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On retainers:  part one

Moving to central Pennsylvania changed Jamie’s life in many ways.  He finally got his own room, at the age of ten; he learned to swim; he developed a keen taste for Indian food (central Pennsylvania is world-renowned for having invented Indian food); and he learned the phrase “two hour delay.” Central Illinois could get crazy bitter cold in the winter, but it rarely snowed enough to cancel school.  Here, with the snow and the mountains, two hour delays and cancellations are quite common, which also means it’s quite common for Janet and me to hear our teenage Jamie come halfway up the stairs to our attic bedroom at 7 am and announce, “two hour delay!” Today, however, we had an announcement for him: no school!  It’s the second cancellation in a week.  So while he’s off at the Y playing basketball and video driving games, I figure this is a good time for a Jamie story.  It’s a long one, so I’m going to do it in two installments.  Part two will appear tomorrow.

Before we left Illinois, Janet and I decided that Jamie could use some serious orthodontic work.  We also decided that he needed a tonsillectomy.  We also decided that this was a lot of stuff to impose on any nine-year-old, let alone a nine-year-old with a cognitive disability who really didn’t understand why any of this would be desirable or necessary.  We also also decided that we were making these decisions for Jamie’s health and well-being, not for cosmetic reasons.

(Four years ago I wrote a short essay about the ethical dilemma entailed in these decisions; it was published in Literature and Medicine, and the teaser is here.  Those of you with access to MUSE can get behind the firewall and read the whole thing, if you like; for the rest of you, I’ll reproduce and update a bit of that essay—namely, the next eight paragraphs—here.)

On June 5, 2001, Jamie went into surgery for a tonsillectomy and multiple tooth extraction.  We wanted to have these things done before we left Illinois and all the doctors most familiar with him; we knew the tonsillectomy was the proper thing to do for his persistent sleep apnea; we had decided to combine the procedures rather than submit him to general anaesthesia twice with his possibly compromised airways; and we had become alarmed that his baby teeth weren’t budging even though his mouth was too small for all his budding adult teeth.  So, then, his tonsils and five—count ‘em, five—teeth would be removed in two simultaneous surgical procedures, combining a surgeon from ear-nose-throat and a surgeon from oral-maxillofacial in a plan that required only eleven months of preparation and a ream of hospital paperwork just slightly less complicated than the invasion of Normandy.

Jamie had very little idea of what would happen to him before he went in for surgery that day, and what pained us most, in the painful aftermath of his surgery, was his bewilderment and irremediable ignorance.  Months earlier, he’d been subjected to the requisite sleep apnea test, which meant that he had to show up at the hospital for an overnight stay during which he would have an array of electrodes fastened to his skull.  Janet accompanied him and assured him that although he would have wear some “wires,” everything would be all right.  Jamie responded by asking whether “lemur,” his little stuffed lemur (at the time, all his stuffed animals had such names, like “anteater” and “buffalo” and “gibbon”; now their names are far more extravagant), could have a wire too; the hospital tech staff went along, dutifully prepping lemur for his electrode.  All this was very cute, of course, as was his faint but palpable delight, in his post-surgery bed on June 5, at having four small stuffed animals stacked on his bed who would all fall over when we pulled the anteater’s nose.  But in the exhausting weeks that followed his surgery, nothing was cute, and nothing was delightful.

Jamie had his surgery on a Tuesday morning, and his doctors determined that it would be best for him to stay overnight.  Janet stayed with him.  He coughed up some blood that night; his surgeon came in to look at him, and decided that all was well.  Janet, now on high alert, didn’t sleep again until I arrived early the next morning.  Jamie was watched carefully all day, particularly for signs of dehydration, and was released later that afternoon.

