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from Spring 97 issue

A Doctor's Response

by F. Keith Busse, Jr., MD, Pediatric Ophthalmologist

The late, great Carl Sagan once wrote that science is self-correcting. Therefore, to any parent with any faith in medicine and their physician, please pursue a second opinion regarding the diagnosis of your child, especially when it might mean a diagnosis that represents a life of little or no vision for your child. No doctor, even the best, will be right all the time. Respect those doctors that are the most humble and admit what they don't know. There is so little that we really know in medicine, and many concepts are overturned in time.

Regarding the specifics of the original diagnosis, I know myself I once told a mom her child was too young (a few months old and former premie) for me to be sure the baby's optic nerves were hypoplastic and to return for an additional visit later when the baby was older. Therefore, the simple act of allowing the specialist to examine and re-examine your baby over time will be helpful in obtaining an accurate diagnosis.

Medicine is also an art, and it is probably this particular aspect that I love about it the best. Just as there are many artists, we don't always like the art that each and everyone of them produces. The particular combination of great, knowledgeable scientist plus compassionate and empathetic doctor is rarer still, as I am sure you can imagine. The most knowledgeable Ophthalmology professor I ever had, once, reduced me to tears because of his lack of compassion and empathy for me, the student-doctor.

There are "some" Ophthalmologists capable of setting down with a parent and presenting a rationale, scientific and compassionate explanation of their child's vision compromising disease and an optimistic but realistic outlook on the future. And the parent of the previous letter found one after seeking him out. (See Winter 1997 See/Hear, p. 2-4, "A Letter to a Doctor.")

My own approach is to pretend that the office schedule is stopped and not to allow any disruptions to interfere with this important act of communication, between me, as doctor, and the parents, as caretakers of their child. I approach it with seriousness, as if I were telling someone they had cancer. Not that blindness or visual impairment is the same, but it will affect/effect this family and this child with a similar level of seriousness for the rest of their' lives.

Because of the seriousness of such an undertaking, I want a definite diagnose before I start down this road. However, I try never to forget the parents' desperate need for answers and supply them with the knowledge of what we know and what we don't know. I prefer to be a conduit for information and only rarely cross the line with my personal opinion (and only then when the very life of the child may be affected like in retinoblastoma, etc.). It is one of the great privileges a doctor has, to make such a big influence and share information on such an important topic. However late I get in my patient schedule, I do not allow myself to be rushed. I do my best to explain very scientific concepts in as simple terms as possible.

Additionally, Ophthalmologists will not have all the answers. Even though we devote a life to working with the blind and visually impaired, we have never walked a day in these person's shoes. Nor have we spent a single minute educating a child to learn with these problems. Moreover, we generally avoid the financial or social implications of these problems.

Thank goodness for the many resources as mentioned by the parent of the previous article. I pity the children with asthma, cancer or heart defects, as they have no

Commission for their disease-specific or organ-specific ailments. We are incredibly lucky that people and governments since time immemorial have recognized the unique difficulties of those with blindness and visual impairment. For Texans in particular, we are blessed with the wonderful resources of the Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) and Visually Impaired and the Texas School for the Blind and Visually Impaired. Such organizations are able to expand upon the contributions (of the diagnosis and treatment of eye diseases) that we as doctors make to enable the full development of the children who are our patients. The current trend by our society toward early childhood intervention, therapy in vision and mobility, etc. help give our patients, and your children the many expanded horizons that they deserve as God's creations.

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from Spring 97 issue