Little Things that Count

      Megan was born 3 1/2 months prematurely, weighing 1 3/4 pounds. Her mother, Dana, and father, Barry, had been married for 2 years, and they had planned the pregnancy. Dana was 22 years old. She had worked as a secretary, but had planned to stay home after the birth of their first child. Barry, was 25 years old. He worked as a telephone repairman and had been recently promoted to supervisor. Dana sought early and continuous prenatal care and had experienced a normal pregnancy until her membranes ruptured unexpectedly while she was at work. She was rushed to the hospital and found to be in early labor. Dana's cervix was fully dilated and her labor could not be stopped. Megan was delivered that day.

      Megan cried immediately, but, because her respiratory efforts were feeble, she was promptly resuscitated by the neonatology team, who had arrived in the delivery room only moments before she did. Megan's Apgar scores were 3 at 1 minute and 6 at 5 minutes. Her parents saw a flurry of activity around their tiny, blue baby as she was taken from the delivery room to the NICU.

A Fight for Life

      To Dana and Barry, it seemed like an eternity between Megan's birth and the call from the NICU nurse, who said that Megan was ready for them to visit. In fact, it was about 6 hours after Megan's birth when Barry wheeled Dana down the corridor from the maternity hall to the NICU. When they arrived, Dana and Barry felt they had entered a different world. Plate glass windows separated a spacious nurses' station from dimly-lit rooms filled with small, high, warming tables and quilt-draped incubators, all obscured by a bewildering variety of medical equipment. As Dana and Barry tried to orient themselves, they were greeted by the charge nurse, who showed them how to wash their hands properly before they visited Megan. The nurse caring for Megan then helped Barry navigate the wheelchair through the heavy glass door and into the six-bed NICU room where Megan lay.

      Dana sobbed as she absorbed the sight of her baby daughter attached to a respirator, with the endotracheal tube tape obscuring most of her wizened, red face. Intravenous fluids were connected to a tube which was sewn into her navel, and another tube disappeared into a large board on her left foot. Numerous heart rate and respiratory monitors were attached to her small body. The nurse heard Dana murmur to her husband that Megan didn't look like a baby and, indeed, the lack of body fat and the limbs smaller than her father's fingers bore no resemblance to a typical full-term infant, who would weigh four times Megan's weight.

      Barry and Dana were too overwhelmed to focus on the environment surrounding their child, but they later learn that the dim lights in the room, the closed blinds, and the hushed staff voices were part of a conscious effort to support Megan's efforts to rest and conserve energy. They did notice that, rather than lying on her back as they had expected, she was placed on her side with her tiny limbs gently flexed on a fluffy sheepskin pad that had been built up on all four sides so that she looked as if she were cradled in a white nest. Both Barry and Dana felt frozen at first, longing to reach out to Megan but feeling that she would be injured by the slightest touch. Noting their anxiety, the nurse gently guided their hands to surround and hold Megan's hands and feet. Megan startled at their first touch, but soon relaxed as Dana's hands touched her fingertips and then gradually moved to allow her tiny fingers to curl around one of her mother's fingers.

      During the next week, the family experienced more stresses as Megan's condition worsened. The rate of her ventilator had to be increased so that it would effectively breathe for her. She received blood transfusions to keep her blood pressure normal and to provide the red blood cells needed to carry oxygen to her body tissues. On the seventh day of Megan's life, a picture was taken of her brain with a portable ultrasound machine. The pediatric resident found Dana, who was leaving the lactation room after pumping her breast milk, and told her that the ultrasound had shown bleeding within the ventricles on both sides of Megan's brain. Terrified, Dana paged Barry on his telephone company beeper. He left his job, to which he had just returned the day before, and 2 hours later the couple sat in the office of the attending neonatologist. Dana and Barry struggled to comprehend the doctor's explanation--that the bleeding, an intraventricular hemorrhage, could stabilize, improve, or worsen. The bleeding could lead to hydrocephalus, which might need to be surgically drained with a shunt, or it could represent the early stages of periventricular leukomalacia, which is the scarring seen after the death of cells in the white matter of the brain. The next day, Dana began to cry while she was talking with Megan's nurse. Barry had told her the night before that he couldn't deal with raising a child with a disability. Dana told the nurse that, regardless of how Barry felt about it, nothing in the world would keep her from taking care of her baby.

      The developmental team observed this family from a distance, as the family was receiving much support from Megan's nurses and the unit social worker. The primary nurses were skilled in developmental care and shared with nurses from other shifts their observations about Megan's need for a quiet environment, nested positioning, and extremely gentle handling. The nurses asked me, the team psychologist, to be aware of this family's needs and to begin work with them. Early in Megan's third week, I found Dana in the parents' room. She was waiting for nursing report to end so she could visit her baby. I introduced myself and we began to chat. Dana told me how terrified she had been for the last 2 weeks, but that she was encouraged by the lowered ventilator settings achieved in the last several days. I wondered how Barry, who was now visiting regularly in the evening, was doing. Dana volunteered that, although Barry had initially felt he couldn't deal with a child with a disability, he recently told her that together they would cope with whatever the future held. Dana sadly noted that it was a good thing because the second ultrasound had just been completed and it indicated that Megan's ventricles were continuing to enlarge. I asked Dana what she thought had changed Barry's feelings. Dana said simply, "She's his baby now."

