Chapter Contents
Part 1: Ethics 103
Introduction 103
Plurality of moral beliefs and ethical approaches 103
The value of life of the newborn 103
Recent philosophical challenges 103
Best interests 103
Balancing burdens and benefits 104
Withholding and withdrawing life-sustaining treatment 104
Neonatal euthanasia 104
Quality of life and disability perspectives 104
Resuscitation of extreme preterm 105
Conclusion 105
Part 2: The law 106
Introduction 106
Clinicians and litigation 106
Maintaining professional standards 106
Handling adverse events, mistakes and complaints 106
Appearing in court 106
Situations with a high risk of litigation in neonatology 106
General 106
Resuscitation 107
Early neonatal encephalopathy and brain damage 107
Preterm brain injury 108
Jaundice 108
Hypoglycaemia 108
Retinopathy of prematurity 109
Deafness 109
Infectious disease 109
‘Missed’ abnormalities at the neonatal examination 109
Vitamin K-deficiency bleeding 109
Scarring and iatropathic problems 109
Relations with parents 110
The therapeutic alliance with parents 110
Informed consent 110
Which procedures require written consent? 110
Who is able to give consent? 110
Use of interpreters 111
Documentation of counselling, and which risks to mention 111
Refusal of treatment 111
Discontinuation of futile treatment 112
Unrealistic expectations regarding treatment 112
Negligence 113
Criminal cases 114
Child protection law 114
Ethics
- John Wyatt
Introduction
All medical care is based on a primary moral commitment – a belief in the intrinsic value of human life. In this respect the practice of neonatology is no different from any other branch of medicine. It starts from a commitment to preserve and protect the life, health and well-being of newborns. It is this commitment that has motivated and driven the remarkable advances which neonatal medicine has achieved in the last 50 years. Yet these advances have created complex, troubling and controversial dilemmas for clinicians, for parents, for healthcare institutions and for the law courts.
The aim of this chapter is to provide a brief review of some of the moral and ethical issues raised by the practice of neonatology and provide references for further study.
Plurality of moral beliefs and ethical approaches
Modern societies reflect a plurality of moral beliefs, assumptions and ‘world views’ and ethical discussion is inevitably controversial and contested. There is little or no consensus amongst modern moral philosophers and ethical approaches range from consequentialist (in which the consequences of an action determine its morality), deontological or duty-based approaches, and virtue ethics, in which the character of the moral agent is central.
Despite the plurality of foundational beliefs and ethical approaches, it is frequently possible to reach broad consensus about whether particular clinical actions are morally right or wrong. We are all agreed that it is right to listen to parents, to treat them with respect and to seek their consent for giving invasive treatment. We are all agreed that it is wrong to inflict painful and unpleasant medical procedures on babies unless there is a realistic prospect that they can bring some benefit. As health professionals we have a responsibility to try to come to consensus on substantive ethical issues wherever possible, even if we disagree about the reasons behind our shared conclusions.
The value of life of the newborn
A very long-standing ethical debate concerns the fundamental value of the life of an individual newborn. The infanticide of unwanted, diseased or malformed newborns has been a common and socially approved practice in many cultures ( ). Infanticide and the exposure of unwanted newborns was a common practice in the classical Greek and Roman world and the oldest extant textbook on midwifery, written by the first-century Roman physician Soranus, has a chapter entitled, ‘How to recognise the newborn that is worth rearing’ ( ).
In the history of the west, a marked change in the attitude to newborn lives can be traced to the rise of Christianity. Jewish and Christian teaching emphasised the intrinsic value of life of all human beings, and linked into the imago dei, the image of God which each human life carried ( ). The idea of the sanctity of all human life sprang from the Judaeo-Christian ethical tradition but has been incorporated into national and international codes of law and human rights.
