:: By Amy M. Braverman
:: Photography by Dan Dry
A morning at the Comer Children’s Hospital ICU turns critical for a formerly healthy teenager.
It’s a rainy Tuesday morning in April, but the gloom doesn’t penetrate the Comer Children’s Hospital lobby, a two-story, glass-walled atrium. Patients and visitors enter the $135 million hospital, opened February 19, from 57th Street—a safer, calmer location than near the main Hospitals’ ambulance- and commotion-heavy Maryland Avenue entrances. The seating area contains adult-sized blue and green cushions, kid-sized green chairs around a low white table, an aquarium, and an interactive wall fountain—when a child presses a square button, water flows from one of 16 bronze leaves. The atmosphere is serene, if not cheery.
Adela Cortez holds her son, Steven, who may need a heart transplant.
The brightness continues past the front desk and down the hall, where the far wall glows with nine colored, LED-lit squares announcing the hospital’s biggest donors. Opposite the elevators a four-paneled artwork, Seasons of Love, shows children frolicking in summer, fall, winter, and spring. Bulbs blink in the summer and spring panels; in the autumn and winter ones leaves and snowflakes turn. Even the elevators are colorful. As they ascend, LED ceiling lights morph red, orange, yellow, green, blue, purple, and back to red. The art and colors have a purpose, says physician-in-chief Steven A. N. Goldstein, Department of Pediatrics chair. Comer, he says, “brings together the cutting edge of the best technologies for caring for children and their families and at the same time is a warm, welcoming environment.”
On the fourth floor, past the mosaic and poem “My Shoes” (“My shoes are a pair of twins,” it begins), the scene takes on the more serious aura of a hospital. This is the pediatric intensive-care unit, the peds ICU. Though faux-wood floors shine, a large round column is painted bright red, and the ceiling has curved yellow and green accents, medicinal white dominates: the walls, the residents’ and doctors’ coats (hospital gowns and nurses’ scrub tops, however, are a patterned blue). Most of the 18 patients—aged 1 through 18, suffering seizures, sepsis, pneumonia, cardiomyopathy, respiratory failure, trauma, apnea, pancreatitis—haven’t yet stirred, still in one of 20 beds on this level. (Down a floor are ten more beds, for cardiac and ICU-surgery patients.) Most rooms have curtains drawn and lights low. At 9 a.m. floor activity is just beginning: the only patient in the hall, a small boy perhaps two years old, holds a nurse’s hand, shuffling along the hallway determinedly in a miniature hospital gown and pale-yellow footies. “Isn’t he cute?” the nurse coos.
Soon the rounds team assembles. A few of the half-dozen residents scarf down power bars and cafeteria hash browns. Joining them are a pediatric critical-care fellow, a pharmacist, and two physicians—Michael Schreiber, a neonatologist and vice chair of academic affairs in the pediatrics department and the College, and Madelyn Kahana, director of the peds ICU and residency program and section chief of pediatric critical-care medicine. Schreiber, the week’s attending physician, leads the rounds. Kahana listens in as director of the floor. Board certified in three fields—pediatrics, anesthesiology, and critical-care medicine—she’s been practicing medicine for a quarter century and is a bit of a medical media star. In 2000 and 2004 she and Chicago plastic surgeon McKay McKinnon removed monstrous tumors, one 200 pounds and one 160 pounds, from two women, feats chronicled on the Discovery Health Channel.
Child Life specialist Amy Sheerman plays with Sahai Lewis, age 3, in the operating waiting room before Lewis has her tonsils removed.
The rounds team stops at each occupied room’s doorway, and a resident gives a status report: WBCs, platelets, meds. From the numbers, abbreviations, and acronyms Schreiber extrapolates a vital story. “Extabate her,” he says. Or, “His transplant status needs to be reevaluated.”
The potential heart-transplant case is 16-month-old Steven Cortez, who has an undersized left ventricle and obstructed aorta. At Comer for four weeks, Kahana says, he’s now strong enough to tolerate the drugs he’d need for the surgery. She enters the dimmed room to say hello. His mother, Adela, only slightly disheveled though she’s been sleeping on the room’s pull-out couch, sits in a red chair, cradling Steven in her lap and holding his right hand. His eyes are closed, round cheeks relaxed, a tracheotomy connecting his throat to several tubes and wires near the bed. When Adela speaks English Kahana seems surprised. “You’ve been practicing,” she exclaims. Adela shrugs and grins shyly. Kahana, whose wavy gray hair frames a soft face, rosy cheeks, and pink-lipsticked smile, declares, “I will now speak English in this room instead of Spanish.”
As she rejoins the rounds, a deep cough comes from down the hall. It belongs to a girl with a heavily bandaged head, scrunched up in bed. Her mother sits at a laptop computer, her father on the couch scoops eggs from a plate. Fifteen-year-old Samantha Turich has epilepsy. “We were grand-mal-seizure free for three years,” says Kathy, her mom, but now the seizures have come back. Samantha recently had eight in one day. Surgeons have planted electrodes on her brain to monitor its activity and a stimulator on her vagal nerve to try halting them. The stimulator tickles her throat, causing the cough. For the week they’ve been in the ICU, Kathy’s been sleeping here, working from the room. Samantha doesn’t speak but shakes her head to answer yes or no. A finger painting and a crayon-heart drawing, which her eight-year-old sister made in the first-floor playroom, hang on the wall.
