I was born in May, 1972, weighing 2 pounds and 2 ounces. The above picture was taken when I was a couple of weeks old and weighed 1 pound and 14 ounces.
How big is a baby weighing two pounds and two ounces? Once in a physics lab, I held a one-kilogram weight. This is equal to about 2.5 pounds. How would it feel to hold that much weight in the shape of a baby? I couldn't imagine it.
Perhaps there was another way to form the concept of the two-pound baby. I bought two 16-ounce Hershey bars and held them in my hands. I could have put them down and hardly noticed they were gone...
Today parents are allowed and even encouraged to hold their premature babies. Mine looked at me through the glass. I was born in the midst of a family move. I was left at the hospital while they went on to settle down in the new house. They drove 100 miles every week to look at me. I finally came home in August, weighing just over five pounds.
My mother does not remember me being a sick baby after I came home. She and my father know very little about my stay in the neonatal intensive care unit. Hospital staff were not forthcoming with details, and both of my parents admit to a lack of knowledge about what to ask. The one problem I had as a result of premature birth turned out to be something which would affect my whole life and the lives of my entire family. When I was five months old, I was diagnosed with what was then called retrolental fibroplasia (RLF). Today it is called retinopathy of prematurity (ROP). If it progresses without treatment, it causes varying degrees of visual impairment or, in the most severe stage, total blindness.
Throughout my life, my parents did the best they could with the limited knowledge and resources they had. They were not provided information about my condition or about educational services or rehabilitation programs. There was no support group or Internet where they could network with others or search for information. They took many of their cues from my behaviors and, later, my language. I played with dolls and most other toys the average child plays with, and many of the toys my parents chose for me provided me opportunities to learn about certain concepts. My parents patiently answered when I asked questions about objects or concepts, and often my questions were about things they didn't realize I couldn't understand.
As a child, I had quite a bit of usable vision. I could read extremely large print for a little while but was primarily a braille user. My vision was very useful for getting some limited information about the environment based on size and contrast in levels of brightness. Colors were very difficult for me to identify. I could pick out a few basic ones by paying attention to the level of brightness, but most colors appeared to me only as very dark, moderately dark, pale, or bright. In 1981, I experienced dramatic vision loss because of the presence of a very dense cataract. This was removed and a vitrectomy was performed at the same time. This surgery resulted in a substantial improvement in my vision.
However, during my teens I developed glaucoma and experienced another gradual loss of vision. In 1992, I had another surgery which preserved my remaining vision. What I had left was still moderately useful in combination with a cane or dog guide for getting around. I even benefitted slightly from the use of a contact lens.
In 1997, I could see well enough to avoid objects such as tree branches, poles, and other objects in Could usually see that someone was sitting 10 feet away from me, although I would not recognize any of that person's features.
By April, 1998, things appeared grey when they appeared at all. There were times when I could not even see light. These times were very upsetting to me. It was as though I was looking at the world through a film. There was very little contrast unless something moved and I could perceive the movement. I was not able to judge distance at all and found getting around very difficult, even in my own house.
I went to my ophthalmologist, who happened to be a retina specialist. He told me that my cornea was damaged and was probably the cause of my vision loss. He did, however, believe that I might benefit from retinal surgery. The problem was that I was moving.
After the move, I obtained a referral to Dr. Michael Trese, a well-respected retinal surgeon in Detroit who has done a lot of research on ROP. He could see that my optic nerve was fairly healthy through one small clear place on the cornea, but he could not see the condition of my retina. He recommended that I have a corneal transplant and another vitrectomy, the procedure which ideally results in retinal reattachment and which I had had in 1981.
On December 18, 1998, I had surgery. My own cornea was removed, and Dr. Trese discovered that I had a traction retinal detachment. Some scar tissue was pulling the retina away from the back of my eye, and this resulted in gradual vision loss. After the surgery, I experienced a gradual improvement in my vision until I could locate some objects, to use my vision in combination with other techniques in getting around, etc.