The UN Universal Declaration of Human Rights ( ) and the UN Convention on the Rights of the Child ( ) both enshrine the intrinsic value of newborn life and the legal rights which every newborn holds. The latter upholds the ‘inherent right to life’ of every child from the moment of birth and lays a duty on member states to ‘ensure to the maximum extent possible the survival and development of the child’.
It is clear that there is a stark difference in both national and international law between the legal rights of the newborn and those of the fetus. In most jurisdictions the fetus has no separate legal identity and cannot be the bearer of legal rights. But from the moment of birth, the newborn infant comes under the full protection of national and international legal conventions.
Recent philosophical challenges
The concept that a newborn life has an innate or intrinsic value equivalent to that of an older child or adult has recently come under sustained attack from a group of influential philosophers and ethicists. Although their views have gained little support amongst health and legal professionals, they are widely discussed in school and university courses on ethics, and it is important that neonatologists are aware of their existence.
Michael Tooley ( ), Peter Singer ( ) and John Harris ( ) have argued that some form of self-awareness, the ability to see oneself as existing over time, is a necessary condition for having a right to life. Their views can be traced back to the thinking of the 17th-century English philosopher John Locke, who defined a person as ‘a thinking intelligent being that has reason and reflection and can consider itself as itself, the same thinking thing, in different times and places’ ( ). By this definition a newborn cannot be regarded as a ‘person’, and hence does not have an intrinsic right to life. Singer and others argue that the point at which human infants acquire a minimal sense of self-awareness is an empirical question which can be defined from psychological experiments but may not occur until the end of the first year of life. From this perspective a newborn infant should be regarded in the same way as the fetus as a ‘potential person’, a being whose life, although still of some significance, is intrinsically of less value than the life of an older child or adult.
Although logically defensible, this perspective has not gained significant currency amongst clinicians, and existing UK ethical guidelines from the ), ) and ) support the international consensus and argue that newborns should be treated with the same degree of respect, care and protection which we offer to all other patients. The guidance provided by the ) also supported the right of newborns and argued that ‘a child of 6 days, months or years was worthy of equal consideration’.
Best interests
Doctors have a moral duty towards each individual patient to attempt to preserve life, restore health and prevent disease. Although the newborn’s right to life is respected, all agree that there is no moral duty on doctors to provide every possible treatment in every possible clinical circumstance. Instead every action and treatment should be oriented towards the best interests of the individual child.
Although the phrase ‘best interests’ is intuitively attractive, it is notoriously vague and has been subjected to sustained legal and philosophical analysis. It is generally agreed that the determination of best interests involves the clinician in a difficult task of balancing and weighing a range of factors and opinions. General Medical Council guidance states that this should include the views of the parents and their cultural, religious or other beliefs and values, and the views of other healthcare professionals involved in providing care to the child. Preference should be given to treatment choices which least restrict the child’s future options ( ).
An assessment of best interests may also include, firstly, the current experience of the baby, especially the degree of pain and distress and the ability of the healthcare team to control this, and, secondly, the anticipated long-term outcome. The perspective, values and goals of the parents may be at variance with those of the health professionals and this may give rise to conflict and misunderstanding. In addition there may be disagreements and differing perspectives amongst the members of the health professional team, and it is important for these differences to be aired and, wherever possible, a consensus position reached. Where there is continuing disagreement and debate it is often helpful to request a second opinion from an experienced external clinician. The baby is reliant on the parents and the health professional team working in partnership, and every effort must be expended to develop and sustain a relationship of mutual understanding, respect and trust.
Both UK law and professional medical guidance seem to indicate that, where there is a conflict of interests, it is the child’s interests which should, in principle, trump all others. Others have argued that the interests of the baby must not be allowed to take precedence over the interests of the parents and other siblings. The NCBWP recommended that those who make decisions in respect of a child should carefully consider the interests of all those who may be affected, especially other family members, old or young ( ). However, national and international statutes suggest that, in the event of a direct conflict of interests, the baby’s best interests should carry greater weight than those of the parents or carers.