The family fits comfortably in the 308-square-foot room, an improvement over the 177-square-foot rooms in the old Wyler Children’s Hospital inside Mitchell. At Comer—named for Lands’ End founder Gary Comer and his wife Frances, who donated $21 million for the facility—comfort is a priority. Most of the 155 beds, except in some ICU cases, are in private rooms with large windows, pull-out couches, and flat-screen TVs, which offer on-demand movies, music, limited Web access, and e-mail. Patients order food from a menu, and it’s delivered room-service style. Instead of a loud overhead paging system, Comer has a wireless system that pages a nurse when a patient presses a call button. In the playroom children can dress up, roll a ball, or paint in an art-therapy class. Teens have a private section with a jukebox, pinball machine, books, a TV, video games. The adjacent learning center contains books and computers for parents to research their children’s conditions. In the second-floor family care center, parents can stay in one of eight sleeping rooms with private bathrooms and laundry facilities. The fourth floor will have a healing garden, and the sixth floor has a family kitchen.
“To give the very best care to children,” says Goldstein, “you need a dedicated facility. Caring for children is not the same as caring for adults who happen to be little. There are different needs, a different dynamic, from the emotional to the technical. To do it at the best level it was necessary to have a freestanding hospital. This institution made a commitment to be in the top tier internationally. That’s where we’re going with the Comer Hospital.” Excellence, he says, is also the goal for two related projects: a pediatric emergency room, being built with another $21 million from the Comers and scheduled to open in August 2006, and the Institute of Molecular Pediatric Sciences, which breaks ground in June and which Goldstein, a leading ion-channel researcher, will direct.
Cousin Sean, age 12, cheers up five-year-old Jacobi.
Back in the peds ICU hallway Schreiber views a patient’s X-rays at a nurse charting station, an alcove between every two rooms where caretakers access digital images on computers, view patient charts, and grab masks, gowns, and gloves from supply drawers while remaining near the child. “If he did go on ECMO,” Schreiber says, “I’d rather have him wet than dry.” Eck-mo means little to a nonphysician, but it causes a jump in the floor’s activity level. Residents and nurses come and go. Kahana leaves the group to page someone. The patient triggering the commotion, a seemingly healthy high-school senior planning to enter college this fall, had sudden lung failure a few days ago—perhaps from pneumonia but the cause isn’t clear. What is clear is that the high-frequency oscillatory ventilator that’s been pumping the teen’s body, paralyzed and sedated from medication, since Sunday, after a conventional ventilator failed to keep his blood well-oxygenated, also isn’t helping. So the doctors have decided to put him on extracorporeal membrane oxygenation, ECMO, a machine that mimics the heart and lungs, letting the organs rest for two or three weeks. The blood flows out through a tube and into the machine, which adds oxygen, removes carbon dioxide, warms the blood, and returns it to the body. As the patient improves, the ECMO dial gradually gets turned down and the organs resume their jobs.
It’s a rare procedure, a last-ditch effort—and “the messiest, bloodiest thing we do,” Kahana says. Performing surgery is fairly unusual in the ICU, especially a procedure to insert a “hose the size of a man’s thumb,” as pediatric fellow Rachel Wolfson, MD’00, puts it, into a patient’s neck while significantly thinning the blood so it doesn’t clot in the machine. Once hooked up, Kahana says, 25 to 50 percent of the patient’s blood is outside his body, flowing through the circuit. The plan is for neurology to see the patient, get an electroencephalogram to test his brain’s electrical activity, then transfer him to a new bed and the ECMO machine at 11:30 a.m.
An hour to go, Kahana checks in on Jacobi Henry, a five-year-old whose arms and legs are thin as twigs. Suffering spinal muscular atrophy, Jacobi, sitting up in bed, wears a hard-plastic back brace, printed to look like overalls, to keep him straight and to prevent scoliosis. “He slumps over,” says his mother, Melony. Because his chest is barrel-shaped and sticks out a bit, the brace is hollowed out near his heart to prevent pressure. Hospitalized 31 days with pneumonia, Jacobi feels better now and wants to visit the playroom tomorrow. To Melony that means they’ll go home soon. This morning, though, he’s in a sour mood. Kahana bends over him closely and asks, “What’s the matter?” He scowls and shakes his head. “Is it the hole?” she tries. Jacobi nods. “Is it too small?” Another nod. “Is it hurting?” A shake no. “Well, we can fix that,” Kahana says.
“He wouldn’t talk to her for 30 days,” Melony notes. “Then he says, ‘My doctor’s name is Dr. Kahana.’” Eyeing his cousin Sean, age 12, playing a wrestling video game on a TV atop a wheeled cart, Jacobi offers, “My cousin took me outside.” Though everyone in the room knows Jacobi hasn’t been outside in a month, they humor him, glad he’s become talkative. Sean drops the game controller and comes to Jacobi’s side, teasing and playing with him. His cousin’s attention makes all the difference. Jacobi’s scowl transforms into a grin, and he even says “cheese” for a photographer.
