Thankfully, my brain not only works, but I would say it has served me well. I got through high school, college, graduate school, and the bar exam with relative ease. I enjoy thinking and writing and some people even say I'm pretty good at it. Intellect and wit carry me in this life.
And so the irony is not lost on me, that I gave birth to a child with a defect termed "anencephaly," which means, "without a brain."
Having never heard of anencephaly before my son was diagnosed with the defect, I struggled to imagine what an anencephalic baby must look like. In my mind, I first imagined a baby that literally had an empty skull, until reason took over. I began to study anencephaly, and learned that there are varying degrees. A more accurate term is "acrania," meaning, "without a cranium." Acrania can lead to anencephaly. A baby with acrania hasn't formed a complete skull, and accordingly, the brain may either fail to develop completely or will be damaged due to exposure to amniotic fluid. But the anencephalic baby has a brain, and that brain has activity, albeit limited activity in some cases.
An ancephalic baby also has a heartbeat. My anencephalic baby had a heartbeat that was strong and steady. Just a few weeks into my pregnancy with Gabriel, I laid on an examining table while the nurse practitioner advised me not to worry if she couldn't find my baby's heartbeat with the Doppler monitor that she was about to apply to my belly. "It's very early, so don't be alarmed." But she swiftly drew a breath and smiled. "There it is." Tears streamed involuntarily down my cheeks. My heart's desire had a heartbeat.
As I read about anencephaly, I refused to look at pictures of the exposed birth defect. I was warned that these images were often not representative, having been taken from babies who were aborted early upon diagnosis. Instead I focused on viewing pictures of capped anencephalic babies, taking the opportunity to marvel at how otherwise-normal these babies looked. I tried to trust that when Gabriel was born, I wouldn't see a defect, but only see perfection, though I struggled to believe it.
When Gabriel was born and as he continued to hold on day after day, I was struck by wonder that this child, brain exposed, could function so normally. He tried to raise his head, he gripped my finger, he resisted diaper changes - he required diaper changes. I looked at him, and I knew I was looking at a scientific and Godly miracle. Gabriel's life wasn't supposed to happen. Anencephalic babies aren't supposed to live for ten days. Their open skulls are like open wounds susceptible to infection, their brains have been damaged and limit the child's function - indeed, Gabriel was almost completely mute, and we believe he was blind - and people aren't supposed to live when their brains are outside of their skull. But there he was, with a living, functioning brain. There I was, holding my child, staring at this living organ that I would imagine most doctors haven't even seen exposed and alive. I could touch it. I could spend hours staring at it. I saw a functioning human brain, outside of a human skull.
Of course, it makes sense when I consider that holding my son was like holding my own beating heart in my arms. I longed for him, my heart ached for him, long before he was born. He kept the blood pumping in my veins; love for my child sustained me.
Then one day Gabriel's body stopped functioning. His excretory system shut down first, I believe. His breathing became labored and he gasped for air, seizing so that he body would freeze in tension, then shake wildly. His beautiful brain stopped working. In my arms, his heart stopped beating.
And when it did, mine did too, even if just for a moment. I feel sometimes that I must will my heart to beat, I must make myself take each breath. I must make myself carry on.
"They" say that an anencephalic baby only reacts to stimuli; he doesn't feel, he doesn't act voluntarily. He's some sort of zombie, with only a brain stem telling him to move or eat or smile. But I saw my son live; he was alive. Many days I'm the one just going through the motions.
My heart has been exposed. It's been taken from my chest and has been made vulnerable. It is prone to loving and aching; it is highly susceptible to being broken. It's no way to live.
Then again, "they" said living with your brain outside of your skull is no way to live. There is no quality of life. But I would readily take ten days with my son, his brain outside of his skull, over no time at all. I would take him, defective and perfect all at once, any day.
I've thought about shutting down my heart, freezing it and making it purely functional. I just don't think I can. My heart doesn't wait for my brain to tell it to react - it just does. My heart doesn't take signals from my brain most of the time - though God knows I wish it did. My heart just acts, sometimes in risky, reckless ways. Still, I suppose I would take my heart with its fractures and defects over no heart at all.
Beautiful post
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