This story supplements Exceptional Children and Youth 3/e by Nancy Hunt and Kathleen Marshall.
In The Story of Lucy and Nell, Nancy Hunt recounts her own experiences during the birth, care, and early development of her low-birthweight twins-born at 1 pound, 14 ounces, and 1 pound, 11 ounces. It can be read on many levels: It is an intensely personal and human account; yet it can also play a strong role in teaching about individuals who are exceptional. Its content relates directly to the main text's Chapter 2, "Risk Factors and Early Intervention." Together, The Story of Lucy and Nell and the main text provide a powerful learning experience for you.

The author would like to thank Jeffrey Pomerance, M.D., for his careful reading and helpful comments regarding this case study.

the story of lucy and nell

     I had worked in special education for twenty years and considered myself a seasoned professional when I gave birth to my premature twin daughters in June 1989. This very harrowing personal event shook my sense of professional identity. I learned to my surprise how much I still had to learn, and that even what I knew could cause as much anguish as comfort. My professional expertise proved to be a mixed blessing.
     I started out as a child-care worker in a school for the deaf during college, earned a master's degree, taught deaf children for nine years, went back for a doctorate, and have since been a university faculty member in a large department of special education. My graduate training included practice conducting assessments with infants and toddlers in the Neonatal Follow-Up Clinic at Children's Hospital of Los Angeles, as well as a specialization in developmental and educational psychology. In fact, my dissertation centered on long-term follow-up of low-birthweight infants in Denmark. I was supposed to be an expert. Then along came real life, and events that caused me to question the knowledge and assumptions I had accumulated during my twenty years of professional experience. I found that my "expertise" did not make my personal experiences easier to handle-in many ways, it added to my problems.
     I was just 25 5/7ths weeks pregnant when my twin girls were born-fourteen weeks early. This was my third pregnancy. In my second pregnancy, the placenta had detached prematurely, which may or may not have led to the early delivery of my twins. It couldn't have been their weight that did it-Lucy, the firstborn via a vaginal delivery, weighed 1 pound, 14 ounces, and Nell, delivered by a caesarean section, weighed 1 pound, 11 ounces. Together they were considerably lighter than most singleton newborns. They were each about thirteen inches long and, even to their mother's eyes, shockingly scrawny. My husband, Dewey, and I saw each daughter for literally seconds before they were whisked away by teams of specialists to the hospital's neonatal intensive care unit (NICU).
     That evening a doctor acquaintance visited my room and, addressing me from the foot of the bed, said, "So what do they have, about a 50-50 chance?" That was the first time I'd heard those odds, but Dewey and I knew that their survival was far from certain. Although we had a healthy and beautiful 6-year-old, our second daughter, victim of the detached placenta, had died at birth. Thoughts of Katie's death had never been far from my mind since then, and that experience changed my life profoundly. Dewey and I understood that terrible things can happen and felt very vulnerable. Denial was not a refuge for us.
     For days, each time a neonatologist approached us, it was with a worried, serious face. I was usually at the side of an incubator, where I sat trying to get to know one bird-like baby or the other, whose face was hidden under a mask, machinery, and tape, and whose body was held down by six or seven wires and tubes. I tried to keep my face averted from the nurses, since it was usually red and tear-stained. If our babies were going to die, I wanted to know them first.
     And who were they? Well, they were both "fighters." But I am not a great believer in the continuity of infant temperament; I think that every premature infant, whether or not she survives, is considered a fighter. In my mind, their ability to resist handling, treatments, and illness is probably due more to their physical strength and genetic inheritance than anything else. However, one does come to admire these frail little humans for simply carrying on under such unpleasant, painful conditions. The amount of handling, the number of needles, catheters, x-rays, sonograms, and transfusions they received would exhaust the hardiest adult. Through those precarious first days, our tiny girls, with a combination of good care and good luck, persisted. But not uneventfully. "A baby's course in the NICU is like a roller coaster ride," one doctor told us. "You will experience great ups and downs." The first part of the roller coaster was down. Both tiny babies lost a lot of their birthweight and became truly minuscule. This was a normal but terrifying development in babies so small to start with.