Nurses and residents await Schreiber’s count to move the teenage ECMO patient.
Forty-five minutes before the scheduled ECMO surgery, Schreiber, Kahana, and the residents head downstairs to the ICU surgical section, an open ward. Don Liu, Comer’s chief of surgery, discusses the procedure with the group: it’s minimally invasive, says Liu, wearing purple surgical scrubs. It will take about an hour to move the patient to another bed and hook him up to the machine. He checks his watch.
Back on the fourth floor Kahana prints out a registry of recent adult U.S. ECMO cases. Because the treatment is more common for infants and children—about 35 a year go on it at Chicago—she wants to see the likely outcome for an 18-year-old. In 2004, the printout shows, 17 adults went on the machine, and 47 percent survived. The previous year 32 were hooked up, and 69 percent survived. “The numbers are helpful,” she says, seeming hopeful at the prospects. Outside the teenager’s room attendants prepare his new bed, piling on three mattresses and a layer of eggcrates. The patient has to be higher than the machine he’ll be hooked up to, Kahana explains, because the treatment relies partly on the gravity of his blood falling through the tube and into the contraption. A suction pumps it back in.
Down the hall Schreiber speaks with the boy’s parents. The mother, fit in jeans and a sweater, nods and asks questions. The father, in a windbreaker, looks at the doctor but says nothing. Both parents appear tired.
Around the corner cheerful music sounds. Two clowns from the Big Apple Circus—a man playing a small accordion and a woman in a pink tutu—have come, as they do once a week, to entertain the kids. They turn right, away from the ECMO activity and toward other patients.
As the music fades Kahana shows the parents the machine, pointing out
how the clear tubes and yellow and green hoses work. More nurses and residents
gather in and around the patient’s room. Robert Daum, section chief
of pediatric infectious diseases, stands in the hallway discussing the case
details with Michael Kohrman, a pediatric neurologist. Kahana, who in her
anesthesiologist role will administer the boy’s medication, speaks
with surgeon Mindy Statter, who will perform the operation with Liu. The
attendants debate which way to wheel in the new bed, head first or feet
first. They need room to roll out the other bed, but not the ventilator,
and to keep the patient’s head near the door: the surgical team, working
in a smaller-than-usual operating space, will spill out the open doorway.
The boy’s father enters the room, stands at his son’s side,
and looks at his face with a furrowed brow.
The scheduled time, 11:30, comes and goes. At 11:45 two people carry the fold-out couch from the room for more space. The tall bed gets wheeled in, first one way, then the other. Schreiber and a dozen or so residents and nurses, most in light-yellow disposable gowns, encircle the bed, each claiming a part of the patient or machinery to lift and move on cue.
Outside peering in, the boy’s aunt, young-looking in a fleece and blond ponytail, wipes away tears. She doesn’t want her sister to see her cry. “He’s going to make it through this,” she says. Noting how many people are in her nephew’s room, she quips: “I hope everyone else on the floor is OK because everyone’s here.” Back inside Schreiber finally leads the count: “One, two, three!” Like a human machine, the group lifts the boy in unison onto the tall bed.
“I need a bottle of heparin,” Kahana instructs Rebecca Nolan, the ECMO coordinator, “no dilution.” “1,000 to one?” Nolan asks. “Yes.” Kahana removes her top layer, a deep-blue jacket, and drapes it over a hallway chair. She replaces it with a yellow gown and, like the rest of the surgical team, stuffs her hair into a blue cap. Nolan returns with the heparin, an anticoagulant, and prepares the two-and-a-half-inch needle. Schreiber, in the hall now, tells the father, watching from the doorway, “This might not be the best place to stand. It’ll be an hour or so. Wherever you’re comfortable. This doesn’t bother me, but if it were my kid...” He trails off, placing a hand on the father’s arm.
Schreiber was right to suggest a comfortable spot. Instead of an hour, the procedure takes much longer. “ECMO went well but took until 4 p.m. to get absolutely right,” Kahana writes in an e-mail that evening.
For two weeks the teenager stays on the machine. His family becomes a hospital fixture. His condition worsens. The anticoagulant causes bleeding in his gut and lungs, and instead of the expected one unit of blood a day, he needs up to eight. He suffers renal failure and goes on dialysis.
By day 15 the physicians see he’s unlikely to survive. With his parents’ understanding, they turn off the machine. He dies in minutes.
“Every soul who had taken care of that boy was standing outside the room,” Kahana says later. “They wanted to be there. This was a special human being in a special family who was dying.” His parents, she says, “were so gracious and bright and took it all in intellectually. Yet they seemed to know from the beginning that this might not go well.” Two weeks prior, she notes, he had been healthy. “That exuberance of youth can stop, and there’s no reason for it. We try to accept the fact that good people are going to die, and there’s nothing you can do about it.”
Back in the lobby the aquarium bubbles, parents and children wait in their respective seats, the mood is calm. Like the building’s planners, the Comer caretakers know that gloom can’t be checked at the hospital’s front door. When it descends they do what they can to guide patients and their families through.