The following posts from the ROP list represent opinions regarding the possibility of retinal implants and other such procedures for people with ROP. The ROP list was moderated by Dr. Scott Richards until August, 2002. The list has closed now. For more information about lists of interest to people with visual impairments, please visit the email list index.
Date: November 9, 1998
From: Scott Richards
My opinion on the chip implant is that it is rather early to get excited about it. Call me a sceptic, but I've been hearing about this idea for over 20 years now. Whenever the University of Utah (our local ivory tower) gets a little low on funds, they tell the media (and anyone who may have a spare million dollars or so) about their groundbreaking research on the "artificial eye". The flurry of excitement quickly dies out, only to be reignited in a year or two by another media storm (forgive the mixed metaphors!)
Assuming that the technology really can be perfected, it would be of most use to persons who are completely blind. It is unlikely that "artificial vision" would be better than 20/200, especially in the early stages. Also, I suspect that the new vision would be very different qualitatively from natural vision (like Geordi on Star Trek).
This is not to say that it is not worthwhile research. I just have little hope of a functional, useful, subjectively satisfying and medically safe artificial eye in the very near future.
Date: November 12, 1998
From: Tom Wood
I am new to this e-mail conference. I just happend to find it while looking for information on ROP.
Let me introduce myself. I am a 42 year old man and was born about six weeks premature. I am a twin and my brother also suffers from ROP, but his eye damage was more severe than mine. My right eye is almost totally blind but my left eye has correctable vision to about 20/50. I am nerve deaf in my left ear and I have never had a sense of smell. In my only sighted eye I have very large floaters that are a constant annoyance, especially while trying to read.
I have had many surgeries on my good eye to correct for problems resulting from the damage at birth and straightening surgeries on my blind eye. The complications that I have suffered from are : Retinal detachment of my seeing eye at 16 years of age. Cataract surgery on both eyes at 32 years of age, Laser surgeries to correct severe floaters and a clouded capsule. Interocular lens implant (that keeps dislocating).
As for the current discussion, I am hesitant to share too much since I have not been with the group long enough to catch all that has transpired with the discussion on the eye-chip implant. Please forgive me if I have misunderstood anyone or the concepts shared.
Whether someone with ROP is blind, or partially sighted, like myself, there are issues. Total blindness is a very difficult thing for someone to deal with and I am in no way underestimating it. But it is also very difficult in different ways for the partially sighted. I too have had to deal with very insensitive people that have hurt me deeply.
My own parents couldn't deal with the fact that they had two "defective" children. They saw us as a burden to bear rather than children that needed extra love and encouragement to excel to their potential. Their way of handling our (my twin and I) condition was to tell us to pretend it didn't exist and to try to act more like our older sister who had normal sight. My mother also over-compensated by trying to shelter us too much so that we would not reveal our "defect". .
I have found that it has been very difficult for people to understand what I can and can't see. It is easy for people to understand blindness, but they can't understand being partially sighted. Only my wife who has lived with me for 18 years has any idea what I can see, but even she still under and over estimates what I can see. Except for my blind right eye turning in towards my nose a little, and being slightly smaller than my seeing eye, it's hard to tell that I have an eye problem (so I have heard). This has been a blessing and a curse. People expect me to perform to the standards of normally sighted people because I appear normal. My tendency was to pretend that I was normal until I had a problem. But sometimes I didn't realize that I was acting any differently from a normal person, but normally sighted people noticed the difference in my behavior--not seeing a sign, tripping, holding my head at an angle. Because of this, I was picked on unmercifully by bullies when growing up. It has also made it difficult to make good friends with other men as an adult.
To summarize, I just want to say that there are difficulties with both being blind and being partially sighted, especially when dealing with normally sighted people. I believe that we will always have very insensitive people who will consider us burdens and a drag on society. I believe that every human being is of immense eternal value no matter what limitations they have and what productively they can offer to society. But we are living in a world that values productivity above human life (just look at the abortion-for-defects many insurance companies require). Therefore, we are seeing the desire to devalue the importance of those in society that may have limitations, such as us with ROP, the elderly, the mentally retarded, etc, etc. We must accept this as a given and work to education those around us that all human life is of immense value and it is not based on what we can or cannot perform.
I would be interested in knowing if others have had similar problems.
