My Perfect Boy With Mild to Moderate Sensorineural Hearing Loss

Today my baby boy was officially declared imperfect. He lay in my lap with electrodes pinned to his scalp and had an Auditory Brainstem Response test and, well, he failed. We had hoped that the preliminary screening was a false positive. We had hoped that there were other explanations for his intense staring, his unwakable sleep, his acceptance of loud noises, his need to be held all the time -- we had hoped that we would not have to become experts on cochlear implants.

We had hoped not to have to think about medical malpractice, but now we're thinking how the hospital labor staff were wrong to let labor go on for 14 hours. Can a long labor cause moderate sensorineural hearing loss? Can pitocin? Can an epidural? Can the caesarean anesthetic cause it? Shouldn't they have warned us? Shouldn't they have known? How can we trust the medical community again when they have led us so wrong? How can we believe in modern medicine when this is the result?

Eljay asked me today, "What can we do to avoid this in Ruby?" Ruby is the daughter we are planning for 1999. "Have her at home with a midwife," I replied. We trusted hospitals; we were afraid to do it ourselves; we were nervous about "complications." But all the hospital machines, all the diagnostic devices and wonder drugs, all the obstetricians and neonatologists and anesthesiologists, they still left us with a permanent complication, a long-term complication, a life-changing complication. Wouldn't a midwife have made our labor easier? Wouldn't a midwife have had Eljay sit differently so the baby would have turned the right way? Wouldn't a midwife have left out the drugs and left us with a perfect boy?

The audiologist assured us that medical technology will give our boy enough hearing so he'll speak normally and be able to attend regular schools. "His development won't be impaired," she says, with the same confidence exuded by the rest of the medical community that we trusted.

But I had my own plans for his development, beyond the physical development that medical science can provide. I had planned that next month, my baby would start to smile when he heard my bicycle roll into the driveway after work. I had planned that by this time next year he would adopt all of my goofy speech mannerisms. I had planned that by 2001 he would love to have Coco read him bedtime stories and would sing to Spike's drum playing. I had planned that sometime around 2010 he would drive us crazy with hip-hop or gangsta rap or whatever its successor would be. I had figured that around 2012 he would start his own rock band in our basement. And I figured that someday around 2015 he would hear some shy young lady whisper a barely audible "I love you" for the first time.

Will my boy ever hate air-conditioners because they spoil the sounds of the night? Will he experience the joy of shouting over the rush of highway traffic when we don't have to be in a car? Will he hear the wings churning on the hummingbird that feeds outside Johnny's window? Will he want to sleep outside on a hot summer night to be amid the thunder of the crickets? Will he hear the train rushing by and feel like that's the sound of home? Will he be dismayed someday to figure out that his Uncle Dan is a real musician while his daddy is, well, an amateur? Will he appreciate the sound of a river lapping up against the shore? Or of ice crackling down the same river in the winter? Or the wind rushing through his hair as he speeds down a bike path?

We don't know which of those he'll ever experience now. That's the hardest part -- not knowing what we can do next so maybe he'll hear better, or what to avoid so he won't get worse. And we don't know who to ask, because we want someone who appreciates crickets and rivers and hummingbirds, and not just cochlea and brainstems. We want someone who knows that our boy is still the smartest boy in the world, is still the cutest boy, is still perfect, mild to moderate sensorineural hearing loss and all.