Sent Before My Time

A Child Psychotherapist's View of Life on a Neonatal Intensive Care Unit

Margaret Cohen

• Publisher: Routledge
• Year: 2018
• Topic: Psychology
• eBook ISBN:
  9780429918889
• Subtopic: History & Theory in Psychology
• Index: Psychology

Sent Before My Time is an exploration of the workings of a neo natal intensive care unit from a child psychotherapist's point of view. It examines the relationships between the babies, the parents and the staff.

CHAPTER ONE

The Setting

… sent before my time
Into this breathing world, scarce half made up

Shakespeare, Richard III, Act I, Scene 1

One enters the neonatal intensive care unit (NICU) through a locked door. From the very beginning one has strong thoughts: this is a world apart—some privileged people have cards that open the door, others have to wait until they have identified themselves. It is a world to which one has to gain entry. There is a sense that what is inside is fragile and that what is outside may be dangerous. Sometimes doctors who occasionally have to run quickly with babies from the labour ward to the NICU are worried about gaining entry fast enough. In the time that I have been working on the NICU, entry to the unit has become more difficult—and I think this is to do with a stronger perception that we live in a dangerous world. I have often thought that there is something womb-like about the unit: it is apart from the rest of the hospital, hard to gain entry to, and very enclosed.

Figure 1. Incubator.

Once inside, one is encouraged to take off one’s coat and to wash one’s hands. Here again is the idea of danger: one may be bringing in germs from outside. Very soon one sees the big windows of the nurseries ahead. The unit had two and, more recently, has three nurseries: the hot, the cool, and the intermediate—although to any healthy adult these are all rather too warm for comfort. The more official titles are the intensive care, the high- dependency, and the special care nurseries.

The premature babies often come to the unit in quite a dramatic way. There may have been word that a baby is expected, particularly if there are twins or triplets. The unit will have tried to prepare itself, and a team will have gone to the labour ward to be ready for the baby. The baby may have needed a lot of work to resuscitate him at birth, and he may have been born by Caesarean section. Whatever his story, the mother can often not hold her baby before he is hurried away. These babies may be as early as 22 weeks’ gestation and weigh as little as 500 grams. Very-low-birth- weight babies—that is, babies weighing less than 1,500 grams— account for 2% of all live births, and more than one in ten of these will be left with some major disability. Once in the unit, babies will be fitted up with whatever is needed to sustain their life. Mothers come to the unit from the postnatal ward as soon as they can to see their baby; if they cannot come, a nurse will bring them a photograph of their new baby. Some babies coming to the NICU are not premature but full-term babies in some kind of difficulty.

The intensive care nursery can take up to ten babies but will then be very crowded. The babies lie on platforms just above adult waist height. These platforms may be surrounded by a Perspex fence to prevent the baby from slipping out, or they may be covered by a Perspex incubator. These incubators have port-holes in the sides for the staff to put their hands through to care for the baby. The quality of the incubators has vastly improved over the last twelve years. An ultraviolet light may shine on the baby to counteract jaundice, and in this case the baby will wear a mask to protect his eyes.

Surrounding each bed is a jumble of equipment, joined to the baby by several leads. These are attached to the babies’ arms, legs, and trunk. Sometimes taped to their arms and legs there are tubes that can be quite heavy and presumably give the baby an odd sensation. The babies breathe artificially by means of a ventilator that is strapped to their nose or mouth. They are mostly fed intravenously. There are bright lights overhead, which occasionally get turned down. The beds are very close together, and nurses are often working on the babies. They have high stools to sit on. There is the constant noise of alarms going off as the babies’ oxygen requirements are monitored. The nurses are aware that the babies need less stimulation, and they make an effort to instigate quiet times in the day—but these often have to be interrupted if the doctors are available then to work on the babies. In this nursery the parents can sometimes hold their babies, but this takes cooperation from a nurse, who has to arrange the leads and make sure that all the equipment is safe. Nurses vary in how much they encourage mothers to do this. Some nurses have noticed that some babies need less oxygen when they are being held by their mothers. Some nurses will also encourage the mothers to hold their babies against their own skin.

Figure 2. Incubators and monitors: a diagrammatic layout.

