new parents and decisions about surgery

Parents often ask about how to decide when to cease efforts to restore sight to a baby with ROP via advanced surgical procedures such as vitrectomy. This is a very personal matter that only the family can decide. Many parents are afraid that their child will grow up and be resentful that more effort was not made if they do not continue attempts. On the other hand, parents who consider continuing on with surgeries are afraid that the procedures will have lasting psychological outcomes for the child.

Surgeries were not available for infants in the early 1970s, when I was born. However, I was subjected to numerous examinations as doctors attempted to evaluate the state of my eyes and provide my parents with an idea of my prognosis. During my early childhood, I was diagnosed with glaucoma in my left eye which was determined to be painful; and my parents were advised that the eye might someday need to be removed. In later childhood, I lost a significant amount of vision in my right eye very suddenly due to a rapidly growing cataract. Emergency surgery was scheduled to remove the cataract; and in the same procedure my retina was also reattached.

My mother experienced a great amount of anxiety regarding this procedure, much like what I described above. In the end, she decided that she must try and that it was best to know that she had done all that she could do. In other circumstances this might not have been the best decision. As an adult, I have had to repeat this decision several more times when surgery has been necessary to treat additional complications of ROP. During the last procedure, my eye bled profusely; and I now know that surgery is not a wise decision. This makes things easy for me now, but I empathize strongly with parents who struggle so deeply with these decisions about their babies' eyes.

Growing up with some vision has been useful. It is important for me to acknowledge this, even though I have had only a small amount of vision. I must also say that vision is not necessary for living a full life; and when dealing with advanced cases of ROP it is not always possible to predict the outcome of surgery. The art of hoping for the best while preparing for the possibility of unsuccessful outcomes is very important to master. For your child's sake, it is important to be at peace no matter what the outcome is. Your child will grow up and experience that outcome as normal. Your attitude will help your child to develop his/her perspective about blindness.

Welcome

When I was a little girl, retinopathy of prematurity was called by the name retrolental fibroplasia... My parents were very open about discussing my eye condition and prematurity with me; and I could pronounce and even spell retrolental fibroplasia by the time I was nine years old. I also knew that I was at risk of losing my vision due to the possible onset of glaucoma and that my eye might need to be removed if it became painful. However, there were many things I did not know. I learned a few along the way. For instance, I learned what a cataract was when I had one removed at the age of eight. There were other things I did not learn until much later.

In 1998, I began to educate myself intentionally about ROP. Several things prompted this journey: the sudden loss of my vision, a cross-country move and a search for a new doctor who could provide treatment, the availability of information online, and ability to scan and read articles at the medical library using relatively new technology. I became an empowered patient;. Twelve years later, as I face the fact that there is no more that can be done for my eyes, I am confident that I have made responsible choices in my treatment, even when risk was required. I am also confident that I am able to live well as a blind person. This has always been the case; for my parents chose educational options that ensured I would have the tools to live fully without sight from early in my life. My search for treatment has never been a fight to avoid blindness; but instead it has been a search prompted by my belief that I must use all of my senses to their fullest for the time available to me. I am thankful to my parents for both of these philosophies.

In this blog, I will share the things that have helped me along the way. Technology has changed a great deal over my lifetime; and I discuss this in detail on my technology blog rather than here. Here, I will discuss instead the philosophies that have caused me to make particular choices with regard to blindness: whether to use my vision or tactual functioning in a particular situation, when to seek help, and common lifestyle questions that face people with ROP.

I hope that you who are reading will leave comments and even discuss these things in response to my posts. Your comments will help me to know what kind of new posts will be useful or interesting to you. Please sign your posts so that I know how to address you in replies or new posts.

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