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Royal Society of Medicine Forum. Preterm birth: a medical miracle with an emotional cost? SECTION 1

This is Section 1 of a full report of a meeting of the Forum on Maternity and the Newborn of the Royal Society of Medicine held on 28th April 2005

The report is to be published in part in the Midwives Journal of the Royal College of Midwives. It is reproduced here with their consent and our thanks.

Morning session: Being born early.

Chair: Dr. Anita Holdcroft, Reader in anaesthesia, Imperial College, London.

Delivery issues surrounding preterm birth.
Stephen Burrell (SB), Obstetrician, Luton & Dunstable Hospital.

The small for gestational age (SGA) baby has an increased risk, compared with the baby of normal size, of stillbirth, hypoxia, and other neonatal complications, and longer term complications such as impaired neurodevelopment, diabetes and hypertension in later life. SGA fetuses also have a higher rate of major chromosomal abnormality.

The intra-uterine growth restricted (IUGR) fetuses are at greater risk yet, with a significantly worse outcome if born at a weight less than 550G. They have higher perinatal mortality, and more retinopathy of prematurity and necrotising enterocolitis than those of appropriate weight.

Just under half of very low birth weight babies - 400500G - survive to receive neonatal intensive care; only 17 per cent of those survivors are alive to be discharged. Of these 25% have moderate and 23% severe disabilities. Survival improves as gestation advances, from 10% at 23 weeks to 43% at 25 weeks. There are interesting epidemiolgical associations: babies of Afro-Caribbean origin and (in smaller degree) males have worse outcomes, while the babies of the better educated fare much better (Lee M-J 2001). Assessed at six years about one half had no impairment; 13% had a severe cognitive defect, while 30% were physically unimpaired (Piper et al. 1996; Garite et al. 2004; Lucey et al. 2004; Costeloe et al. 2000; Wood et al. 2000 and 2003; Marlow et al. 2005).

The common co-existence of intra-uterine growth retardation with prematurity increases the short and long-term risks to these babies. Given that gestational age is a very important determinant of outcome, how are we to judge the optimum time for the delivery of severely growth restricted fetuses? It is a very late event, probably too late, when a CTG becomes abnormal. Thus we need a way of assessing the placental delivery of oxygen and nutrients. Umbilical artery Doppler (UAD) provides information on the placental circulation indirectly (Almstrom 1992), in particular the presence or absence of end diastolic frequencies (EDF). With absent or reversed EDF the fetus is likely to be hypoxic or even acidotic. Absent EDF increases the perinatal mortality by a factor of four, and reversed EDF a factor of almost 11. Associated morbidity includes cerebral haemorrhage, fetal anaemia and hypoglycaemia (Karlsdorp 1994). Overall the antenatal use of umbilical artery Doppler to time delivery compared with the cardiotocograph (CTG) reduces perinatal mortality by 38% and allows appropriate selection of cases, reducing the number of emergency caesarean sections for fetal distress. However EDF may be absent for up to 4 weeks before the CTG becomes abnormal, so we need to refine the timing of delivery.

The Growth Restriction Intervention Trial (GRIT) study (The GRIT study group 2003 and 2004) was a randomised study of delivery within 48 hours versus delay in a group of fetuses with abnormal UAD in whom the obstetricians were uncertain when to deliver. 547 babies at 24-36 weeks gestation were recruited; of these 196 were in the 24-30 week period. 238 had absent or reversed EDF, and of these 108 were below 30 weeks. There were more stillbirths in the 'delay' group and more neonatal deaths in the 'delivery' group. The overall mortality was similar in both groups, which tended to confirm that the obstetricians' uncertainty was appropriate. There was no statistical difference in the morbidity between the two groups, but a trend towards increased periventricular leukomalacia in the 'delivery' group.

Middle cerebral artery (MCA) Doppler allows an assessment of blood flow to the brain. An increased flow indicates that the fetus is preferentially diverting blood to the brain to maintain cerebral oxygenation and thus we conclude that the there is a reduced oxygen supply available to the fetus. This redistribution precedes CTG abnormality by about 2 weeks.

