Monday, June 29, 2009

As Ears Roll By ...

I was in the delivery room for Ethan's birth, as I was for Thomas'. There were a few notable differences between the two experiences, which were only 13 months apart so it was rather easy to compare. For instance, I held Sandi's right leg during Thomas' delivery and her left leg during Ethan's. Thomas' delivery took about 6 hours and Ethan's took about 45 minutes. The bed in the birthing room faced north during Thomas' delivery and south during Ethan's. And, of course, Ethan had a funky ear.
I was the first one to notice it. I remember pointing it out to the nurse who calmly remarked that it was probably just folded closed, stuck together by some clump of amniotic goo or something and could probably be fixed with scissors. She gestured above the ear without actually touching Ethan as she spoke, as if demonstrating the wax on/wax off technique, which didn't give me a great feeling. Still, such was my joy that I felt like hugging her. I didn't.
After the usual stuff -- room assignment, baby's first photo, feeding, blahblahblah -- we got a visit from the head ear guy at the hospital. That was the first time we'd ever heard the word "microtia." He, with cheat sheet in hand, went on to explain Ethan's condition (I remember he used the words "birth defect" which tore through me like a cannonball) and assured us that he could fix it. With a cheat sheet in his hand he said this. Like Jeff Spicoli in Fast Times at Ridgemont High: "Relax, all right? My old man is a television repairman. Got this ultimate set of tools. I can fix it." Thanks, doc. We'll get back to you.
One thing he did share with us from his cheat sheet that totally amazed me was the frequency of microtia: about 1 in every 6,000 births. Really? It's that common? I surely have seen 6,000 people in my life and don't recall ever seeing this before. Maybe I'm just not looking hard enough. And so began my obsession with ears.
At the time I was working in Center City Philadelphia and rode the train to and from work each day. Commuting in a major metro area affords you some awesome people-watching opportunities, so I took every advantage to study people's ears. Know what? There are some FUCKED up ears out there, yo. Mostly what I noticed was a lack of symmetry among pairs of ears, but in some cases there were seriously freaky shapes -- like bites had been taken out of them. Some bent in odd ways, some stuck out at 90 degree angles from the head, some were just freakin' dirty (Come on, people. What's a box of Q-Tips cost, $3? Here's a five. Buy some gum with the change in case your breath is as nasty as your ears, ya stanky bitch.). Even my own ears were suspect. I, still sure that some sin of my past had wrought this upon our beautiful son, begged Sandi to study the asymmetry of my ears. After a few minutes she said, "Oh yeah. I see it now. That's weird." WEIRD!? I KILLED OUR BABY! Oh, the shame! Still to this day, despite everything we've read that insists that it's just one of those things, I can't help but curse my DNA for its inferiority. Maybe that's why I was so chipper during my vasectomy. Ne'er more shall the world have to deal with my decrepit progeny. Whatever.
So after a while my ear fury subsided and I turned my energies to more important things. Like getting fat and balding. (Gestures to self: You don't think this just happens, do you?) But just when I think I'm out, they pull me back in. Seems these days I can't turn around without seeing some bizarre ear-related thing. Yahoo! picture of the day: An adorable dog with gigantic ears. Trip to the zoo: rare animals that only differ from their nearest relatives by virtue of their humongous ears. Stephen Colbert. The karmic bizarreness of it all is too much to grasp sometimes. Is evolution trying to tell us something? Are the slight variations in ear shape among us what make whisper-down-the-lane possible (and entertaining!)? Maybe ears are as unique as snowflakes. Big flesh-colored snowflakes stuck to the sides of our heads. That's it. Now I'll just sit by the phone and wait for the Nobel people to call.
One thing my obsession has revealed to me: in all these things, regardless of the integrity or shape of the ear, there's beauty. Or at the very least inoffensiveness. And some days that's the best thing you can hope for.

