< previous part | next part >
The risks we take can tell us who we are
A nurse appears in the doorway. It’s time to go, she says. Sam Lightner takes a deep breath and nods feebly. He lifts himself, his hands trembling slightly on the arms of the chair, and walks across the small pre-op waiting room to give his parents a hug.
“We love you, sweetie,” says his mother. She pulls him close and kisses him softly on his left cheek, right on the mass that the waiting team of doctors will target. Sam looks at his mother through his right eye—the only truly normal feature on his face. He blinks it once. A wink.
“Have a nice sleep,” says his father as he gives his son a hearty pat on his shoulder.
David Lightner wraps his arms around his son as a nurse waits to walk Sam down the hallway toward the operating room.
The nurse touches the 14-year-old on the shoulder and leads him down the hallway. His gown hangs loosely on his 83 pounds, exposing his spindly legs. In another room, nurses help him onto an operating table. He lies down, and a nurse inserts an IV line into an arm. Then she injects drugs to make him drowsy. When his eyes flutter, he’s wheeled into Operating Room 16.
It is Thursday, July 6, 2000, just three months since Sam and his parents visited Boston to find out if this elite surgical team, the only one in the world with any chance of correcting his deformity, would take his case.
The room is about the size of a two-car garage with a 15-foot ceiling. It’s chilled to 64 degrees, which cuts down on the growth of germs and keeps the doctors comfortable as they work. Two massive operating lights, each with four bulbs, hang over the table. Everything but the white walls—the drapes that cover the patient and the operating table, the surgical scrubs and the shoe covers—is light blue.
“You’re just falling asleep now, Sam,” says a nurse as she strokes his hair. “Just falling asleep, Sam.”
His eyes close.
An anesthesiologist takes her place behind the bank of machines that will control the boy’s body during the operation. She switches a knob, and the sound of a pump fills the room. It is a steady beat—one swoosh every two seconds—and fills Sam’s lungs with air, breathing for the unconscious boy.
The circulating nurse, responsible for everything that comes in and out of the room, sorts through a cluttered desk to find Sam’s medical history. In these final quiet moments, she sits on a corner stool and flips through a folder the size of a small telephone book, reading about this small boy’s long journey. The nurse puts the file down and walks to the operating table. An intravenous line pumps Sam’s body full of saline, a way of making up blood volume in the face of the bleeding that is sure to follow.
A member of the medical team comforts Sam as he lies on a gurney, drifting off into anesthetic sleep in the moments before the surgery begins.
The swinging door to the scrub room opens with a bang, and Dr. Jennifer Marler enters Operating Room 16. Her arms drip with water. The circulating nurse hands her a sterilized towel.
Marler, a 38-year-old mother of three, lobbied to bring Sam here to Boston, to Children’s Hospital, the nation’s largest pediatric medical center. In late 1999, Marler presented and pressed Sam’s case before the hospital’s Vascular Anomalies Team. The team members balked—the surgery was tremendously risky. But eventually Marler won them over.
The goal was to cut away a mass on the left side of the boy’s face. If all goes well, that will set the stage for a later operation on the misshapen bones in his face. But first, surgeons must cut their way down to the facial bone.
A nurse helps Marler into her surgical gown and a set of gloves. She moves to the operating table. She runs her hands across Sam’s face, gently, almost caressing the boy, not as a doctor but as a mother.
“We’ll take good care of you, Sam.”
She leans over his body and begins suturing his eyelids. She does not want his eyes to open during surgery—the swirl of scalpels, needles and surgical gowns around his face could scratch a cornea.
Word about Sam and the impending operation has filtered through the hospital, Harvard Medical School’s primary pediatric teaching hospital. The staff is curious about something that pushes the boundaries of medical practice.
A nurse from Operating Room 17 pops in. “Wow,” she says. “How old is he?”
“Fourteen,” says Marler.
“Where’s he from?”
“Does he go to school?”
“He does,” says Marler. “He’s very personable."”
As Marler begins preparing Sam’s face, the scrub doors swing open, and Dr. John Mulliken, the surgeon who will lead the team, strides silently into the room. He stops to study Sam’s three-dimensional CAT scans, which hang from a lighted viewing board. He has never encountered so complex a case.
He holds out his hands. A nurse helps him into his gown and gloves. He walks to the operating table and looks at his patient. “Good preparation,” he tells Marler. “Good preparation.”
Surgery is Mulliken’s life. He works weekends. He hasn’t had a vacation in years. He’s never married and has no children. He dotes on his dog, Girlie, and his cat, Felicia. A cabinet in the operating room carries 19 photographs of the two pets.
