I am walking up Prospect Avenue with my twelve-year-old son, striding side by side along the mottled sidewalk, when it strikes me he has not grown for a while. I look across at him. Damon’s head—that flame-red, leonine head—still falls below my shoulders, roughly where it had reached the previous year. He is so vital and engaging one easily forgets his size. But now his clipped stature feels like a withholding of fruition, as if his legs were young shoots held back by a clinging, invisible vine. I want to reach down and cut him loose so he can sprout. I don’t want a big change but I feel he needs a little nudge, one more click to get him over the next hump of development.
“So how was school?” I ask. Damon wears baggy jeans, a gray hooded sweatshirt, and Adidas sneakers, with a Walkman round his neck and a cell phone on his belt loop.
“Good. I got picked to read my essay for Kick Butts day.” He speeds up as we talk, swinging his arms to keep up with me, and explains that Hillary Clinton, now running for a Senate seat, is part of the visiting delegation for this stop-smoking educational campaign.
“Congrats.” I salute him. “Need any help with the essay?”
“I’ll do a draft and show you,” Damon says. We stop at Venus Video and select a musical for his audition. “Can Jon sleep over Saturday?” he asks.
“If you get your work done, I don’t see why not.” I pay for the rental.
“Yes! Thanks, Dad!” Damon smiles as we exit, his cerulean eyes dancing with open vistas. But as we continue strolling up the avenue, I again ponder his unsprung height.
He is due for a growth spurt—he is overdue—and I don’t need a tape measure or a doctor to verify my judgment. I can always gauge the slightest change in his body, to a hair’s breadth, and I have a built-in monitor of his progress embedded deep inside me, like a microchip—or is it a mirror? If we are not exactly joined at the hip, we have more than the usual father-son bond connecting us.
Damon is the oldest of our three children. Born on 8/8/88—a date so fortuitous that in China they performed premature Caesarians to snag this birthday—he was an only child for nearly five years before his brother, Sam, arrived. For most of this time, he also was a sick child who required, and received, extraordinary love and attention from his mother, Shealagh, and from me. Even after his sister, Miranda, appeared in 1995, a healthier Damon remained the focus of our family, the pacesetter.
He was born with a malformed heart, for no known reason.
Most notably, Damon lacks a second ventricle like you and I have. His good ventricle, the left, pumps red, oxygen-rich blood throughout his body. But when the blood returns from his body to the lower right chamber of his heart—blue blood now because it has given up its oxygen—there is no second ventricle to pump it back into the lungs, where it can pick up fresh oxygen and expel carbon dioxide. So Damon was a “blue baby” whose organs and tissues did not get enough oxygen. He was smaller and weaker than other infants and his gross motor skills developed more slowly. But his brain, his manual and verbal dexterity, and his imagination never lagged.
By age four, Damon had undergone two open-heart surgeries, and the second operation, known as a modified Fontan, alleviated his problem. A “passive flow” system, it bypasses his right side altogether and shunts the returning blue blood directly to his lungs, where it can take on vital oxygen and discharge carbon dioxide.
After the modified Fontan, Damon’s body received sufficient oxygen-rich blood, and he flourished.
He grew and scrambled back onto the growth charts for height and weight, even catching up to some of his friends. His color improved, his energy increased, and he became physically more active. He is a tortoise, not a hare, but he is intrepid and takes delight in activity of all kinds, from karate and kayaking to soccer and skiing.
Damon is in seventh grade now, attending the Salk School of Science in Manhattan, where he excels academically. He also is an actor who performs in every school play and then in more advanced theater workshops outside school. And he’s become increasingly popular in middle school, more of a star than he’s ever been. When he spiffs up his unruly red hair and dons a dress shirt for the school dance, cruising the room like a confident young blade, he makes an impression. He outshines the taller boys because he actually dances and talks to the girls.
Damon is never going to be the biggest kid in the class or run a four-minute mile, but otherwise he’s in great shape. He’s been healthy for the eight years since his last operation and free of all medications. He sees his cardiologist every six months and she marvels at his progress.
I am keenly aware of all this as we walk together this afternoon. We have lived through a protracted nightmare and survived to talk about it as a page from history, a backstory. I know all about patience and keeping your eye on the fundamentals. Shealagh and I have our own set of milestones for Damon, outside the standard configuration, and we feel inordinately proud of his advancement and the kind of person he’s become.
