Our son was born healthy, large and pink-skinned, with a newborn assessment score of a perfect 10, but an hour after his birth, a nurse told us that something was wrong. He was jaundiced. It was not a typical case of jaundice; his bilirubin levels kept increasing at an alarming rate. I'd only seen him for a few moments — he'd been delivered by C-section, then whisked away for the usual tests and procedures — but now, as I was moved to a recovery room, the doctors couldn't tell me when I might see my baby again.
The doctors also didn't know the cause of the jaundice. They were running tests, but it was getting more severe. I panicked. Was it an infection? A rare cancer? A genetic disease? They couldn't say.
At that point in my life, hospitals and I weren't on the best of terms. When I walked through their sliding doors, a version of the slogan from Roach Motel ads ran through my head: They check in, but they don't check out. More than 20 years ago, when I was still in my teens, my mother had been admitted to New York University Medical Center with stomach pains. Doctors initially thought she had an ulcer, and then they suspected hepatitis. They finally diagnosed it as melanoma that had metastasized to her liver. She died nine days later.
"Your mother comes in here with a stomach ache and finds out she's a dying woman!" her gastroenterologist had said to me in the hall two days before she died, throwing his hands up in the air, as if he was exasperated that someone might have the audacity to die after such a minor symptom.
Seven years after that, my father checked in to the same hospital with pressure in his chest. He had a massive heart attack in the hospital the next day, and died.
Their deaths made me anxious about any seemingly small health problem. A fever could lead to a coma. Knee pain was obviously a tumor. Even after 20 years, I can't erase the image of my mother in the hospital bathroom, her urine turning the color of coffee as her liver failed. In her last days she writhed and wrestled with so much pain that she could barely speak. I can't forget the moment my father's doctor called on the phone and said, "Come at once, it's very serious," and how I sobbed quietly during the taxi ride over the 59th Street Bridge to the hospital, knowing what lay ahead, as the driver glanced in the rear view mirror and asked, "Whatsa matter, honey? Something wrong?"
My son's bilirubin levels continued to rise, despite intensive phototherapy. He soaked up the light while in a bassinet covered in aluminum foil, like a toaster oven tray. His tiny heels resembled pincushions, speckled with marks from countless needle pricks. He wore an eye mask that was secured to his head with little Velcro patches, which looked like the buds of fuzzy alien antennae.
Every hour, as I recovered from my surgery, the nurses wrote his bilirubin levels on a whiteboard at the foot of my bed. I went to sleep looking at those levels, and woke up staring at them. The nurses encouraged me to pump my milk, though I wondered if my baby would live to drink it.
When the tests were completed, we were told that our baby had hemolytic disease, a result of ABO incompatibility. Because my type O blood and the baby's type B blood were incompatible, he'd been born with antibodies to his own blood type that were destroying his red cells. The severity of his case was extremely rare. The doctors wanted to perform an exchange transfusion, which meant removing my son's blood through his belly button and replacing it with donor blood. They explained the risks: clots, heart and lung problems, infection, shock, death. The hospital had only performed the procedure once during the previous year.
I cried and blamed myself. I'd caused this. I'd broken too many pregnancy rules, recklessly eating sushi, deli meat, unpasteurized cheese. Or maybe it was the worry itself, my deep-seated anxiety that had hurt him. I'd already had one healthy baby, my daughter, and I was greedy to expect to have another. Two nurses sat on either side of my bed, held my hands, and assured me that it wasn't my fault.
The doctor began the procedure. He removed my son's blood a teaspoonful at a time, and replaced it. They checked the bilirubin levels again and again. Finally, the numbers began to decrease.
My baby began to recover, but we weren't completely in the clear. "There could be long-term neurological effects," one doctor warned us. "It's hard to know for certain." One of the first signs of damage from high bilirubin is hearing loss. The doctor scheduled a hearing test in three days.
I braced for the worst. My blood pounded every time I approached the NICU's high-security doors and gave my name to the nurse stationed as a sentry. I felt seasick as I scrubbed under my fingernails with the special disinfectant soap, and used the foot pedal to work the faucets — all these precautions because any germ could devastate these infants struggling to survive.
Despite everything, the NICU nurses seemed unfailingly hopeful. Theresa, Belinda, Patty and Wanda spoke to my son in tender, gentle voices; they gingerly touched his tiny hands. We stayed in the hospital over New Year's Eve, and Belinda decorated my son's eye mask with "2010" drawn in bright magic marker, so he looked like he was recovering from a night partying in Times Square.
"He's going to be O.K.," Patty told me.
"He's a good person," Wanda said. "You can tell their personality from day one, you know. He's a good one."
My son, for his part, seemed to take the whole NICU experience in stride, relaxing on his toaster oven tray as if he was sunbathing in the Hamptons. When I nursed him — the only time he was allowed out from under the lights — he cooed and sighed, as if he'd never imagined such bliss.
While my baby slept, Wanda showed me a wall covered with pictures of beaming children, and letters and holiday cards from kids who'd been through these doors and thrived. Her voice softened as she pointed to a picture of one little boy. "He weighed 12 ounces at birth," she told me. "The size of a soda can." There were photos of smiling children on horses, or playing soccer and hockey and football, or gathered around Christmas trees and family dogs.
The day of the hearing test arrived. My husband and I clutched hands as the audiologist attached nodes to our baby's head and studied multicolored bars on a screen — and finally told us our son had passed the test. He was fine.
Six months later, he had his second, and final, hearing test. He passed that also. Now, three years later, the only physical reminder of the experience is a Christmas ornament the nurses made for us, with my son's footprint next to a sparkly snowflake.
Those terrifying days live on, though. My husband can't bear to think or speak of that time at all. He'd never expected that the world might suddenly turn a healthy baby into an unhealthy one, that the universe could be so cruel as to taunt you with that pain. As for me, I don't mind speaking of it. I realize it's the experience that changed my feelings about hospitals: People do come out every day. Babies who would have died years ago now live.
One of those babies is now a toddler, a sweet 3-year-old boy who crawls into my lap and says, "I need huggies! I need kisses!" not knowing that he's the first gravely ill person I've loved who was cured. As Wanda walked us to the car after he was discharged, I thanked her, in tears. "I'm going to raise him the best I can," I said. "To be kind, and thoughtful, and — a good person."
Wanda said, "That's how we change the world."
My son wasn't the only one who came out of the NICU healed. There were two of us.
Margo Rabb is the author of the novel "Cures for Heartbreak." Her work has appeared in The Atlantic, One Story, Best New American Voices and elsewhere.