Homeward Bound

      Megan won her fight for life. She was able to breathe more on her own and was weaned off the ventilator. Her oxygen requirement also gradually diminished. She was first placed under an oxygen hood and then weaned to a nasal cannula. At 35 weeks gestation, she was breathing room air. After many setbacks with tube feedings, she began to feed from a bottle and finally was able to breastfeed when her mother visited. Even so, Megan's ventricles continued to increase in size until they stabilized at a level just below the point at which the neonatologists would recommend a shunt. The words brain damage were used more than once. The physicians and I offered to talk with Dana and Barry about Megan's future development, but they preferred that we address their questions about more immediate concerns such as Megan's nursing care or possible discharge dates.

      As Megan approached 37 weeks, postconceptional age, a discharge date was set. Her parents were clearly attached to her and spent many hours in the NICU. Dana had patiently worked with the unit's lactation consultant, and breastfeeding was going well. Serial ultrasounds, however, continued to show progressive hydrocephalus.

      Although Dana and Barry rarely discussed Megan's prognosis, I sensed their anxiety during their regular evening visits with their daughter. Megan tended to be a quiet infant who slept peacefully in her open bassinet and who cuddled with her parents. According to the nurses, however, Megan demonstrated few awake or alert periods. Her parents interacted sensitively and protectively with her, but with timidity.

      Until Megan's discharge date was set, the developmental team had only limited interactions with the family because of their evening visiting pattern. One week before discharge, the medical and developmental team decided to address Megan's developmental and behavioral capacities. The first step toward dealing with these issues was to administer an Assessment of Preterm Infant Behavior (APIB), which would be helpful in both assessing Megan's abilities and providing direction for intervention strategies. The APIB, an extension and modification of the Brazelton Neonatal Behavioral Assessment Scale, is designed especially for preterm infants. It provides a detailed scoring system reflecting the infant's organization with regard to the autonomic, motor, and state subsystems of behavior.

      I suggested that Dana and Barry observe while the APIB was performed. I hoped their attendance would accomplish several goals. First, we could highlight and clarify for Megan's parents her organizational competencies and strengths, as well as facilitate a discussion of realistic concerns about her future development. Second, the APIB would provide a framework for encouraging Dana and Barry to feel confident in their ability to care for Megan. This was especially important in light of her imminent discharge. Third, scoring the APIB would provide the team with data about Megan's neurobehavioral functioning at discharge, a baseline from which to monitor and track her progress during the coming months.

      When I talked with Dana about the exam over the telephone, she was enthusiastic and readily agreed to come to the nursery to participate. Dana also explained that Barry would not be able to come because he had signed up for extra shifts at work so he could take time off when Megan came home. Dana and I tried to think of a way for Barry to participate, but were unsuccessful. In light of the little time available, we decided to go ahead with just Dana. Although it was a less than perfect solution, Dana seemed satisfied with the decision.

      Janet, the physical therapist, and I decided to work together in conducting Megan's APIB. Because I was certified in the use of the APIB, I would conduct the actual exam and scoring. Janet would observe and pay particular attention to Megan's motor functioning since she was high risk for developing motor problems. Janet would also be there to support Dana and attend to her reactions and concerns.

A Show of Strength

      Megan was being fed on a flexible 4-hour schedule, usually eating at around 6 A.M. and 10 A.M., so Dana met with Janet and me at 8:30 the next morning. I gave Dana a brief introduction to the APIB, explaining that we would be able to learn how Megan organized input from her environment and what kind of help she needed to organize herself most effectively. With the approval of her nurse, Megan's monitors were disconnected and her bassinet was wheeled into the isolation room adjoining the intermediate care nursery. Baseline observations revealed a pale, delicate appearing, infant swaddled cozily in a blanket and snuggled into a sheepskin nest. She was lying on her tummy with with her hands tucked under her chin. We commented on how pretty Megan was and how quietly and comfortably she was sleeping.

      When I proceeded to shine a flashlight over Megan's closed eyes, she responded with a startle the first few times but, with repetition, her startle gradually decreased in intensity. Even so, she never shut out the stimulus altogether. Dana commented with pleasure about how Megan noticed the light even with her eyes closed. I agreed and added that, although Megan couldn't ignore the light completely, her ability to respond more calmly over the 10 administrations showed that she was learning about her environment. She was learning what was significant and what was "old news." Megan's responses were similar when the rattle was presented 10 times. Megan had already passed her hearing screening, but again Dana expressed pleasure that she so clearly responded to the sound.