     Premature babies are subject to a multitude of medical complications, and between Lucy and Nell we experienced many of them. From the beginning, Lucy, the first and larger twin, was relatively stable in her course; Nell, the second, traveled a rockier road. Lucy's reaction to her new life consisted mostly of sleep. The nurses reassured us that this was good; she was reserving her strength, and allowing her calories to be used for growth. She needed to be on a machine that breathed for her only for the first forty-eight hours; then she graduated to a nasal CPAP (continuous positive airway pressure), a device that continually delivered air to her lungs and kept them partially expanded, which she could not yet do on her own. So while Lucy had respiratory problems, so common to premature babies, hers were relatively mild. She seemed to be perking right along, quiet and docile, and her weight slowly started to build. The nurses and doctors seemed quietly hopeful-or so we inferred, for no one would make any projections about whether the babies would survive, let alone what the aftermath would be. We had to read subtle clues-the expressions on their faces, whether they could look us in the eye, the number of qualifications in their description of the day's events.
     Nell was another story. From the earliest days, her eyes were open and seemed to stare into mine. She did not react well to being handled-the machines started flashing and beeping when a nurse needed to touch her. However, she seemed to quiet and her oxygen saturation rate (a vital sign) to stabilize when she heard me talking or singing. It seemed to me that we looked into each other's eyes and connected right away, and I was grateful, for she seemed so vulnerable.
     Nell had immature lungs and more severe respiratory problems, so there was great difficulty in weaning her from assisted ventilation. The ventilator was simultaneously keeping her alive and scarring her lungs, so there was real pressure to wean her from it. The doctors would remove the ventilator and replace it with the nasal CPAP, the act of breathing would exhaust and weaken her, and they would reinsert the ventilator, or, as they say, "reintubate" her. That term makes me shiver even now. It represented failure. Four attempts to wean Nell from the ventilator failed. Meanwhile she gained weight very slowly; it was weeks before she regained her birthweight, and months before she would come out of the incubator. On the fifth attempt, she graduated to nasal CPAP, but she was still a very sick baby.
     Some parents cannot stand the NICU, and my husband was one of them. To him the unit represented suffering-the babies' suffering, and the parents'-and his own helplessness to do anything about it. During his visits he would talk and sing softly to Lucy and Nell, but he could never stay for long, and the unit staff never pressured him.
     Other parents find the unit a place of comfort. I was one of those. Here I could be with my babies and with the only other people who knew them. These were the people who knew how to keep them alive. If it had not been for my older daughter, Maggie, I would have lived there. But she needed her stable routine maintained now more than ever, so my time was divided.
     Professionally, I was fascinated by the NICU. It was a world unto itself, and the personalities, routines, and procedures were as intriguing as the juiciest novel. It looked and sounded like no other place I had been. Lights, equipment, machinery . . . monitors beeping, other machines alarming, and always the tension of a crisis. My eyes were constantly drawn to the monitors that displayed each baby's vital signs and set off an insistent series of beeps when there was cause for concern. In that ten-bed room, one monitor or another was almost always beeping. The atmosphere was mesmerizing, and sometimes when I walked from the unit into the hot Los Angeles summer, I felt like I'd been on another planet.
     Ironically, my professional interest sometimes made me even more frightened. Both girls had had intraventricular hemorrhages, or "brain bleeds," in the first few days. These are quite common in babies as small and early as they were. The hemorrhages are graded one to four, from least to most severe. Lucy's was grade one and Nell's grade three. Being the "professional" that I am, I consulted the hospital medical library. The literature review on medical complications of prematurity that I found described grade one hemorrhages as having few long-term effects. But babies who experience grades three and four hemorrhages have a significantly higher incidence of retinopathy of prematurity, cerebral palsy, mental retardation, and other neurological abnormalities. We were relieved that Nell had survived her hemorrhage, since many babies do not. Neither did she develop hydrocephaly (swelling of tissues around the brain), a common occurrence with grade three bleeds. But Nell's grade three hemorrhage was to be the source of tremendous worry for me. I think now I never should have read that literature review.