That Thursday was quiet; Nick and I went to a Cubs-Cards game up in Chicago, and Janet spent the day telling Jamie that he needed to drink lots of juice and Gatorade.  Jamie’s throat was raw and five of his teeth were missing; he didn’t feel like doing anything but watching TV and drifting in and out of sleep, which was most unlike him, but Janet kept up a steady flow of liquids—and warnings, gentle but firm: you have to have fluids, and if you don’t drink them through your mouth we’ll have to go back to the hospital for an IV.  And you don’t want that, so here’s your juice, and your pillow, and your lemur too.

On Friday morning Janet left Jamie in the playroom for a moment, put on some coffee, and then came back to find him in a small but spreading pool of blood.  (She’d been alerted that something was wrong by Lucy the Dog, who came out of the playroom barking, “hey, hey, something is wrong.”) He had popped a bleeder, as they say in the business.  But we didn’t know that at the time.  All we knew was that we needed to get him to the hospital immediately for another dose of general anaesthesia and (at the very least) a cauterization of whatever had opened in his throat.  Jamie looked at me desperately and pointed to the blood that had soaked the Sammy Sosa shirt Nick and I had bought for him at the Cubs game.  “Please clean?” he asked in a tremulous voice.

Jamie was treated and released on the same day; though the morning had been dramatic and heart-rending, it became gradually clear that this was only a minor glitch, that a quick cauterization would in fact do the job.  But although Jamie was all right physically by Friday night, psychologically he was shaken.  For 72 hours he’d been told that if he drank his juice and Gatorade he would get better and wouldn’t have to go back to the hospital.  He’d done as he was told, but to no avail: he’d gone back anyway, to anaesthesia and grogginess and a fresh IV in the back of his aching hand.  And now he was inconsolable.

The weekend was terrible.  Janet had to leave to close the deal on our new house and wouldn’t be back until June 12; Nick and I had Jamie for four solid days.  He doesn’t eat sweets and was oblivious to all the nurses and assorted well-wishers who tried to cheer him up with promises of ice cream and popsicles.  His throat was now so sore and scraped that even the tiniest little swallows were excruciating, and I had to force at least 8 ounces of fluid into him each day along with 10cc of Tylenol every four hours and antibiotics every six.  Sometimes, to get any fluids into him I had to immobilize his limbs and his head with one arm while squirting a syringe into his mouth with the other.  The pain this caused him—especially when he protested vocally—almost made the Tylenol seem worse than useless.  It was like his early infancy all over again, except that now he was nearly ten, and fully conscious of everything I was saying to him, and very strong in resistance—though (and this was no consolation) weakening measurably every day.  I took him to the movies again and again, hoping he would forget himself and drink some soda along the way; normally he drains a large cup before the opening credits have finished rolling.  We saw Shrek four times in five days, and yes, Jamie did sample a few sips of Sprite and Gatorade each time, much to my relief.  (Bless you, Shrek.)

As child-care stories go, this is a fairly sombre one, and yet it’s not all that grim.  Though Jamie endured serious pain for many days and lost eight pounds—one-eighth his body weight at the time—in one week, he did recover fully.  His teeth are much better off, and he no longer has those frightening ten-second pauses in his breathing at night. 

But what made this whole episode so disturbing for us was precisely our realization that Jamie could not have given his “informed consent” to the surgery in any meaningful sense of the term.  He didn’t understand what was going to happen to him, he didn’t understand what was happening to him, and he didn’t understand how long it was going to keep happening.  Although I told him time and again that his throat would get better and would not hurt any more, I know there must have been times when he wondered if this was how he was going to feel for the rest of his life.  At some point I imagined, watching him tongue his missing teeth day after day, that he had begun to fear that he’d lose a couple more teeth every time he fell asleep.

. . .

