Fragile Beginnings

by Adam Wolfberg, MD

  Chapter 9. Making It Routine

  I was on a hastily arranged paternity leave from my residency. Kelly had been on the interview trail for internships in clinical psychology the week before, and now she canceled her remaining interviews. Ten days after Larissa was born, I took Grace and Hannah to school and came home to a house that was quiet and eerily calm. Kelly got ready—the cesarean incision was healing but it made her move slowly—and we drove to Brigham and Women’s.

  The day was bright and cold. I dropped Kelly at the front door to the hospital and she waited for me inside while I parked in the residents’ lot. Although I’m certain it was the same, the lobby seemed quieter that morning except for the calm buzz of purposeful activity.

  We sat in the NICU waiting area while the secretaries checked to make sure the medical team was done rounding. Parents weren’t allowed in to the NICU until the physicians had checked in on each baby and made a care plan for the day.

  We were buzzed through the double doors into the unit. Walking to Larissa’s bedside, I thought the NICU seemed calmer too.

  “Well, hello.” We were greeted by Gabi Harrison, an experienced NICU nurse who had been assigned as one of Larissa’s primary nurses.

  “Larissa had a really good night,” she said. “Her weight is finally up a little bit, and as you can see, she is doing really well with her nasal cannula.” Larissa now received only a little bit of oxygen into her nose but was doing all the work of breathing on her own.

  “Would you like to hold her?” Gabi asked.

  Kelly and I looked at each other, caught off guard. Was it safe? Would we hurt her? We were used to the idea of Larissa in her incubator; the idea of holding our daughter was frightening.

  Gabi helped Kelly position herself in a reclining chair. Then she expertly wrapped Larissa in a white hospital-issue blanket, making sure her head was covered in a cap; bunched together the intravenous tubing and cords attached to the monitors displaying her oxygen level, heart rate, and breathing; carefully lifted her out of the incubator; and gave her to Kelly.

  Larissa lay in the crook of Kelly’s arm. At first, Kelly barely moved, clearly afraid she would harm the tiny child. Slowly, when nothing untoward happened, she relaxed. A worried look turned to a smile. She stared into Larissa’s face as Larissa opened and closed her eyes. Occasionally, Larissa would twitch against the blankets.

  Then the alarm sounded, a high-pitched beeping noise, accompanied by a blinking red light. Gabi, Kelly, and I looked at the monitor. Larissa’s heart rate had dropped into the eighties—way too slow for a premature newborn. A look of panic crossed Kelly’s face. She looked at me. I looked at Gabi.

  Gabi’s face wasn’t smiling, although she didn’t seem worried. But the alarm kept ringing, and finally Gabi started moving toward Kelly. Then, as suddenly as it had started, the alarm stopped. The heart rate was now 124.

  When Kelly went to the bathroom, I took her spot and held my daughter on my arm against my chest, her head at my elbow. Her eyes closed, and she seemed to sleep, though she still had the occasional shivering twitches. I remembered feeling similar movements through Kelly’s abdomen only a couple of weeks earlier.

  Toward lunchtime, we left. We ate at a diner near our house. We were out of the cold, and the pastrami Reubens tasted really good; around us, people on their lunch breaks talked business and complained about their bosses. When we finished, I dropped Kelly at home to rest and went to pick up Hannah and Grace at school.

  The next day we did the same thing. We were developing a routine. It wasn’t the one we had imagined, but we were becoming comfortable in it.

  Right after he took the helm of the Brigham NICU, Steve Ringer made a major and unorthodox move to improve the quality of care in the unit: he announced that he would be a full-time Brigham and Women’s employee and would spend all of his clinical time at that hospital only. Then he hired a deputy, who would also spend his time exclusively at Brigham and Women’s.

  Over the following year, he made the staff physicians choose: they could continue to rotate through other NICUs—in which case they would lose their Brigham and Women’s privileges—or they could work exclusively at Brigham and Women’s.