     Nell also had patent ductus arteriosus, a normal connection (for the fetus) between the main artery going to the lungs and the main artery going to the body, which should have closed, but didn't. Luckily, that condition was successfully treated with medication and did not require surgery. Both babies had persistent jaundice and needed countless blood transfusions to replace the blood drawn for the huge number of blood tests required to monitor their well-being. Large catheters were surgically inserted near their hearts in order to increase their nutrient intake. Although the medical staff reassured us that these were the normal complications of extreme prematurity, each one was frightening to us.
     When I look back, I realize that three groups of people helped me get through the long NICU experience. First and foremost were the nurses. I developed a tremendous admiration and professional respect for these competent, compassionate women. The diversity of their roles amazed me. They provided the majority of the direct care to the babies, and although most of the time they were assigned just two patients, these babies needed them, it seemed almost every second. Their record-keeping responsibilities were endless. The nurses kept written records of every event in the baby's day and spent the last hour of their shift "reporting" to the next nurse. But what really surprised me was how effective the majority of the nurses were with parents. They had great empathy and seemed to understand what we were feeling. They were very good at repeating or translating what a doctor said and giving practical examples of what that meant. They listened to our stories and to our fears. And they were there because they loved doing this very tough job. They also loved to tell jokes and talk about food. They were fun to be with.
     The babies could not be held until they weighed 1,500 grams, or about 3 pounds, 5 ounces, since their body temperatures were not stable enough. The single exception was when the nurses were changing the baby's incubator; if a mother happened to be in the unit then, most nurses would let her hold her baby while the new incubator was being readied. Only once did a nurse break this rule for me. She could see how much I missed contact with the babies. She took Lucy out of the incubator, wires and all, and held her up to my face, then put her tiny lips to my cheek. "She's giving you a kiss, Mom." At first I was too astonished at the breaking of this hallowed rule to enjoy the event! But she repeated it, and I got my second kiss from my little girl. There were many kindnesses like this on the part of the nurses.
     Another source of support to me was Dorothy, the representative of the parent support group within the unit. She had had the experience of having twins in the NICU herself. The parent support group, Good Beginnings, provided us with parking passes, meal tickets for the hospital cafeteria, and other tangibles, but the intangibles were more important. Dorothy was someone to talk to who had been there and survived. She also took some much-loved photographs and videos of Lucy and Nell that I didn't have the nerve or foresight to take myself and that I could show to Maggie and other people who could handle it.
     The doctors were somewhat more removed. Since they made many of the decisions about the babies' care, we hung on their every word. But in time we could also see how much they had invested in the well-being of our babies. I could see that they wanted to tell us that things were going well, and how pleased they were when they could. I think it upset them, too, to have to give us bad news.
     I have to admit that these demonstrations of humanity on the part of the doctors surprised me somewhat-I guess because we hear a lot of horror stories in special education about the insensitivity of doctors. I have since talked to other parents in other units who did not always have the feelings that their doctors cared so much. But my experience reminded me that it is important not to make sweeping general statements about people in the medical profession; we worked with fine doctors who were also good clinicians and good human beings. We genuinely felt like members of a team, working on Lucy and Nell's behalf, and that was a very satisfying effort.