About three months after the surgery, I began to notice that my vision was decreasing gradually. When I had an upper respiratory infection, the gray film returned, and each time it cleared up I saw more poorly than I had before the infection. After the fourth or fifth infection within a year, I returned for my routine bimonthly visit with Dr. Trese and the cornea specialist. Fighting back tears, I expressed my distress about the loss. "Your problems have to do with your retina," the cornea specialist stated flatly. "It will take a long time for your cornea to reach the point where you can't see out of it."
Dr. Trese noted the increasing cloudiness of my cornea with concern. The retina was reattached and stable. As I stood at the front desk making my next appointment, one of the staff members came and asked me how I was. I had grown fond of her over the months, and she had shared in my excitement over the initial success of the surgery. I opened my mouth to tell her the truth, but I couldn't speak. I started to cry. "You don't have to tell me," she said, hugging me.
By April, 2000, my cornea was so cloudy that Dr. Trese used the ultrasound machine to view the retina. I was disturbed about this, and I pressed the issue with the cornea specialist. It was then that he spoke the words I had dreaded. "That transplant has failed."
I went home and made another appointment for October with both doctors. I had a lot of thinking to do.
I had suspected for several months that the transplant was failing. I was convinced that this was the cause of my vision loss. There was no other explanation. If Dr. Trese couldn't see in, how should I be able to see out?
In late September, I had another respiratory infection and lost more vision. I moved my appointments up and decided I would ask about a second transplant.
"I will absolutely not do another transplant unless it's necessary in order for Dr. Trese to be able to see the retina," the cornea specialist told me. "It's too risky, and you wouldn't benefit from it."
Dr. Trese again noted the increasing cloudiness and encouraged me to pursue a second opinion.
As the respiratory infection cleared up, my vision began to improve. I decided to put off getting the second opinion for a while. Perhaps the vision would stabilize; and if it did, I didn't want to risk losing it.
Denial is a very powerful thing. It can make a person blind to the truth, and I was more blind to the fact that my vision was still decreasing than I was to the world around me as seen through that clouded cornea. In January, however, I was forced to face reality. In one day I stopped being able to see an infant's face while I was holding her. I was shocked and upset.
I had lost the number of the doctors in Indianapolis to whom the cornea specialist had referred me. I collected some phone numbers from a Web site listing ophthalmologists by specialty and location, but I had no idea how to select a doctor. I found one with a Website listed, so I visited and looked at his patient education mmmmmaterials. He had none about cornea transplants, but I decided to try him out.
My choice turned out to be an excellent one. He spent time explaining the various complications to me, and he also emphasized the importance of matching the donor and patient on certain factors and working together to minimize the possibility of rejection or failure. "I've never seen you before," he said, "so I don't know what the potential benefits are. But I will try it if you want me to."
After many other questions, I decided to go ahead with another transplant. The surgery took place on March 13, 2001. During the weeks before the surgery, I educated myself using information I found online and prepared for the recovery period. My new doctor also gave me papers to read--something which was not done previously.
Within two months following the surgery, I had one respiratory infection. While I was ill, I experienced a reduction in my vision. However, as I recovered, I experienced a dramatic improvement. I did not lose any more vision because of respiratory infections in the months and years that followed.
In January, 2003, I went to a new doctor with concerns about vision loss that had occurred after my move to Florida in October, 2002. He had no explanation for the loss. I had been reading emails from one person who had experienced visual improvement after beginning to take nutritional supplements. I began to read about vitamins, minerals, and amino acids; and in April, I bought a supply of vitamins and begin my experiment. I experienced some improvement and am now able to perceive light and some objects and color contrast. I know that nutritional supplements are not a cure or even the answer for everyone with ROP; but I also know that their importance in eye health cannot be overlooked.
I trust my eye doctors as completely as one can. I am aware that they may make mistakes, but I am also convinced that they are being honest with me and that they respect me as a person who has a right to know the truth about the condition of my eyes. This is a vital part of my ability to trust in them. I would rather have a doctor who is willing to say the words "I don't know" and do his homework than a doctor who is very skilled and knowledgeable but who does not explain things to me thoroughly or provide me with complete information about the procedure and the recovery period.