  One physician, significantly senior to Ringer, challenged him. “You’re not going to tell me what to do. This is the Joint Program in Neonatology—you’ll have to answer to them.” The physician stormed out of the Brigham NICU and walked across the street into Children’s Hospital and then into the office of Michael Epstein, director of the joint program and also, temporarily, Ringer’s boss.

  “Ringer’s destroying the joint program,” the physician said. “Medicine at Harvard only works when we work as a team.”

  “Ringer is right,” Epstein said. “You need to choose.”

  “No, you need to choose. Ringer or me.”

  “I already chose Ringer.”

  Ringer’s team began to develop protocols for handling multiple clinical issues, even those as straightforward as ventilator settings. In the basement conference room, Ringer would corral as many neonatologists as he could—there were always some who were away working on research or at home after a busy call night. The group would review a recently published article on the topic at hand—for example, a paper that suggested a novel way of managing ventilator settings—and then a lively discussion would ensue.

  Invariably, at some point in the discussion, one of the more senior physicians would get fed up.

  “I understand the data we are discussing today,” a veteran physician typically began, “but I’m not certain that it is appropriate to generalize these results to all of our patients.”

  “Can you give me an example?” Ringer asked, knowing where the discussion was headed.

  “Remember that Redmont baby?” There were a few nods around the table. “That child was just not thriving until we upped the oxygen.”

  “Is there a published protocol we could review?” Ringer pressed.

  The physician pointed to his head. “Steve, I’ve been doing this for twenty years. Do you want to tell me experience doesn’t count for anything?”

  Sometimes Ringer pushed the point. Other times he didn’t. But the message was always the same: care would be based on medical evidence, and there would be a Brigham way, not twelve different ways depending on which doctor was on call.

  “I have twelve neonatologists on my staff,” Ringer complained, “and each one is unequivocally the single best neonatologist in the entire world.”

  Within a year, an order developed. “We all got to know each other, and although we didn’t practice exactly alike, we practiced similarly. I could speak to a family and be confident that my advice would align with the advice my colleague had provided earlier in the day,” Ringer said.

  Complications seemed to decline. There were fewer pneumothoraces—injuries that occur when the ventilator punches a hole in the lung and air escapes into the chest cavity—and fewer infections.

  Nursing turnover declined as well, and the staff thrived in the setting of consistent medical protocols and even-keeled leadership. Nurses could focus on their tiny charges instead of spending time and angst interpreting changing instructions from a large and transient group of physicians.

  Not long after Ringer took charge of the NICU, the ophthalmologist who treated most of the smallest preemies came to see him. The ophthalmologist had just given a talk at the Perkins School for the Blind, in nearby Watertown, Massachusetts.

  Using a PowerPoint presentation, he’d walked the parents through slides that demonstrated a tragic, albeit well-intentioned, mistake in the history of newborn medicine: efforts to maximize the oxygen levels of premature newborns had unwittingly caused blindness in a large number of children. When research revealed this association, neonatologists had ratcheted down the oxygen levels, and blindness became quite rare.<
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  “Now we see very low levels of severe retinopathy of prematurity,” he said, describing the condition that had historically led to blindness. “For the past few years, we have been on the cutting edge of this science.” He showed recent data, which demonstrated a marked reduction in blindness, and explained that although some of the smaller preemies did get retinopathy of prematurity, it almost always resolved without long-term damage to the children’s vision. He praised Ringer’s new initiative and spoke about the new cohesion of his team and the protocols for use of the ventilator in the Brigham and Women’s NICU, which had specific targets for oxygen levels.

  A hand went up in the back of the room. “Doctor, thank you for this presentation. I’m sure it’s coincidental, but you took care of my son, and he had stage-four ROP,” a woman said, using the acronym for retinopathy of prematurity, “and it didn’t resolve.”

  Another hand went up, and then another. There were five parents in the room whose children had been born prematurely at Brigham and Women’s and were now vision-impaired because their ROP had not resolved. The ophthalmologist was stunned.

