Rory O’Donoghue | Voices | Spring 2019
Waking up on the operating table, I looked down and felt like I saw salsa again, but this time it was blood radiating out from my bandage. My chest was rabbiting up and down, horrifying and uncontained. I remember the visual shock before the pain, but then my eyes spun out and pain hijacked my senses. I had broken bones before—a collarbone, a leg, my nose—but this was another realm entirely. I sobbed in the ICU and begged for anything that could help as my parents massaged my hands. I was on intravenous narcotics, and an epidural was lodged midway up my spine, but I felt sober and busted as fuck.
“You shouldn’t be feeling anything,” the nurse added helpfully as he dressed my bandage, “that epidural is loading you up real good,” and I wanted to bite his head off.
“It… hurts… so… bad,” I whimpered. Each word eviscerated me. Eventually, nurses gave me oral opioids, and I slipped into a groggy din.
***
Ravaged. Such was the immediate aftermath of the Ravitch procedure, a corrective operation for a congenital chest wall disorder—pectus excavatum. The name was like an incantation when I first learned it, beguiling, before I knew its full potential. Pectus Excavatum! Now, almost two years after my operation, the condition sounds much more insidious. It exploded into an epidemic menacing my extended family. I was patient zero.
The night before my surgery, my best friend Amelia called me from Alaska.
“I showed your family the salsa video,” she told me, trying to calm me down. “Your mom laughed but your dad couldn’t watch—he was too uneasy.”
I touched the bruised hollow of my chest, sunken deep in between my pecs and large enough to easily fit an entire fist. I remembered how my friends had eaten salsa out of it at the reservoir several summers ago. The beach was packed, and I was wildly uncomfortable—it had taken a lot of mental acrobatics before I had taken off my shirt at all. Amelia poured the chunky Tostitos over my chest, a makeshift ramekin, and it felt like icy sludge. We went through two bags of Hint of Lime chips, and filmed the whole feast.
Since then I’d grown, escaping most of my high school anxieties. Although my dent deepened in the years since that video was taken, I felt more at ease. This evolving sense of security continued, blooming until my body hit its carrying capacity.
“I can’t believe I’m getting fixed tomorrow,” I confided, marveling at the sheer absurdity of my impending reconfiguration. “No more chips!”
Many months and a twisted series of events later, I found myself comforting my older cousin Keelin on the eve of her own surgery.
“Yeah dude, I’m freaked.”
She looked it. I took a generous sip of cucumber martini as I listened, searching for something reassuring to say to her. I traced the edges of my scar, a year and a half old but still a jagged line etched down the front of my chest.
“It’s a new life, starting tomorrow. You’re going to feel so much better.”
As I spoke, I felt a jumbled knot of responsibility, but also helplessness. Her parents were there, too, all of us out to eat for Keelin’s last non-hospital meal for a while. Everyone was on the brink of unravelling.
“You’re my rock,” she responded, taking my hand. “I’ve been so all over the place. I cried at karaoke till the bar closed last night. I look at how wonderful you’re doing now, though, and I know I’ll make it through.”
“Yeah you will!” I hoped I sounded convincing. “Listen, O’Donoghue Dent Club means business. We’re fighters.”
Later that night, I spiralled through the harrowing events of the past two years. Keelin’s would be the fourth major reconstructive chest surgery in the family, a now far too familiar cycle that all started with me.
I was doing wonderful, but Keelin’s imminent operation had me reeling again. First me, then my younger sister; now, my cousin. I still wasn’t over the shock of such a serious condition lying latent in each of us. What about the others? I worried about my endless clan of Irish-Catholic cousins. What if someone else is next?
***
The human sternum, or breastbone, can tragically go any which way. Pectus carinatum describes an uncommon condition where the sternum protrudes outward, jutting out from the chest wall. Pectus excavatum is just the opposite, where the sternum plunges inward and depresses the thoracic cavity. Each condition brings its own host of health problems, but excavatum squeezes, inhibiting the regular room the lungs and heart take to function. It carves a chunk out of the working capacity of the chest, bowling in where it should be filling out.
This was the main takeaway from the Googling I did in high school; as a clarinetist prepping for conservatory training, I started psyching myself out. What if the crater hindered my progress, or even my career? It changed with puberty and seemed to be continuously expanding. Confident that I felt mostly fine, active as both a musician and a student athlete, I struggled to comprehend its potential. Tracing my contours in the mirror, I gave myself pep-talks.