"Nature does nothing uselessly." -- Aristotle

Saturday, June 27, 2009

We Heart Brad

If it's Saturday, it must be (drum roll, please) Atresia Repair Surgery Evaluation Day!! WOOT!!!!1111
Long story short (cherish this moment, they don't come often), Sandi, a.k.a. "Mommy," and I identified the surgeon we'd like to perform Ethan's atresia surgery if he's eligible. The lucky doctor? Bradley W. Kesser, University of Virginia Health System, Charlottesville, Virginia. I know, right? Magna cum laude at Princeton, a list of awards as long as my arm that ... well, I confess I have no idea what any of those are but they look impressive as hell. Plus he has a really comforting smile, like a cross between John Denver and Justin Timberlake's brainy brother. This is the guy my parents wanted me to be, and the guy I'm sure I could have been ... if I were smarter, didn't smoke my way through state college and art school and had a modicum of a work ethic.
Several upsides to working with Dr. Brad, namely we're only about 4 hours away, so there's no air travel, and if we DO need to stay over for whatever reason, we have family and friends in that area who would LOVE to have us impose. Right, family and friends? I said RIGHT, FAMILY AND FRIENDS? That's better.
In true bass-ackwards fashion, we learned of Dr. Brad through the surgeon we chose to perform Ethan's Medpor reconstruction, Dr. Lewin (whom we also heart). We learned of her through the Yahoo! Atresia-Microtia discussion group (our extended family -- love you all!), where she was identified as easily one of the best in the country, if not the world. Dr. Lewin came up as the protege of Dr. Reinisch who developed Medpor surgery and is considered to be the guy. Really not much to decide there, right? I mean, that's like having Benz of Mercedes-Benz work on your car.
Now I confess that I'm often star-struck and get weirded out in the presence of greatness. Just ask Stevie Wonder, whom I met when I was a room service waiter in Atlantic City (he wouldn't remember me by name, so just say, "the guy who shook your hand for a half hour and wouldn't let go, who kept babbling crap like, 'I can't believe I'm shaking Stevie Wonder's hand!'"). So I fully expected that the e-mail I sent to Dr. Lewin would end up in that proverbial pile of never-opened fan mail, much like I imagine happened to the underwear I once mailed to Jonatha Brooke. But to her credit, Dr. Lewin called me back within 2 days. On a Saturday. From her house. Where I could hear her kids playing in the background. I seriously doubt Benz would fix my car on a weekend. We spoke at length about Ethan -- not just about his condition, but about him, which totally put me at ease. She gave me the procedural outline we would eventually end up following, which included the names of the only two atresia repair surgeons she felt comfortable recommending: Dr. Roberson in California and Dr. Brad in Virginia. (I have a hard time calling him Dr. Kesser because that reminds me of Kissel from the Jerky Boys. "Uncle Freddie's dead!? When are you coming to fix my sink?").
We seriously considered Dr. Roberson since we could have both the atresia repair and the Medpor reconstruction done in the same day (which would be friggin' AWESOME!), but ditched that idea since it a) would require full payment up front that may or may not end up being reimbursed by our insurance (she suggested that regardless of whether or not they ended up paying, we would be in for a fight. Sigh.), and b) would require about a month's stay in California. Not that we're against California -- we're not. We love California. But we're not made of money and have employers who might frown on us checking out for 1/12 of a year, even if it's for noble reasons.
So we looked at Dr. Brad. We asked questions of those parents of children on whom he's operated and learned that in the atresia repair world he is the guy. If the word on the street is to be believed, his awesome skill as a surgeon is surpassed only by his compassion and winning way with kids. Good. I don't even want Benz working on my car if his heart's not in it.
I contacted Dr. Brad's assistant, Ronnie Bean (who reminded a little of David Spayde on the phone: "Mmm hmm. He's not really 'seeing' anybody right now, so why don't you just leave that with me, m'kay?"). Ronnie gave me my next batch of assignments: Dr. Brad would require a CT scan of Ethan's head, a copy of his last hearing test, some photos of the ear and a nice letter. So we scheduled the CT scan (which happened this past week -- pretty uneventful as these things go, but the pre-scan angst I experienced could easily fill another blog entry). I got copies of the hearing test. I took photos of Ethan and printed them out. I wrote a nice letter, though not nearly as cheeky as these posts. Then this morning I went to the post office and sent the lot to Dr. Brad's attention. And so, in parlance that would make my B-17 pilot dad proud, I will say, "Roger, red leader. This is Papa Bear. The bird is away. Repeat, the bird is away."
Now sing it with me: "We love you Bradley, oh yes we do. We love you Bradley, how we love you. If you can't fix Eth we're screwed. Oh, Bradley, please come through."

"Like the bird that sails the thermal sky, trusting the invisible. How can I fall? How can I fail? When I'm Jonah, Jonah, Jonah inside the whale." -- Francis Dunnery

Friday, June 26, 2009

"I'm goin' to pick a fight."

