Fragile Beginnings

by Adam Wolfberg, MD

  The roof to Larissa’s incubator was swung up, and, in a practiced motion, six hands placed Larissa, her breathing tube, and the spaghetti of monitoring wires onto the table where the neonatologists would do their best to re-create Kelly’s womb for our daughter.

  The table, designed for maximum access and positioned at a comfortable height for standing physicians and nurses, was surrounded on three sides by low Plexiglas walls that were just high enough to prevent Larissa and the syringes, suction bulb, and assorted equipment from rolling off. The back of the table rose up to support a heat lamp, which glowed orange overhead. Whenever Larissa’s temperature fell below 98.6 degrees Fahrenheit, the probe that was stuck to her chest would signal the warmer to increase the radiance of the lamp. To one side, ribbed plastic tubing extended from a square, beige, wheeled ventilator and snaked onto the table. Carefully holding on to Larissa’s breathing tube, the respiratory therapist disconnected the plastic purple bulb and attached her tube to the ventilator tubing. The therapist weighed at least three hundred pounds and was built like a linebacker, and his hands were bigger than Larissa’s entire body; it was nothing short of amazing that this man’s beefy fingers were able to connect the delicate tubes that kept the tiniest of babies alive. With everything in place, he hit a switch to turn on the ventilator and checked the settings carefully. Then he easily moved on to the next sequence of tasks, his heavy breaths mingled with the soft but sure whooshing of the ventilator as it pumped the oxygen that Larissa needed to survive.

  With the orange heat lamp shining down on her, Larissa lay naked but for a doll-size diaper as she was connected to an increasing number of tubes and wires by adult hands moving in and out from the sides of the table. One of the doctors cut another few millimeters off Larissa’s umbilical cord, exposing the vein and two arteries, and threaded tiny catheters down these easily accessible vessels. Normally, these blood vessels, which are a fetus’s lifeline in the uterus, clot off and are never used again once the umbilical cord is clamped and cut immediately after delivery. But in the case of a very premature baby, doctors use the umbilical arteries to measure blood pressure, and the umbilical vein to infuse fluids and medications.

  Another doctor put a tiny flashlight behind Larissa’s arm and used the light to identify a vein; it made a dark line against the illuminated red-yellow of her nearly translucent arm. Guided by this backlight, he managed to stick a needle into this tiny vessel, and then he threaded a catheter up inside her arm so that Larissa could receive fluid and liquid nutrition.

  The respiratory therapist, relieved of his job of squeezing the purple canister, briefly disconnected the breathing tube from the ventilator and squirted a type of fluid called surfactant down the tube; this would help keep her lungs from collapsing. One of the less experienced nurses, still tentative in her motions, was allowed to place electrodes on Larissa’s chest and attach them to machines that measured her heart rate and respiratory rate. She also carefully taped a tiny red photodiode to Larissa’s foot; this would measure the oxygen level in her blood. Once all the lines, tubes, and machines were attached, two hands elevated Larissa while two more slid her into a plastic bag up to her neck; this was to limit fluid loss through her translucent skin.

  Two hours later, I left Kelly in the surgical recovery room and walked upstairs to the NICU. I showed my hospital identification and was waved in.

  “Baby Lowery?” I asked an orderly in the hallway, referring to Kelly’s last name, which would be Larissa’s until discharge.

  She pointed across the unit. I walked through the crowded room, dodging ventilators, medication carts, and laundry bins. I passed a dozen babies lined up on both sides of the room, each one surrounded by equipment.

  These were the sickest children, mostly confined to their raised tables or incubators. A mother sat in a rocking chair, pushed right up next to one of the incubators. She wore the loose-fitting sweatshirt common among women recently postpartum, whose abdomens still protrude. Her hands and her arms disappeared up to her elbows inside the incubator through the two portholes in the side of the device, and with the index finger of one hand she stroked her son’s leg. Her face was pressed to the Plexiglas of the incubator, and I could make out only the occasional soft word she spoke through the glass: “You can do it, Jason. . . . Mommy loves you so much. . . . What a good boy.”