OK, now back to the present. Four years later, Jamie now knows this story, and he now understands what the hell all the fuss was about.  But only gradually did we find out what Jamie thought about it.  That summer, Janet had tried to prep him gently for the next phrase—namely, braces—and we started shopping around State College for dentists who have experience dealing with kids with special needs (which reminds me that this whole process started in 2000 when Janet first detected his sleep apnea and I decided that his dentist wasn’t addressing his looming oral problems because hell, why bother about looming oral problems when you’ve got Down syndrome, right?—yes, some doctors still think that way).  But Janet’s attempts to explain things to Jamie (which included the reassuring information that Nick had had braces too) had a perverse effect: she told him that he would probably get braces when he was ten, and so, when he turned ten on September 16, 2001, he insisted that he was “still nine” or “almost ten.” After a few days of this, I finally got him to tell me why he wasn’t ten:  “I will be eleven and have no bracelet,” he replied.  Apparently he’d thought he would be fitted with braces from September 16, 2001 to September 15, 2002, and this was his way of letting us know he didn’t care for the idea.  (He now knows this part of the story too, and thinks “I will have no bracelet” is very funny.)

Well, he didn’t get braces when he was ten.  His adult teeth came in just fine as a result of the multiple tooth extraction, but we still weren’t sure just how aggressive we wanted to be about crooked teeth.  Our options ranged from the extreme—a procedure so complex and intervention-laden that I referred to it as skull replacement surgery—to the laissez-faire: let’s just chill and see if any problems develop down the road.  After a bunch of consultations, including consultations with Jamie, we agreed that braces would be sufficient, and that oral-maxillofacial surgery would be going way overboard.  (There is, as you might imagine, a spirited and contentious debate going on about the ethics of surgically “shaping” children with disabilities.  We didn’t—and don’t—even want to go there.  We simply wanted to minimize Jamie’s chances of having oral health problems as a teenager.)

So for the past two years, we’ve been in more or less Ordinary Teenager-with-Braces Mode: Jamie got his braces in March 2004, and every so often Janet and I would take him to the orthodontist to have them adjusted, repaired, tweaked, refined, augmented, or replaced.  There was one almost-scary moment last year when one of his wires popped loose from a molar bracket, so that he had a fine metal wire sticking out on the right side of his mouth; “Michael,” he said, calling me into the TV room, “I need help.” And he did!  I asked him to hold very, very still while I cut the wire with, well, you know, wire cutters.  And he did!  (I managed to keep the cut wire from falling into his throat.) There was also one almost-comic moment when I drove him to school after a braces appointment only to realize that I’d left his backpack at the orthodontist’s.  “What’s the matter, Michael?” he asked when he saw me slap my forehead.  “Oh, sweetie, we have to go all the way back to the doctor’s and get your bag,” I said.  “I’m just doing everything wrong today.  I feel like Neville Longbottom.” Jamie put his hand on my shoulder and consoled me: “You are not like Neville Longbottom, Michael.  It’s okay.”

Jamie got used to his braces gradually and gracefully.  At first they were painful and weird, and his speech was unintelligible for a few days.  But he got used to the feeling, and he got used to using one of those tiny between-the-braces brushes.  He was really quite grown-up about the whole thing, and we praised him heartily and often for being such a great kid about his braces.  And I promised him that when they finally came off, he would be allowed to eat . . . beef jerky!  He responded to this promise with much hand-rubbing glee.

Tune in tomorrow for the shocking conclusion, “On retainers:  part two.”

Posted by on 12/15 at 10:58 AM

  1. That was a sweet and helpful story. My younger daughter’s autistic and we’ve had some extra medical incidents including a cluster of seizures over several months. Just getting her through the blood tests and neurological tests was difficult enough so I can only imagine what managing surgical recovery would be like. Jamie sounds remarkable in how well he managed every one of these issues that would be traumatic for any child (and family).

    But one note, Neville Longbottom may be a bit forgetful, but he’s pretty cool for all of that and definitely brave. It wouldn’t be that awful to be like Neville!

    Posted by Ancarett  on  12/15  at  01:38 PM

  2. Wow, Jamie’s a trouper. My sixth-grade multiple-baby-teeth general-anesthetic extraction and my tonsillectomy at age 28 (I lost eight pounds too!) weren’t nearly as tough as Jamie’s combo. (Did the stains come out of the Sosa shirt?) And I whined throughout my orthodontia tenure.

