The Hard Truth About Anencephaly


I won’t go into details, but today was a bit of a defeat for another anencephaly mom. It breaks my heart and it makes me boiling mad when doctors refuse to care for these babies. It burrows into my heart when they say these babies only have reflexes and aren’t really living. I think what upsets me most, is that they completely turn their backs on the families in these cases and refuse to learn. They blatantly refuse to hear about these babies. And they close their minds to knowledge.

I mentally recoil and wonder, but aren’t you supposed to serve the sick? Aren’t you supposed to advance scientific knowledge? Aren’t you supposed to…?

The questions build in my mind and then I’m reminded that we live in a cruel world. And no matter how advanced we like to think we are, or how progressive we may think we are, we really are no better than barbarians at times.

We deny aid to the wounded, the sick, to those who are helpless. We deny life when it makes us uncomfortable. We deny love and compassion to those that are less fortunate. We live, constantly denying the tragedy around us. We tell ourselves we’re enlightened and that we are better than our predecessors. I look into the eyes of some of these doctors and see nothing but emptiness, cruelty, barbarity. I see a monster. Someone who is glorified as having all the answers and being a miracle worker. But behind the facade I’m met with a very ugly truth.

This isn’t a truth we’d like to think about our medical professionals. We’d like to think they are honorable. And there are honorable medical professionals. Medical professionals who do not fit the description I have previously written about. Ones who fight hard for what is right. And to those doctors I give my deepest thanks and admiration. However, there are many who don’t deserve their title. And there are far too many of these doctors “treating” anencephalic babies and their families.

Sometimes I wonder why bother with trying to advance research and change with anencephaly. And then something like today happens and I’m reminded that, yes, the majority of these babies die. A small, small percentage survives. And there are vast differences in the quality of life of those survivors. But they lived.

The babies who only lived inside their mommy’s tummy, lived. They mattered. Their stories deserve to be told. They deserve to be treated with respect and dignity. The mothers, fathers, grandparents, aunts, uncles, friends of these babies deserve to be treated kindly and with compassion. And those are things that are worth fighting for. Fighting for what is right, is worth it. These babies, alive or dead, are worth adversity and setbacks. They are worth our love. Their families are worth our compassion.

We can live in denial and pretend that we have become a more advanced people. Or we can acknowledge our shortcomings and change. We can change how we treat each other. The world doesn’t need more tragedy, it needs more love and compassion. And I’m not going to stop fighting until I’ve seen the world change.

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