Before pediatric heart surgery begins—before a surgeon slices open the chest, saws through the ribs, and cuts into the heart, and long before the outcome is known—there’s a moment of heartbreak. It happens every time. For Kimberly McCollum, 34, it occurred shortly after she marched into the operating room hand in hand with Dorothy, her 3-year-old daughter.
For Kimberly and Dorothy, the morning had begun at about 6 a.m. at their Brooklyn apartment. It was a crisp October day, two weeks before Halloween. Dorothy, who likes to select her own outfits—“I like dresses and tights and Mary Janes,” she says—wanted to wear the sky-blue dress with white collar, white tights, and her favorite glittery red shoes that recall her favorite movie, The Wizard of Oz.
By eight thirty, Dorothy and Kimberly were waiting patiently in a small room on the fourth floor of the Children’s Hospital of NewYork-Presbyterian, which opens a $120 million, 191-bed facility this week. Dorothy, who stands three feet tall and weighs 32 pounds, has curly blonde hair, giant green-brown eyes, and eerily blue-tinged lips, as if she’d just stepped out of a freezing ocean. “For 80 percent,” said Kimberly, “she’s peachy.” Kimberly was referring to the oxygen-saturation level in Dorothy’s blood. Dorothy might be peachy, relatively speaking; still, she was sometimes short of breath, especially if she skipped too much, which she liked to do.
Kimberly had learned of her daughter’s condition shortly after giving birth. Awaking in the hospital, she found three doctors at the end of her bed. Instantly, “I knew something was wrong,” she says. Like one in 100 kids, Dorothy had been born with a heart defect. Dorothy’s was complicated. A normal heart has two ventricles, one to pump used blood to the lungs, another to pump oxygenated blood to the body. In Dorothy’s case, one ventricle was undersized and unusable. In effect, she had half a heart.
“These kids get into trouble as soon as they breathe,” explained Dorothy’s surgeon, Dr. Jan Quaegebeur (pronounced QUA-ga-bur), director of pediatric cardiac surgery at Columbia and Cornell. The only reason they survive at all is that a second defect—a hole in the heart—allows some oxygenated blood to filter through to the body. Without a series of surgeries, Dorothy probably had no more than a few years of life ahead of her.
Quaegebeur had done Dorothy’s first open-heart surgery when she was just 5 days old to shunt more oxygen-rich blood to her system. Her next surgery, performed at age 1, directed some of her used blood directly to her lungs. It was all part of a planned three-step sequence to rebuild her heart. That left one procedure to go, today’s.
In the waiting room, around 11 a.m., Dorothy busied herself with medical gear stored on shelves on the wall. She stood on the tips of her red shoes, slipped on a pair of rubber gloves, purple ones, and grabbed a blood-pressure cuff. “Not too tight,” said Dorothy, seeming to remember the experience.
She took a Band-Aid and stretched it on her mom’s arm.
“Maybe she’ll be a doctor,” her mother mused.
By now, Dorothy and her mom had developed a special language for surgery. As Dorothy finished applying the Band-Aid, Kimberly explained, “You’ll get unzippered, then the doctor will play with your heart a little. And then?”
“And then they’re not going to give me a shot,” Dorothy said, pushing her belly into her mother’s knees.
“And then Halloween,” said Dorothy excitedly.
Halloween was in fifteen days. Dorothy had already planned her costume.
“Glinda,” she said hopefully, the Good Witch from The Wizard of Oz.
A few minutes later, Kimberly helped Dorothy change into a yellow hospital gown with clowns on it. A nurse put an I.D. bracelet on Dorothy’s wrist. Mom stepped into her own special outfit, a gauzy white hospital suit with hood and mask. A nurse led mother and daughter, hand in hand, along a tiled corridor, through a swinging door, and into a room with theatrically bright lights. Stacks of machines made anticipatory squeaking noises. Masked people in blue uniforms bustled here and there. In the middle of this activity stood an empty bed. “She knew what was up,” Kimberly said a few minutes later. She helped lift Dorothy onto the bed, where she sat in her yellow gown.
“Sitting makes her feel less vulnerable,” explained a thoughtful anesthesiologist—“the sleep doctor,” Dorothy called her—who cradled one arm around Dorothy and with the other covered Dorothy’s mouth with a mask. Kimberly held Dorothy’s hand.
“She was trying to be very brave,” her mother would say. “She’s much braver than I am.” Dorothy let out a soft cry. The anesthesiologist began to tell a story, the same perfectly boring one she always tells, about a child who receives a cat. Dorothy’s eyes closed. The anesthesiologist settled Dorothy’s head onto a blue pillow.
Kimberly turned and pushed through the swinging door, exiting alone. She pulled off her mask and dissolved into tears. (“Most parents hold it together for the kids,” said the anesthesiologist, “until they get outside.”) “You can be as confident as you want,” Kimberly explained. “It’s still heartbreaking to leave your daughter’s life in another person’s hands.”
Heart surgery in kids is spectacularly difficult. In adults, heart disease is epidemic—60 percent of us may die from it—but adults typically suffer from a relatively small number of conditions, and as a result surgeons mainly do a handful of standardized operations very well. In kids, however, heart defects are incredibly varied and bizarre. “Every possible weird anomaly you can imagine exists,” explains Dr. Jonathan Chen, 35, a new fellow in pediatric heart surgery at the Children’s Hospital. “Is it possible to have toilet water come out of the sink and the sink water come out of the toilet? Yes. Is it possible to have all the red blood in your body go to the lungs instead of the heart, the way it’s supposed to? Yes.” Almost every week, the head of pediatric cardiology tells a case-review conference, “I’ve never seen anything like that in my 40 years.”