During surgery Mulliken can be gruff, and some of the rotating nurses have complained to the administration that he barked at them when they didn’t move quickly enough or when they handed him instruments he didn’t consider clean. But for this operation, Mulliken has assembled a team of people who have worked with him for years. They all have thick skins.
He reaches down and grabs Sam’s head with both hands. “His head’s just so big,” he mutters. “It just rolls around.”
He turns to a nurse. “I can’t have it rolling,” he says. “Stop it.”
The nurse scurries through the room, searching in cabinets until she finds something that looks like a doughnut the size of a dinner plate. Sam’s head fits in the hole. Mulliken tries moving the head. It doesn’t budge. “Good,” he says.
The swinging doors open again. Dr. Gary Rogers joins Mulliken at the head of the operating table. The blue surgical scrubs cover their bodies. The caps fit snugly over their heads. Masks hide their mouths and noses. Each wears special black glasses outfitted with surgical microscopes that will allow them to peer deep into the boy lying in front of them.
Mulliken ignores his teammates. He walks around Sam’s head, studying it from all angles. Knowing this would be a difficult operation, he had scheduled a warm-up earlier in the morning: repairing a cleft palate in an infant. His hands are limber and steady.
The surgical nurse makes the final adjustments to tool-lined trays beside her. The circulating room nurse awaits her first order. Mulliken, Rogers and Marler adjust the microscopes over their eyes. Mulliken points to a spot near Sam’s left ear. That, he says, is where he wants to make the first cut.
Marler and Rogers bend over Sam. “Yes,” they say in unison.
Mulliken takes a deep breath. “OK,” he says.
He holds out his right hand and asks for a scalpel. He grasps it firmly. “This is going to be a bear,” he says. “Let’s do it.”
The scalpel parts the skin, and the flesh gives way to the blade.
Then the blood begins to flow.
* * *
Bathed in the intense glow of the operating-room lights, Dr. John Mulliken (left) and Dr. Jennifer Marler (right) struggle to find the facial nerves hidden in the mass of tissue they are trying to remove from Sam’s face.
The first drop of blood lands on the floor, and Mulliken calls for suctioning. Marler uses a tool attached to a clear plastic tube. In seconds, it resembles a piece of red licorice that snakes across Sam’s body, down the floor and to a holding tank where the boy’s blood collects.
Rogers holds back the skin, allowing Mulliken to proceed. After 15 minutes, the lead surgeon has opened up a 3-inch incision. The bleeding hasn’t slowed.
He calls for a syringe. Marler injects more drugs designed to speed clotting into Sam’s neck, hoping they will slow the bleeding.
The team waits. The blood flows freely.
The team confers. Mulliken could close up now, suture the incision and end the operation. When the Lightner family traveled to Boston three months earlier to meet Mulliken and Marler, Mulliken made it clear that this surgery was risky. The only other time Mulliken tackled a case this serious, he made an incision, encountered massive bleeding and closed.
If he continues, he and his team will have to work furiously, trying to stay one step ahead of massive bleeding while they peel back the skin. And even if they expose the mass, they might never find the nerves that branch out into the tissue. If they cut a nerve, they could paralyze the left side of Sam’s face.
The tissue mass is a jumble of skin, tissue, nerves, lymphatic vessels, veins and arteries. A Nerf ball filled with blood and fluid. Mulliken has no road map. If he plunges ahead, it will be like replumbing a house with the water turned on.
Operating Room 16 awaits his decision.
He leans over Sam’s body. “Let’s do it,” he finally says.
The circulating nurse jumps from her chair and hustles to a phone. She punches in the four-digit number to the hospital’s blood bank. Six units of blood are now in a cooler in Operating Room 16. The nurse tells the bank to set aside an additional six. Even if all goes well, Sam will bleed so much during the operation that she will have to replace his entire blood supply.
She glances to a plastic bag holding a unit of blood that drips from an IV line into Sam’s right arm. The bag is half-empty.
Mulliken lengthens the incision. The bag drains.
Mulliken, Marler and Rogers operate quickly, the suctioning line thick with the boy’s blood. Each time the scalpel moves, it slices a blood vessel. They go through 50 surgical towels and countless sponges, soaking up blood so they can see where they are.
Mulliken calls for the Bovie, a machine that electrically cauterizes blood vessels. In a normal body, the machine stops bleeding, and the surgery is almost bloodless. Marler leans over Sam’s body and grasps the Bovie, a device that looks like a dental drill, in her right hand.
There is the sound of sizzling, as if grease has been dropped onto a grill. A plume of smoke rises from Sam’s face. But the bleeding continues.