Venous Doppler of the ductus venosus can help further refine the fetal reserve in IUGR. The ductus venosus diverts blood flow from the right to the left side of the heart, preferentially directing the oxygenated blood returning from the placenta to the upper body and brain. Changes of increasing hypoxia and acidosis are seen in the wavefor, with reversal of the 'a' wave being a late and preterminal change; it is unclear whether we should wait until this late stage before delivering. When computerised CTG assessment, looking at short term variation (STV), was evaluated along with ductus venosus Doppler the fetuses where both parameters were abnormal had the worst outcome; those with only abnormal ductus venosus had a higher perinatal mortality than those with only abnormal STV. As the study was not randomised it is difficult to draw strong conclusions, and the findings may merely represent the association with a more severe clinical course; nonetheless the combined examinations could be helpful in making the decision when to deliver (Hecher 2001).

So when do we deliver? Gestational age will still be critical in determining the timing of delivery, and birth weight compatible with viability will be a significant factor. The GRIT study gives additional information to consider in this situation. Are we going to wait, risking intra-uterine death, or undertake difficult CS, delivering a baby which is very likely to die, or if it does not carries a high probability of severe impairment of health in the future? Such decisions are best made on a team basis, with the obstetrician, neonatal staff and the parents, who certainly need to be supported. These are very tough decisions both for the professionals and for the parents who, when the professionals are in equipoise, have tended to favour delivery, wishing to see their babies born alive.

References.

Lucey JF, Rowan CA, Shiono P, Wilkinson AR, Kilpatrick S, Payne NR, Horbar JD, Carpenter J, Rogowski J, Soll RF. Fetal Infants: The Fate of 4172 Infants With Birth Weights of 401 to 500 Grams-The Vermont Oxford Network Experience (1996-2000). Pediatrics 2004; 113:1559-1566.

Costeloe K, Gibson AT, Marlow N, Wilkinson AR. The EPICure study: Outcome to discharge from hospital for babies born at the threshold of viability. Pediatrics 2000 Oct; 106(4):659-71

Wood N, Marlow N, Costeloe K, Gibson AT, Wilkinson AR. Neurologic and developmental disability following extremely preterm birth. New England Journal of Medicine 2000 Aug 10;343(6):378-84.

Wood N, Hennessey EM, Marlow N, Costeloe KL, Gibson AT, Wilkinson AR. The EPICure study: growth and associated problems in children born at 25 weeks of gestational age or less. Archives of Disease in Childhood Fetal & Neonatal. 2003; 88(6):F492-F500

Marlow N, Wolke D, Bracewell M, Samara M. Neurologic and developmental disability at 6 years of age following extremely preterm birth. New England Journal of Medicine 2005 (in press)

Almstrom H, Axelsson O, Cnattingius S et al. Comparison of umbilical artery velocimetry and cardiotocography for surveillance of small-for-gestational age fetuses. A multicenter randomised controlled trial. Lancet, 1992, 340: 936-40.

Karlsdorp VHM, van Vugt JMG, van Geijn HP, Kostense PJ, Arduini D, Todros T. Clinical significance of absent or reversed end diastolic velocity waveforms in umbilical artery. Lancet 1994; 344: 16648

GRIT Study Group: P Howie, D Field, et al. A randomised trial of timed delivery for the compromised preterm fetus: short term outcomes and Bayesian interpretation. BJOG 2003, 110:27-32

GRIT Study Group: J G Thornton, J Hornbuckle, A Vail et al. Infant wellbeing at 2 years of age in the Growth Restriction Intervention Trial (GRIT): multicentred randomised controlled trial. Lancet 2004, 364:513 - 520

Hecher K, Bilardo CM, Stigter RH, et al. Monitoring of fetuses with intrauterine growth restriction: a longitudinal study. Ultrasound Obstet Gynecol. 2001; 18:564-570.

Long term outcomes of prematurity.
Professor Neil Marlow (NM), Professor of Neonatal Medicine, Queen's Medical Centre, Nottingham.

