I Am Not Just A Number
Pearl M. Tamesis-Villalon, MD
In this day and age of research and constantly improving methods of research conduct and protocols, policies are determined, to a large part, by the results of these researches, most of which are numbers.
So in addressing the growing need to prevent blindness from Retinopathy of Prematurity (ROP), experts worldwide, in at least 2 major landmark studies and 4 World ROP Congresses, agreed on the definitions of high-risk criteria, with emphasis on timely referral. These were all meant to guide the pediatricians in referring premature babies for ROP screening. These efforts were meant to drive home a very important point: the occurrence of visually-debilitating stages of ROP are preventable. The incidence of blindness from ROP is quite small, but nonetheless, catastrophic to the patient.
To speak of those numbers is not my purpose today. My purposes are to put a face and a voice to those who are “the tiny number … the small incidence” crying out from the outer edges of bar graphs, and to remind everyone that that tiny number of blind and nearly blind children are people with lives to live, and futures to look forward to, just like the rest of us. Certainly, opening that golden window of opportunity is the most important thing that one can do for the premature baby at risk of developing ROP.
One is not born with ROP. No one wants to have it. No parent will want his child to have it. And if one does have it, one must be protected from the deleterious consequences of ROP. This will happen only if everyone concerned will just do what they have to do. Screening of a high-risk baby by an ophthalmologist cannot be done without a referral from the attending pediatrician.
The tireless efforts of neonatologists and pediatricians in keeping the premature babies alive and managing all their life-threatening conditions are truly laudable. However, we must insist that sight is just as important. We must insist that high-risk babies be referred to an ophthalmologist for ROP screening. The importance of a wholistic approach in the management of a premature baby cannot be overemphasized.
Quality of life should be a primary consideration when it comes to any situation where something has been compromised. To drive home a point, please do this: Imagine your child blind. Then think of everything that a blind child will miss in his life. Think of all the difficulties that the blind child will encounter in his entire life. Think of all the difficulties and the heartaches for the parents of the blind child. Then think of how this blind person will be when the doting parents who took care of him will one day no longer be around. A parent of an ROP blind child once said “To a parent there are no statistics. My child is always 100%.”
And finally, think about these wise words from Nelson Mandela: History will judge us by the difference we make in the everyday lives of children.