was not noted? Who knows.
Hopefully, the beginning of such awareness and a beginning to acknowledge this in the recent literature is a positive step toward more research and sensitivity to issues regarding ROP and its related affects (e.g., myopia, glaucoma, visual field changes, and what I've recently heard, a latent macular degeneration).
Sorry for rambling, but I just felt like chatting on this subject. This is also an area for me where I can go on and on.
Date: March 30, 1999
From: Paula Korelitz
Stage 1 - Looks like a flat, white thread encircling the inside of the eye, dividing the part of the retina where vessels have grown from the part where they haven't. It is the abnormal vessel growth that indicates ROP.
Stage 2 - exists when a demarcation line grows and increases in thickness and lifts the retina to form a ridge.
Stage 3 - exists when small extensions or fibers begin to grow from the ridge, and give the ridge a jagged appearance. This is called threshold level. Up until stage 3 ROP may subside without causing serious visual damage to the infant.
Stage 4 - exists when the extensions or fibers begin to cause the retina to detach
Stage 5 - indicates total retinal detachment.
There are two ways of indicating where the retinal damage has occurred: zones and clock hours.
When talking about zones - think of the eye ball being divided roughly in three concentric circles.
Zone 1 is closest to the macula - the most refined point of vision, Zone 2 is the middle area, and Zone 3 is the outer extremities of the eye.
Clock hours would be like dividing the eyeball into 12 pieces of pie.
It is definitely easier to understand all of this if you can see pictures or slides!!!
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