Fragile Beginnings

by Adam Wolfberg, MD

  Larissa was growing now, gaining approximately half a pound each week. Gabi taught us how to bathe her, first in a tiny basin and then in a larger container when she outgrew that. One morning Kelly came in and Larissa was drinking from a bottle. When Larissa was able to take all of her formula that way, the tube that snaked into her stomach was taken out and, except for the wires that monitored her heart rate and breathing, she finally looked normal.

  The feeding process was involved—the eating was slow, and then Larissa had to be held upright for an hour to reduce the chance that she would vomit up the formula—but it was one more thing that Kelly could do for her daughter during the hours she spent in the NICU each day.

  “They look fabulous. When can we take them home?” Fred Bobo said. His wife had delivered twins at twenty-nine weeks, and they were now all of four days old.

  “Oh, Fred,” Mary said. “They look just like you.” She bent in to open an incubator.

  Their nurse came running over. “Hold on a second, dear. I know you want to hold them, but they aren’t really ready for that yet.” One of the twins was still receiving breathing support.

  From her chair fifteen feet away, Kelly watched the enthusiastic parents.

  “Can we take that tubing off for a photo?” Fred asked, gesturing toward the breathing apparatus.

  “Not just now,” the twins’ nurse said patiently.

  A small throng of nurses gathered across the room and laughed at their colleague’s situation.

  For a few days, the parents didn’t come into the NICU. But the next Saturday, they showed up with at least six others—two older siblings, grandparents, and a couple of friends—whom they had brought to meet their babies. The twins’ older brother, who was about five, had a red nose that was running badly. The older sister, about three, dragged a dirty blanket behind her. The grandfather reeked of cigarettes.

  They crowded around the incubators, popped open the portholes, and stuck their hands inside to touch the twins. The sister started to push her blanket through the porthole.

  “That is so sweet, Martha,” Mary Bobo said. “Are you loaning your new sister your blanket?”

  “Maybe they should wash that filthy thing first,” Larissa’s nurse muttered under her breath.

  Mary noticed Kelly and came over to chat. “How old is your baby?”

  “She’s seven weeks old,” Kelly said politely.

  “Does she have any problems?”

  Larissa’s nurse came to the rescue. “Ma’am, I’m sorry, but I have to ask you to respect this mother’s privacy.”

  “Okay,” Mary responded good-naturedly. “I was just being friendly.” She returned to her family.

  The group finished admiring the twins and got ready to leave.

  “Now give your new brother and sister big kisses,” Fred told his older children.

  The little boy with the runny nose reached in for his brother’s hand and gave it a slobbery kiss. Then he wiped his nose with his hand. Across the room the scrum of nurses cringed.

  The family thanked the nurses loudly and enthusiastically for taking such good care of their children.

  “Those kids are going to need a lot of luck,” one of the nurses said when the mob was gone, “with parents like those.”

  “Oh, Louise, they’re sweet,” another said.

  “They are,” Louise said, “but they are awfully stupid.”

  “It’s true. I’m going to pray for those babies once they go home.”

  April arrived, and Larissa’s weight had doubled; she was now nearly five pounds. There was talk of sending her home.

  But there were several hurdles—determined by Ringer and his group—she had to overcome. She spent an hour in a car seat on the NICU floor with an oxygen sensor attached to her foot to make sure that she could safely ride in a car and maintain her oxygen saturation in a reclined position. Even with the harness straps as tight as they could be, the car seat still seemed big for her, but the NICU staff assured us it was safe.

  Appointments were made with Larissa’s pediatrician and with the special follow-up clinic for premature newborns who had spent their first weeks at one of the three Joint Program in Neonatology NICUs. Although each was autonomous, the units still collaborated closely on numerous topics. We also made an appointment for her to see the ophthalmologist in six months so he could check on Larissa’s very mild retinopathy of prematurity. She would not fall through the cracks like the children Ringer had heard about at the Perkins School for the Blind.