  At the farthest end of the room, portable blue barriers created a makeshift semblance of privacy around one of the incubators and a couple of rocking chairs. A hush seemed to surround this part of the otherwise busy NICU, and nurses and staff members were noticeably quieter when they cared for the babies near those partitions. While I made my way across the room, a nurse respectfully stuck her head around the barrier, exchanged a couple of words with another nurse, and then withdrew. As I got closer, I could hear faint sobbing coming from behind the screens. Soon a black-clad hospital chaplain emerged, head bowed after giving last rites, and walked purposefully toward the exit. This was a place where birth and death often came close together.

  I found Baby Lowery ensconced in her plastic bag. I knew it was her only because a hastily scrawled sticker with her name in black marker had been stuck to the wall behind her head. My tiny daughter weighed one pound, fifteen and a half ounces, about as much as a quart of milk. She made her unhappiness at being born quite clear: her arms and legs, so scrawny without baby fat, gesticulated wildly as she searched for the confines of her mother’s womb. Everything dwarfed her—the IVs, the plastic tubing hooked to her breathing tube, the syringe lying nearby that was longer than her leg.

  I must have stared for some time. I had seen many premature newborns, but it took me a while to match the image of this tiny, thin, plastic-encased creature with my concept of a daughter.

  A young nurse came up. “Can I help you?” she asked.

  “I’m Dr. Wolfberg . . . Adam . . . I’m the father.”

  “Oh.” She didn’t bother hiding her frown as she looked at Larissa, then at my scrubs and my hospital ID, and finally at my face, as if she were trying to reconcile discordant concepts. “Hang on. Let me get her doctor,” she said, and she fled to retrieve the neonatologist in charge of Larissa’s care. I continued to stare, standing tentatively a foot away from the table.

  Hi, Larissa. I formed the words with my mouth, but they didn’t come out. “Don’t worry, sweetie. They’re going to take really good care of you here.” I was whispering, willing the words to penetrate her tiny being and offer some comfort. “Mommy and I love you.”

  “I’m Dr. Abdulhayoglu.” The petite physician with her brown hair pulled back in a short, efficient ponytail introduced herself. Her last name was so difficult for Americans to pronounce that everyone called her Dr. Elisa, mixing the respectful title with her first name. Given her height and youth, the name fit.

  “How’s she doing?” I asked.

  “It’s really too early to tell.” Dr. Elisa avoided the question, but she smiled up at me, acknowledging the dodge with compassion.

  I was still a short distance away from Larissa. I could have touched her, or at least touched her bag, but I didn’t.

  “The first forty-eight hours are critical,” Dr. Elisa started. “If she makes it to Monday without anything major happening”—it was Friday afternoon—“I’ll be very optimistic.”

  “What are the chances of that?”

  “It’s really hard to say.” Dr. Elisa avoided this question also. “We’ll take it day by day.”

  “What will you be watching for?” I pressed. I remembered the basics of what could go wrong early in a premature baby’s life, but I wanted to hear it again, and I wanted to hear whether anything in Larissa’s first hours had raised a red flag for her doctor.

  Dr. Elisa did her best to lay out the issues that Larissa would face in the short-term and explain the technology that was available to help her survive.

  “During
her first few days she could start to breathe for herself, or her lungs might begin to fail,” the neonatologist cautioned.

  Indeed, over 40 percent of babies who weigh less than three pounds at birth have some degree of breathing impairment, and more than one out of every five babies in this group will have long-term breathing problems. Overall, lung disease is the leading killer of the smallest babies.

  Dr. Elisa continued, “The first days after delivery are also the most likely time for an IVH to occur.” I knew this was medical shorthand for intraventricular hemorrhage, bleeding in the brain, which is particularly common among premature newborns and is the injury most often responsible for lifelong disability.

