by Ann Leary
Because the physical space was cramped, the parents of the babies in the unit were forced to become acquainted. Jack slept twenty-three and a half hours a day, but he was the only person I knew in England, so I basically spent my entire day at his side, gazing into his isolette. I would like to report that I immediately became the darling of the SCBU, adored by staff and parents alike, but in retrospect I think it was, for some, like having a college roommate with a serious personality disorder who never left the dorm.
Other parents had jobs, homes, and children and could sometimes spend only an hour or two with their babies. They would arrive in the unit, and there I’d be. Hints like, “You really should get out more. It would do you a world of good,” and even “You still here?” were lost on me, as every time I strayed even a few blocks from the hospital, I would imagine the unit bursting into flames or Jack’s heart not beating or his intestines exploding, and I would literally run back to the hospital.
Very early on, I noticed that some of the other parents in the unit were able to listen carefully to the attending nurses and physicians and had faith that these highly trained professionals knew exactly what they were doing. I, on the other hand, skimmed through every book I could find on prematurity, processed just enough information to make myself thoroughly demented with fear, and then, with my dangerously minute amount of knowledge, began to doubt and second-guess all the doctors, nurses, and carefully laid-out procedures in the unit. I worried that the medical staff was (1) overtired, (2) underpaid, and (3) not as up-to-date on current neonatal practices as I, who had just read a book called Born Too Soon. I also believed that the staff was filtering information in an effort to not cause alarm, so I became hypervigilant during the most mundane conversations with them.
One morning, as I was about to enter the unit, I was stopped by one of the neonatal nurses.
“Hello, Mrs. Leary,” she said cheerfully. “Would you please wait outside the unit for about ten minutes while the doctors are doing their rounds.”
I stood frozen in place. Through the glass wall, I saw that Jack’s isolette was completely surrounded by doctors.
“You can wait in the parents’ lounge if you’d like,” said the nurse. Her studied calm and her casual remark about doctors’ rounds were not having their intended effect, and I frantically tried to decode what I viewed as a cryptic stock phrase handed to all parents whose babies had taken a turn for the worse.
“Um … can I …?” I couldn’t finish the sentence, as I was about to burst into hysterical crying. So I stood with lips twisted into what I hoped was a smile but knew was more of a hideous grimace.
“Or … you could wait right here,” said the nurse. Then she stepped backward slowly, as if she were afraid to turn her back on me, and I stood outside the unit peering in through the glass, anxiously studying the doctors’ expressions. As it turned out, there was nothing the matter that day. The doctors make rounds each morning, and there’s simply not enough room for parents to be in the unit at the same time.
It was always heartbreaking seeing a new set of parents arrive in the neonatal unit. Usually the father of the baby would get there first, while the mother recovered from the trauma of birth. Almost without fail, the father would be immediately captivated by the machinery. The valves, gauges, and beeping monitors would beckon him from the moment he set foot in the unit, and he would ask the staff a multitude of questions about the engineering and operation of these devices. Ah, he would think, now everything’s under control. After the chaotic mess of the female version, which he had just so dramatically witnessed, these man-made wombs were comfortingly sterile and efficient, and by the time his wife arrived at the baby’s side, he would have learned all there was to know about each device.
“Right, so here we have the pulse oximeter, or ‘pulse ox,’” he would begin enthusiastically, and then he would give his wife a detailed rundown on the machine’s operations, the history of its applications in neonatology, and its revolutionary effectiveness in monitoring blood-oxygen levels. The wife would blink back tears and tilt her head and try to envision her baby without tubes in its nose and wires covering its skin. She would, like me, imagine the baby in her own embrace, removed from the machine’s cold, authoritative control.
Whenever a new baby appeared in the unit, I wanted to know what was wrong, and with most babies it was obvious. Either they were very premature or they had sadly visible birth defects. Every now and then, however, a healthy-looking full-term baby would show up in the unit, and I would ask the nurses why it was there. The answer was always the same: “None of your business.” I have to admit that this irritated me. Because I spent so much time in the unit, I considered the nurses my friends. We discussed their boyfriends and their money problems, and some even griped about the annoying Miss Borthwick, which always thrilled me, so I felt that their sudden refusal to share information regarding these babies was a mean show of rank and power. They were nurses, and I was not.
Still, the tight confines of the space ensured that all parents eventually learned more than they wanted to know about the babies and one another. Jack’s room, which held the sickest babies, was shaped like an L, and there were four other babies in his half when we arrived. First there was tiny Daniel, who was the smallest baby in the unit. He weighed just a little over a pound and was very ill. His mother and father were teenagers and seemed somehow sheltered by their ignorance. They appeared to be not altogether sure how they had gotten from a post-rave one-night stand to the Special Care Baby Unit. They smiled uncomprehendingly at doctors who told them there might be a difficult decision to be made if their baby didn’t improve. If a nurse asked them to leave the unit while a procedure was being performed on their baby, these premature parents left without asking what the procedure would be.