     It was one of the doctors who did the most to teach me who my little infants were-that they were people, with personalities and preferences. He was someone who clearly liked all the babies; he talked to each of them a little differently. He showed me how differently Nell and Lucy reacted to being handled and spoken to, so that I could begin to recognize their personalities.
     Does it sound strange that I didn't think of my babies as people? Well, picture this: They were as tiny, bony, and fragile as newborn birds without their feathers. In the first weeks, their eyes were covered by white masks that protected them from the harsh lights shining over the incubator. Their heads were covered by tiny yellow hats, and attached to each hat by strings was a plastic band that covered the cheeks and was inserted in the nose, then connected to a long tube leading to one of the surrounding machines. A long, thin tube was inserted in the mouth. They were usually naked, with one or both arms held down by a bandaged splint to keep an intravenous tube in place, and a tiny open diaper placed under their bottoms. Their feet were covered by white bandages that stopped the bleeding from the many needle pricks required to draw blood. Patches covered the right and left sides of their chests, with wires protruding and leading out of the incubator. Their skin hung from their bones, without a gram of fat underneath, and it was covered by a soft, pale fur. I never held them-all I could do was stroke their backs and talk or sing to them (unless the oxygen level in their blood began to drop and the monitor began to beep-then I had to stop that, too). I kept being cautioned about how vulnerable they were, so I never allowed myself the luxury of imagining what it would be like when they came home, or when they walked, or talked, or what they would be like when they grew up. There was no guarantee they would do any of those things.
     The doctor's promise that the time in the NICU would be like riding on a roller coaster proved true. Lucy went on one roller coaster ride right in my arms. She was prone to "spells" when her breathing would stop and her heart rate slow down. One of the first times I was able to take her out of the incubator to feed her, she had a spell-she stopped breathing. Our nurse, Marge, talked me through stimulating her and getting her going. And then it happened again! But again Marge told me what to do, and Lucy "pinked up." Bless Marge for not grabbing Lucy from me and doing it herself. She had confidence in me, and she was also teaching me. That is a good nurse.
     The weeks dragged on. Lucy took a long time to be weaned from oxygen. She developed stage one retinopathy of prematurity (a visual impairment), but it eventually cleared up, as it does in 90 percent of the babies who develop stage one ROP. She grew slowly but steadily and began to look like a real baby. Finally, one night in the third month, one of the doctors told me, "Your babies are going to be fine." I thought, thank you for thinking that you know.
     Lucy came home weighing 5 pounds on September 18, thirteen weeks after her birth and a week before her full-term due date, with an apnea monitor that would stay with her for eighteen months. But what would life be without beeps?
     Nell remained what the doctors called a "management problem" for many weeks. Stabilizing her breathing and her need for oxygen proved difficult. Twice while Dewey and I were visiting she had "bronchospasm," and all the bells rang and alarms beeped and the doctor and nurses rushed to her side and stayed there, huddled over her, working frantically and talking quietly for what seemed like hours. We thought she was dying. Maybe she was . . . I still don't know what was really happening, but she came through It. What I do know is that she was a baby who never would have survived without the technology and care available in that hospital. If you could see her now, laughing as she shows me the book she has just retrieved from the toilet, you would understand my awe and gratitude.
     I couldn't hold Nell in the unit until after Lucy had come home from the hospital-it took her that long to gain her weight. She developed stage one and then stage two ROP, but her eyes also appeared normal at the time of her discharge. (Sixty-five percent of babies who reach stage two recover. Now both girls are at somewhat higher risk for the normal visual problems of childhood.)
     I had started to notice that Nell took some odd positions and that her limbs felt and looked a little rigid. The neurologist pooh-poohed it, so I kept my worries to myself. Nell finally arrived at the discharge weight of 4 1/2 pounds and came home on October 5. I left the unit with great relief-and actually some regret. After sixteen weeks, I felt so close to that world and to the people who lived in it. Even so, I hoped that never again would I be such a part of it.

