Fragile Beginnings

by Adam Wolfberg, MD

  “We should talk,” he would say to the parents of a child who was deteriorating, and he had a remarkable ability to connect with those parents and make them understand. Nurses loved that he could do that.

  But his research did not flourish. He struggled to put in the time in the lab, since he was drawn more to the bedsides of his babies than to his tubes and Western blots. Research papers, one of the key currencies of academic success, took forever to write. And his research mentor there, who had never been particularly attentive or predictable, went screaming out of the laboratory one day and never came back. Rumors circulated about a psychotic break.

  Feeling somewhat dispirited but extremely well trained, Ringer began to make plans to return to Cleveland. His clinical acumen and his exposure to cutting-edge research at Harvard made him attractive to the NICU in Cleveland where he had done his residency, and his research mentor from his years in Cleveland invited him back to the lab.

  Just months away from completing his training, Ringer wandered in to Michael Epstein’s office to let him know his plans. Epstein was the head of the Brigham NICU and was about to become the director of the Harvard Joint Program in Neonatology—a hard-charging doctor who, like Ringer, had a knack for threading intravenous lines into the tiniest of veins.

  Epstein too had aspired to a research career because that was what people said was the highest calling in medicine, but he’d found he didn’t like it very much and wasn’t particularly good at it. He had ridden his clinical skills and his capacity to manage people to a position of leadership in the nascent newborn-medicine community.

  Epstein had watched Ringer during his years in Boston and thought he saw something familiar. “I looked at Steve and saw myself,” Epstein recalled. “He was terrific clinically, and he was beloved by the residents, the medical students, and the nurses. He could teach at the bedside and take care of sick babies. And he had a sense of humor, which I believe is about ninety percent of success in life.”

  Ringer told Epstein he planned to return to Cleveland.

  “That’s great. Congratulations,” Epstein told him.

  “Well, thanks,” Ringer said.

  “You don’t seem very happy about this,” Epstein observed.

  “Well, actually, I’m not very happy. My research hasn’t been that successful. The people in Cleveland are supportive, but I’m not that confident that my research career is going to work out.”

  “Well,” said Epstein, “would you ever consider running a clinical unit?”

  Today, it would be unthinkable to take a young doctor straight out of a training program and put him in charge of the largest newborn intensive care unit in New England, but in 1988, the field was young, and hospital administrative structures were less formal. Ringer went from trainee to director overnight.

  Ringer remembered what he’d thought it would be like to run the NICU. “My impression was that Michael [Epstein] would come out of his office at one o’clock every day and walk around the unit,” Ringer said. “He would talk to the nurses, ask how things were going, and be gone by one ten or one fifteen. I thought to myself, What a deal. I’m going to work twenty minutes each day and be twice as good as him. I’ll sit in my office the rest of the time and read papers and get very smart. Of course it didn’t turn out that way.”

  The truth was that the NICU was in chaos. The nurses knew it, and the hospital’s administration knew it. And it became Ringer’s job to fix it.

  Sunday dawned gray and cold. I slowly awoke in the half-light, looked up from the cot where I’d slept to the hospital bed where Kelly dozed, and the awfulness rushed back. I felt the tightness return to my stomach.

  We made our way to the NICU and to the incubator where Larissa lay, just forty-eight hours old. There was less bustle around her now. The incubator had acquired a name tag, decorated with cute curly letters in a few colors, and a couple of photos of Larissa were taped to the wall near the bed. I pushed Kelly’s wheelchair closer to the incubator, and she opened the two portholes and stretched her hands inside to stroke Larissa’s silky thin hair.

  The air in the incubator was warm, and Larissa was dressed in a tiny white onesie. She was positioned on her side, supported at her back by a tiny wedge-shaped pillow. A warm cotton blanket covered her. The scene looked almost normal except for the rigid plastic tube that emerged from Larissa’s mouth and was taped in place at the sides of her head. The tube was connected to coiled plastic tubing that exited the incubator and arced down to the ventilator, which was emitting its whoosh-whoosh sound.

  “Mommy loves you,” Kelly said.

  Dr. Elisa came over, her manner almost relaxed.

  “She had a good night.”

  “That’s good.” Kelly smiled.

  “Her vent settings are pretty low. We might even be able to get her off that soon.”

  We stared at her.

  “And her blood count seems to have stabilized.”

  “That’s good?” Kelly ventured, looking at me.

  “She’s on antibiotics as a precaution, but she isn’t behaving like she is infected.”

  The three of us stared at Larissa through the Plexiglas as Kelly stroked her head.

  We gazed down at a gorgeous tiny child lying peacefully between clean cotton pillows and blankets. Save for the stark green translucent tube jutting from her mouth, Larissa looked fine.

  The problem was that we knew she wasn’t fine, that inside her head was a blood clot pushing aside fragile brain structures that now would never develop normally. It was like a clean shirt placed on a gunshot victim—the apparent tranquility was false.

  Elisa had retreated, and after a minute I followed her, leaving Kelly at Larissa’s side.

  “So,” I asked Elisa, “what decisions have to be made?”