Then there was Chloe, a six-month-old who’d been born full term with a genetic disorder that had caused a cleft palate, a cleft lip, a deformed leg, and some serious heart problems. Chloe was adored by everyone, staff and parents alike. She was developmentally normal and was the only baby in the unit who was mature enough to smile—and she was a smiler. Her mouth was terribly disfigured from the cleft palate, but she smiled beautifully with her eyes, and it was like an addictive substance that none of us could get enough of. Everyone who passed her crib spoke with her and cooed to her, and the nurses showered her with affection. Her parents, Kevin and Sara, had two other children at home, which was an hour away, and they were having financial hardships, but they came to see Chloe every day, often spending hours with her. They were veterans of the ward, and despite Chloe’s frequent setbacks, they were optimists. They had complete faith in the staff, knew all the other parents, and seemed to keep in touch with graduates of the unit as well.
Another resident of the ward was Charles, who had been born at twenty-five weeks’ gestation, five months earlier. Charles had been on a respirator since birth. He had respiratory distress syndrome, bronchopulmonary dysplasia, and numerous other complications that were related either to his prematurity or to the treatments he had undergone that were necessitated by the prematurity. Charles’s head was swollen due to hydrocephalus, and his whole body was grotesquely enlarged from the steroids that helped him breathe. His skin seemed too tight for him, and he was on so much morphine that he was never really awake. His life had been spent in limbo. Although Charles’s condition never seemed to improve, his mother, Lisa, came to see him every day. Lisa was different from most of us who had newer arrivals on the ward. She wasn’t as panic-stricken, but she wasn’t really normal. She had a flat affect, which might just have been her personality but was more likely the result of depression and hopelessness regarding her baby’s condition.
Occasionally healthier full-term newborns were admitted to the unit for a few days for observation after a difficult birth. I had become so accustomed to the appearance of tiny preemies that these chubby babies looked like freakish giants among their delicate, lilliputian neighbors. I often found myself
clucking sympathetically at the sight of these babies, until I remembered that that’s how babies are supposed to look. One of them, Stephen, was a large blond baby who had inhaled some fluid during the delivery and needed oxygen. His Scottish parents had other children at home, so the mother, Jane, would come visit in the morning and the father, Angus, came on his way home from work in the evenings.
Angus was a malcontent. He would stroke his child and glance at his chart, but most of his time in the SCBU was devoted to identifying National Health Service mismanagement and waste. Angus bitterly resented authority and treated the doctors with disdain.
“I’m sure ye’ve never seen a neonatal unit as pathetic as this in the United States,” he said to me one day.
“I’ve never seen a neonatal unit at home,” I replied.
“I have,” said Angus. “On one of yer programs. Yer Sixty Minutes. American hospitals are spotless clean. Ye could eat off the floor.” Then he motioned toward the floor under his baby’s isolette and shook his head in disgust.
“I don’t know,” I said, in a voice that I hoped was loud enough for Miss Borthwick, who was just walking past, “I think the most important thing is the quality of the nursing staff. I don’t think you’d find as well trained and motivated a staff in an inner-city American hospital.”
Angus laughed aloud and replied, also loud enough for Miss Borthwick, “This lot motivated? You must be joking!”
Although Angus was quick to blame the staff at the SCBU for lackadaisical sanitary conditions, in my mind Jack’s very existence was jeopardized by Angus’s own young boys, who were brought into the SCBU each day to visit Stephen. One of the boys had a perpetually runny nose, and both children looked like they hadn’t washed their hands since their mother’s first trimester. I was appalled the first time they came skipping into the unit and was certain the nurse on duty would chase them out immediately. Instead she made a big fuss over them and helped each of them hold their baby brother. When they weren’t peering into Stephen’s isolette, they were peering into Jack’s, and I started positioning myself protectively between Jack and Stephen every time the boys appeared.
“Okay, please … don’t come too close. I wouldn’t want you to catch any of Jack’s germs and give them to Stephen,” I would say to the boys in a trembling voice. The boys would completely ignore me and wander, deliberately breathing, all over the SCBU. One day, after the boys had gone home with their parents, I decided to approach Joan Dyer. I had thought long and hard about the most diplomatic way to present this problem.
“Joan,” I began with a smile, “my sister-in-law has sent me several books about the treatment of premature babies—American books, you know—and, interestingly, in America they don’t allow siblings of neonates into the units.”
“Ah, I’ve heard. Shameful, really.”
“Well, I can see the point, actually. See, the older children go to school and day care and could pick up all sorts of germs. Then, if they pass them on to one of the babies here, I mean their little immune systems aren’t equipped yet. Where a normal newborn might be able to fight off viruses, these little ones …”
Joan was a senior nurse. She had gone through four years of college, followed by four years of nursing school and then two more years of specialized schooling in neonatology. She had nursed hundreds of babies in this SCBU over the years, and now she was being issued a lesson on the immunology of neonates by me, the learned reader of a single book about preemies. Joan stood patiently and listened as I explained about the masks and gowns that Americans are required to wear in neonatal units. She nodded as I described the mandatory scrubbing of hands that parents are required to do before they may touch their babies.