The Nuffield Council for bioethics issued a consultation document: the working party are considering the ethics of prolonging life in the fetus and the newborn. In 1995 we began collecting data on all extremely preterm - 20-25 weeks - births in Great Britain and Ireland - the EPICure study. We have followed the health experiences of these babies through neonatal intensive care and subsequently at 30 months and six years; we found that one half of them were unharmed, a quarter had severe disabilities, and a quarter had disabilities of uncertain outcome. Rates of impairment are high among extremely preterm infants and conventional analyses may understate the problem. At age six years numbers of parents responded to our approach by saying that they understood that their children had some disabilities, but they did not wish these to be identified and so make the children subject to special assessment at school; as a result our observations must underestimate the incidence of disability in these children. Boys are two-and-a-quarter times more likely to be disabled by cerebral palsy (CP) than girls; among the less severe disabilities are low muscle tone, squints, and hearing difficulties.

In the study group it seemed that chorioamnionitis protected against dying and against CP. However, vaginal breech delivery doubles the risk, and other factors in the neonatal period increase the dangers significantly: these include how ill the baby is, transfer to intensive care, severe abnormalities in the ultrasound scan of the brain, and long courses of steroid medication, a practice now discontinued. Genetic factors have now been identified which may modify and aggravate the damage done by infections.

The six year assessment included cognitive scores; the comparison group of children with a normal birth history showed no difference between boys and girls. For the very premature babies the sex difference becomes more significant than the gestational age. Only one third of these children will perform on a par with the comparison group. Should our concern for them be with their physical disabilities (24%), or with the learning difficulties (46%)? During counselling, which needs to be undertaken by experienced members of the team, parents have a great problem coming to grips with these issues.

Much as we wish to increase comfort and minimise pain for babies in neonatal care, there is little evidence that this alters the outcome. Nonetheless the effort is worthwhile on humane grounds, and the effects of forms of communication with developing babies and improvement of parent interaction with them are being explored. The interventions which have been tried have included during the intensive care phase, non-nutritive sucking and changes of position, during convalescence maternal support and auditory stimulation, and through infancy Portage, physiotherapy and playgroups. Of these only Portage showed any benefit, and then only in babies of birthweight under 1250 grams. The Portage programme is home based, provides practical advice, complements medical treatment, and is provided largely by volunteers. Unfortunately any early benefit is no longer apparent at age five.

The physical development of the brains of preterm infants as demonstrated by ultrasound does not achieve that seen in babies born normally at term, and I suspect that this deficiency underlies some of the later problems. Brain injury, genetic, inflammatory and social factors are also important and cognitive, behavioural and learning disabilities frequent. Intensive early interventions have so far brought little benefit, and other methods require investigation. Improving rates of impairment demands a global approach to the care of the preterm child. We continue to try to reduce the uncertainty with which parents taking their babies home after intensive care are faced.

Bibliography. Lucas A, Morley R, Cole T. Randomised trial of early diet in preterm babies and later intelligence quotient. Brit Med J 1998; 317:1481-7.

Whitfield M. Psychosocial effects of intensive care on infants and families after discharge. Seminars in Neonatology (2003) 8: 185-193

Marlow N. Neurocognitive outcome after very preterm birth. Arch Dis Child Fetal Neonatal Ed 2004; 89(3): F224-8.

Marlow N, Wolke D, Bracewell M, Samara M. Neurologic and developmental disability at 6 years of age following extremely preterm birth. New Eng J Med 2005 352: 9-19

Wood N, Gibson A, Marlow N, Costeloe K, Hennessy E, Wilkinson AR. The EPICure Study: Perinatal antecedents and correlates of disability in extremely preterm children. Archives of Disease in Childhood 2005; 90: F134-F140

The epidemiology of prematurity and pain in the neonate.
Professor Clea R. Leone (CRL), Consultant Neonatologist, Associate Professor , Department of Paediatrics, University of Sao Paulo Medical School, Hospital Das Clinicas, Brazil.

Worldwide 130 million babies are born every year, and 4 million of them die in the first four weeks of their lives, 38% in the first month and 28% in the first week. 27% of these deaths are associated with preterm birth. Whether these babies die early or late, whether they survive to be disabled or healthy, as carers we have to consider the pain of the family and the pain of the newborn.