So on this early fall day of the first year of the new millennium, with the soft yellow leaves raining down from the sky and starting to blur the margins of the pavement, I dismiss my concerns as exaggerated, a common defensive ploy to contemplate the worst, just so you can say it ain’t so.
We turn into the wide embrace of Terrace Place, with the great park at one end, and walk up the front porch into our two-story brick house with its long driveway and small backyard that boasts a bona fide peach tree and a fig tree, our own patch of Eden.
A perfect spring evening at Yankee Stadium. The air is warm, with the slightest breeze ruffling the flag. The baselines and foul lines are stamped in fresh white chalk.
I have taken Damon and two of his closest friends, Kyle and Keith, to a night game against the Boston Red Sox. The stadium is packed, the fight songs blaring and the beer flowing, as befits these longtime archrivals. But the three teens don’t really care. They enjoy the aesthetics and ambience of the game as much as the competition.
“Check out the body-paint dudes!” Keith points at the bleachers, where seven rowdy males spell “Go Yanks!” in bold lettering across bare torsos.
“I think they’re drunk.” Kyle wrinkles her nose at the beefy, soft-bellied roisterers.
“Man with crazy chef’s hat, six o’clock!” Damon gestures three rows ahead, where a fan sits in a billowing, brimless white hat. “The Mad Hatter is blocking the view—”
“It’s called a toque.” Kyle corrects Damon with her sweet Natalie Portman smile.
“Duh, I think it’s a mascot for Sheffield—he’s ‘the Chef,’ ” Keith interjects, correcting Kyle.
“Really? Whatever . . .” Kyle giggles as she takes in the information.
“Hey, Dad, can we get Cracker Jacks? Kyle needs brain food.”
Kyle is Damon’s oldest and closest friend, a girl he rescued in kinder-garten when the school bus dropped her off at the wrong stop. They are the same age but Damon is a grade ahead, which makes him the sage elder. Now almost thirteen, Kyle changes her hair color every week—today it’s purple with blond streaks—and she wears bangles and bracelets and layers of colorful clothing. She is bright, vital, and quite beautiful, but her identity shifts like a kaleidoscope, with a propensity toward the darker hues.
The Cracker Jacks arrive in a giant box and Kyle and Keith dive in looking for the prize. “If it’s a ring, it’s mine!” Keith smiles.
Keith is a tall, wiry African American, wry, sensitive, and hyperarticulate. He and Damon attend Salk together. Handsome and fine-featured, like a model, Keith lives alone with his young single mother in Harlem and spends weekends with his grandmother in Queens.
“Okay, guys, we need to root for the Yankees,” Damon announces late in the game. “I think they’re losing”—he checks the scoreboard—“and we don’t want my dad to go home unhappy.”
And indeed, after eight lackluster innings, the Yanks rally and pull out the game with two home runs in the bottom of the ninth. The stadium erupts. Damon and I exchange excited high fives, connecting in the moment’s primitive ecstasy. Although not a committed fan, Damon appreciates raw emotion and the thrill of the come-from-behind. And he is impressed by my militant cheerleading for someone other than him. As he embraces Kyle in the pandemonium, I note he looks a little hamstrung, as if nursing an injury.
I wonder if it’s the aftereffects of his “fight.” Five weeks earlier, Damon came home from school with deep cuts and a grapefruit-sized swelling across his forehead. He’d gotten into an altercation with the school bully, a humongous lout twice his size.
“This kid kept shoving me and trying to get in my face,” Damon explained. “He bumped me with his chest: ‘Come on, little guy, fight me!’ ” I told him I wasn’t afraid of him but I didn’t want to fight, so I started to walk away when he rushed me from behind and smashed my head against the cafeteria table. I never saw him coming.”
Damon sustained contusions, a hematoma, and a concussion. Head injuries even in healthy people are notoriously complex, as both Shealagh and I know: Shealagh did research on war veterans with head wounds at the Radcliffe Infirmary Neuropsychology Unit at Oxford, where we met, and I boxed for Oxford University and learned about concussions firsthand. We kept Damon at home while I initiated disciplinary action against his attacker, a notorious troublemaker, and made sure this could never happen again.