When I’d finished, Joan said, “Is that right? Do they still make parents wear masks to visit their own babies in the States?”
“Yes,” I replied, relieved. I was getting through.
“Interesting. You know, that’s considered very old-fashioned here. We stopped doing that years ago. There was a study done, and it was discovered that babies in neonatal units don’t usually become infected by germs from their family members. It’s mostly the doctors and nurses, carrying germs from one baby to another, who cause problems. The study also revealed that the masks and gowns and gloves cause a serious psychological barrier between the infant and the parents, and sometimes this can cause problems with bonding.”
Joan then cited studies proving that babies who are overly protected from germs in SCBUs don’t develop the necessary resistance to infections and are more ill in subsequent years than babies who’ve been in neonatal units with more relaxed standards. Joan’s explanations made sense, and I was certain she would end the conversation by saying, “In the future do you mind keeping your big trap shut about things pertaining to the operation of this unit? We have things very well in hand, as you can see.” Instead Joan placed her hand on my arm. “I don’t know how you parents cope with all the worry. I really don’t. Keep pumping your breast milk for Jack. That’s the best protection he can have.”
VERY EARLY ONE morning, when Jack was just a couple of weeks old, I arrived in the unit to find that Stephen had gone home and a new baby, Alexander, had moved in next to Jack. Seated beside his isolette was a pretty young woman with long auburn hair. She was reed thin and wore trendy low-slung jeans and a tight-fitting top. We said hello and introduced ourselves—her name was Faith—and when I admired her handsome, full-term baby, she informed me that she had just delivered him earlier that morning. I was taken aback by this information. This woman’s baby weighed over eight pounds, but to look at her, you would never have known she’d been pregnant. Jack, on the other hand, weighed two and a half pounds, but looking at my body, you might suspect that he had a morbidly obese twin awaiting a later delivery date.
Faith’s intense beauty and mysterious ways were a source of constant fascination for me. She was as lean as a greyhound, but she swilled Coke and ate chocolate biscuits at six-thirty in the morning. Her handsome husband, who arrived later with their toddler, shared her casual demeanor and her affinity for candy and soft drinks. Faith spoke to her little boy, Max, in a calm, soothing manner. Max had a gorgeous round, pale face surrounded by light brown curls, and he would say things like, “May I have a biccy, Mummy?” or “May I give Alexander a cuddle now?” This child didn’t whine but spoke in such a sweet, plaintive voice that sometimes I’d blurt out, “Of course you can!” before his mother had a chance to answer.
Faith and I became friends, and we spent many hours admiring our babies and expressing milk together. I liked Faith, despite the fact that in her delicate presence I felt like a large, lumbering hillbilly. Faith’s movements were graceful and catlike. Walking beside her one day, I remembered that when I was a child, kids used to tease me about my walk, which is more of a saunter, really, as my shoulders and head are overly involved in each stride. Faith met each day with a serene, almost otherworldly calm, which I attributed to the Buddhism she told me that she and her husband practiced. Panicked mania was my overriding emotional condition, and I wanted what Faith had. Sometimes, while seated in the parents’ lounge, Faith would seem to be in a meditative state, and I would close my eyes as well and try to visualize myself walking along a warm, tropical beach. Unfortunately, I could manage only a couple of steps before my psyche would be catapulted back to cold, scary London, where my very ill baby was hospitalized.
One thing that worried me about Faith was that she seemed unclear about what exactly was wrong with her baby. She would say things like, “I thought they were going to let me bring him home today, but now they want to observe him for another two days.” I would ask why, and she would shake her head and shrug. I was certain that the baby was fatally ill with a heart condition and the doctors were not being straightforward with Faith. Because she was quite young, I decided to take her under my wing. “You have to ask questions,” I would gently encourage her. “You’re his advocate. Ask the doctors why they’re holding your baby,
” I would say over and over, and she would bite her lip and nod. After the doctors finished their rounds each day, I’d tell Faith, “Don’t let them leave. Go ask them why Alexander can’t go home today. Go on! Ask them why!”
Finally, when Faith left the unit one day, Kate, one of the Irish nurses, said, “Jee-sus, when will you stop harassing the poor girl about her baby?”
“I’m just trying to help her,” I explained.
“Help her do what?” asked Kate.
“Well,” I replied, “she doesn’t seem to understand what’s wrong with her baby. I think sometimes the English aren’t aggressive enough when it comes to demanding their rights as patients, or as parents of patients.”
Then, seeing that I had Kate’s rapt attention, I added, “Faith is such a natural mother that this whole hospital environment is extremely disturbing to her, and she’s sort of had to zone herself out in order to deal with the stress of it all. I understand Faith,” I said, “and I just want to help her get some straight information from the staff here on exactly what is wrong with her child.”