  Then, on the eve of her discharge, Larissa had a spell: she momentarily stopped breathing. The discharge was canceled, and Kelly and I left the NICU in tears.

  But a week later, we packed up the basin, the photos, the cards, and the small plastic chest of drawers we’d gotten for her clothes, put Larissa in a warm suit, and placed her in her car seat.

  Seventy-one days after her precipitous delivery, Kelly carried Larissa out of the NICU and down the elevator while I pushed a cart with all of her stuff on it.

  Inside the main entrance to the hospital, I left Kelly with Larissa and her stuff and went to get the car. Kelly was bundled in a winter coat to ward off the unseasonably cool spring weather.

  While she was waiting, an orderly passed her pushing a woman in a wheelchair who was smiling at the two-day-old baby in her lap. Her husband pushed a cart like mine, but his was laden down with flowers and cards of congratulations.

  The woman looked up at my wife and daughter and recognized there was something incongruous about them and their paraphernalia, so different from her own. She smiled but didn’t say anything. Kelly forced a tight smile, and then looked away.

  Chapter 10. Gains of Function

  Many times each day during Larissa’s first summer, Kelly would position Larissa on her back on a blanket spread across the living room rug. She would smile down at Larissa and then shake a brightly colored rattle just out of reach off to one side. Naturally, Larissa would turn her head and smile at the rattle and reach her little hand toward it.

  “Look at that, Larissa,” Kelly would coo. “Good girl.”

  Larissa was equally interested in the rattle whether it was shaken to her left or to her right, and she would quickly turn her head either way.

  It was clear, however, that her reach was more purposeful, more coordinated, when the rattle was on her left. This was a subtle early sign of a right-side disability. What was unclear was how significant this disability would be.

  Undeterred, Kelly would push Larissa’s bottom to tip her so her whole body faced the rattle. Then she would bend the top leg at the knee so the knee faced the toy, bringing the weight of that leg across toward the rattle. Invariably, Larissa’s top hand now reached toward the rattle, and she would tip over onto her stomach. Kelly would give that hand the rattle. “Great job, Larissa,” she would congratulate her.

  At first the sudden shift onto her stomach would startle Larissa, but the negative sensation of tipping was tempered by the success of having the rattle in her hand. A few minutes later, they would do it again.

  Soon, Larissa was throwing her hand over her body toward the rattle. But that alone was insufficient to get the toy. Next, she would bend her knee, but since she was lying on her back, that motion served no purpose. Kelly would gently encourage the motions, always offering support and putting the rattle in Larissa’s hand at the end.

  One day, five months after she came home from Brigham and Women’s, Larissa simultaneously turned her head toward the bright shaking rattle, bent her knee, and threw her arm. Suddenly she was on her side. She lunged with her hand, now closer to the rattle, tipped onto her front, and got the rattle. She shook it and then stuck it in her mouth.

  Kelly cheered, and tears welled up. Larissa had rolled over.

  It was August, which meant that
Larissa was nearly eight months old. However, until premature babies reach the age of two, pediatricians evaluate their development in terms of corrected age, meaning the age the baby would have been if he or she had been full-term. Though she was almost eight months old, her corrected age was five months, which meant that Larissa had rolled over on schedule. But to accomplish that task she’d required the kind of coaching and methodical practice that most parents of full-term babies didn’t have to think about. With the help of Susan Lynch, a gifted Early Intervention specialist whom Kelly hired to help tag-team Larissa’s early development, Kelly plotted how to make sure Larissa developed the skills most parents take for granted in their children.

  Leveraging the exuberant neuroplasticity of childhood is a very mainstream concept. Online merchants now sell special speaker systems that expectant parents can use to play Mozart to their babies in utero, the theory being that exposure to the music can influence the development of neurons even before birth. A successful maker of toys for babies and children calls itself Baby Einstein; the implication is that use of the toys will make babies smarter.