  “Are you seeing a lot of ROP in your follow-up clinic?” he asked Ringer back at the hospital.

  “Uh, I don’t actually see these kids in follow-up,” Ringer admitted. “Aren’t you seeing the kids with ROP after they go home?”

  “Only if they make an appointment.”

  Ringer realized there were challenges much bigger than those on his unit. These parents were describing children who were counted among the seeing when they left the NICU, but because no system was in place to keep track of the babies, the long-term consequences of the care the babies received early in life was lost to the people who most needed to know it.

  “You know what these little guys really like?” Gabi said to Kelly. “They love to be skin to skin with their moms. It really calms them down.”

  Kelly was wearing a sweatshirt, so Gabi brought her a hospital gown and helped Kelly change into the gown so that it opened in the front. Kelly settled into the recliner, and Gabi carefully lifted Larissa out of the incubator and put her on Kelly’s chest.

  She expertly removed Larissa’s onesie, leaving her in her tiny diaper, and curled her, chest to chest, on Kelly. Then she covered Larissa with a blanket. The tubes and wires fed out of the bottom of the blanket.

  Kelly tried not to move, but Gabi showed her how to cup her hand to support Larissa’s bottom; Larissa fidgeted, but then, as if she knew what she was supposed to do, she settled down.

  This time, her heart rate stayed in the normal range, and her breathing continued steadily. Kelly held her daughter, stealing glances at the monitor every few seconds for confirmation that Larissa was fine.

  In the early 1970s, the newborn ward at the San Juan de Dios Hospital in Bogotá, Columbia, filled all of its incubators and had nothing to offer premature newborns, who needed to be kept warm.

  Families and physicians had no choice: mothers, fathers, and even extended family members were instructed that their fragile children were to be laid upon their bare chests and covered with clothing or blankets to keep them warm until incubators became available.

  Dr. Edgar Rey, a pediatrician at the sprawling hospital, noticed something intriguing: babies who’d spent their first weeks on their mother’s chests were doing better than babies raised in incubators.

  Rey called it kangaroo care, after the marsupial practice of carrying the joey in a warm and protective pouch after birth, and the name stuck.

  It is intuitive that babies who receive kangaroo care thrive, given their proximity to the sound, smell, and warmth of their mothers. The neural pathways of children deprived of attention early in life are aberrant, so it makes sense that newborns stuck in sterile plastic boxes don’t do as well as those who spend their first weeks on their mother’s chests.

  Medical statisticians have since provided numbers that back Dr. Rey’s keen observation. Babies who receive kangaroo care have fewer infections and go home sooner than babies cared for in the usual way.1 There is even some evidence that they gain weight more quickly and might be smarter at one year of age than other babies.2

  Of equal importance, kangarooing was something that Kelly could do for Larissa.

  After I went back to work, on those cold mornings in February and March, Kelly would drop Grace and Hannah at school and then head across town to the NICU.

  A nearly religious coffee consumer, Kelly now drank nothing in the morning, knowing that liquid would make her have to pee, which would mean disturbing Larissa.

  Each morning in the NICU, Kelly would hang up her winter coat, carefully wash her hands, and go to Larissa’s space. In anticipation of her arrival, the nurses usually had pulled the NICU’s version of a Barcalounger up near Larissa’s incubator. Wearing a sweater that buttoned in the front, Kelly, with help from Larissa’s nurse, would slide Larissa between her breasts so Larissa’s head rested on Kelly’s sternum.

  “It’s you and me,” Kelly would mutter as the day crept past.

  It was all she could do. Larissa was still fed by feeding tube, so it would be some time yet before Kelly could give her a breast or a bottle.

  At lunchtime, Kelly would eat a sandwich she had packed and go to the bathroom. Larissa’s diaper was changed, and then they would settle in again for the afternoon. When the winter light dimmed, Kelly and Larissa’s nurse would put Larissa back in the incubator for the night, and Kelly would head out to retrieve Hannah and Grace.