A nurse walks behind the surgical team and hangs a third bag of blood on the IV line. “Jesus Christ,” Mulliken mutters.
The team begins to pull back the skin. They can see the edge of the mass. “Easy,” Mulliken tells Marler. “Easy.”
The side of the boy’s face oozes blood. Drops splatter the floor. A red stain spreads through the surgical drape as if someone had spilled a glass of wine on a white tablecloth. Nurses call for another 10 towels. Within minutes, they are soaked through, and the nurses dump them into a bucket.
The insides of Marler’s shoes are soaked with Sam’s blood. She asks for a new pair of wool socks.
Mulliken sees only one option: They’re going to have to stitch each blood vessel closed. He calls for needles.
While Marler continues cutting, Rogers uses the Bovie, and Mulliken starts stitching. The surgical nurse goes through packet after packet of stitches and tells the circulating room nurse she needs more.
Mulliken’s fingers tire, and Marler takes over. Then Rogers. The bleeding slows to a trickle. The team has tied more than 200 stitches.
Slowly, they pull Sam’s skin back and cover it with a towel to keep it moist.
The mass is exposed.
Mulliken looks to a board in the far corner of Operating Room 16. Sam has gone through three units of blood. And the team hasn’t even reached the heart of the operation. He steps away from the table. He tells Marler and Rogers to clean up the area surrounding the mass. He’s going to take a break.
The phone rings, and the circulating nurse answers it. “We’re No. 1 again,” she calls out to the room.
For the past 10 years, U.S. News and World Report magazine has ranked Children’s Hospital best in the country. It’s won the award again.
“Your friend says you had a bet with him,” she tells Mulliken. “He says you owe him a dinner. He wants lobster.”
Mulliken strolls toward the door. “Yeah, yeah, yeah,” he says, disappearing through the swinging doors.
* * *
Surgical coverings hide Sam’s body and most of his face, leaving only the tissue mass exposed under the glare of the surgical lights. It looks like a piece of raw prime rib.
Even to someone as experienced as Mulliken, the mass is a mystery. X-rays don’t show soft tissue. So there’s no way of knowing how invasive the mass is or what it’s wrapped around. A single nerve leaves the brain and divides into five branches that spread out to control the side of the face. But the mass could rest on top of nerves, or it could spread under them. Or the nerves could snake right through it.
The boy has few enough pathways to connect him with the rest of the world. If Mulliken guesses wrong and cuts a nerve, Sam loses an important part of what he has left—the ability to blink his eye, to crinkle his forehead or to smile.
News of what’s going on in Operating Room 16 has spread throughout the third floor. Residents and other doctors wander in to look at the CAT scans hanging on the wall. They stand back and stare at the mass, bloody and glistening in the high-powered lights.
“Unbelievable,” says a visiting doctor.
He turns to the circulating nurse. “How old is he?”
“Fourteen,” she says. “And he’s really nice.”
The doctor looks at scans, which make Sam look like a cyborg in a science-fiction movie.
“Isn’t that the saddest thing you’ve ever seen?” he asks. “It’s heartbreaking. This kid must have a tough life. That’s no way to live.”
On the way out of the room, he passes Mulliken, who re-enters Operating Room 16 with a shout. “Children’s Hospital is tops,” he says. “We’re No. 1.” Even through his surgical mask it’s clear he is frowning.
“I was hoping we would be second or third,” he announces. “That way we won’t be so damn complacent around here.”
He checks with Marler. The blood has slowed to a trickle.
His job now will be to hunt for the nerve branches and to cut away the mass of tissue. The team will use an electric probe. If they touch a nerve, a portion of Sam’s face will twitch.
Out of habit the circulating nurse pulls down a thick anatomy book. She turns to the page that details the facial nerves and leaves it open on a table so the team can refer to it. But it will do them no good. In this section of Sam’s body, nothing is where it should be.
The team works under microscopes. Looking for the nerve will be like hunting for a white rope encased in white concrete.
Test. Cut. Test. Cut.
They begin removing bits of the mass. The bleeding begins again.
An hour passes, and Mulliken goes to the scrub room. He takes off his gown and gloves, and returns to flop in a chair away from the operating table. The pressure is intense, physically and mentally, and the team plans on working shifts—when one surgeon tires another will take the scalpel. Mulliken leans back and rests his head on a cabinet. He closes his eyes. After 15 minutes, he stirs.
“How’s it going,” he calls to Marler.
“The nerve must be surrounded by scars from his previous surgery,” she says.
“Don’t relax,” he tells her. He knows the biggest danger is in getting sloppy and cutting something that appears to be tissue but may in fact be the edge of a hidden nerve.
“Jennifer, are you looking?”