You’re beautiful.
You’re healthy.
You’re okay.
Pediatricians never said anything about my disfigurement. I scoured the internet, and as I read, I grew more aware of the chest space I lacked. A big chunk was missing. Sifting through pictures and other people’s testimonies, I had no gauge of how severe my deformity was. Or maybe—in some repressed back alley of my mind—I knew something was awry.
Senior year of high school, I made an appointment with my physician. After explaining my concerns and discussing the condition, he red up the ancient HP monitor in the patient room and printed out the Mayo Clinic overview of the condition.
“It’s all I got,” he apologized, handing it to me. “So long as you aren’t in pain, I think you’re ok.” Dismayed by this wet-lettuce diagnosis, I saw no other option but to continue on into the uneasy unknown.
***
With pectus excavatum, rather than staying relatively parallel, the pectus sternum sinks down toward the spine, approaching perpendicular. is intrusion pins the heart against the spinal cord, smooshing the lungs outward. The condition ranges from merely cosmetic to dangerously severe, with many murky stages in between. For conditions that need surgery, several different routes are
available. Circumstances are best when the condition is flagged earlier in life, allowing for easier corrective recourse. For older, more ossified patients, especially those with deep-trench dents like me, the invasive Ravitch procedure is likely the best option.
The primary issue of pectus excavatum is the way the malformed hardware angles the sternum down toward the heart, which is what the Ravitch aims to correct. First, the surgeon severs the ribs and cartilage attached to the sternum. Once freed of the abnormal tissue, the sternum bounces back into correct position, buoyed up by the strong muscles of the heart. A titanium plate is then affixed atop the sternum, fastened it into place with screws drilled into the bone. Once a valley, the chest wall is reworked into a plateau. With reconstruction complete, sternum parallel with spine, everything is stitched back up and made to look as neat as possible.
Over the years that followed my sparknotes-style pediatric visit, I continued my research, and poured over pictures of scars. Some were faint traces, threadlike, and some were gnarly shark jaws. Fantasizing about flatness, I wondered how it would feel to be rid of my own extreme topography.
I repeated this cycle every few months, often following some instance of insecurity. In moments of confidence, I fell back on the cautious ignorance of my uninformed pediatrician, twisting it into reassurance—surely he would have referred me to a specialist if I needed it? But I never fully drove out the incipient doubt lodged firmly deep down.
What if my skeleton bowls further inwards and I slowly squeeze myself out? What if the hollowing completes itself and I have a hole that goes all the way through like a human cheerio? What if I’m impaled, but there’s nothing to impale?
I eventually felt tired and ambivalent about it all. So what. There’s nothing I can do. It was my own little quirk, and sometimes it even had its perks.
Freshman year of college, I’d allow a chosen few to take body shots out of me at parties. It was very intimate, and disgusting, but it was fun. My dent was also immensely practical for snacking—I could firmly lodge a bowl of cereal in it while lying down.
If I breathed in and out while swiveling side to side, my dent would work my lungs like bellows, forcing air in and out. This was completely involuntary—I didn’t have to actually breathe; the squeezing breathed for me. I would feel extremely lightheaded, but generally I thought it was kind of cool.
Moreover, there was a disconnect between the visual and the physical. My chest looked every bit as bizarre as the serious cases sprinkled throughout the internet, but my symptoms didn’t seem severe. A lifelong cross-country skier, I never noticed a discrepancy between me and my teammates, even though the one 25K race I ever did felt like slowly dying a two hour death. I ran, I skated, I swam.
As a wind musician, I pushed. There were moments in orchestra where my vision would blur, but it was usually at a point of musical climax, everyone wrapped in full-blown intensity; I assumed it was hard for everyone else too. During one outdoor concert, I suddenly weakened and felt my clarinet slip between my fingers, nearly hitting the ground before I caught it. I skipped the next few measures, recovering, and was soon fine. These experiences were normal, simply the ones that
governed each day, and I thought little of them.
My symptoms felt even more inconsequential compared to the horror stories that populate the pectus community online. Posture is a big one—some people are permanently contorted, twisting around themselves like frayed rope. Some people can’t walk upstairs without stopping for air. Some peter out mid-sentence as their lung capacity betrays them, working overtime to do half as much.