The causes of death in newborns are infections (36%), preterm birth (27%), perinatal asphyxia (23%), and congenital (7%). An adequate health programme requires the continuous assessment of mortality, morbidity and outcome indicators, and reliable statistical records, but the Brazilian Health Ministry faces great difficulties in gathering statistics: the standard of neonatal care is variable and much data goes unrecorded in this vast area. The Brazilian Neonatal Research Network, with eight neonatal university units contributing, has been responsible for the continuous assessment of neonatal statistical records.

Over a 2-year period to December 1999 in our study 1400 babies of very low birthweight (less than 1500 G) were born. 75% of the mothers had some antenatal care, with an incidence of hypertensive disease of 41%; the mean caesarian section rate was 61%. Respiratory distress syndrome and sepsis were very common in these babies at 42%, while the incidence of bronchopulmonary dysplasia and necrotizing enterocolitis was low; the mean length of hospital stay was 8 weeks, exposing the babies to infection, by far the most common cause of late deaths. Our neonatal mortality rate was over 27%, early deaths being almost three times late deaths; the figures compare well with those for 11 Latin American countries provided by NEOCOSUR. (This is a network comprised of the voluntary association of Neonatal Intensive Care Units from a group of South American countries whose primary interest is the improvement of neonatal care and outcome to this region.)

Consider the pain of the family and the baby. Families into which a very preterm baby is born experience shock and grief, then denial and guilt, and when they can take their babies home, acceptance; it is only after a long period with their child living at home that a final adjustment is made. We hold weekly meetings between the multidisciplinary team and parents, who are encouraged to share their experiences with their babies and in the unit. We reassure them about the care of the babies at home. Almost half of the parents who responded to questionnaires set by neonatal units in America and the UK regarded medical procedures to be the cause of their babies' pain: skin punctures, the insertion of tubes, tests and treatments and illnesses. 64% needed more information, and 34% wanted more involvement.

The pain of the prematurely newborn is the result not only of their ejection from the intra-uterine environment, but also of the conditions in which we care for them, and of the procedures which we use in trying to help them to survive and be healthy. It may be necessary to use medicines for the relief of their pain, although we have discovered that the use of analgesic drugs for these babies is little understood and used in our state. In the unit in which I work we have adopted policies of humanization in the hope of minimizing the pain. Parents may visit their babies at any time to be close to them; they are encouraged to touch their babies, to hold them close, skin to skin (kangaroo care), and to establish breastfeeding if possible.

Discussion.

(NM) When discussing possible outcomes for their babies with parents I summarise them on the lines of my talk. I point out that we can start intensive care, and that we can also discontinue it; the law is rarely invoked to oppose this unless by an outside agency. They need to know that there is a 25% disability rate for VLBW, but I only go into details if specifically asked to do so. However we are fortunate in Nottingham in that we can tell parents that the overall disability rate for babies under 1000G is under 10%. (SB) If there is an opportunity to do so I discuss with a mother before her delivery the possible outcomes of the decisions we're going to take. (CL) Brazilian parents are informed of possible outcomes, but there are no circumstances when they will agree to the withdrawal of treatment, and in any case Brazilian law does not support this. As a result some babies of very low birth weight or those with congenital disorders incompatible with life hang on to life in the neonatal unit for long periods before dying.

(NM) Parents are naturally very anxious when they have lost a baby in these circumstances, and they need close observation and a lot of support in an ensuing pregnancy. It is not reassuring enough to know that the likelihood of a premature birth is doubled, but that this still leaves them more than likely to carry their baby to term. When a VLBW baby dies after a long and difficult neonatal course the parents often decide against further pregnancies. (SB) Mothers who already have a child disabled in this way carry a huge emotional burden, and unfortunately obstetrics is unable to provide firm predictions during the next pregnancy.

References.

Chermont AG, Guinsburg R, Balda RCX, Kopelman BI. What do pediatricians know about pain assessment and treatment in newborn infants? J Pediatr (Rio J) 2003;79(3):265-72

Zupan J. Perinatal Mortality in Developing Countries. NEJM 2005 352:2047-2048

Bang AT. Reducing Neonatal Mortality at the Community Level. (Presentation at the Bill & Melinda Gates Foundation, Sept. 18, 2002)

Fathers experiences following preterm birth.
Kevin Hugill (KH), Lecturer-Practitioner (Neonatal Services), University Hospitals of Leicester.