“There’s nothing,” she tells him.
He leaves the room to scrub and to check on his cleft-palate patient. He returns 30 minutes later. About four and a half hours have passed since the surgery began.
“How you guys doing?” he yells when he enters Operating Room 16. The silence is ominous. After getting in his gown and gloves, he moves to Marler’s side. He looks over her shoulder.
“Is this the same case?” he jokes.
“Hey,” she admonishes him with a chuckle.
“You found it yet?”
“We think we found the region.”
“I know the region,” he says. “I want the nerve. Where is it?”
He takes over, and Marler strips off her gown. She is going to take a shower, get something to eat and call her family and tell them she won’t be home until late that night.
Test. Cut. Test. Cut.
A nurse walks behind the surgical team and hooks up a fourth unit of blood to Sam’s IV line. Marler returns 20 minutes after leaving and finds Mulliken frustrated and worried. They haven’t found any branches of the main nerve, and the operation is entering its fifth hour.
And the kid is bleeding. He thinks of Dr. Alan Seyfer, the Portland surgeon who nearly attempted a similar operation on Sam when the boy was 12, and then decided the risks were simply too great.
“Seyfer was right,” Mulliken grumbles. “Seyfer was right.”
He mops up more blood and turns to see that the fourth unit is nearly gone. “This was a mistake to take this case,” he says. “I don’t think we can help this boy.”
Mulliken tells his team there are two choices: Increase the risk of destroying part of the nerve by cutting even faster. Or close up.
“I’ve been here before,” he says. “I think we should close up.”
Marler turns to him. “Let’s keep going.”
Mulliken moves to the side. “Jennifer,” he snaps, “you take over. You wanted to bring him here; you look for the nerve.”
Marler takes the probe, and 90 more minutes pass. The team has gone through more than 200 sponges and towels soaking up Sam’s blood. The holding tank where the suction line empties sloshes red.
“I think I got it,” Marler shouts.
“This is in a portion of scar tissue like you have never seen,” she tells Mulliken, who pats her on the back.
She applies the electric probe again, and a muscle twitches. “You got it?” Mulliken asks.
“I got it,” says Marler. “It’s all encapsulated. I can’t distinguish the nerve from the scar tissue. And it’s deeper than it should be. I’m afraid to dissect any farther.”
Mulliken trades places with her. He peers into the side of Sam’s face and holds out his right hand. A nurse hands him a scalpel. He leans over, inches from the mass. He touches it with the tip of his scalpel.
“Well, I can’t budge it from the scar tissue,” he says. “It is literally entangled in it.”
Marler uses the probe. Sam’s forehead moves.
“Every time I dissect, I’m worried,” Marler says. She and Mulliken turn away from Sam and look intently at each other.
“It’s bad,” he says. He peers back into the mass, which is oozing blood. He stands up.
“We’ve come this far,” he says. “We’ve got to get it out."”
Rogers assists with suctioning and controlling the bleeding so Mulliken can see where the nerve might lie.
“Let’s stimulate around what we think is the edge,” Mulliken says.
Test. Nothing. Test. Nothing. Test. Reaction.
Mulliken cuts. “It should be under here,” he says. “Jesus.”
He sighs. “I would go right here,” he says.
Mulliken, Marler and Rogers, instruments in each hand, all focus on a spot in the mass the size of a quarter. “I think I found a branch above,” Mulliken says.
The fourth bag of blood is nearly gone.
Mulliken turns to Marler and asks for the probe. He tries to work his way back up the tiny nerve he’s located, searching for the main branch.
He applies the probe again, but the room is silent.
“Come on, people,” he snaps. “Talk to me.”
“Yes,” says Marler. “His forehead moved.”
Mulliken tries again. They are more than six hours into the operation.
“Bingo,” says Mulliken.
* * *
The surgery has dragged on for hours with little progress, and Mulliken, taking a breather next to an array of Sam’s CAT scans, is feeling the frustration and exhaustion.
Darkness has fallen and more the 10 hours of surgery have already passed as David and Debbie Lightner doze in the empty waiting room.
The team moves out from the nerve they’ve located, hunting for other branches. “We have to see it, to get around it,” Mulliken says. “The nerve is going right through this mass.”
Marler turns to him. “Just imagine what it’s going to be like getting there,” she says. “What are we going to do?” Mulliken says nothing.
“Could we get the malformation off and then go back and do a nerve graft?” she asks.
“No,” he says. “We can’t even find all the nerves. Jesus Christ,” he says. “We’ve been here nearly seven hours, and we can’t even get to the nerves.”