  She concluded with a sober reminder. “Since—as you know—a common cause of preterm labor is an infection inside the uterus, we’ll be on the lookout for signs that Larissa is going into shock due to an overwhelming infection.” I remembered that up to 20 percent of extremely premature newborns develop systemic infections and that this increases the risks of other complications.

  Dr. Elisa and I stood next to each other clad in identical blue scrubs, our arms crossed in front of ourselves, as if we were warding off the cold.

  Listening to her talk, I saw Larissa in front of us, but my mind kept leaping to the pictures of children I had seen in medical school and residency. The child in a wheelchair, muscles contracted by cerebral palsy, who had suffered a severe intraventricular hemorrhage at birth; the child moored to an oxygen tank by thin plastic tubing.

  She smiled. “You can touch her, you know.”

  I edged closer to the table and reached out my hand. I touched the plastic bag, and then, with some effort, I found a patch of skin by her temple that was not covered with tape, a hat, or the bag, and I gently caressed my daughter for the first time. I felt a rush of conflicting emotions—a desire to do anything in the world that would make Larissa okay and an almost panicky wish to follow the chaplain out the door; a sense of overwhelming tenderness for my unbelievably frail daughter, and a feeling of revulsion for this scrawny creature who was red and purple, not pink, and pinned down by wires and tubes, not a cozy receiving blanket.

  “You know what you can do?” Dr. Elisa said. “Your wife’s blood doesn’t match Larissa’s, which means yours does. Why don’t you go bank some blood, because Larissa will inevitably need a transfusion at some point in her hospitalization.”

  This suggestion—and given the safety of the hospital blood supply, we both knew it was just her attempt to help me feel useful in this situation that was entirely out of my control—gave me a purpose. I walked the length of the hospital to the blood bank and eventually reclined in the vinyl chair as the technician swabbed my forearm with alcohol and easily, without searching, stuck a large catheter into a vein. As the dark blood ran down the tubing into a collection bag, I closed my eyes, trapping the tears before they fell.

  I found Kelly in a postpartum room upstairs from the NICU, where, exhausted by the morning, she was trying to take a nap. I left the hospital to pick up Grace from school. Earlier, Hannah, three years old and oblivious, had happily gone back to our house with my parents.

  I parked behind the school and found Grace working on her homework in the after-school classroom. Grace, who had the palest blond hair and a moon-shaped face, was laughing with a group of friends who were working on math problems together at a table. She had always been a self-assured child and had quickly made friends when she started fourth grade in Boston. She came over to me and we collected her coat, hat, and mittens, put her lunchbox and homework in her backpack, and walked in the twilight to the car.

  Inside the car, on the short drive to our house, I said to Grace, “Your mom had the baby this morning. You have a sister.”

  “I thought Mom was going to have the baby in April.”

  “She was, but the baby came early.”

  “Oh. When will she come home from the hospital?”

  “Well, she’s really, really small, Gracie.”

  “No, not the baby—Mommy. When will Mommy come home?”

  “Mommy will come home in a couple of days. But your sister is very small, and she’s pretty sick. She will have to stay at the hospital for a while.”

  “Is she going to die?”

  “I’m not sure,” I said.

  We had barely walked into the house when the doorbell rang. I had called Kelly’s sister from the hospital that morning; Karen had dropped her kids at school in Montgomery, Alabama, and driven straight to the airport. Now, she came in the door and swept Hannah and Grace up in an embrace.

  “Why are you here, Aunt Karen?” Hannah wanted to know.

  “To see you,” came the reply. It never occurred to Hannah not to believe her.

  Later, while Hannah was eating dinner, Grace pulled Karen aside. “Did you hear that my mom had my sister?”

  “I did, sweetie.”

  “I think she might die.”

  “I hope not.”

  “Me too.”

  There was a pause.

  “My mom’s going to be okay, right, Aunt Karen?”

  “Your mom is going to be fine.”

  “You sure?”

  “Promise.”