Attention has been paid to the experiences and needs of mothers of preterm infants but fathers have received relatively less detailed study. The aim of this study is to explore the experiences of fathers in a neonatal unit and add to the sociological understanding of these experiences in relation to emotion work, masculinity and organisational culture. This presentation reports on some emerging findings arising from an observational study in a neonatal unit and a number of in-depth interviews with fathers of preterm infants.

I found that the fathers rarely expressed comments about the care; they might approve of the intensive care unit, but they invariably said "There's nothing there for us". Some of the fathers overcame their initial reluctance to be interviewed, due to fears that I came from social services or would be breaking bad news, and cooperated willingly; others refused point blank.

Some fathers reflected back to their own childhoods; or if this was not their first baby, expressed a wish that they might be better fathers this time round. Some saw their own fathers as good role models, while others admitted that their fathers played little part in child rearing; as one father remarked "My dad was a McDonald's dad, treats and the like. He never bathed me."

Several themes emerged from the data, I have selected some sub-issues for this presentation.

Space.
The fathers appreciated the professionalism of the staff, although they found the lack of space and the security arrangements irksome. "At first, every noise that went off you were looking around". "It's a slightly depressing place actually".
Culture.
The parents would pick up on the culture of the place, for example leaving or staying depending upon which consultant was visiting. One assertive father would use the internet if he did not understand something, and was prepared to confront the doctors; it was clear that some of the staff felt that he was a threat, and found him "creepy". Although the other fathers were unaware of this, the staff expressed a low opinion of a man known to have a history of domestic violence. And: "The staff might think that we are not good parents because we're not here long enough" - from a father who had a difficulties with public transport.
Workload.
The number of babies present on the unit at anyone time was a continual feature of staff conversations, issues of occupancy and workload featuring almost daily and a cause of stress. Staff were frequently overheard saying. "Are we open or closed?" Fathers themselves were very aware of issues of workload but tended to focus on their own perceived needs; as one father said "We were lucky to be here. Jill's consultant insisted that she wasn't fit to be transferred, although the unit was well over capacity." Fathers wanted their partners and babies to be close to home, and were naturally unaware of the regional view which the doctors had to take.
Front stage.
Most admissions being unplanned left many families unprepared, which often led to crisis within families. Fathers were the first members of a family to make contact with the neonatal unit, and they acted as the main conduit of information to the wider family. They often found this very stressful. "It was a bit daunting, all of sudden there's this baby and all these wires on him."
Back stage.
Later as mothers' health improved the dads are often in and out, taking away rowdy siblings to occupy them, or making space for grandparents to visit. "I take Susan to the park so that the wife can come here and spend some time without being bothered by a two-year-old."
Off stage.
Whilst later, "I've got to go back to work, so I'll be a bit off stage from next week."
Doing and watching things.
Some of them like to be involved with baby care, and sometimes mothers themselves suggest this. "I like to get involved, even with the kangaroo care." Others stereotypically preferred to opt out, believing that they were being watched. They may be bored by the inactivity of the babies and many looked forward to playing football with them when they were older. The staff thought that the men watched the machines because they like hi-tech stuff, whereas the men claimed to be watching monitors to be reassured that the babies were all right.
Being in control.
Some were able to express their emotions, such as joy at a live birth, while others typically bottled them up. Sometimes they limited the information they gave their partner about procedures to which the baby was being subjected, in order to spare her feelings. And for some there would be the trip down the corridor for a cry in the toilet. "It's been a traumatic fortnight, with our lives in limbo." "It's shattering; I was in shock."

The interview experience can lead to a readjustment of relationships, with the partner, other children, family and even friends - those who had been supportive, with whom they plan to strengthen the friendships, and those who had been less so, whom they might well drop. Some would express their determination to engage in fatherhood: "I'm going to be there for my child, keeping in work so I can support him". "The journey ahead is going to be the best bit".