Damon appeared physically traumatized yet stubbornly proud, incised with fresh, deep wounds he’s worn since like a badge of honor. He recovered, and his standing up to the class bully only enhanced his status in school as a leader. But the incident forced me to confront his vulnerability, and my own possible complicity in it. I had always taught Damon to stand up for himself and to hold his ground. But now I felt torn between a father’s pride at his son’s courage and concern that Damon not follow my example too closely, because he lacks the physical resources to defend himself. I quickly realized, however, that any cautionary advice at this stage was futile because Damon’s character had long been formed. All I could do was hug my brave-hearted bantamweight while privately resolving to watch him like a hawk.
We return from Yankee Stadium in high spirits, dropping Keith off in Harlem and Kyle in Ditmas Park. Shealagh, waiting up, gets a full report from her beaming son as we sit in the downstairs kitchen. Damon even eats his mother’s rhubarb pie as he fills her in on the triumphant game.
It’s been a good day. But now it’s late and there’s school tomorrow, so Damon moseys up to the middle floor, where he and Sam have adjacent bedrooms. Shealagh goes to talk to him and get a little private time—mother and son have their own very special bond—before she kisses him good night and leaves.
As I pass through on my way to the top floor, Damon cracks the bathroom door and calls to me from the doorway. “Hey, Dad, can you come here a minute?”
I can sense something amiss as I head to the bathroom. Normally Damon asks his mother about routine matters and saves me for the big stuff.
As I walk inside, Damon closes the bathroom door with mysterious urgency. I feel the burden of a pending revelation and brace myself.
“I wanted to show you this, Dad . . .”
Damon pulls down his pants and lowers his boxers under the overhead bulb.
“Oh man!” I shake my head. “What happened?” His testicles hang down, hugely swollen. They look four times their normal size. He’s a young kid and I am all for his sexual development, but this is alarming. “When did . . .?”
“I noticed it Friday but thought I should wait a day. But it hasn’t gotten better.”
“Poor guy . . . Does it hurt, D-man?”
He hesitates. “It’s uncomfortable.” Damon has experienced real pain and never exaggerates about such matters. “And it’s kinda awkward, you know—”
“Sure. Okay, this isn’t right and we’re going to take care of it. Pronto!”
I talk to Shealagh, then call a few doctor friends. Two scenarios emerge. A hernia, the most likely, or a twisted testicle, rarer and more urgent. And given Damon’s history, there’s always an extra element of uncertainty and fear.
We decide not to risk waiting until morning and call my parents to come over and babysit Sam and Miranda before we speed off to Columbia Presbyterian Hospital, which has treated Damon since shortly after his birth. It’s a long drive, but Columbia knows his complex case and we trust them. It’s past midnight when we reach the sprawling medical complex in Washington Heights.
Eons ago, we did hard time in this hospital and feared we’d never escape. Once, when he weighed only eleven pounds, Damon spent thirty days in the ICU, trying to come off the respirator. Now as we arrive, the dread memories rise up.
We walk past ambulances, EMT personnel, and two burly cops and enter into the perpetual twilight zone of the emergency room, a cacophony of coughing, moaning, shouting, and crying. We pick our way through the tumult and despair and request immediate care for our son. Damon’s cardiologist, Dr. Hayes, has called ahead and told them to expect us.
The admissions clerk nods, unimpressed, and gives us forms to fill out.
A well-organized unit, we establish ourselves on three plastic chairs. Shealagh distributes juice and snacks and fills out forms, I call home to check on the kids and gather intel from the staff, and Damon, after sweeping the room, disappears into his copy of The Subtle Knife by Philip Pullman.
Eventually an intake nurse admits us and we enter a more orderly if still-hectic space. Someone takes Damon’s vitals and he gets a bed with a flimsy half curtain. We wait until a young resident pops by. He checks Damon’s groin and instantly declares he has a hernia. A bona fide inguinal hernia, the gross rupture will need to be surgically repaired, but he finds no twisted testicle or undue cause for alarm.