  That night, I helped Kelly move from her hospital bed to a wheelchair. She held a folded blanket to her abdomen to minimize the pain as I moved her legs over the side of the bed. They were puffy from the combined effects of pregnancy and surgery. After she was draped in blankets against the chill of the hospital, I wheeled my wife to the NICU. We paused at the front desk, and one of the nurses came to retrieve us. She wheeled Kelly slowly to Larissa’s bedside. I followed a few steps behind.

  The nurse touched a lever, and the Plexiglas-circled table dropped down to Kelly’s level. Tentatively, my wife extended her arms toward Larissa, grimacing with pain, and rested them on the Plexiglas. She stopped and turned to the nurse.

  “Can I touch her?”

  “Of course you can.”

  Kelly put out her hand just as Larissa thrashed her arms and legs against the plastic. Startled, Kelly drew back.

  “Sometimes, you can settle them by gently cupping them with your hands,” the nurse explained, reaching in and taking Kelly’s now tentative hands.

  One of Kelly’s pale hands cradled Larissa from underneath, the tips of Kelly’s fingers coming to rest against the dark fine hair on the back of Larissa’s head. Kelly’s other hand gently bent Larissa’s legs through the plastic, enclosing them, limiting them, as her womb had done until that morning. Larissa kicked again, and this time Kelly’s hands remained gently in place. Larissa seemed to calm at the touch.

  “I am so sorry,” Kelly whispered. “I am so sorry.” Tears began to run down her cheeks.

  I was crying now also, rubbing Kelly’s back.

  Larissa, stilled by her mother’s warm hands, lay quietly, her thin chest rising and falling with the whoosh of the ventilator beside the table. When the ventilator exhaled, it created a divot in the skin just below her sternum, making it look as if Larissa’s chest were caving in.

  With a small pop, a teardrop hit the plastic. Kelly wiped her eyes with her shoulder so as not to contaminate Larissa’s environment.

  On rounds the next morning, the pod of people moved awkwardly from bed to bed, stepping around the equipment and chairs that crowded the NICU. The Brigham NICU is an enormous room that fills most of the sixth floor of the building. Half walls, each rising five feet, divide the room into fourths—NICUs A, B, C, and D—and babies are lined up along these walls and around the periphery of the unit. The two units in the center, B and C, are for the sickest babies, and because of the configuration, it’s a noisy place without adequate storage space for all of the equipment needed to keep the babies alive. The fellow—the most senior physician in training—nominally led the rounds and served as
the facilitator for the group of residents, medical students, nurses, and respiratory therapists. But when an important decision needed to be made, all eyes turned to the neonatologist in charge; that day, it was Dr. Linda Van Marter.

  Reaching Larissa’s bedside, the members of the group arrayed themselves in a semicircle around Larissa and spent extra time there because she was a new admission.

  “This is day of life two for Baby Girl Lowery, born yesterday by cesarean to a thirty-eight-year-old wife of an obstetrics resident here at the Brigham,” intoned the resident assigned to take care of my daughter. There was an audible gasp from several members of the group at the news that this scrawny child belonged to a member of the hospital family.

  The resident continued, “This baby’s hospital course has been relatively unremarkable. She was lined and labbed, pan-cultured and started on triples”—medical shorthand to describe routine procedures: intravenous lines placed, blood and urine sent to the lab for the usual measurements and to test for infection, and broad-spectrum antibiotics administered to treat any combination of bacteria trying to sneak up on Larissa.

  The resident read the ventilator settings off her rounding sheet, and in a workmanlike monotone listed the contents of the intravenous nutrition that dripped slowly into the catheter in Larissa’s arm. “Her vital signs are within normal limits, she is requiring no medications to maintain her blood pressure, and her morning labs today are all normal except that her hematocrit is a bit low, presumably an equilibration issue.”

  Model thin and with the unglamorous look of a doctor who spends her time caring for the tiniest people on earth rather than applying mascara, Dr. Van Marter kept a poker face. “What do you mean by an equilibration issue?”