  One of the most fascinating recent trends is the practice of teaching babies to sign. The idea is that babies are capable of communicating before the muscles that produce speech can generate words. By signing, babies are empowered to communicate sooner, engage with the world around them sooner, and maybe become smarter. (One dad I know observed that by unleashing communication, his daughter was also able to berate him sooner, signing, Juice, juice, juice, juice, juice until the cup was produced.)

  These products and services are big business—there is even a company that bills itself as the Baby Sign Language University—but there isn’t a lot of evidence that kids exposed to these products and services become brighter, more capable children or adults.

  I remember Hannah learning to walk, scooting around the dining room table, holding on to chairs. I remember those first tentative steps and her consternation when she fell down on her bottom. I know she rolled over, sat up, and met all of her developmental milestones in approximately the right order and at approximately the right times. But I have no memory at all of the first time she rolled over, let alone how she did it. Most parents remember their children’s first steps and probably know these are supposed to take place around the time of the first birthday. But unless the pediatrician turns and says, “You know, little Johnny isn’t developing as expected,” parents love and praise their kids and play with them, and development just happens.

  When Kelly and I gazed down at Larissa lying on a blanket or asleep in her crib, we knew there would be no “development just happens” part. The neurologists had made a specific prediction: there was certain to be movement impairment on her right side. There was also a 50 percent chance of cognitive impairment. What this impairment would look like was entirely uncertain. Would her right hand be affected? Her right leg? Both? Would she have learning disabilities? Autism? Language impairment, or severe intellectual deficiencies? We could not reasonably expect her to be normal; the only question was what the impairment would be.

  The answer to these questions depended entirely on neuroplasticity. Larissa had a brain injury, and so the work of the destroyed neurons and insulating cells would be taken up by other areas of her brain or it would not get done.

  Neuroplasticity is more than a concept for children who have cerebral palsy—a host of studies demonstrates that healthy brain cells take up the work of damaged brain cells. There isn’t any published evidence showing that motivated parents can coax extra neuroplasticity out of their child’s uninjured brain cells, but what other option did we have? If there was a window of neuroplasticity—or at least a window of optimal neuroplasticity—then we had to race to take advantage of it before it closed.

  We looked at the littlest things: Which thumb did Larissa suck more? When she first lay on her back and waved her arms around, did she wave one more than the other? (It was a silly question, since many baby movements are reflexes that have no input from the cerebral cortex and so don’t reflect injury to those cells.)

  And we wondered about her cognitive capacity. When she first started looking at us, was that a good sign? When she smiled, was that an indication of intelligence? Most of all, we waited for speech.

  The newness of being home wore off, and a routine set in. I was back at work at the hospital. Grace and Hannah were back at school. Kelly was at home, often alone, with this special baby who slept, cried, and pooped like other babies. Like all moms of babies, Kelly was exhausted. Compounding the problem was that Larissa had to be fed, burped, and then held upright for an hour so she wouldn’t spit up her meal. Feeding was slow, and in the middle of the night, the hour Kelly spent sitting with Larissa upright on her chest was interminable. Then Larissa might sleep for just a little while before it was time to begin the process all over again. Kelly felt like she lived in dreamlike state of sleep-deprived delirium.

  Not long after Larissa came home from the NICU, I had a week’s vacation, and I took a turn doing the night duty. Kelly slept through the night for the first time in weeks. The next morning she came downstairs and looked around, smiling.

  “I feel completely different,” she said.

  “How so?”

  “It’s like I can think clearly. And see clearly. My head is clear, and I don’t have a low-grade headache. I think I was so tired I had lost perspective on what it’s like to feel normal.”

  One night in May I came into the house ecstatic about a surgical procedure I had learned that day.

  “I did my first hysterectomy today,” I announced proudly.

  “That’s great,” Kelly said, without a lot of enthusiasm.

  “One of the attendings typically takes the intern through the case, and today he asked me to scrub in. It was amazing.”