Balancing burdens and benefits
A traditional and helpful approach to ethical decision-making in medicine is the balancing of burdens and benefits, and this balance-sheet approach has often been adopted in cases which have come before the law courts. All treatments carry potential benefits to the patient but they also incur burdens and risks. The essence of ethical practice is to ensure that the potential benefits of all treatments offered should exceed their burdens. Any proposed treatment should be assessed within this framework, considering a range of factors – physical, emotional, social – and both short-term and long-term outcomes. The balance-sheet approach provides a helpful framework for ensuring that all aspects of a treatment decision are highlighted and incorporated into the decision-making process ( ).
Withholding and withdrawing life-sustaining treatment
If life-sustaining treatment is futile because death is inevitable, or the treatment is excessively burdensome relative to the likely benefits, then there is no ethical duty to commence or continue treatment. It is generally agreed that there is no fundamental moral difference between withholding life-sustaining treatment (such as resuscitation at birth) and withdrawing treatment which has already been commenced, although the psychological and emotional experience for staff and for parents may be different ( ). Where there is genuine uncertainty about the likely benefit of invasive treatment, it may be appropriate to commence ‘provisional’ intensive support, whilst explaining to the parents that support will be withdrawn subsequently if it becomes apparent that there is no response to the treatment and that the prognosis is hopeless. On occasions parents may refuse to give consent to the withdrawal of life-sustaining treatment despite the unanimous conviction of the healthcare team that the treatment is futile or excessively burdensome. Parents need to be treated with respect, patience and empathy but, if no agreement can be reached, the primary ethical duty of the staff must be to protect the best interests of the baby, if necessary by recourse to legal proceedings.
Neonatal euthanasia
The mainstream approach to medical ethics has always drawn a sharp distinction between the withdrawal of life-sustaining treatment and an act of intentional killing or homicide. The distinction is not only one of an act of omission versus one of commission but is also based on the underlying intention of the act. When futile life-sustaining treatment is withdrawn, the intention is not to kill, but it is to limit the continuing harm and injury created by the treatment. If the infant continues to live following withdrawal of treatment, the medical goal is not to ensure that death occurs as soon as possible, but it is to provide palliative care, symptom relief, including the use of analgesic and sedative medication, and holistic care addressed to all the needs of the infant and family.
In 2005 a group of paediatricians from the Netherlands published a set of medical guidelines (known as the Groningen protocol) which supported the active ending of newborn life, using lethal drugs, under specified conditions ( ). They suggested that intentional ending of life should be restricted to infants with ‘a hopeless prognosis’ who were likely to have a life ‘full of suffering’, but who were physiologically stable and not dependent on intensive support technology. The Groningen protocol has created considerable discussion and controversy but the active ending of newborn life has been explicitly rejected by professional and regulatory bodies in the UK and in most other national jurisdictions. Instead emphasis has been placed on the importance of skilled palliative care, effective symptom control and ensuring the active involvement and support of parents and other family members in end-of-life care ( ). There is a growing consensus that muscle relaxant agents have little or no role in palliative care, and their use may be positively unhelpful as they mask the clinical signs of pain and distress.
Quality of life and disability perspectives
Although it is often suggested that it is possible for health professionals and families to predict the future ‘quality of life’ of the critically ill newborn, there are major theoretical and practical problems with this concept. In particular it is often assumed by health professionals that a neurological or cognitive impairment translates automatically into a loss of well-being or life satisfaction. Yet empirical studies of health-related quality of life in ex-preterm survivors challenge this assumption ( ; ). Many disabled adults assert that many of the most significant factors which impair their life experiences are the social attitudes and political responses to their disability, rather than the biological impairment itself. In addition there is empirical evidence that health professionals and parents consistently undervalue the ‘quality of life’ of disabled adolescents and adults ( ). The unthinking use of ‘quality of life’ concepts in clinical decision-making is often unhelpful, and may be used as a cloak for prejudices and negative stereotypes about the lives of disabled people. Instead greater attention should be paid to recording and assessing the real-world subjective life experiences of babies, children and adults who have undergone neonatal intensive care.