    Posted by Orange  on  12/15  at  02:02 PM

  3. But one note, Neville Longbottom may be a bit forgetful, but he’s pretty cool for all of that and definitely brave. It wouldn’t be that awful to be like Neville!

    Quite true, Ancarett!  But around that time, Jamie and I had been talking about Early Neville, rather than the more mature and capable Later Neville of The Order of the Phoenix.

    I still think there’s an outside chance that Trelawney’s prophecy spoke of Neville rather than Harry.  Just for the record.

    Posted by Michael  on  12/15  at  02:32 PM

  4. What a brave young man!I’m not sure I would have handled those procedures nearly as well. In fact, I know I wouldn’t.

    Posted by  on  12/15  at  03:44 PM

  5. Michael, you broke the Internets.  Here I am wanting to read the entire article, I click on the link, head to the abstract and can’t find any way to get to the article.  So I decide to just go to the Muse homepage and search for all articles by “Michael Bérubé.” I pulled up nine, found “Life Stories,” clicked on it...and ended up at the abstract.  Went back to the search page, clicked on your reply to Bauerlein.  Worked.  Your review of Arac.  Worked.  “Anxious Academics”?  “The Loyalties of American Studies”?  Worked.  Worked.

    “Life Stories”?  Extract. 

    Cleared out my cache.  Extract.  Switched to Internet Explorer.  Extract.  Logged out.  Logged back in.  Extract.  Rebooted my computer.  Logged in.  Used Firefox.  Extract.  Internet Explorer.  Extract.  Stole my wife’s computer.  Went to the Muse homepage and search for all articles by “Michael Bérubé.” Pulled up nine, found “Life Stories,” clicked on it…

    ...worked.  Read it.  Enjoyed it.  Decided to share with your readers that there’s something screwy about the way Muse handles unlogged sessions from users with access to it.  Thought maybe they might appreciate it if I provided direct link to the article.

    Posted by Scott Eric Kaufman  on  12/15  at  03:54 PM

  6. That should read “searched,” but you know that.  Leave it to me to ruin the climax with a grammatical tic.

    Posted by Scott Eric Kaufman  on  12/15  at  03:56 PM

  7. Jamie’s an amazing kid. His comprehension of complex things is fantastic. It’s a timely story for me. I spent the morning learning that my thirteen-year-old daugher will need all sorts of things, including a jaw widener, braces, and eventually surgery. Fortunately she is able to understand all this and frankly was relieved that the braces and surgery have to wait until she grows more. She’s in a fairly geeky stage and not thrilled by adding braces.

    Posted by  on  12/15  at  05:02 PM

  8. Goddamn, Scott, I’d never work that hard just to read something I wrote.  And you know what?  Your link led me to the extract.

    Clare, are you sure about the jaw widener?  That’s one of the things we considered and turned down, ourselves.  Not as aggressive as skull replacement surgery, but still, we were told it involved having a big piece of metal in one’s mouth for quite some time.  Then again, if it’s necessary, it’s necessary.  That’s why these decisions are so difficult, no?

    Posted by Michael  on  12/15  at  05:28 PM

  9. Trying to explain to a young kid that the pain or distress s/he is currently suffering is going to be relieved in the near future is an incredibly frustrating experience.

    Posted by Jeremy Osner  on  12/15  at  05:37 PM

  10. It’s the principle of the matter, Michael.  Once I decide to do it, I’m going to do it...esp. if it’s computer related, since once I was a geek (stop snickering) who coded.  Now I have all the hubris of your average programmer, but none of the actual know-how.  Hence, obsessing over computer problems.  You should’ve seen me when my iPod stop working...damn near took my iLife with it.

