She Who is Inappropriately Named.

by Alexa on October 22, 2008

Simone can’t hear.

I thought maybe typing that right at the beginning, getting it out of the way, would make this easier to write about, but guess what? No.

Yesterday was Simone’s big five-month developmental assessment at the NICU follow-up clinic. The appointment consists of visits with a neonatologist and nurse practitioner; a check-up; and a standardized test called the Bayley, administered by an occupational therapist. I might as well admit that I was feeling confident, going in. I knew Simone might have trouble with her fine motor skills, and maybe sitting, but I was wasn’t expecting anything but praise for how fine and fat she is growing, and what a strong, smart baby she has become. She is seen only once a month by Early Intervention, because after her evaluation in early September they decided she was doing too well to require more frequent visits. Though front-to-back still eludes her, she has started rolling back-to-front. Besides, each baby develops at her own pace: insert story about a friend-of-a-friend who didn’t talk until the eighth grade and is now a Rhodes Scholar, reminder that every child is a unique snowflake, et cetera, et cetera.

The evaluation started well. Simone is slightly above her adjusted age for cognitive skills, and a whole month above for expressive language. Her motor skills need some work, partly because I didn’t know she was supposed to be sitting at a tabletop to play with things (What does a baby need with a tabletop? A place to write? To hold tiny mock U.N. debates?), but her delay is relatively minor and not due to any physical limitation—she just needs practice.
I’m not sure exactly when it happened, but at some point the therapist began to look concerned. She asked whether Simone responds to her name. No, she doesn’t. Other words? Well…no. Does she turn toward noise? I hadn’t noticed, excellent and observant parent that I am.

Then, standing behind Simone, the therapist rang a metal handbell—LOUDLY. Loudly enough that my own ears were ringing. And Simone didn’t so much as flinch.

It was chilling, to watch Simone burbling obliviously in my face, while behind her gongs sounded and noisemakers shrilled. We tried rattles, crumpled paper, sudden clapping—nothing. I felt sick and panicked and unspeakably sad for my baby. And, I confess, weak with guilt. How did I miss this? How do you miss the fact that your baby can’t hear? Simone is very responsive to me, but it has now been demonstrated that she is responding to my facial expressions. She gets excited when Scott comes home from work, but not until she sees him. Her visual perception of her environment, it was noted, is especially keen, probably compensating for the fact that SHE CAN’T HEAR A DAMN THING.
After the Miracle Worker routine of bells and whistles and desperate cries of Helen!, the specialists conferred and then filed back in, looking grim. Because of what seems to be a hearing loss, Simone’s receptive language is at a two-month level. Examination of Simone’s ears reveals no wax or obvious fluid. She hasn’t had a fever or infection. She passed her newborn hearing exam, and because she learned a few months ago to mimic the intonation of “hello” (which, come to think of it, she hasn’t done in a long time), I am wondering whether she may have been able to hear at one point and now cannot. The neonatologist pulled some strings to get us a November 5th appointment with an ENT. November 5th seems terribly far away.

The best-case scenario, and the one I am fervently hoping for, is that there is fluid somewhere deep in Simone’s ears, and that all she will need is tubes put in to keep it draining and then therapy to make up the language acquisition skills lost by the months of deafness. The worst-case scenario is permanent, profound hearing loss. It can have a delayed onset, which I didn’t know, and Simone has several of the risk factors.
Believe me, I’m aware that as worst-case scenarios go this is a relatively cushy one; there are other, more devastating disabilities. But allow me to wallow for a moment. Simone has had PDA ligation surgery, multiple transfusions, severe jaundice, an infection, two bouts of acute renal failure, Retinopathy of prematurity, a small IVH, an aortic clot, osteopenia resulting in broken ribs, severe Bronchopulmonary dysplasia…the list goes on. She was doing so well, finally. And yet here we are, back in this place again.

This morning I was standing in the kitchen staring out the window when I remembered that the name Simone means “She who hears.”
You have to laugh, really. Well, I do, anyway, and I did, standing there with a bottle of formula in my hand. A possibly deaf baby named Simone. If I believed in god, I would think this was a slightly cruel divine joke. If my life were a short story I was editing, I would say this was a heavy-handed stylistic device and recommend the author stop trying to be so clever.

You have to laugh. People say that all the time, but I really do believe it. I think it is probably as close to a life’s philosophy as I get. Anyway, nothing is really any different than it was yesterday. I still love my Simone to distraction, she still needs to be fed and changed and nibbled on. We won’t know any more until her ENT appointment, and if the news is going to be bad, nothing we can do will stop it from coming. It’s business as usual around here. Except, I suppose, that we can now swear in front of the baby with impunity. I guess it’s true what they say about silver linings.

She Who is Inappropriately Named.

I Wrote This.

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