Resuscitation of extreme preterm
Considerable attention had been paid to the ethical and practical clinical issues surrounding the resuscitation of extremely preterm infants at the limits of viability. The NCBWP guidelines use a week-by-week analysis depending on the gestational age of the infant at birth ( ). However there are a number of other clinical variables, such as birthweight, twinning, gender and exposure to antenatal steroids, which are of great importance in influencing the prospects of survival ( ). Hence decisions about the appropriateness of resuscitation should be carefully individualised to the unique patient and family context rather than depend on the unthinking use of published guidelines or clinical algorithms. Wherever possible detailed discussion with parents should be carried out before delivery and neonatologists should demonstrate attentive respect for the parents’ beliefs and values, with the aim of achieving a consensus on appropriate action. If no agreement can be reached, clinicians have a moral and legal duty to act in an emergency in what they perceive to be the baby’s best interests. As discussed above, preference should be given to treatment choices that least restrict the child’s future options. This suggests that, in the presence of genuine uncertainty, resuscitation followed by a short period of provisional intensive care to allow detailed assessment and discussion would be appropriate.
Conclusion
Neonatology enshrines a primary moral commitment to the welfare and best interests of every newborn infant. Yet within the challenging context of a pluralistic society, it may be increasingly hard to find consensus on how this translates into practical decision-making in the intensive care unit. The perspective, values and goals of the parents may be at variance with those of the health professionals and this may give rise to conflict and misunderstanding. Yet the baby is reliant on the parents and the health professional team working in partnership, and every effort must be expended to develop and sustain a relationship of mutual understanding, respect and trust.
The law
- Bertie Leigh
- Janet M Rennie
Introduction
When neonatal medicine emerged as a distinct subspecialty, medical ethics was at a similar stage of infancy. Most decisions were assumed to be matters of ‘common sense’ and the law was widely regarded as another country where they did things differently. Today it is accepted that neonatologists have to take profound decisions of public importance which are likely to be subject to formal analysis in the courts. Decisions taken at the outset of a baby’s life often have an impact decades later. The baby who is the subject of the decision may be unable to play any part in the discussion today, but as an adult will be able to ask pointed questions of the erstwhile clinician. In this chapter we will discuss some of these issues and give general advice as to how paediatricians should conduct themselves in those areas of their practice which are likely to bring them into contact with the law.
Clinicians and litigation
Maintaining professional standards
Neonatologists must maintain their own skills and the competence of their teams. Remaining ‘in good standing’ with the Royal College of Paediatrics and Child Health (RCPCH) involves participating in revalidation, appraisal and continuing professional development. Consultants must ensure that the neonatal unit has clear written guidelines and adequate staffing, that the facilities and equipment meet current standards ( Ch. 2 ) and that outcomes are audited. Accurate, detailed contemporaneous notes must be kept: they are an intrinsic part of good care and the only part that is directly visible when the quality is called into question. Anticipation of possible litigation is not paranoia; it is good medicine to create clinical notes that record the progression of the patient in detail and make it explicit why particular decisions were taken, just as it is to obtain a second opinion in difficult cases. Intemperate remarks about colleagues and hasty judgements about areas that are not within your own competence are poor practice as well as being forensically unwise.
Handling adverse events, mistakes and complaints
Always be open and honest with the parents, but think calmly before you meet them after any adverse event. That a ventilator fails, or an intravenous infusion runs wild or a nurse makes a drug error is unfortunate, but it may not contribute to the baby’s eventual problems. Do not make the mistake of thinking that because you are being candid about a complication you should be more hasty than you would be in other circumstances to give a gloomy prognosis. Think carefully about the way in which to treat the baby so as to minimise any damage and to break bad news so as to minimise parental distress.