    That said, I did want to comment on one aspect of the post/article I found particularly trenchant: Michael’s awareness of Jamie’s inability to understand what was happening to him, in part because I think it must be hard for him to believe that somewhere deep down Jamie isn’t scarred by the experience of believing he would spend the rest of his life in an irrational world in which the ones you love seem to desire nothing more than to cause you pain.  Why do I think that?  Because I constantly have to remind my parents that I’m not scarred for life because of the corrective surgery I had when I was a toddler. 

    I had been deaf since birth.  After I had corrective surgery--which no one could explain to me, since I hadn’t really ever experienced “hearing” and didn’t know why it is I should have it--all of the sudden 1) my head felt like it had exploded then carefully pieced back together by an angry chimp with a broken stapler, and 2) something was terribly wrong with the world.  The pain was bad enough, but people seemed to be so happy about my confusion that they would pick me up and do this horrible thing near my head.  I didn’t have a clue what it was, but I wanted it to stop.  Eventually they put ear plugs in so I wouldn’t hear things anymore, then the sadistic bastards would take them out and mock me with loving faces accompanied by that thing.  Yes, that was one of the most terrible experiences of my life, but there’s no part of me that’s scarred or not grateful for what my parents did.  In fact, I wager when Jamie laughs about his experience he does so the same way I’m currently laughing at mine. 

    (Although one day I’ll try to figure out how to describe the experience of “hearing” from the perspective of someone who’s never experienced it before.  It’s a bodily experience, coming into noise, as if all your other senses are knocked out of whack...like I said, I’ll figure it out someday.)

    Posted by Scott Eric Kaufman  on  12/15  at  05:53 PM

  11. Micahel:

    I am sooo thankful I read this story decades after having had braces, for the idea of having a high tension wire inside my head that could simply pop one day and impale my cheek from the inside out...wow.  Kudos for being a great..erm..."Michael" and remaining collected.  I fancy I might have thrown my hands up in the air and run about in small circles.  Not being a parent (to humans), I have nothing but admiration for those of you of the procreatin’ persuasion.

    Posted by  on  12/15  at  07:14 PM

  12. "Clare, are you sure about the jaw widener?  That’s one of the things we considered and turned down, ourselves.  Not as aggressive as skull replacement surgery, but still, we were told it involved having a big piece of metal in one’s mouth for quite some time.  Then again, if it’s necessary, it’s necessary.”

    The jaw widener worked amazingly well on my youngest son.  It is far worse on the parent i think, than on the kid.
    Well after the first two weeks or so, during the recovery process from the ortho pounding the wedges in between the teeth to make room for the turnbuckle brackets and caps.  Once that pain and soreness wears off the parent then has to open stick this extraordinarily expensive open-end titanium wrench up in there and make a couple of turns.  It feels and sounds positively awful but my son never really minded.  When that came off, and after the braces and such, he stopped having sleep apnea, stopped snoring, slept better and more comfortably, and although he has always had an amazing positive disposition he is “happier.”

    Posted by  on  12/15  at  07:25 PM

  13. Man.  I’m glad I just had four molars removed at the start of my orthodontic process.  That made more than enough room for the braces (and, as a bonus, let my wisdom teeth come in with no need to remove them).  Jaw widening? Yikes!

    I can’t imagine what it’s like to not immediately understand the point of surgery, be it for “hearing” or teeth.

    Posted by Linkmeister  on  12/15  at  08:50 PM

  14. Wow, what a story.  I remember how awful it was to have to do even simple things like give PK medicine when he was littler and uncomprehending; I can’t imagine having to approve surgery for a kid who can’t understand it, especially if he’s also physically big enough to drag out the medicine-administering process that much and make it so difficult. 

    But I think it’s totally awesome that he knows the story now and thinks parts of it are funny.  smile

    Posted by bitchphd  on  12/15  at  09:26 PM

  15. the recovery process from the ortho pounding the wedges in between the teeth to make room for the turnbuckle brackets and caps

    OK, this is making my hair stand up on the back of my neck.  But I’m glad to hear it worked!