Thursday, June 25, 5:35 p.m., ride home.
"Hey, Eth. How was camp today?"
"Yeah baby?"
"Some of the kids were mean to me. One of them pushed me and another threw mulch in my hair."
(Me, internally: Blood pressure rising slightly, but this is not unfamiliar territory with kids. And seeing as this is Ethan's first week at a new camp after he'd been going to the same daycare for his entire daycare-going life, some adjustment period is to be expected.)
"Well, sweety, I'm sorry. Did you tell your teacher? Did you blahblah ... (at this point I'm vaguely aware that I'm still talking, but have no idea what I'm saying. My mind is busily working to create a calmer movie than the one that's currently flooding its screen: Ethan being beaten, Reginald Denny-style, by the Jennersville Y's version of the Crips)
"Yeah, I told her. She made them stop."
"And was everything OK after that?"
(Silence. Too much silence. Maybe he didn't hear me. He does only have one ear.)
"Eth, was everything OK after you told your teacher?"
"Nyah, some of the kids started making fun of my ear."
Well, what actually came out was:)

"Yeah? And how did you handle it? What did you do?" (Please tell me you beat they ass! I mean, what kind of sick fuck makes fun of a kid's deformity? In my head I'm gearing up for battle with some about-to-be-really-unlucky parents: 'Is that the kind of thing you teach your kid? To pick on someone with a birth defect? Whaddya, take them to the school for the blind on weekends so they can practice being assholes in a target-rich environment? ...')
Eth, quietly: "I told them I was born this way. I told them not to pick on me." (Good for you, little man. Stand your ground ... And THEN you beat they ass, right?)
"And did they stop picking on you after that?"
"What? What was that, sweety? Yes or no?"
"(quieter) Nyah." ("Nyah" is Ethan's non-commital response -- his "Aloha." Sometimes it means yes, sometimes it means no. Gotta wait this one out and let him clarify. Silence. He obviously wants to talk about this, but my response must be making him uncomfortable. Maybe I'm not as calm and collected as I think I am. Can he hear it in my voice? Dear god, is this how the rebellion will begin? Him feeling he can't approach me about anything? ... tick, tock. Silence. Pressure building. I'm gonna lose it. What would a good dad do here? ... Silence. ... Annnnnnnnndddddddd FUCK IT, if I'm not a good dad, then so be it. I'll come to terms with it later. Here goes nothing:)
"Eth, let me tell you something and I really want you to listen to me and remember this for the rest of your life: Some people suck. They're miserable, horrible human beings and there's nothing you can do about them. They'll always be here and you'll always have to deal with them. But you don't have to take shit from anybody. (Yes, I curse in front of my kids. Often.) Let me tell you, you did exactly the right thing. You told them to stop, you told your teacher. You did nothing wrong. THEY refused to listen. THEY took it to a new level. THEY made the choice to ignore you and your teacher, and THEY kept picking on you. So the next time any of them starts shit with you, I want you to get up in their face -- you put your forehead right on their forehead and show them your war face (No, I don't let them watch Full Metal Jacket). And when you got their attention, you tell them to knock it the fuck off or you'll be bite THEIR ear off. (Damn, did I just say that? Quieter:) But don't really bite their ear off, baby. No, that wouldn't be good. (Louder again:) But if one of them pushes you, you knock their head in. Just like when you fight Thomas (his 6-year-old brother. Jesus, if I ever filmed them fighting I could make a fortune. Alas, bad parenting is achieved in levels and one only cheats oneself by cutting corners, grasshopper. Still, I feel I'm really on a roll here. Eat my dust, Bill Cosby!). And ..."
"Yeah, baby. What is it?"
"It's OK. They stopped. They're my friends. We played cowboys. (Some name I didn't understand) pretended he was a horse and I rode him and I got to be the Sheriff."
(Ummm ... awkward).
"Oh, that's great, baby. So now you all get along?"
"Nyah." (this time I'm pretty sure he means 'yes')
"Now they're all your friends? They don't pick on you any more?"
"Nyah." (yeah, I'm pretty sure that meant 'yes' to the first question and 'no' to the second. God bless his verbally economical heart!)

OK, so now I feel like a jackass. My son has gone Quaker, and behind my back has mastered the art of conflict resolution. The extra gallons of adrenaline coursing through my bloodstream have now all gone to the pride gland and I am overcome by just how special this little guy is. The rest of the ride home was me quietly beaming, Ethan rambling about all the great games he and his new friends played.
Home now, dinner dishes done (no thanks to me!), settling down for the night, kids playing in the family room. As usual, there's a tussle between the boys that Thomas has undoubtedly started. Then, as if from a dream, I hear Ethan say, "You quit it or I'll bite your fucking ear off!"
That's my boy, Eth. That's my boy.

"Speak when you are angry and you will make the best speech you'll ever regret." -- Laurence J. Peter

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