Rogers strips off his gown and leaves the room for a break. Mulliken and Marler bend over Sam. Suddenly, blood spurts onto Marler’s blue gown. The scalpel has nicked a branch of the carotid artery.
“Bleeder,” Mulliken yells, calling for clamps and sutures to stanch the spurting blood. The surgical nurse doesn’t move fast enough for him. “Come on,” he shouts. “Come on.”
He works frantically. “We got a real bleeder here,” Mulliken yells. “Oh, Jesus.”
The fourth bag of blood is gone. A nurse scurries to hang a fifth, which drains as though it has a hole in it. A sixth bag begins to empty just as fast.
The blood loss could send Sam Lightner into cardiac arrest. He is close to death.
Mulliken leans into Sam’s body, violently shifting the head, stitching and then reaching out to grab another instrument and stitching again. The bleeding slows.
Rogers returns. “What’s up?” he asks.
“We get into the carotid branch of the vessel, and you walk off?” Mulliken says.
Rogers, mystified, looks at Marler.
“We’re fine,” she says. “We’re fine.”
* * *
The hallway outside Operating Room 16 empties. It’s 10:30 p.m., and janitors are already cleaning the surrounding rooms, readying them for the next day’s cases. In all of Children’s Hospital, only one surgery continues—the one in Operating Room 16.
The members of the team have to get reoriented. They suction off the blood and begin testing, looking for nerves again. Mulliken probes. “Let’s get going here,” he says. “We’re losing time.”
He asks the surgical nurse for a tool covered with green dye and maps the nerve branches right on the exposed tissue. The team can cut anything in between the green lines. When they reach the edge, they must test, getting as close to the nerve as possible. They think they’ve found all the nerves, but they won’t be sure until Sam regains consciousness and actually tries to move.
They begin cutting.
Small pieces, the size of a toenail clipping. Then much larger, some of them size of a marble. “Say,” Mulliken says. “You know that we’re the No. 1 hospital in the country?” He chuckles.
Nurses and doctors laugh.
“You know what we are doing now?” he asks. “We’re rolling, rolling, rolling.” He sings lines from the theme to the old television show “Rawhide.” And hacks away at the mass.
“You ever see anything like this?” one nurse asks another.
Marler dissects the area under Sam’s chin. “That should go,” she says as she pulls out a large chunk. “Let’s go the extra mile.”
Mulliken pulls the flap of skin back over Sam’s face. “He looks a lot better,” he says.
He folds the flap back down. “Folks,” he says, “We’re down to the bone.”
* * *
Sam’s blood has completely lost the ability to clot, and the nurse rushes to replenish it with a seventh bag. “He’s bleeding from every little hole,” Mulliken says. “Jesus Christ, things are starting to blow up. We’re getting out of here.”
He stands to speak to the room. “Close,” he says.
Rogers and Marler stitch Sam’s skin flap back to the side of his face. “That chin of his is going to look awesome,” Marler says. “Not a bad way to start high school,” says Mulliken. He steps away from the table, taking off his gloves, gown and mask. He sits at a table and fills out forms. He glances at a wall clock to note the time.
It is midnight. The surgery has lasted nearly 13 hours.
He files the paperwork and walks out the door and down the empty hallways. Through another set of doors and then into the bowels of the hospital. In the waiting room, he finds Sam’s parents asleep on separate sofas.
He clears his throat. They stir.
David and Debbie Lightner in the recovery area of the Intensive Care Unit, quietly examine the results of the surgery that has just ended. The post-surgical swelling is intense, and it’s hard to see how much progress the surgeons have made.
“Everything is fine,” he tells the Lightners. “All is well.”
“How difficult was it?” David asks.
Mulliken sits on a chair and runs his hands across his face.
“This was very difficult,” Mulliken says. “The most difficult surgery I’ve ever performed. At times we were very discouraged, and it wasn’t easy. But no one ever wanted to give up.”
He yawns. “All is well,” he says, rubbing the back of his neck. “The next step will be fixing the mandible bone, probably next summer. That won’t be a problem.”
The Lightners turn to each other. They hold hands.
“You know, doctor, when I talk with you, I realize how Sam’s face really looked,” David says, his voice breaking. “To me, to us, he’s always been just Sam. I guess we got used to it. To us, he’s just a kid with a big old head.”
“The family doesn’t see it,” he says. “It’s the rest of the world, all of us, the strangers who can’t see beyond the face. That’s the sad part.”
The Lightners stand. They move toward Mulliken but hesitate, not sure of what to do or what to say.
“Thank you,” says Debbie Lightner. She runs her hand across her eyes.
Mulliken smiles. “You’re welcome,” he says.
He turns and disappears through the door.
< previous part | next part >