    And Peter, I don’t think it can impale your cheek—but I don’t want to think what would’ve happened if Jamie had swallowed the piece I cut off. (It landed on his tongue despite my attempt to hold onto it and stretch his upper lip with my left hand.)

    Scott, that’s an amazing story.  Especially the part about people doing this thing near your head.  Jamie’s been tested for hearing loss almost since birth (oh yeah!  I forgot to let everyone know that he recovered from this summer’s blown eardrum just fine), and I know that when he was a toddler everything about audiology tests was unfathomable.

    Linkmeister, when I had my wisdom teeth out three years ago it took me months to recover.  Everything about teeth is weird.

    And Dr. B., just wait til part two!  That’s when your humble narrator starts messing things up.

    Posted by Michael  on  12/15  at  10:02 PM

  16. "Clare, are you sure about the jaw widener?”

    I haven’t done any reading yet—just had our initial consult this morning. Diagnostic tests to be done in February. Personally I thought the jaw widener looked awful but the orthodontist was pretty definite that it should be done before she “fused.” She has a 3mm gap between her top and bottom teeth, ie., they only meet at the back molar; she has an underbite; and one side of her face has grown more than the other.

    “the ortho pounding the wedges in between the teeth to make room for the turnbuckle brackets and caps.”

    Oh, ouch. I won’t be letting Mary read this thread! Glad to hear it was eventually positive.

    Posted by  on  12/15  at  10:27 PM

  17. a) I love Jamie
    b) I love Neville. Please to not pick on him. I think Neville is far braver than Harry, because he has to be, and I suspect he’s going to have a lot more to do with the ending that anyone thinks he will right now.

    Posted by julia  on  12/17  at  09:07 PM

  18. Oh, and Dr. B? At eight months, HM with a high fever, and I sat up with her in a bathtub full of cold water with the windows open (it was way too early in the year for that). Our cat had just recently died. She asked me in the morning “I ow. Baby go byebye?”

    Next to poleaxed in the dictionary, my face.

    Posted by julia  on  12/17  at  09:10 PM

  19. Hi, I found this entry via the Acephalous blog. I just wanted to say to Clare that I had a palatte expander when I was a little younger than your daughter (maybe 10?) and spyder is right about the kid gettting used to it. I remember that it hurt, but in a really distant and abstract kind of way. I cringe now only in retrospect at the *idea* of a hunk of metal that basically breaks the jaw open in increments, but at the time I just showed it off to my classmates (it’s more unusual and *so* much more hardcore than braces, ergo, awesome-r).

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  41. We also decided that he needed a tonsillectomy.  We also decided that this was a lot of stuff to impose on any nine-year-old, let alone a nine-year-old with a cognitive disability who really didn’t understand why any of this would be desirable or necessary.  We also also decided that we were making these decisions for Jamie’s health and well-being, not for cosmetic reasons.

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  42. What a brave kid. Great story and makes you think if this kid can go through a time like that, what can I do.

    Posted by Tony  on  12/14  at  03:42 PM

  43. Retainers.. while reading your post, I remember my orthodontist.

    Posted by Lajolla Dentist  on  09/12  at  11:44 PM

  44. He also decided he needed a tonsillectomy. It also decided it was a lot of things to impose nine years old, much less a nine-year-old with cognitive disabilities do not really understand why it is desirable or necessary. It was also decided that decisions were made Jamie’s health and welfare

    Posted by Top Business Directory  on  09/22  at  05:32 AM

  45. As once a great newspaper like the Chicago Tribune and the Rocky Mountain News of Denver goes down the drain or the staff of the Internet, the New York Times Media section of the press to keep an eye on space

    Posted by web engineering  on  10/12  at  06:36 AM

  46. I do not agree with this idea, there are things that man can not do, and women, and vice saver. So I think it’s just a matter of the idea.

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