It was easy to distance myself.
Until things got worse.
As I geared up for my junior recital in April 2017, I was demanding more of my body than before. Practicing nonstop, I registered some weird chest pressure, like a suitcase crammed beyond capacity. I couldn’t stop to think about it. When my big performance loomed close, the pressure turned into pain. I kept it fully relegated to the backburner, unwilling to relent.
My recital happened without a hitch, but the pain doubled down the week after. I called Student Health, hoping for a normal appointment. They instructed me to hang up and go to the emergency room immediately. Chest pain protocol. I felt a sense of something loosening as I headed to Mercy Allen Hospital. Not an emergency visit per se, but the inevitable start of something new.
As I checked myself in and discussed the pain, I was whisked away to what I thought would be any number of different tests. The room where they took me felt tired—cracked linoleum floors, scungy pamphlets, washed-up monitors that probably should have been retired years ago. They did an electrocardiogram to ensure I wasn’t actively dying, and then the doctor on call (a podiatrist) entered the room to talk to me.
“Well, your vitals look good, nothing seems too wrong. We’ve got to talk about your chest though… it’s pretty deformed.”
“Yeah, haha, I know,” I managed, instantly recalling every offhand locker room comment that haunted my childhood. He went on. “Basically, you don’t have enough space in there for what you’re trying to do.”
“Um… what do you mean?”
“You’ve got to work with what you’ve got. Your body is made wrong. At least for what you’re doing. You’re gonna need to make some substantial lifestyle changes or else you’re not gonna make it.”
Well aware that I wasn’t exactly mistreating my body, I was skeptical and upset. What was it that I was “doing?”
I asked if he could refer me to a specialist.
“No, we don’t really do that.”
They sent me on my way, equipped with nothing but a prescription for taking it easy. I called my mom. “Yeah, I dunno.” I binge-chewed gum. “That was pretty useless.”
I located a team of specialists at the Cleveland Clinic, but they couldn’t see me until June. Two months to wait. Cue my liminal, nebulous anxiety. Pressure mounted, but the physical blurred into the mental; I couldn’t tell what was truly internal or not.
I scaled everything back, bowing out of performing for the rest of the semester and begrudgingly complying with Mercy’s lifestyle changes, which felt like a crock of bullshit. I stopped exercising, forcibly relaxed, and waited to figure out what was up.
My appointment finally rolled around, and this time I underwent a complex array of tests. One particular gem was the worst thing I’ve ever agreed to do in any setting—sprinting on a stationary bike and inducing repeated hyperventilation while my blood was drawn. They told me to wear casual clothes, but my skinny jeans and Birkenstocks were devastatingly incorrect. Afterwards, sitting ill at ease in wet denim, I finally had my answer.
The Haller Index (HI) is the standard metric for assessing chest dents. It’s a ratio of the actual distance between the sternum and spine compared to the potential normal distance, with ribcage size factored in as well. An HI under two is considered normal variation, between two and five means possible candidacy for surgery, and cases over 3.5 are severe and would absolutely benefit from surgical correction.
Mine was a 6.9.
“A… what?” I stammered.
“Yeah, it’s a big boy,” Dr. Raymond joked.
“Your HI is in the top 5% worst reported cases.”
“For some people it’s more a matter of cosmetics,” he explained. His voice was warmly comforting, sturdy and tinged with a light asthmatic wheeze. “Their chests are abnormal enough to warrant concern, but we can’t really guarantee that surgery would improve things one way or the other. With you, there’s no question.”
As I listened to Dr. Raymond, I felt as if the leatherette chair firmly beneath me transformed into an ejection seat, catapulting me into the air. I was still recovering from the blood-bike stint, but my heart rate took off again. He went on.
“Your breathing capacity is—at most—70% of what it could be. Your circulation is greatly impacted. Most people in your condition can’t even walk up stairs. We’re frankly pretty baffled that you’ve made it this far unencumbered. It’s going to change your life.”
It was as affirming as it was terrifying. Suddenly, everything leapt into flux. Above all else, I felt quiet validation. Life truly had been as hard as it felt! A less constricted future is possible? I called my parents, excited to finally have some clarity, and told them I had good news.