at home: the first year

     With both babies home, our family could get back to normal. Of course, normal would have to be redefined, but we would do that together. We knew we were lucky that neither Lucy nor Nell had been born with or developed an immediately identifiable disability. But I also knew that we were a long way from being out of the woods. Nell, particularly, with all her medical complications, worried me. I knew our pediatrician felt the same worry. But only time would tell whether our girls would be "normal." I would have to wait and see.
     We would now be evaluating Lucy and Nell's development according to their "corrected age" rather than their chronological age. Corrected age begins with the due date of the baby, so developmentally, I now had two newborns.
     Both Lucy and Nell came home on apnea monitors, since their frequent spells of interrupted breathing and heart rate in the hospital put them at higher risk for sudden infant death syndrome. They were also still taking medication for their respiratory problems. Remembering the research on premature babies, I expected them to be somewhat irritable and difficult to comfort. Luckily, they were not; they were on regular schedules from their hospital routine, they slept quite a bit, and they responded well to being held and cuddled. Maggie could finally be a big sister, and I found that I was expecting the worst-that she would resent the girls and immediately become jealous and difficult. But she surprised me, too. She was loving and patient with her little sisters.
     I find that I am a person who often expects the worst. I remember deciding as a teenager that this was a good way to be, since expecting the worst eliminated the possibility that life would deal me too many unpleasant surprises. Theoretically, if I expected the worst, I could be prepared for almost any alternative. I found gradually, though, through the first year of Lucy and Nell's life at home, that expecting the worst, combined with what I've come to think of as "the paranoia of the professional," led to an extremely high level of anxiety.
     Monitoring the babies' weight was still very important, so our pediatrician asked me to keep a record of how often and how much they drank. Since they were being both formula- and breast-fed, this was a little on the hypothetical side, but I tried. My record-keeping became demanding. For each baby, I was recording time and amount of feeding, when medication and vitamins were given, and information about the frequent alarms on the monitor. I felt like a nurse-mother, but I was so glad finally to be in charge of these babies that I didn't care.
     From the beginning, there were frequent trips to doctors' offices. We visited our pediatrician religiously, at least once a week. He weighed and measured the babies and kept careful track of their progress. Monitoring head growth was also critical. Since Lucy and Nell had had bleeds, brain swelling could still occur. We went back for further head sonograms, and while Nell's heart was still somewhat enlarged, it was at least not any larger. Our pediatrician also kept track of how I was doing, and demonstrated real concern for all of us. My visits to him always reassured me-even if something was wrong, I felt I had an ally.
     Nell also required ongoing visits to the neurologist, and these visits made me quite nervous. I wanted to trust this man, since it was he who would ultimately declare whether or not my child was disabled. But once when I had observed him do an assessment on Nell in the hospital he had banged a jar on top of the incubator. When Nell jumped inside, he assured me that she could hear. Any sensible teacher of the deaf-or any sensitive human being, for that matter-could see that the entire incubator shook and that she was probably responding to the vibrations. My skepticism started then.
     When we visited his office, however, I could see that he was skilled at assessment and observation. He held the babies' attention as he tried to elicit reflexes, felt their limbs, and watched their movement. From the earliest appointment, I could see that he felt confident that Lucy was developing normally, but he was not so sure about Nell. He used some terms related to the particular place in the brain that might be damaged that went right over my head. She had "increased tone" (stiffness), he told me, and although it could disappear, it could also be a harbinger of spasticity. He didn't have to tell me what that meant.
     I had noticed it, too. There was a tightness to Nell's movements, in both her arms and legs. She usually held her arms in the "holdup" position, as if someone had just told her to "stick 'em up." When I picked her up from her crib, she felt like a flat little turtle, with both her arms and legs pulled close to the side of her body. She didn't melt into my body when I held her; instead she kept her back straight. I always had Lucy to compare Nell with, so I could be surer of my observations.
     Thus began what Helen Featherstone in her wonderful book A Difference in the Family called the "inner dialogue" of the parent who worries that her child is disabled. I would watch Nell in her awkward poses or hold her in my lap and think, "She's so stiff . . . this has got to be cerebral palsy." I knew that smiling often occurred late in babies with mental retardation, and Nell did not smile until she was around three months old corrected. She slept a lot and did not demand a great deal of attention when she was awake. Instead of being grateful and relieved, I worried about this, too; I knew "easy" babies could later turn out to have autism or mental retardation.
     Then the other side of the dialogue might be dominant the next day, or hour, or minute. Relax, I would tell myself, you're making yourself crazy. Enjoy the moment . . . she's smiling, she's relating . . . trying to predict the future doesn't do anybody any good.
     I thought a great deal about what it might be like to have a child with a disability. I found that, despite my professional championing of the positive aspects of disability, I desperately did not want my little girl to be disabled. And I felt ashamed of myself for ever glibly communicating to a parent or to a student that there were many positive aspects to having a disabled child. They all seemed pallid next to my fears and fantasies about what living with disability would be like.
     I bare these less-than-admirable feelings in order to communicate one of the most powerful lessons I learned from this experience. I discovered that my "expertise" felt very hollow when applied to my own children. The words I had reassured parents with were not reassuring to me. I realized that no one, myself included, could predict how things would go with my babies, no one could stop my worrying, and no one could really know how I felt. The best thing someone could say to me was "This must be really hard for you." That was an acknowledgment that I appreciated.
     On the worry scale, I found that one set of worries was quickly replaced by another, although usually the next set was somewhat less serious. First, it was, Will my baby survive? When survival seemed more certain, it was, Will my baby be severely disabled? Then, Will my baby be chronically ill or mildly disabled? Accompanying each of these was the more nebulous worry: What if I can't handle this?
     Dewey's philosophy was very different. Though it contained an element of denial, it was much more functional than my obsessive worrying and enabled him to enjoy Lucy and Nell all the more. Once the babies were out of the hospital, he was happy. They were going to be what they were going to be and to a great extent that could not be changed. He would accept them and love them no matter what. I envied him his confidence and admired his unconditional love. But I questioned myself all the more, wondering if I would love my babies less if they were physically or mentally disabled.
     Lucy and Nell experienced a number of biological risk factors that would qualify them for high-risk status and therefore for early intervention services. Among the most prominent were:

• their birthweight and prematurity
• respiratory distress
• their extended neonatal intensive care stay
• their intraventricular hemorrhages
• Nell's abnormalities in tone.