Figure 3. Tubes and monitor leads.

Figure 4. Baby on ventilation.

The babies graduate from this nursery to the intermediate, or high-dependency, nursery. Here the care is not so intensive. The babies may be in a headbox (a Perspex box covering the baby’s head and shoulders and conserving oxygen supply); they are probably being fed nasogastrically, and the mothers will be providing more of their care. At the end of this nursery there is an isolation cubicle for any baby who may have an infection that is dangerous to the other babies.

From the intermediate nursery the babies go to the cool nursery. They may be “in air”—that is, breathing naturally—or they may be “in a trickle of oxygen”. It seems that many preterm babies find it very hard to give up this trickle of oxygen and to breathe unaided, and this is often an obstacle to their going home. The trickle comes through a tube that is taped to the baby’s face and ends at the nostril. There is something wonderful when this can be taken off and the mother can see the baby’s face unencumbered for the first time. The babies here may still be being fed nasogastrically, or the mothers may be beginning to try to breast-feed or bottle-feed them. Many mothers heroically express their milk for weeks or even months, so that their own milk can be put down the tube, and also to keep the flow going so that when they have the chance to breast-feed, their milk is still there. In this nursery usually the babies lie in little Perspex cots, where they look cosier and less vulnerable. It is much easier for the parents to take them out, although the nurses may still have to help them to manoeuvre the leads. The mothers gradually take over the care of their babies when they visit, until their baby is ready to go home.

Figure 5. Headbox.

After the birth the mother will be able to stay on the postnatal ward for a few days, but she will then have to go home and come to visit her baby in the NICU. The unit is open 24 hours a day to parents, but it is very traumatic for mothers to have to leave the hospital without their babies. There is, on the unit, a small room used by the mothers to sit in, where they can stay overnight, but this is only allowed in special circumstances. All mothers “room in” with their baby for at least one night before taking him home. If a baby is very ill or dying, the parents often camp out in this room. Sometimes parents live far away; this can happen if a woman gives birth early while away from home, or, in these days of scarcity of beds, the baby may have had to have been brought from far away because of a lack of local resources. This is then extremely difficult for parents and sometimes they are allowed, unofficially, to stay in the Nurses’ Home.

The atmosphere on the unit is friendly but quite hectic. The doctors are overworked and often tired. Nursing suffers chronically from understaffing. To a stranger the hi-tech equipment is rather daunting, and the flashing lights and alarm signals can be unnerving. On the whole, the atmosphere of the cool nursery is much more relaxed, but even here there may be a baby who is no longer in danger but who is sick or seriously handicapped. Whereas the mothers in the hot nursery are usually extremely frightened, in the cool nursery they may not be so terrified, but they are often worn out with the weeks or months of visiting the NICU. Their babies are usually more stable, and mothers often become more complaining and angry—as if they can only then afford to have these feelings. They may also be feeling torn apart by the conflicting commitments to the baby and to home. This book does not attend to the difficulties experienced by the new baby’s brothers and sisters, but I am very aware that these can be serious, that life at home is very disrupted, and that in an ideal world we should make more provision for siblings to visit the hospital.

The staffing of the unit has changed somewhat over the twelve years that I have been working there, but in essence it is the same. There are consultant paediatricians, registrars who stay for four months, senior house officers who stay for six months, a nurse manager, sisters, staff nurses, and more junior nurses, a receptionist, and cleaners. The unit is further served by a social worker, a speech and language therapist, child psychotherapists, child psychiatrists, a health visitor, and a chaplain. There is a nurse manager who runs the unit and above her a hierarchy of managers in the hospital. The unit meets once a week to discuss each baby both medically and from a psychosocial point of view. There is a weekly business meeting to discuss the working of the unit. And there is a weekly staff support meeting. In addition, there are various teaching and training sessions.