I feel a measure of relief but continue talking to the doctor as he examines Damon. Because he is unfamiliar with my son’s anatomy—Damon’s heart is on the right side and several other organs are reversed—I fill him in while he asks questions and offers observations. I’ve long grasped that medicine is an imperfect art, fifty to a hundred years from being an exact science, so I gather information from every possible source. I’ve also learned that good doctors are not necessarily the senior people with fancy reputations—often quite the opposite—and a young resident, if he observes thoroughly and with an open mind, can tell me as much as anyone.
This resident—he has the gift; you can tell in the first thirty seconds—palpates Damon’s abdomen and casually mentions his liver is enlarged, which I’ve never heard before. When I inquire further, he lets me feel how the liver presses against the abdomen, its margins extending beyond the normal range. Damon watches us with quiet, alert eyes, always the model patient, and I wonder if this enlarged liver could explain why his belly protrudes, giving him a slouching appearance. Even in karate class, with his gi neatly belted and his back erect, his stomach seems to slump forward, and zipped into a black wet suit for swimming, he looks paunchy despite his leanness.
Shealagh and I have questioned his cardiologist about this anomaly and we once dragged Damon to a chiropractor to try to sort it out. We exhort our son to stand up straight and pull his shoulders back. Now it strikes us a protruding liver could explain his posture more than any deficiency of spine or will. We feel a stab of guilt that we held Damon even partially responsible. Later, when we pursue the oversized liver with the chief of surgery, he says it is completely normal for children with Damon’s heart condition and he sees it frequently. We wonder why no one ever told us this before.
We schedule the surgery promptly but try to minimize the disruption to Damon’s life. He hates to miss school and has started rehearsal for Charlie and the Chocolate Factory.
When the morning of his hernia operation dawns, we tell ourselves it is a routine procedure, but with Damon’s medical history, nothing is routine. We envy all our friends who freak out over their kids’ colds.
On the ride in, Damon and I discuss a new play I’m supporting with Alan Alda playing the Nobel Prize–winning physicist Richard Feynman. I work for a well-established philanthropic foundation and one of my roles is to help develop plays, films, and television shows with science and technology themes.
We arrive at the hospital, sign in, and go to the fourth-floor pediatrics ward.
The secretary makes several copies of our insurance and asks us to fill out the same form about Damon’s medical history, several pages long, for the umpteenth time.
A nurse takes Damon’s blood pressure and temperature, weighs and measures him, and exchanges his familiar jeans and T-shirt for a hospital gown that ties loosely at the back. A hearty, decent sort, she means well but her idea of small talk is to ask him three times if he’s nervous. “A little,” Damon says to mollify her.
Another nurse comes in to start an IV. Damon has pale, spidery veins and sticking him requires precision. After an initial adjustment, she gets the line in.
Then a young doctor, bright-eyed with self-importance, saunters in and beams at Damon. “Hi, I’m the resident. Have you ever had any serious medical conditions?”
At first, we think he’s kidding, but he’s not. Damon turns away, too polite to sneer, and Shealagh groans in disbelief. I fire off a rapid, testy medical summary. “Next time do your homework and read the chart!” I say. He slinks out of the room, red-faced.
We wait with other tense parents and their sick children until they send us to the preoperative holding area. A fountain of gurgling water, pink-lit, is meant to soothe our nerves. A tall doctor with a Hungarian accent walks in and mumbles that they want to put Damon under general anesthesia because a local injection could lower his blood pressure, and his pressure is already low. The anesthesiologist tries to rush our consent but we won’t give it until he answers each of our questions and reviews all the options. General anesthesia carries a known risk of mortality, compounded, like everything else, in Damon’s case, and we have learned not to take anything for granted.
The surgeon arrives in his scrubs and quickly runs through the procedure. An affable, highly competent man, he does not anticipate problems and wants to get started. We each ask questions, including Damon—“When can I go back to my karate class?”—before signaling that we are ready. The nurse releases the brakes on the gurney and the anesthesiologist, turning to follow the rolling bed, suggests we say our good-byes now.
“No,” I tell him. “We always go into the operating room with our son. It’s part of our routine.” Damon watches us from the gurney, upset—we touch his arm to calm him—before the surgeon tells the anesthesiologist it’s okay for us to accompany our son.
We quickly throw yellow moon suits over our clothes and don protective face masks before plodding down the corridor beside Damon’s gurney like a team of sterilized astronauts. We turn and push through sealed doors into the operating theater.
