Thursday, June 25, 2009

Meet E-Train

Everyone, this is Ethan. Ethan, everyone.
Eth was born in April 2004 with unilateral grade 3 atresia/microtia in the right ear, which is a $10 way of saying his ear didn't fully develop during gestation. He has nerves and some structure that enable him to hear a little, but what he hears isn't as clear as what you and I hear (assuming you can hear well). I imagine it's a bit like having bad swimmer's ear or a permanent earplug that fits really, really well. The net result is that, besides not being able to wear 3-D glasses at the movies, Ethan can't tell where sounds originate (localization) just like people with vision in only one eye can't judge depth. As a result, he has a hard time when there's a lot of background noise. Like in our house. Or a school. Or our house. Or a playground. Or our house. Or a store. Or our house. Or our house.
Eth really doesn't demonstrate many of the other complications that accompany atresia/microtia, such as problems with his renal system or facial disfigurement (hemifacial microsomia or Treacher-Collins Syndrome). His speech isn't really affected although he does seem to have difficulty judging volume and his pronunciation isn't as clear as it could be some times. I mean, it's not like talking to Lou Ferrigno or deaf aunt Mary or anything. He hears. He speaks. He understands and he obeys. And he doesn't smell like old lady. Anymore.
His mom and I have been researching atresia/microtia since his birth (you'd be amazed at just how common this is, and despite what you think, his birth defect had nothing to do with our drug consumption, so bite me). In our research we learned that there are several choices regarding solutions:
1) Do nothing. He's not horribly disfigured and doesn't face a shortened lifespan or a substantially reduced quality of life if we leave it alone.
2) Seek a cosmetic solution. The least invasive option, aside from doing nothing, is to have a removable prosthetic ear created and affixed to surgically installed anchors in E's skull. Like false teeth, but without a functionality element.
Next up on the scale of invasiveness is Medpor, which is a permanently installed ear constructed from porous plastic and covered with a skin graft in a single procedure. The benefits of the skin graft are skin tone matching and pliability, giving it a cosmetic edge over a snap-on ear.
Finally, the most invasive cosmetic solution is rib graft surgery, where one of the ribs is harvested and the cartilage used to shape the ear. This actually takes between 3 and 5 separate surgeries, depending on who you ask, and can take up to 2 years since the shaping of the ear is incremental. The rib cartilage is covered with a skin graft, so the skin tone and pliability benefits exist, but the end result is rarely as "believable" as a Medpor ear.
In addition to the creation of an outer ear we could pursue:
3) Surgically restored hearing. Atresia repair surgery is essentially creating a new ear canal, connecting the outside world to an existing infrastructure. Several conditions need to be met for one to qualify as a candidate, namely a reasonable infrastructure needs to exist. Candidates are evaluated on a 10-point scale with 10 being the best score (no atresia/microtia kids would score a 10 since they don't have ears. Duh.). One needs to score a 7 or higher to be considered. Also, the younger the child, the more likely they are to require "tune-up" procedures since their canals grow pretty much like the rest of their bodies: like freakin' weeds. Just stuff to consider.
So after much deliberation and flip-flopping, we decided to pursue atresia repair surgery and Medpor. Mostly because we're pussies ... I mean parents, and can't bear the thought of our baby being cut open more than is absolutely necessary.
Through this blog we intend to tell the story of our collective ordeal step-by-step, in the hopes that it may educate other parents, satisfy general curiosities and exorcise the demons that will almost certainly inject themselves into our psyches over the coming months. We dedicate this collection to Ethan, our "E-train." Our "chicken McNugget." "Niblet." "E-baby." "Shmoody Bounden." "Porkypine." "Fuzzball." "Sweetie." So many names, so much love, so much hope. Stay tuned.

"Prediction is very difficult, especially about the future." -- Neils Bohr

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