  Although we didn’t do it with Kelly’s consistency, the rest of the family got into the act. Between shifts at the hospital, I would kangaroo Larissa, and Kelly would later joke that she knew when I had been there because Larissa would return to the incubator with my chest hair stuck in her little hands. Even my parents took turns.

  At one point, a disagreement developed. The nurses were doing the usual three o’clock shift change one day, and they sat in a group near Kelly, who was kangarooing Larissa. Babies were being discussed, and confidential medical information was being shared. One of the nurses told Gabi she didn’t feel comfortable doing the sign-out—the exchange of medical information—with Kelly sitting there. She would have to leave until sign-out was over.

  “It’s policy,” that nurse said. “Parents can’t be here for sign-out. It’s inappropriate for them to hear about the other babies. And besides, how can we be candid if the child’s parent is sitting there?”

  “We’re not going to interrupt Larissa just so you aren’t inconvenienced,” Gabi said.

  “But it’s NICU policy,” the other insisted.

  “Let’s talk to Steve.” Angrily, they sought out Ringer, who was chatting in another part of the unit.

  When the two sides of the debate were laid out, Ringer thought about it.

  “If we encourage kangarooing, maybe we won’t have to replace those incubators,” Ringer joked, to defuse the tension. Then, taking a more serious tone: “It’s good for the babies, and all of us want to be more family-friendly, right?”

  There was general agreement.

  “Maybe we could do sign-out across the room,” Gabi suggested.

  “I suppose we could still watch the monitors from there,” the other nurse conceded.

  As the weeks went by, Kelly began to blend into the fabric of the NICU. She learned about the nurses’ children and met the parents of other babies. At times, nestled into the Barcalounger and covered with blankets to keep Larissa warm, she seemed to disappear to the NICU around her.

  One morning there was a new arrival: a little boy born at thirty weeks named Deshane. Later that day Deshane’s mother and father came to visit, carrying with them the complete bewilderment of new parents who were unprepared to be parents, let alone parents of a sick child in the NICU.

  The father, a thin man no more than nineteen, had an attitude,
although it seemed he was really just scared for his son. “Why does he need all those tubes?” he asked. “Why does he have those blue lights but none of the other babies have them?” The baby’s nurse explained that the lights helped prevent a dangerous buildup of bilirubin, a substance that caused brain damage if it became too concentrated. “Are you saying he’s going to be brain-damaged?” the young man asked.

  The mother, Ciarra, who Kelly later learned was seventeen, kept looking at her son and said nothing. She didn’t touch him, and when the nurse showed her how to open the incubator porthole and put her hand inside, she recoiled.

  The next day, Ciarra held her son, stiffly, and for only a few minutes. The father stood back, looking sullen, and didn’t say anything.

  Then they were gone.

  Two days later, Ciarra was back, wearing loose-fitting jeans. Now alone.

  From across the room, the nurses stared. Deshane’s nurse touched Ciarra’s arm in a kind gesture. The two of them conversed in low tones, and then the nurse helped Ciarra position herself in a chair and lifted Deshane out of the incubator so she could hold him. Tentatively, Ciarra held her son, smiling occasionally.

  Soon Ciarra developed her own routine. Every afternoon she arrived after school, lugging a heavy backpack. She’d take out a sheaf of paper or a small book and lay it on the side table. Then she would pick up her son and make them both comfortable in the chair.

  “How was school?” her nurse would ask.

  “All right,” she would say.

  One by one, or in pairs, the nurses would come to visit. They brought baby hats and clothing left by previous NICU graduates that they had taken home and washed. Signs and photographs adorned the incubator and the wall behind it.

  “He’s adorable.”

  “What a charming young man.”

  “You’re doing such a great job, Ciarra.”

  Before Ciarra left each afternoon, she would wave across the room to Kelly, a small, shy wave.