  “I’m not sure what you mean.” Elisa looked genuinely puzzled.

  “For Larissa.”

  “I’m sorry.” Elisa was trying to understand me. “I’m not following you.”

  “Dr. Van Marter spoke to me about decisions that needed to be made if Larissa deteriorated.”

  “To be honest with you, I’m not sure there is much to decide,” Elisa said. “Larissa is really pretty stable. Sure, she’s on the ventilator, but I expect her to come off that pretty soon, and other than that, she’s getting the usual support: antibiotics, fluid, nutrition. I think Dr. Van Marter was talking about decisions that would have to be made if she got worse. To be honest with you, I think she looks pretty good,” Elisa finished. “Don’t you?”

  “But what about her bleed?” I asked. “She has a grade 4 IVH and a cerebellar hemorrhage. What will that mean? What kind of a life will she have?”

  “I’m not sure,” Elisa said. She smiled kindly but her tone had taken on a hint of steeliness. “We will ask a neurologist to come evaluate Larissa on Monday.

  “But for now I’m pretty sure there isn’t much to be done.” She wrapped up the conversation.

  I rejoined Kelly, who was now in pain, and we returned to her room so she could lie down and take a Percocet.

  After lunch, we heard the sounds of children in the hallway, and a moment later, Grace and Hannah burst into the room, Karen close behind.

  “Mommy! Mommy! Mommy!”

  Hannah in particular had to be restrained from climbing into the bed with Kelly, who steeled herself against the pain of her cesarean incision and smiled at her girls.

  “Where’s Larissa?” Hannah asked, not understanding why her sister wasn’t in the room.

  They checked out the motorized bed, the hospital-issue soap, and Kelly’s gown. Then they wanted to see Larissa, so Kelly climbed back into the wheelchair, and we took the elevator to the sixth floor.

  “What gorgeous girls,” the secretary said to Hannah and Grace while we were waiting for the okay to go into th
e NICU. “And what good sisters you are,” she said, pointing to the cards and drawings they had made for Larissa.

  Larissa’s nurse appeared, and we were cleared to enter the NICU. Kelly and I kept exchanging glances. What would the girls think? Would they be scared? Would they want to leave? What would we say if they asked about Larissa’s future?

  “Do you girls know how to wash your hands really well?” the nurse asked Hannah and Grace. They looked at her patiently and scrubbed their hands in the big sink.

  On our way through the NICU, we kept looking at the girls for signs that they were overwhelmed or scared by the beeping machines and the activity. But if they were anxious, their desire to meet their sister kept it in check, and they walked in single file after the nurse to Larissa’s bedside.

  “Oh, look, she’s so cute,” Grace said.

  “I can’t see,” Hannah complained. “Lift me up.

  “She is cute,” Hannah agreed after I picked her up so she could see inside the incubator.

  “Where did she get that cute outfit?” Grace wanted to know.

  “She got it here in the NICU,” the nurse explained.

  “Can we get her some clothes?” Hannah asked.

  “Can we touch her?” Grace asked. Carefully, one of the portholes in the incubator was opened, and the girls took turns touching Larissa’s foot.

  “She’s very soft,” Hannah noted. “Larissa, want to see the pictures we made for you?” Hannah asked when she was done.

  The girls taped their pictures up near Larissa’s incubator, looked at the photos, and admired Larissa’s name tag. Then they wanted a snack, so we headed out.

  “What’s the tube for?” Hannah wanted to know, almost as if it were an afterthought, as we started to leave the unit.

  “That helps her breathe, right, Mommy?” Grace said.

  A group of nurses stopped the girls.

  “Did you visit your brother or your sister today?” one of them asked Grace.

  “My sister Larissa,” Grace explained as we came up behind them. I pushed Kelly in her wheelchair.

  “She’s gorgeous, isn’t she,” another nurse said. “Just like the two of you.” She looked up at me.

  “You have a beautiful family,” the nurse said.

  We were headed for the Au Bon Pain in the lobby to have chocolate croissants and hot chocolate. A woman pushing a washing-machine-size ultrasound rolled past us, moving in the general direction of Larissa’s bed.

  “Baby Lowery?” I heard her ask.

  One of the staff pointed absentmindedly in Larissa’s direction.

  “The dad works here?” one of the nurses asked.

  “I heard he’s an OB intern,” another said.

  “Lord help us,” a third said. “A little knowledge is a dangerous thing.”

  “Hey, Elisa,” one of them said, roping Dr. Elisa, who was walking past, into the conversation. “Is it true the dad wants to take her home?”

  “Well, I don’t know about that,” Elisa said.

  “I heard he was asking you about his rights.”

  “I think he’s just concerned,” Elisa said. “Who wouldn’t be concerned?”

  “He’s got a picture-perfect family.”

  “Now, now,” Elisa scolded, and continued making rounds.

  Chapter 4. “The Degree of Impairment Is Difficult to Predict”

  On Monday, January 14, Larissa’s fourth day of life, Ringer came to work feeling rejuvenated. The holidays were behind him, and the weekend had been calm. It was bright and cold as Ringer walked up the shallow hill between the employee parking lot and the hospital. Once there, he took the elevator to the sixth floor.