“WTF,” they reacted when I told them the prognosis, “that is not good news.”
This response sobered me up.
Everything was set to change. I cancelled my plans to study abroad, full scholarship, at 中央音乐学院 (Central Conservatory of Music) in Beijing. I called the clarinet instructor at the prestigious summer festival I’d been accepted to and told him I couldn’t attend. Dr. Raymond thought it best to move quickly, and I scheduled my appointment. I had three weeks.
***
Surgery steamrolled me, flattening everything out, and the immediate aftermath was all violet haze as my new form solidified. My senses slowly trickled back, grappling for autonomy over the dizzying array of narcotics coursing through my system, and I re-met my body. Recovery was an amorphous blur, and I measured it by triumph checkpoints:
Day 2: I breathed my deepest breaths. I cried at the awe of it all.
Day 4: My catheter was removed. Peeing autonomously was a momentous victory.
Day 5: Released from the hospital, I took my first car ride. Even the smallest jostle was an intimate reminder of the new titanium sorely affixed onto my sternum. Still, leaving the hospital was joyous.
Day 7: “You have a visitor!” My mom woke me and stepped out of the way to reveal my boyfriend. “Hi!” he said cheerily. He flew across the country to surprise me, and I was certain I was hallucinating. “… What?” I was dumbfounded, and turned to the wall to clear my vision. But he was there, and my heart flooded with lightness.
Day 10: My drainage tube, which siphoned out upwards of 30ml of bloody pulp per day, was removed. “Exhale!” my doctor commanded as she pulled it out from the tiny incision above my belly-button, but I gasped. The tube was 10 inches longer than I expected.
Day 17: I weaned off Oxycodone. Although I still kept up maximum doses of Tylenol and Ibuprofen, sensation sharpened into a grittier reality. I felt raw.
Day 22: Dr. Raymond cleared me to make the long flights back to Alaska at last. Turbulence bruised me, and I felt like I might split open. I was home.
In an effort to find clarity in all the murky delirium, I walked. I treated myself to a Fitbit and spent my days in the woods, taking my dogs on five, six, seven mile expeditions. Everything was easier than before. Climbing steep hills, my eyes stayed sharp, free of the dizziness I had always taken for granted. Bewitched by interior Alaska’s summer sprawl of 24-hour sun, I walked my way through recovery. Days and nights of hikes turned into weeks and months:
Month 2: I flew back to school for fall semester, relying on complete strangers to lift my bags and open doors for me because I could not.
Month 4: At last, cleared to run! That first time back on the treadmill, my atrophied muscles were quaking but my lungs were so full.
Month 6: Finally, blissfully, I got to take my back brace off. I lifted more than 5 lbs for the first time in 6 months.
These first few months were grueling, full of maddening plateaus of progress and speckled with sharp, bitter pain, but the sheer newness of everyday activities was thrilling. Walking my dogs. Standing up quickly. Holding my breath. Every activity was imbued with a newfound ability. So this is what it feels like.
***
Just as I emerged from the danger zone post surgery, my family flew into chaos once again. Rachel needed dent surgery too. Thirteen and on the brink of high school, my spunky younger sister had gone through the slew of tests back when I was in the hospital, just to be safe. We knew she had pectus excavatum too, and I had urged my parents to get hers looked at while we were all in Cleveland.
“I don’t want her to end up like me!” I guilted them dramatically, and unfairly. They, of course, felt terrible that I’d gone so long without seeing a specialist. And now her tests had come back. Hers was severe.
My parents chose Cleveland Clinic, my own thoracic alma mater, for Rachel’s procedure. Suddenly the four of us were there again. Younger and infinitely more malleable than me, she would be undergoing the Nuss rather than the Ravitch, the minimally-invasive of the two. Nuss incisions are cut at the side rather than down the front, into which a curved stainless steel bar spanning the entire chest is threaded. Angled down, the bar is then torqued outward, popping the malformed cartilage out as if fixing a dented car. If all goes well, the hardware is removed after two years, unlike the Ravitch’s permanent plate, and the ribcage holds its new structure on its own.
As Rachel went through her prescribed pre-op routine the night before her appointment, she maintained ferocious chill.
“It’s gotta get done,” she said matter-of-factly, “so I’m doing it.”