     Because of these factors, we were referred to the Newborn Follow-Up Project, designed to provide services to high-risk infants. Once a week, then later once a month, Laurel came to our house to observe, question, reassure, support, and listen. I knew what the agenda was: Laurel was here to provide information and emotional support but would also be looking for developmental problems. Most of what she did, either through conversation, observation, filling out forms, or more formal testing, was assessment, but there was a good deal of moral support, too. As usual, Lucy seemed to be moving through her milestones nicely; Nell, while doing well in the social-emotional area, was somewhat behind through the first several months in her motor development. Laurel made suggestions at every visit that helped me focus on moving the girls forward. She never falsely reassured me; her silence when it came to Nell told me that she, too, had some concerns.
     We also visited, on the recommendation of our pediatrician, the occupational therapist. Each week she checked Nell's range of motion and motor milestones, presented her with objects to see how she reacted to them, and asked me a lot of questions. I didn't last very long here. I felt that we were all being assessed to death and that we were receiving precious little intervention. It was as if the assessment was the intervention.
     Our physical therapist, Rita, was much more helpful. Although she, too, conducted ongoing assessment, she was always talking with me about what she was looking for and explaining to me in clear terms what she observed. In other words, I understood the purpose of our being there: She was helping Nell move through her motor milestones. She also gave me concrete exercises and activities to do with Nell, and some of them actually worked (although others I promptly forgot and never did). For example, Nell's arms were very tight, and she seldom straightened them out or raised them over her head. Rita told me to play "So Big" with her in the mirror. She loved the game, developed a cute trick that connected her to other people, and learned to straighten her arms and raise them over her head. This was a simple intervention strategy, successful because it could be easily incorporated into our routines.
     This example raises what is for me a tough question about early intervention strategies. It's often difficult to determine whether the at-risk child would have developed the skill without the intervention strategy, simply through maturation. What I have come to believe is that good early intervention strategies "set the stage," or provide the opportunity for a skill to emerge that might have ultimately emerged anyway, but perhaps not quite as early. Since all these skills combine and build on one another to form new skills and sets of skills, each little step can be seen as important in itself.
     We made other visits, too. There was a trip to an eye specialist for the back-of-the-eye exam, which told us that the girls' retinopathy of prematurity had not worsened; their vision was within normal limits. At their first birthday we visited the hospital follow-up clinic and saw a developmental pediatrician, who administered the Bayley Scales, a three-part evaluation of a child's developmental status. This was a test I knew well, since I had given it myself. I found it excruciatingly difficult to sit with each child on my lap and not give cues or direct her in any way. I fervently wanted Lucy and Nell to "pass." Like every mother, I felt they were much more capable than their performance indicated! I was teaching an assessment class at the time, and this experience gave me and my students a great lesson in the limitations of one-shot assessment. I felt that in order to fairly assess my children, the doctor would have to interview me rather extensively (which, to her credit, she did, but I knew she couldn't use most of that information in the Bayley scoring-she had to see the child complete most of the items) and observe them at home.
     I never got the results from the administration of the Bayley, and I didn't press for them-I felt it would be too much anxiety for me to have the numerical scores. I'm a psychologist myself and have often lectured on the drawbacks of numerical scores. But despite that "knowledge," I knew that I, too, would make too much of them. I could see from all these assessments that my girls were performing at approximately their corrected age. There were some exceptions-the communication area was slow to develop for both of them, and Nell was somewhat behind in her motor development. However, at seven months corrected age they were both sitting, and I knew that was a major accomplishment for Nell.
     The next visit to the neurologist was heartening. He noted that Nell's muscle tone was "loosening up," and her mobility was less restricted. I pushed him . . . how did he think Nell was going to do? (I knew he hated these "crystal ball" questions.) He finally looked me in the eye and said, "Oh, she will walk and talk." Inwardly I cheered. But how could he know? "You're sure?" "Oh yes." Funny, but only when a doctor told me that she would do these things did I begin to believe it.
     Within a few weeks they began, always first Lucy and then Nell, to pull themselves to stand. At around one year corrected, Maggie and I were in our family room with Lucy when she literally walked across the room. I screamed "Maggie! She's walking! She's walking!" Maggie finally said to me, "Mom, you don't have to keep saying that." I had just assumed they would be late walkers, and I was flabbergasted. Quite an astute clinician, wasn't I? Nell was really not ready to walk: Her feet were turned way out (from her long-term positioning in the incubator), her legs were still stiff, and her standing was very unsteady. However, within a few weeks, she was taking her first steps. She saw her sister do it, and she'd be damned if she would be left behind.