It’s a large, cool, brilliantly lit room with state-of-the-art medical equipment surrounded by a tinted observation booth. A lone bed rises in the center, with a giant stainless steel arm arcing above it. A modern setting for sacrifice and, hopefully, healing—a place for testing one’s faith.
I tell myself it’s not as dire this time—this is standard procedure for a hernia—but still, I can’t believe we’re going through this ordeal again.
I keep up a running banter with Damon as they wheel him into position and Shealagh chimes in with reassuring comments. Damon remains stoic and game throughout but he likes having us nearby. I want Mom and Dad to be the last thing he sees when he closes his eyes and the first when he opens them again.
Damon climbs onto the narrow steel bed and they immediately place a mask over his head and tell him to inhale. A team of nurses, doctors, and assistants attaches lines and sensors to Damon. They prick his finger with a needle and he says “ouch” through the mask, but then the nitrous oxide reaches his central nervous system and he begins to laugh. We watch his lips pull back over his large front teeth all the way to the gums as he giggles uncontrollably. His big face with the bright red hair and pale skin fills with induced mirth. Then he is out cold. An array of monitors reads live data input from his unconscious body. We kiss him one last time and leave the operating theater.
We sit in a common room with gray lockers and a coffeepot. We make our calls, try to read the paper, stare into space.
The wait that lasts an eternity.
At some point, the surgeon emerges and walks toward us. We scour his face and body language for clues to our son’s fate. He reaches us and immediately says, “Everything’s okay.” So time begins again, and now we can listen to what he says.
It was a surprisingly big hernia that demanded more surgery than anticipated—“The hernia of the week,” the surgeon confides with a trace of professional pride—but all is well now. We should see improvement within seventy-two hours. Damon will be sore for a few days but the rupture is repaired and the problem solved.
We thank the surgeon profusely, then go to the recovery room to see Damon.
“Hi, sweetie.” Shealagh hugs Damon, who’s groggy from the anesthesia.
“You did great, D-man.” I kiss his brow and congratulate him. He smiles weakly.
We sit by the bedside, each of us holding one of his pale, slender hands. We feed him ice chips until he’s permitted to drink.
The next morning we leave the hospital and take Damon home.
Everything seems to have gone well. Damon had a hernia, which any healthy person can get, and now it’s fixed. There is no apparent connection to his underlying heart disease, nor any long-term ramification. He’ll be back at school within a week and right as rain. We had a spot of bad luck but it’s behind us now.
We try to reassure ourselves with this official prognosis but sense in our depths that something has changed, some seismic but as yet undetectable shift.
Something has changed, but we do not understand it yet.
A Family Memoir
A Family Memoir
Damon Weber is a brilliant kid—a skilled actor and a natural leader at school. Born with a congenital heart defect that required surgery when he was a baby, Damon’s spirit and independence have always been a source of pride to his parents, who vigilantly look for any signs of danger.
Unbowed by frequent medical checkups, Damon proves to be a talent on stage, appears in David Milch’s HBO series Deadwood, and maintains an active social life, whenever he has the energy. But running through Damon’s coming-of-age in the shadow of affliction is another story: his father Doron’s relentless search for answers in a race against time.
Immortal Bird is a stirring, gorgeously written memoir of a father’s fight to save his son’s life.
Immortal Bird by Doron Weber
Read an Excerpt
Reading Group Guide
Damon Weber was born with a malformed heart. By the time he was four years old, he’d had two open heart surgeries. The second, an operation known as the Fontan procedure, seemed to solve his circulatory problems. But eight years later, teenaged Damon begins to experience new and puzzling issues. He’s diagnosed with a protein imbalance called PLE, a condition that occurs in approximately 10 percent of children who have had the Fontan operation. All of the Webers’ attempts to manage the condition come to nothing, and they make the weighty decision to put Damon up for a heart transplant—an operation that should both cure his protein imbalance, and eliminate all of his cardiovascular health problems. But in a wrenching reversal of expectations, an infection caused by the transplant costs Damon his life and the Webers their son.
Immortal Bird, written by Damon’s father Doron, takes the reader through Damon’s life, revealing a strong and talented boy who, despite enormous odds, lived a lif see more