  “Hannah and Grace are asleep, but do you want to see Larissa? I’m going to take a bath. I haven’t had a chance today. Now that you’re home, I think I’ll go do that, if that’s okay with you.”

  “Is everything okay?”

  “No, it’s not. You get to go and do your hysterectomy and talk to people and chat and laugh, and your career goes on. You’re focused on your hysterectomy, while I’m focused on our daughter’s development. I’m stuck here in the house with no one to talk to because Larissa can’t go outside yet, and I’m alone in my concern because you’ve moved on. No, it’s not okay.”

  “I see what you mean.”

  “No, you don’t. You don’t see what I mean.” She stormed upstairs.

  I picked up Larissa, who was smiling in her bouncy seat. I decided to tell her about the hysterectomy. “So we took the round ligaments, and it was amazing—as we dissected into the broad ligament there was practically no blood. Then we took the infundibulopelvic ligaments, clamped them, and tied. Again, no blood.”

  Kelly returned briefly. “It’s great that you are excited about your surgery. But I spend day and night with our child. I play with her. I sing to her. I talk to her. And I’m constantly wondering—all the time—what’s going to happen, and what I can do to make it right. And you get to think about your surgery. It’s not fair.” She went off to take a bath.

  The next week, Larissa went to see her pediatrician, who was pleased to report that Larissa had gained weight and was generally doing well. She told Kelly that she thought it would be okay if Larissa left the house, although she shouldn’t be around other children, as they were likely to spread infections.

  My cell phone rang. “Larissa can go out,” Kelly said. “I made a reservation at Legal Sea Foods. We’re going out to dinner. And I’m going to have a glass of wine.”

  We met at the restaurant. Larissa was dressed in one of the outfits we had been given as a baby gift. Grace and Hannah had Shirley Temples; Hannah’s came in a plastic cup with a lid. Kelly had a glass of Shiraz. Around us people paid little attention
to our family except to make occasional comments about how cute our baby was.

  “She’s adorable,” an older woman said. “She’s awfully small to be out and about. How old is she?” she asked about our nearly six-month-old baby.

  “She’s two months old,” I lied, lacking the energy to explain the truth to this kind stranger.

  “Well, she’s very sweet. Congratulations.”

  “Thank you,” I said.

  We didn’t wait for Larissa to reach milestones; we actively pushed her toward them, like cheerleaders and coaches for her functioning neurons. We were always looking critically at where we were and constantly scanning for delay or failures. Kelly, Susan, and I (to be fair, mostly Kelly and Susan) read articles by physical therapists who worked with disabled children, and we learned how to break down complex motions into their component parts. Then we taught Larissa, one step at a time.

  When she could sit, we worked on crawling. At first, Kelly spread out a sheet on the living room carpet and placed a prized toy a few feet away. Larissa’s response was to grab the sheet and pull it toward her, moving the toy to within reach. Kelly and Susan laughed at her ingenuity, but they also noticed that Larissa was using her left hand to do most of the pulling; her right hand merely assisted. Nevertheless, they exchanged the sheet for a mat that Larissa couldn’t move.

  Breaking down crawling into its component parts, we supported Larissa while she balanced on her hands and knees, rocking back and forth, and then helped her to move first her right hand, then her right knee, next her left hand, and finally her left knee.

  “Go, Larissa.”

  “You can do it, Larissa.” We would shake the rattle from across the mat, and Larissa would look up and croon.

  There was trial and error, of course, but this was directed trial and error. By about nine months of age, Larissa was crawling.

  The months flew by, and Kelly’s and Larissa’s routine came to include visits with an expanding list of physicians and therapists to help with fine and gross motor skills. Because of her prematurity, Larissa was entitled to the City of Newton’s Early Intervention Program services, so twice a week an occupational therapist came to our house and worked with Larissa on fine-motor tasks and taught Kelly about appropriate games and exercises so she could work with Larissa the rest of the time.