  “Good morning,” he called to the receptionists who served as gatekeepers to the NICU. He rounded the corner and entered the unit’s administrative suite, greeted his secretary, and went into his office. By any standard, the office was a disaster. Papers and textbooks covered his desk, creating a layer at least two inches thick. A small table in the office had a pile of papers almost a foot high. Stacks of books filled two chairs, covered a file cabinet, and formed columns right outside the door, the result of a fruitless triage effort some months back. Ringer dumped his coat on top of the pile on the file cabinet and logged in on his computer to check his e-mail.

  “I need to talk to you,” Dr. Elisa said as she stuck her head in the door. She often had a tone of urgency in her voice, but today she sounded even more ruffled.

  “What’s up, Elisa?” Ringer asked.

  “Did you hear about that twenty-six-weeker born on Friday? The one whose father is an OB intern?”

  “Yeah, I heard something about that. How’s the baby?”

  “Not good. She has a unilateral grade 4 and a cerebellar bleed.”

  “Oh, shit.”

  “Yeah, but she’s stable.”

  “What’s the issue?”

  “The dad asked me if he could take her home.”

  “You mean right now?” Ringer asked incredulously.

  “No, not now,” Dr. Elisa clarified. “He wanted to know if he had that right.”

  “Ohhh.” Ringer exhaled slowly. “Got it. Thanks.”

  Dr. Elisa went back to the unit.

  By Monday morning, Kelly and I had some basic information: Larissa was holding her own in the NICU but had a significant brain injury. The existing scientific literature on the outcome of children with injuries like hers, as I had discovered in the library, was dismal: universal movement impairment and a very high likelihood of diminished intelligence and cognitive function.

  The problem with using medical literature to make predictions about an individual is that research studies describe the overall outcome of a large group of babies who are each unique. They might all have in common severe intraventricular hemorrhages and extreme prematurity, but some of the babies might also have had major infections that worsened their prognosis; others might have suffered respiratory injury; and still others might have had delayed growth during the pregnancy. The study described the average outcome—the median IQ score, the percentage of babies with severe motor impairment, the percentage of babies requiring a shunt to relieve high pressure in the brain—but a single baby is never the product of averages. Each baby is an individual, with a specific injury and a specific constellation of consequences of that injury.

  Further complicating the picture for Larissa was that the extent of her intraventricular hemorrhage was uncertain, and it was not clear if she had bled in her cerebellum or not.

  To better understand the extent of her injury, the doctors ordered a magnetic resonance imaging (MRI) study, which would be followed by a consultation with specialists in newborn brain injury.

  Later that morning, two nurses freed the IV poles that supported Larissa’s medications, intravenous fluid, and nutrition infusions, disconnected the oxygen tank from the wall, and bundled up her expanding medical chart. Then they headed out of the NICU with Larissa, one pushing the incubator, the other guiding the IV poles so they wouldn’t stretch the tubes that fed through apertures into the incubator. Three floors below the NICU, they turned onto a bridge that crossed the narrow driveway separating Brigham and Women’s from Children’s Hospital Boston, and then they turned left down a ramp to get to the radiology department.

  An older child needs to be sedated so he doesn’t move during the thirty-to-forty-five-minute MRI exam, but a baby can usually be packed into the narrow MRI bed with sandbags surrounding his head to hold him still. During the scan, magnetic fields and radio waves jiggle protons in skin, bone, and blood, creating a stream of faint radio waves that paint extremely detailed pictures of brain tissue, the cerebrospinal spinal fluid that cushions the brain, and any blood that has escaped the vessels that are supposed to contain it.

  During the nine
months of gestation, the brain evolves from a ridge of cells into the most complex of human organs, but over this period, anatomic weaknesses related to the process of development leave the brain susceptible to injury.

  The neural tube develops early in the second month of pregnancy; it bends and differentiates and then spreads to the sides. The results are the building blocks of the brain. The forebrain will form the cortex, the home of movement, thought, and the characteristics that distinguish us as human beings; the midbrain will become part of the brain stem, that primitive and hardy central stalk of the brain that connects to the spinal cord and controls basic and critical functions including breathing, heart rate, and temperature control. The hindbrain will go on to form the cerebellum, the sea-urchin-shaped structure at the back of the brain that coordinates movement and thought.

  As the cortex develops, it pouches out to the sides and wraps around the ventricular system, which will produce and contain cerebrospinal fluid. The lateral ventricles, the third and fourth ventricle, and the subdural space form a circulation system for this clear fluid that bathes and cushions the brain and spinal cord, protecting it from injury. Through a sequence of foramina, or passages, fluid flows between the ventricles and around the brain and spinal cord.

  Central to the cortex, enveloping the ventricles, are the precursor cells of white matter, the insulating cells that protect neurons—like rubber coating on a copper wire—and speed communication in the form of action potentials between one cell and another. Layered on top of these cells is the gray matter, the neurons that will form connections of enormous complexity.