      When Megan was gently uncovered and placed on her back, she responded with increased and poorly organized motor activity. She showed marked hyperextension of her legs. All three observers commented that she seemed to be asking for help in containing her limbs and Dana remarked that she knew Megan hated being on her back. I gently cupped my hands around Megan's feet and we discussed alternative approaches to diapering. Throughout such discussions, Janet and I were careful to avoid offering pronouncements about how Dana and Barry should do things. Instead, we asked for Dana's opinions and ideas, based on both her current and past observations of Megan, and we supported and validated her wisdom.

      The exam progressed through the assessment of more distal reflexes, such as foot and hand grasp, Babinski, clonus, resistance and recoil of arms and legs, and so forth. Dana was pleased by the normalcy of many of these responses. Megan's lack of resistance to extension, especially in her legs, and the strong hyperextension that she maintained when her legs were released concerned us. Janet described this finding as stiffness, and we decided to monitor Megan's reflexes and muscle tone during clinic visits so that we could provide any help she might need in this area. No specific interventions were recommended at that moment, but Janet made a mental note to assess leg extensor tone during future visits. Dana already demonstrated her understanding that Megan needed support through blanket swaddling or caregivers' hands to maintain flexion, and the focus of this exam was on competencies and confidence building. The goal for Megan and her parents in the coming days would be a smooth and happy transition to home, without the anxiety of instituting a new exercise program immediately.

      As the exam moved to more active handling we noted that, despite mild autonomic reactivity (i.e., increased "webbing" of Megan's color), she was making efforts to wake up and become alert. As I prepared to pull Megan to sitting, I explained what I was about to do. Janet noticed Dana cringe and squeezed her shoulder as she assured her that Megan would be all right. To everyone's delight, Megan's eyes opened and brightened and she made a clear effort to use her shoulder and neck muscles to lift her head for several seconds after she was seated. Dana gasped with excitement and said, "I never dreamed she could do that. She's so much stronger than I thought. Wait until I tell her daddy!"

      The tension I had previously sensed among the three of us subsided. The next portion of the exam proceeded smoothly with continued signs of lower body extensor tone, but Megan seemed to gain, rather than lose, energy. I made a special effort to prepare Dana for the spin maneuver and elicitation of the Moro reflex, but she was much more relaxed and teased me about not getting dizzy as I slowly spun Megan. Dana then interpreted Megan's robust response to the Moro with pride as Janet pointed out how Megan had a clear signal to tell us when she felt loss of support.

      At this point, Megan's alertness was peaking. I moved to a rocker, with Dana seated next to us, and began to assess Megan's ability to orient. Megan followed my face and voice with shiny-eyed alertness as I quietly talked to her, and she focused on my face when I was quiet. To assess her ability to locate voice, Janet coached Dana to call Megan from both her left and right sides, whereupon Megan searched and located the source of her mother's voice.

      Megan began to tire somewhat and her gaze dulled slightly as a chiming apple was presented. Her efforts to follow the apple, as well as several occasions when she averted her gaze, could be seen in light of her efforts to both receive and regulate visual input. During this period, Dana asked with her voice trembling, "This means my baby can see, doesn't it?" 

      Upon completion, all four of the test participants were fatigued, and the adults felt satisfied. After Megan was settled in the nursery, I made some notes while Dana went out to the parents' lounge. When I rejoined her a few minutes later to provide some closure on what had transpired, I found Dana talking to another parent whose extremely low birthweight infant had received a similar assessment the previous week. I heard Dana joyfully describe how Megan became wide awake and how she moved her head around to see what was happening. I asked Dana what that meant to her, as Megan's mother. She explained that, for her, it meant Megan would eat, cuddle, and sleep. She went on to say that Megan had never wakened up so much and never followed her face like she had followed mine today. I suggested that perhaps Megan had not been called upon to engage in such behavior before and that she might have been responding differently because I was a stranger who aroused her curiosity. In contrast, Dana and Barry were more familiar to Megan and, thereby, served as signals for comfort, cuddling, food, and relaxed loving. This interpretation seemed to please Dana, and she beamed as she reviewed what Megan could do. Perhaps her most telling comment was "She's seemed so fragile... so sick. Now I realize she's stronger than I thought. She's growing up! I'll still worry a little, because I know she could have brain damage, but now I feel ready to take her home."

      As Dana reviewed how she would describe the exam to Barry, she said that he had commented before leaving for work, "I hope she passes her test."  Dana had told him that she didn't think it was a test you could pass or fail, but thought that she would now tell him that Megan did indeed pass. "I never dreamed she could do so much," concluded Dana. "The way she could get her head up... the way she could turn her head so she could breathe. Well, there's just so much she can do!"

This case story originally appeared in McWilliam, P.J., & Bailey, D., (Eds.). Working Together with Children & Families, Case Studies in Early Intervention. (1993). Baltimore: Paul H. Brookes Publishing Co.

Little Things that Count
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