the second year at home

     Nell was at first a very awkward walker, and in the next months she must have fallen hundreds of times. Every time she bumped her head I worried about damage to her brain. But it now seemed that Nell's "increased tone" had not interfered significantly with her motor development, and I was thrilled. It was time for the next worry. Through their second year I watched Lucy and Nell's language development closely. It seemed slow, particularly when compared to that of their older sister. Their first words came at around fifteen months corrected, "baby" for Nell and "book" for Lucy. But although I worried about this, too, I was reassured by their social abilities. They were motivated and effective communicators, even if they did not use words. In fact, they sometimes used single and combined gestures to tell their stories. As I write, their corrected age is two years old, and they are speaking in three- and four-word phrases. Their language is still behind that of children their age in their toddler group, but now I feel that it will come, though at its own pace, not mine.
     I wonder now as I look back whether I was a "difficult" parent for these professionals to work with. There is no doubt that I was very anxious; this certainly is a characteristic shared by many others in my situation, but I think my anxiety prevented me from appreciating how well Lucy and Nell were doing. Also, as a person who is fascinated by babies, I think I did not enjoy these two as much as I might have-I was too worried, and probably too tired as well. My first daughter's babyhood was one of the happiest times of my life; I feel sad that I missed that with Lucy and Nell.
     As a professional, I knew enough to ask good questions, but I may have been perceived by some as a "know-it-all." For those who were considerably younger than I, the fact that I was knowledgeable might have been somewhat intimidating, preventing them from putting their best foot forward. I know that as a young teacher I found knowledgeable parents somewhat nervewracking; it was easier to work with people who needed my knowledge, those who would let me be the authority. But today we aspire to parent-professional partnerships, and the professional must be able to let go of that need to be the sole authority. So must the parent! We are all authorities, working together for the good of our children.

1992

     Today, I enjoy my children, and they are enjoying life, too. Nell is interested in the moon and can't figure out why it's not always up in the sky, or at least in the same place every night. Lucy loves her baby doll and Kiki, the stuffed dinosaur. They fight over their toys and slump together on a chair as they drink their bottles. One recent morning I took them outside and pointed out a large sowbug. Lucy leaned down and kissed it. Nell picked it up and put it in my coffee, grinning her big grin.
     Sometimes I look at my sleeping babies and flash back to the hospital, where I stared at their tiny, struggling bodies and didn't dare imagine the future. At other times I watch them play and think, "Why was I so worried that something would go wrong?" I've concluded that the whole experience-their very early birth, their hospitalization and treatment-was so profoundly unnatural that it is difficult to believe that they could emerge unscathed. Actually, I still don't believe it.
     Is this case "solved"? You tell me. Through the help of good medical care, support from professionals, a loving family, and a tremendous amount of good luck, Lucy and Nell have so far escaped the major disabilities associated with their high-risk status: cerebral palsy, mental retardation, visual impairment, hearing loss, and significant language delay. We feel incredibly lucky-and somewhat guilty-to be so blessed. Good luck is distributed so randomly.
     Last year at a conference, though, I heard a physician describe longitudinal studies of the so-called extremely low-birthweight babies (less than 1,000 grams) in which up to 50 percent of the subjects were receiving special education services for children with learning disabilities. So there is something else to worry and obsess about, and it will be many years before I know whether Lucy and Nell have jumped this hurdle, too. But I can live with this concern; it appears relatively minor compared to what we have faced. My girls and I will be better off if I can expect the best from them and for them, and put the past behind us.

update, 1998:

