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Expectations.

As medical professionals we deal with people’s expectations on a day to day basis.  In today’s world, the patient feels, that any illness can be set right with either a medicine or a surgery and nothing is insurmountable. Rightly so, given the advances of modern medicine which has enabled mankind to conquer a lot of illnesses, hitherto un treatable.  Unfortunately, not all maladies fall in this category where a sure-fire, predictable cure exists.

A child with a congenital defect or abnormality with consequences, evokes even stronger emotions in the parents, and next of kin. The parental instinct to protect at all costs and secure a healthy future for the child is overpowering.

Much as I, as a physician and surgeon, derive utmost satisfaction from  treating children with congenital glaucoma, it comes with its own peculiar problems.

Congenital Glaucoma, or Glaucoma in a child at birth, is due to abnormal development of the trabecular mesh work- a sieve like circumferential structure present at the junction of the black and white of the eye. In the eye with congenital glaucoma, a fluid which is constantly being produced inside the eye- aqueous humor, is not drained out of the eye adequately enough. The result is that, in an otherwise closed chamber like the human eye, the pressure inside the eye goes up. The child’s eye is elastic, unlike an adult’s. So, the eye expands and enlarges. Many times unsuspecting parents have marveled at the large and beautiful eyes their child has, not knowing the cause and consequences of the large eye. In fact, one of the medical terms for this condition is “Buphthalmos” which means “the eye of an ox”. It is not just this enlargement of the eye, but the gradual weakening of the nerve of the eye, the optic nerve, which has devastating consequences for the child.  As the Eye pressure increases, the optic nerve gradually weakens and irreversible loss of field of vision, and eventually blindness ensues, if left untreated.

The treatment of congenital glaucoma is essentially surgical. Various surgical techniques are used to increase the outflow of the fluid from the eye. Goniotomy is one surgery where we use a thin needle to open up the meshwork form the inside of the eye, and Trabeculotomy where we open it up from outside, by cannulating a canal behind the meshwork.  Sometimes we also make a guarded channel which drains the fluid to the blood vessels on the outside layer of the eye.

One intangible factor which determines how successful we are in achieving control of eye pressure, and eventually saving vision, is how well the eye tissues heal. In this surgery, the physician is working at cross purposes with nature. It is nature to heal- any wound, any incision, that the surgeon might make. But in this case we want healing, but only to a limited extent. We want the filtration to occur on a continued basis, and achieve long term control of eye pressures. Children heal very aggressively, and therefore, the success rates for this condition are not as good as those in adults with glaucoma.  In the best surgical hands, success rates range around 80%, and “success” might mean adding medications in the form of eye drops for continued use, and additional surgeries performed as the child grows older. In 20% we are only successful in prolonging the duration of useful vision that the child may have, and eventually, blindness ensues.  On this road, additional surgeries including insertion of drainage implants into the eye, and laser procedures to decrease the production of the fluid inside the eye, would probably have been tried with varying success.

In all, this means that the child needs lifelong monitoring and care.  The role of the parent here becomes very central to optimize the outcomes for the child. A thorough understanding of the problems, and limitations, a commitment to regular follow up, and advocacy for the child in school and life, all of these become essential.

Let us look at this from the doctor’s perspective. When I see a child with glaucoma, I am mentally prepared for a long- term care giver relationship. Developing a rapport and trust with the parents and as the child grows, with the child, is definitely a priority.  I also need to deal with expectations that parents may have and give them a realistic picture of what to expect. When sometimes, the parent views you , the doctor as an opponent, rather than the ally that you are, the equation becomes complicated. Many times the angst that they have at the child’s congenital problem, is directed at you, the physician. When they are overly protective of their children and are aggressive in that they refuse to acknowledge the reality, things become difficult for everyone.

I need to take that in my stride, remain unperturbed and concentrate on giving the best I can to the child. I am human too. Somewhere, I take the battle on your behalf, but if you do not see that, and include me in your adversaries, someone to fight with, as if , if you could fight me, you have fought the disease, I cannot function. What then happens is that I become cold, clinical, and place hard facts in front of you. Take it, or leave it, that’s the way it is.  But this is not the best way to fight the disease, we need to be on the same side, you and me, we need to understand each other, and help each other on this journey. I shall come with you, but only as much as you will allow me to.

We may emerge victorious, with the child not limited by the abnormality at all, or we may partially succeed, losing something, but retaining some. Or we may fail, and reach what we dread. I promise I shall do my best, I shall be truthful along the way.

 

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