We called our brother, who was born between the two of us and irritatingly unafflicted by the condition. He felt bad, wishing he could be there. He also didn’t exactly know what we were going through, and the older brother in me was relieved to keep him away from all of it.
Rachel sounded so unbothered. She had been by my side throughout my entire ordeal, witnessing my agony in the ICU first-hand, and here she was, assuaging the rest of our anxiety with her own steadfast confidence. I loved her so much for it.
Early the next morning, she was markedly more tense as we headed to the hospital, but still determined.
“I can’t wait to boss people around!” she joked. “You’re gonna be my servants!”
I’ll do anything for you, I thought, terrified. Please please please make it through okay.
Even as she changed into her gown, she kept her resolve. A nurse gave her “happy juice,” a pediatric cocktail to ease the worries most kids experience. She unnervingly laughed herself to sleep. We could do nothing but wait.
Watching my sister go through hell was far worse than going through it myself. From her first waking hours, tripping hard in the “Harry Potter Land” she emphatically described to the nurses, to the long days of harsh reality that followed, I held her hand and willed her to be safe.
She was immensely nauseous, annihilated by each successive incompatible narcotic that her care team tried, and each time she vomited I imagined her bar racketing around inside. I snapped at the nurses. I berated my beyond-exhausted parents, harping on them every time they misremembered a minor detail while talking to doctors. I spent night after sleepless night in her room. Even though I wasn’t helping anything, I couldn’t leave her.
Her surgery happened during my spring break, and as soon as she was discharged from the hospital I went back to school. Her initial recovery was much like mine—hard, amorphous, changing day by day. My family eventually headed home, and I felt a wash of guilt-tinged relief.
“The bar slipped,” my mom said blankly, in shock.
“It’s been moving. They looked closely at her two month post-op x-rays, and it’s rotating upwards.”
I sunk into a sick dread.
“The shift is driving it like a wedge against her sternum,” my Dad followed. “They’re worried it’s going to depress back down.”
Aside from immediate complications, recurrence of pectus excavatum is every patient’s main concern. It occurs in just around 10% of cases. Rachel’s hadn’t fully recurred, but doctors flagged the warning signs during her check-up, and called my parents.
“She’s gotta get it redone.”
It was only a matter of when.
“It’s a little riskier,” her new doctor, a specialist in Nuss redos (who studied under Nuss himself) at Children’s Hospital of the King’s Daughters in Virginia, explained. “We have to work around all the scar tissue, and we won’t know how much there is until we’re in. But the sooner, the better.” They would remove the old bar, cut away the messy lattice of scar tissue, and install two new ones.
This was my deepest fear. Relapse and a second surgery seemed inconceivably awful. And now Rachel had to go through it.
***
However frightening, surgery came and went, upending everything once again but much more successful than the botched first go round. I couldn’t be there this time, which was probably a blessing for everyone involved.
Fittingly, Hurricane Florence was in full swing, menacing Virginia and complicating an already dramatic process. My parents slept at the hospital because their AirBnB was evacuated. At the center of the storm, Rachel weathered the second overhaul of her body well, and everything went smoothly.
She kept the first bar and fashioned it into an earring rack, mounted on a backboard she painted. It’s a substantial size, at least a foot long and alarmingly thick. “And soon I’ll have two more!”
Keelin’s went well too. She’s now five months post-op, Rachel nearly seven (from the second operation), and come June, I’ll be at two years of unrestricted breathing. Life—this new, more manageable one—feels surreal. I still scrutinize myself in the mirror, chronically self-obsessed, but it’s no longer flushed with fear. I look at myself and think about my heart, lounging around happily in its new terrain. I celebrate my lungs and imagine their abundant joy at inhabiting such luxurious quarters.
Maybe I’ll run marathons. Or maybe I’ll just sit outside, happily taking in each billowing chestful of summer’s air, silky-sweet. Either way, it’s a delightful gift to finally feel whole.
This is the future I see waiting for Rachel and Keelin. We are all getting through this together. It’s a makeshift support group, but it’s a lovely one—no one else really understands. We’re the O’Donoghue Dent Club, an illustrious society composed of our own weird trifecta. Benefits of membership include permanent bragging rights, grisly scars, and a whole lot of shared empathy. The ODC is a highly exclusive club; as Founding Member, I’m hoping for no more recruits.
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