Throughout this book I refer to the trauma of neonatal intensive care. I think that the experience of the babies is traumatic: they are often in pain, they cannot be picked up by their mother for the first few weeks, they are not living at home but in a high-tech unit. For the parents the experience is also traumatic: they cannot take charge of their babies, they cannot begin the process of finding their way to bring up their child, to claim it as theirs; they have to stand by, impotent and in public. It is traumatic for the staff to bear witness to all of this pain. So there is a triangle between the babies, the parents, and the staff, which is fraught with difficulty. But the atmosphere on the unit is rather ordinary. The staff work here every day: this is their life, their norm, and so the extraordinary character of what is going on tends to get lost. When one reminds staff of it, they can be quite baffled. But unless they keep a fresh vision of how unusual and distressing much of what goes on is, they cannot reach out and understand the babies and parents. Of course, the staff need to get on with their work, so they often prefer parents who do not make a fuss. I often feel that we should be worried about these parents and keep in mind that sometimes it is healthy and positive to be making a fuss and to be upset.

CHAPTER TWO

Two ways of seeing

…the traces of the storyteller cling to the story the way the handprints of the potter cling to the clay vessel.

Walter Benjamin, The Storyteller, 1999

When I applied for the child psychotherapy post at the neonatal intensive care unit of a large inner-city hospital, the part of the job description that caught my attention was that the post-holder would be expected to articulate the babies’ experience. I understood that I would also be required to be available to mothers, to fathers, to extended families, and to staff, that my job would be to listen and to try to understand their feelings. Although these latter things were difficult, I had some ideas about how to do them, some experience to fall back on. I was not too surprised that I felt rather superfluous in a busy unit, that I often wished I were a doctor and could be clear about what I should be doing and could do something useful, without feeling so full of ignorance and impotence. These are states of mind that psychoanalytically trained therapists are familiar with and learn to tolerate. But articulating these babies’ experience—that was something different. I rather fancied myself as knowing about babies; after all, I had had three of my own, and I had also done a two-year baby observation as part of my training and had supervised others doing such observations here in London and for many years in Italy. But these babies on the NICU I found hard to watch. I wondered what they were feeling and, dare one say, thinking. One doctor said to me: “We do such dreadful things to them, I just hope that they forget.” Whether or not the baby forgets the experience, I wondered if it was ever going to be possible to imagine what the babies’ experience might be. I decided I had to sit and observe the babies and to get to know them, to know which baby belonged to which mother, and so on.

Which brings me to what I want to discuss: two different ways of looking at the same things. The way we describe these two ways depends partly on our prejudices, but also on our task—for instance rational or non-rational, practical or imaginative, reality-based or fantasy-based, sane or insane. We can all see things in different ways but we vary in our positions along these spectra, and we vary in what we prefer to concentrate on. So it seems to me that medical people in a work situation like the NICU have to emphasize the practical, the rational, the real, the sane, in order to get on with their work, while the psychotherapist will be more aware of the non-rational, the imaginative, fantasy, and the insane—and thinking and describing in this way seems akin to storytelling. Child psychiatrists at their best try to bridge the gap between these different ways of seeing.

I wondered what acknowledgement the non-rational and the imaginative could have in the unit. Admitted to or not, they must be there. Birth is one of the most powerful events in human life. Art and religion have struggled with its mystery throughout the centuries. We know that people exhibit powerful and surprising reactions and behaviour around birth—that they often “do not feel themselves”. We know also that new mothers are usually in unstable states of mind and are even given special dispensation in the law courts. But how can we think about this, and should it make any difference to us? One mother told me how she had imagined her labour and childbirth: there would be a darkened room, with one well-known and friendly midwife, who would maintain a peaceful atmosphere. Instead of which she was able to count, at one point, no fewer than fifteen people in the room. There were spotlights directed on parts of her that she had always regarded as intensely personal. She was surrounded by cold, hard instruments whose function it did not take much imagination to guess at. She knew that all this was necessary, but for the time being she did not want any contraceptive advice, as she thought that she would not be having sex for quite...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• ACKNOWLEDGEMENTS
• SERIES EDITORS’ PREFACE
• INTRODUCTION
• 1 The setting
• 2 Two ways of seeing
• 3 Twins
• 4 The issue of respect in a medical context
• 5 Integrity
• 6 The struggle of life and death wishes
• 7 Mourning for a baby
• 8 The web
• 9 Doctors, midwives, and prison officers
• 10 Addiction
• 11 Vicissitudes of life on a neonatal unit
• GLOSSARY
• REFERENCES AND BIBLIOGRAPHY
• INDEX