The behaviours of fathers, mothers and health care practitioners within a neonatal unit seem at first to form a complex web of both written and unwritten rules and expectations. This study has begun to reveal the underlying structures of that web, and these early findings will be used to inform further interviews with fathers and additional methods of data collection.

Caring for neonates: baby-centred care?
Professor Priscilla Alderson (PA), Social Science Research Unit, Institute of Education, University of London, with Dr. Joanna Hawthorne (JH), Centre for Family Research, University of Cambridge (Co-author).

The 2004 National Service Framework for children, young people and maternity services promises to give children and parents increased information, power and choice over the support and treatment they receive. The intention is to integrate and co-ordinate care centred on the needs of each child and family, not on the needs of the organisation, and to encourage and support their views and choices, listen and respond to them. Care is to include psychological support for parents, and staff who provide treatment which enhances the baby's future life, health and abilities, and emotional care of the baby as a person. Do children have the ability and the right to be involved in planning their care from birth? This implies a theory of baby-centred and baby-led units providing holistic multidisciplinary care. The past 12 years have seen great changes in the care of babies, not only in their treatment but also in terms of the law and ethics, risk, limitations on staff working hours, budgets and management.

We conducted an ethnographic study of a sample of babies cared for in four NICUs, with interviews with their parents and 40 senior staff, about how staff and parents share information and the care of the babies. It was funded by The Wellcome Trust. Neonatal staff and units vary in the ways they define and promote the best neonatal care, ranging from mainly medical models of care, to more interdisciplinary and baby-centred ones. Some NICUs have more formal methods of planning and providing the latter approach; it involves specific staff training and support to sustain an ethos of listening to and learning from babies, besides imaginative approaches to limited time, space and resources, and to conflicting aims and values. In turn, the methods depend on specific definitions of baby-centred care and theories about babies as persons, which clarify the barriers, solutions, priorities and aims. There is nothing more practical than a sound theory.

One nurse advised the mother of a very premature baby to speak to her at their first meeting. The baby responded to her mother's voice and the nurse said: "This is the one voice she has known for a long time; now she can have a sense that you're still here." Observations show that babies remember and prefer their mothers' voices; they are already expressing views and choices. Breastfeeding is an example of how healthy babies can run an important aspect of their lives.

In 'baby-led' NICUs light and sound levels are kept low and there are sound reducing materials. Space is used imaginatively and babies are moved out of incubators as soon as possible to promote contact with their parents. Alcoves are provided for babies to explore relationships with their parents, for whom easy chairs give a positive welcome. Family and staff rooms are near the unit, and there are no rooms full of spare incubators.

A mother told how she was learning more and more about her baby. "He dislikes anyone playing with his feet, same as his father. I see a lot of fighting spirit, and if I talk to him while he is having blood taken he calms down." Some units used nesting, positioning the baby in a uterus-like space, with knowledge and enthusiasm, while others do not, or they may merely pay lip-service to it.

When bathing is a baby-led relationship experience babies are wrapped up well and lowered gently into the water; they express when they are ready to spread their limbs and enjoy it. "He was so relaxed, and he cried when I took him out." The pain of some procedures can be relieved if nurses talk the babies through the procedure, contain them sensitively and comfort them afterwards.

Are babies contributors to neonatal care? Certainly, by rewarding caring adults with the gaze which moves and intensifies the relationship with their parents. They elicit the extremes of adult care, and show how compassionate our society can be. Partners in their health care, they inform and improve standards of care in baby-led units where parents and staff learn from their views and responses; it is for the NICU to balance the tension between hi-tech science and the cosy nursery. The beliefs that people have around the nature of a baby - body, person, or sentient being who is a partner in gaining in health and growth - these beliefs set their policies, practices and priorities. How many of us see in the incubator a resilient powerful little person who is a partner with the adults in care?

Dr. Hawthorne continues: Belonging: Parent-infant relationships around transfer between neonatal units.

There are significant issues for parent-infant relationships around transfer of their babies between neonatal units; we studied 65 babies, of which 20 were transferred. Often babies are transferred due to the shortage of fully staffed cots. There is a clear difference between units in the value placed upon baby-centred care, but all the four units which we studied used elements of the Neonatal Individualised Developmental Care And Assessment Programme (NIDCAP) and the Neonatal Behavioural Assessment Scale, although few neonatal staff are trained in the use of these assessments.

