Today I responded to some emails on the ROP-support list on YahooGroups from a family with a child who was having surgery for advanced ROP. In my responses, I discussed some topics that are often important to families just beginning their journeys with ROP. I want to break my responses up for posting here--and of course make them generic so that they can benefit others. If you are new to the ROP journey, please feel free to post your comments and I will respond in comments or future posts.
What are the long-term effects of ROP that parents should be aware of? This is a question that new parents often bring to the ROP support groups. It is, sadly, not surprising for me to hear that doctors (still) are not giving this information to parents. There may be a number of reasons for this. Certainly doctors want to provide good treatment for the current condition; and in advanced cases of ROP it may be difficult to know whether the retina will even stay detached. It may seem silly to talk about the possibility of long-term retinal detachment when the reality is that the retina may not stay attached at all in the first place. If a child ends up being totally blind due to retinal detachment, complications which threaten vision, are less concerning to a doctor. However, this does not help a new parent to feel that she has been properly informed; and becoming active in a support group and reading posts from adults who talk about various complications can be alarming while one's child is still in treatment as an infant.
There is much information available online in medical terms; and I have collected a good bit of this as well as some personal experiences which are shared with people's permission on my ROP site. For the sake of making things easy, I want to explain the long-term issues associated with ROP in language for non-medical readers. I use my own experience as examples in parts of this explanation. I am only one person; and everyone experiences this differently. That is very important to understand.
ROP does its work during the first few months of a baby's life. This is also when it can generally be treated most successfully, assuming there is opportunity for success. Various things influence the opportunity for success. Treatments have only been available to infants for about 25 years, and within that time they have been refined. Some doctors are more aggressive than others; and some use more innovative procedures than others. This is also true of treatment for adults.
After ROP has stopped its activity during infancy, the baby is left with a damaged eye. Damaged eyes are typically vulnerable to certain types of additional problems, or complications. This is true of other types of eye problems as well; but in the case of ROP there are certain types of problems that are documented to be common. This doesn't mean that every person with ROP will experience them. It means that we know to watch for them. No one knows why they do or do not happen. I was diagnosed with ROP in October 1972, no screening or treatment performed. I had total retinal detachment in the left eye reported at the time and partial detachment in the right eye. I had vision in the right eye, but this was not confirmed until 1973.
Some people develop glaucoma, which is a condition resulting from high pressure in the eye, later in life--sometimes this is in childhood as the eye is growing and sometimes it is much later; sometimes it is very painful and sometimes it is chronic and painless and requires drops to be put in the eye every day in order to keep the pressure in the eye down. I have copies of records from 1974 showing that I was diagnosed with painful glaucoma in the left eye and surgery was recommended. It was never done and the pain eventually subsided. It occurred again in 1981 and I was placed on drops. At this time I was treated also for other problems in the right eye. (You see, ROP is complicated and the same problem may not affect both eyes.)
Some people develop cataracts--again this can be in childhood or much later. If a person has no vision, cataracts are often not treated. The "other problem" that I referred to above was a rapidly growing cataract in the right eye. The surgical report states that the cataract not only caused rapid vision loss but also could cause me to develop painful glaucoma. The doctor took the opportunity to also perform a retinal reattachment. At the time the procedure he used had only been performed on children for four years. It was quite successful on me.
I later developed glaucoma anyway, but it was the painless type. Because I didn't understand the importance of using my medications, I had chronic high pressure which damaged my cornea--this is not a normal complication of ROP. I have had three failed cornea transplants in my right eye, and this is the primary reason for my reduced vision. My retina is partially attached and still healthy, but light is unable to reach it well.
In 1998, I had another surgery for retinal detachment as a combined procedure with my first cornea transplant. This was also initially successful--the retina is still attached. I had what is called a traction detachment, which means that the retina was slowly being pulled away from the back of the eye. This is different from a detachment that occurs from a blow to the head, which is what parents are typically warned about watching for in children with ROP.
My situation is different from that of babies who have the opportunity for treatment now in numerous ways, and the long-term outcome that they experience medically will be very different. I spent many years of my life having surgeries and doing things that would help me to keep hold of some usable vision. I am now at a state where I cannot have more surgeries--my eye bled very badly during the last procedure and is considered too fragile for further procedures to be performed successfully. I now live with what remains and monitor for pain. The one complication that I have not experienced is phthisis. This is a condition in which the eye is dying. It is extremely painful and leads to removal of the eye. When the eye is removed, it is replaced with an implant which is then covered with a shell that is painted to look like a real eye. I have known people who have had this done and they have been very relieved afterward in terms of pain levels. It is a situation I hope never to find myself in; but if I do, I will face it. That is the important thing about my approach to coping with ROP complications: I cannot stop them. I either treat them or face them and learn to live with them.