Tom
Date: February 10, 1999
From: Jeanie Flowers
I think that probably every single person on this list either has had or will have their hopes raised by a media representation regarding this work. It is just very painful to me each time a new press release comes out saying how this chip will give sight to the blind in the forseeable future, when reliable sources tell me otherwise. I believe that it can and will happen, but the problem is (as Rachel's retina specialist explained to us) that there is still soooo much research yet to be done. While they may be gaining understanding as to how the light receptors in the retinas work and can be replaced, it is still largely a mystery just how the brain interprets that information to give us sight. I will concede that it may indeed happen in Rachel's lifetime, but how old will she be when this research comes to fruition? Meanwhile she has a life to live.
When I said that I wished to concentrate on maximizing my daughter's strengths rather than hoping for the miracle cure, this was in no way meant to be a criticism of you as a mother or as a person. It was a criticism, however, of the way the news media handles these news reports of retina research. I believe they raise false hopes, and goodness knows we have all been through enough without having to go through that as well.
You may also be interested to know that right now Rachel is scheduled for one of those procedures that many on this list are dubious of. Rachel is having a vitrectomy next week which we hope will help restore the tiny amount of object perception she once had. I am telling you this so that you will know that I am not anti-research or anti-progress. What I am, and I believe you are as well, is pro-my-child. I guess that is what it boils down to. The gains Rachel stands to receive from this surgery are small when you compare it to "normal" vision, but the difference is significant to her. That is why I insisted on proceeding. If I believed the chip was ready to give my daughter back any - and I mean ANY - useful vision, I would want to do it. I am not anti-research.
Date: February 10, 1999
From: Jennifer
Has Rachel had a vitrectomy in the past? Who will do her surgery? I will keep her in my thoughts and prayers. What exactly can Rachel see? I pray that my girls will have something beyond light vision, but at the same time I don't dwell on it. They are fortunate to have even that. As you know, they are only 17 months and although I feel that I am becoming more accepting of their disability every day, it still breaks my heart to think they may never see my face or their daddys face, or enjoy the things that I have enjoyed in life having vision. What a thing we take for granted......vision. I am still in a bit of shock and disbelief. Someone said on a post that it wasn't the end of the world and it certainly isn't. However, at times, having two with the same prognosis is so overwhelming that it seems like the end of the world. Although you know it could always be worse there seems to be this voice in the back of my head that says,"this is the worst!" I wish I could see things through their eyes.
Jennifer
Date: February 10, 1999
From: Sarah J. Blake
Hi, Jennifer.
I wish I could put in words what is going through my mind after reading your post. I just got done writing an update to some folks about how I'm doing after my December 18 surgery. This stuff was already on my mind, but reading your post made me want to put it in words here. I'm not sure how it's going to come out, but I'll give it a shot.
I'm not that old, but none of the treatments for babies were around when I was born. They didn't even screen babies back then. By the time my ROP was discovered it had already done its damage. I ended up having some light and form perception which my parents discovered when I was near your twins' age. I used it to its fullest, but it wasn't always going to be with me. I've had three emergency surgeries in my lifetime, attempts to scramble to save what I had and, this last time, to restore what I had lost. I rode with the flow for the first two. The last one was such a hard decision to make, and although it was successful it has made me think a lot about why it was so important to me. I don't function any differently now than I did when I had no vision for a period of time--not really, anyway. I couldn't pick my mom out of a group of people and never have been able to. I can see her features from 12 inches away, but most of the time I don't understand what about those features makes her look different from another person of the same height and build.
Now that I have some of this vision back, I've found myself doing a lot of comparing of what I can see now to what I could see two years ago, seven years ago, etc. All I come up with is an opinion that visual reality is so changeable, so unreal. I could never accept this until today. I was spending all my time thinking of all the things I could not do as easily as everyone else. Those things are still true, but equally true is the fact that what is seen is not always what is real. It is only a perception of what is real. That doesn't make it less important, but it does let me know that it is ok to have a different perception of what is real--a perception based on the fact that I see things differently with my eyes or not at all with my eyes and instead through my other senses. I know that for the sighted parents of blind children blindness can seem like an awful thing. It makes you stop and realize what you have and how precious your ability to see is. I think what I'm trying to say is that your kids will enjoy their lives immensely, especially if you are giving them the message that you know they can enjoy it--and I know you will. It takes time to adjust to this stuff, and it's ok for you to take that time. That's so much of what this group is about: taking the time to go through that adjustment process. We're all at different points in the process, whether we're parents or adults, but we do all care and understand the process.