Parents form relationships with staff in these units, often based on trust and preferences, and they quickly become used to the way a unit works, and how their baby is treated by a particular nurse or doctor; they need to know that the staff like their babies, and this may determine the way they relate to members of staff, hoping to optimise care. Parents understand that they have to hand over the care of their babies to the staff of the neonatal intensive care unit, but as the condition of the babies improves they start to want to take on some of this care, and this may be seen by the staff as a problem for them. When it is the time to take their baby home perhaps they need to demonstrate to the staff that, knowing their baby very well by now, they are ready to take possession of him again, though feeling that they must comply with the hospital routines and protocols.

The transfer of a baby to another unit can be stressful for parents, who need to work out how the staff there operate, and want to ensure continuity of care and good feeling with the staff. Parents also need to be recognised as knowing their baby well and being familiar with the treatments he has received; they feel that they understand the baby's point of view, and need to be recognised as being up-to-date with his progress.

This attitude is well exemplified by the comments of parents: "She didn't really need the heated mattress because she had been holding her temperature quite well, so they cooked her and then took it off when they realised that she didn't need it." "Eventually I was told that they had a feeding plan for her, a bottle every other feed, but she had only been getting a bottle twice a day when I went in". It is upsetting for parents to have their baby removed from the unit where their competence is recognised to one where the staff take over the baby's full care and don't communicate with them. "The other unit was very quiet; this one is so hectic. There it was one-to-one care, and nice to talk to one person about him". "In the smaller unit they had more time to explain things, but here they change every week and it was a while before the consultants came to speak to you".

This implies that when a baby is transferred from unit to unit he and his parents should be treated differently than they were when first admitted directly. Planning for transfer would benefit from incorporating the parents' and babies' voices about their emotional needs at this time. A joint parents, staff and baby care plan is needed, paying attention to the timing of feeds, the pacing of the care, and the babies' preferences for holding, touching, positioning, light and noise, as proposed by NIDCAP.

References.

Alderson P, Hawthorne J, Killen M. 2005 The Participation Rights of Premature Babies. International Journal of Children's Rights. 13: 31-50

Alderson P, Ehrich K, Hawthorne J, Killen M, Warren I. 2004 'Thinking about the future. Supporting parent-baby relationships in the neonatal unit - 2005'.

Discussion.

There seem to be two steps in a unit's becoming baby-centred. First the the neonatal nurses become informed of the principle at study days, and then senior members of staff have to come on board with encouragement and support. The logistics of making every moment of a baby's life, whether he is to survive or not, as comfortable as possible require detailed work in ensuring that the unit has a constant supply of necessary equipment such as clothes and bedding; skills, time, and money are involved in this, and the importance of always to be thinking of the baby's needs. Staff attitudes are key.

For the experience of transfer to be optimised for baby and parents, the receiving unit needs to discover from the parents what their expectations are, how they assess their babies' coping strategies and behaviour, and what treatment the baby had been receiving.

Imagine the disappointment when a baby is transferred from a baby-centred unit to the opposite; the standards have to be raised throughout the service so that this cannot happen. Parents can only guess at the standards of medical care, but they will infer them from the quality of the personal care.

Organised emotional support for staff, and indeed for parents, is still all too rare. It is a big step for nursing and medical staff who have hitherto done their best for babies in the technical sense to move to the point where they are taking on the pain of these small babies. There is always resistance to new ways of working until there is belief in them, and the staff feel that they own them; achieving compassionate baby-led care needs personal and group discussion. This is still a minority approach; in some units two or three nurses are struggling against odds to practise it, but we must respect the feelings of those who disagree and listen to their reservations and help them work through them. There are huge difficulties in reordering of priorities, and these are not helped by differing schemes of training; NIDCAP largely ignores the baby-led approach, for example, and its publications need contributions from people trained in it. We do not question the central importance of helping these babies to survive with intact health.

A delegate questioned the value of NIDCAP, the two-year training and its expense; the observational skills are not to be decried, but the programme needs to become informed with the humane approach also.

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