     When I discuss Lucy and Nell with my students, I often tell them this story, which occurred shortly after I wrote the case study. I was invited, along with several other parents of children at risk or with disabilities, to speak to a class at a neighboring university. Each of us would tell our "stories" to the class, then participate in a group discussion. Before class started, I chatted with the young mother sitting next to me, and we discovered many commonalities between us. Her son had been born at the same time as my girls, and he and Nell were born at the same weight, 1 pound eleven ounces. Both he and Nell had had serious respiratory problems, the same heart problem, and a grade 3 intraventricular hemorrhage, or "brain bleed". But while Nell was by then walking and talking, this mother's son had severe cerebral palsy.
     And that is what risk is all about. Some children develop disabilities, and some do not-and it's often not clear why. This wasn't about environment: this mother, 19 years old and single, was clearly bright, competent, and in love with her child. As I talked with her, I felt very lucky and very guilty, and recommitted myself to my work with young children with disabilities.
     Lucy and Nell are now 8 years old and in the second grade. They learned to read last year, and that brought me such joy-of course I worried that it would never happen. But now Lucy calls herself a "bookworm", and Nell writes long detailed letters to friends and family-no punctuation, and creatively spelled-but full of her ideas. We are lucky people.

update 2001

My mom has always talked about us being premature. I don't remember anything except stories. How we looked like scrawny baby birds, how we had all these problems that we eventually got over or the doctors cured. I've seen pictures of course. We did look like little birds and in my opinion we were ugly! I was born 45 minutes earlier then Nell and I've always liked that. When we fight I can always say I'm older then she is. But that doesn't often work because there's so little difference in ages. I kind of like being premature. Except when people ask why we are a year older then everyone else in our grade. Then it gets kind of annoying to explain the whole reason mom kept us back in preschool a year. I've never really understood it myself. But being premature doesn't really affect my life.

a follow-up note to early intervention professionals

     Based on my experiences as a parent in the NICU, I have some suggestions for in-hospital early interventionists who may be in the position of working with families.

1. Do whatever you can to help the parent think of his or her baby as a person and an individual. This does not mean that you should "anthropomorphize" the baby, or make up human motivations and personality that don't exist. Instead, build on what you observe about the baby's responsiveness, state, activity level, and so on. Of course, the more experience you have observing preterm and sick newborns, the easier it will be to contrast babies sensitively with one another.
2. Coupled with suggestion number one, do what you can to promote attachment between the parent and the baby. Point out to the parent, as one nurse did for me, if the baby quiets to his or her voice. Comment on eye contact between the parent and child. If the parent is self-conscious and quiet, don't be afraid to talk softly and foolishly to the baby yourself. Perhaps the parent needs permission to interact naturally with the baby in such a strange and unhomelike environment.
3. Listen. Often parents need to talk obsessively about their baby and their worries. Others, of course, won't choose to do that with anyone connected to the hospital. Linking them up with another parent who has had a baby with similar problems might be the best thing you can do for them.
4. Try not to be judgmental. If a parent does not visit the baby regularly, it may not be because he or she doesn't care. There are many reasons, physical, economic, and emotional, why parents cannot be there as often as you think they should. Talk to them about your concerns and see if there is a way to help.
5. Get older siblings involved in the baby's life as early and as meaningfully as possible. They will feel left out; they will be left frequently with friends and babysitters; they will miss their parents and be frightened about what is happening. The known is always less frightening than the unknown. Even if the worst happens, and their baby brother or sister dies, if they have seen the baby they will have a memory and a shared frame of reference with their parents forever.

recommended readings

     Bernbaum, J. C., & Batshaw, M. L. (1997). Born too soon, born too small. In M. L. Batshaw (Ed.), Children with disabilities, pp. 115-139. Baltimore: Paul H. Brookes.
     Featherstone, H. 1981. A difference in the family. New York: Penguin.
     Harrison, H. 1983. The premature baby book. New York: St. Martin's Press.
     Kopp, C. B. 1983. Risk factors in development. In P. H. Mussen, ed., Handbook of child psychology: Infancy and developmental psychobiology. New York: Wiley.
     Semmler, C. J., ed. 1989. A guide to care and management of very low birthweight infants: A team approach. Tucson, AZ: Communication Skill Builders.
     Turnbull, A. P., & H. R. Turnbull. 1986. Stepping back from early intervention: An ethical perspective. Journal of the Division for Early Childhood 10: 106-107.

connections

Connected to much of the coverage in Nancy Hunt and Kathleen Marshall's text, Exceptional Children and Youth 3/e, this story is especially linked to these text chapters:

• Chapter 2 Risk Factors and Early Intervention
• Chapter 3 Families and Culture
• Chapter 5 Children with Mental Retardation
• Chapter 9 Children with Language Disabilities and Communication Disorders
• Chapter 11 Children Who Are Blind or Have Low Vision
• Chapter 12 Children with Physical Disabilities and Health Impairments