If parents complain about your treatment or counselling, seek the advice and support of senior colleagues, including the clinical director and service manager early on, before matters get out of hand.
Appearing in court
Understanding the legal processes outlined in this chapter will help. Sometimes a decision is made not to defend a case even when the staff involved feel that they did nothing wrong and that the adverse outcome was outside their control. There are all sorts of reasons why it is decided not to defend a case in court, and the decision does not necessarily imply that the criticism advanced by the claimant is correct. In this situation, give in gracefully and remember that giving evidence in court is not a pleasant experience for any doctor. However, if it is decided to defend the case, then be prepared to spend time and energy in preparation (reading all the notes and documents in the case) and in attending court.
In a civil court, remember that the judge is the most important person in the room. Address all your answers to him or her, not to the barrister who is questioning you. Tell the truth, in simple language, think before you start talking and speak very slowly: this gives the judge time to write down what you are saying and you time to think about your answer carefully. Do not be afraid of generating silence whilst you consider your answer. The pace of a courtroom seems very slow to those used to the frenetic activity of intensive care units. Do not engage the opposing barrister in banter, or let him needle you, or try to score a point at his expense – it is his home territory, not yours; his views are not in issue, but your objectivity is. Answer the question after due thought, preferably with a straight ‘yes’ or ‘no’; but if you feel you are being forced to answer an inappropriately closed question then do not be afraid to say ‘yes, but …’ with one concise, crisp sentence. Resist the temptation to embark on a mini-lecture. When you have finished your answer, stop. Do not fall into the tempation of embellishing or clarifying, simply because the cross-examiner waits and looks as if he expects you to do so.
Situations with a high risk of litigation in neonatology
General
Good notekeeping and clear protocols are vital, and it is important to keep copies of old protocols when they are updated because they establish the standard of care for that era. Never amend protocols by adding to them in manuscript so that it is impossible to tell when the old version was superseded: always redate and reissue the whole protocol. Do not ‘save up’ amendments or hesitate to change the protocol simply because the amendment involves only a few words. A protocol you can no longer defend in detail is a hazard to the unit and its patients. Always communicate the updated protocol to those who need to follow it and explain the reasons for the change. Cases are judged by the standards of the day, and in a rapidly advancing field like neonatal medicine it can be difficult to recall precisely when practice changed in your unit unless there is documentation.
The standards of care are those of a reasonably competent practitioner, and the courts do not expect that protocols will be changed to reflect every research finding. For a while, there was a fear that protocols would be used to drive litigation in cases where the clinical management had not followed a prescribed guideline. This is not a justification for the lack of a protocol, because in practice claimants usually succeed only when the standard of care is substandard by definitions that are common and beyond dispute. If the unit decides to deviate from a national (National Institute for Health and Clinical Excellence (NICE)) guideline the reasons for this must be clearly laid out.
Resuscitation
If a baby develops athetoid cerebral palsy as a result of damage to the deep grey matter after a short period of acute profound hypoxia in the immediate run-up to delivery, the quality and timeliness of the resuscitation will be under intense scrutiny. Minutes matter in this situation, and if the neonatal team arrive late, for whatever reason, the fact should be documented and the reason. Common problems are failure to intubate, incorrect endotracheal tube position and failure to use chest compression. It is not below a reasonable standard of care to intubate the oesophagus, but it is substandard care not to recognise it. It may not be below a reasonable standard of care for a junior doctor to be unable to intubate, but it will be if this doctor persists in the attempt too long, allowing the baby to desaturate, rather than using bag and mask and calling for help. It is substandard care to use a very small size of endotracheal tube in a term baby, or to insert it so far that it lies deep in the right main bonchus and leave it there.
A need for resuscitation does not equate to a diagnosis of ‘birth asphyxia’ and this cannot be stressed too often. Still less does it provide any basis for long-term prognostication. To act on the presumption that it does will not discharge a duty of candour but will cause needless and unwarranted distress. Use the term ‘birth depression’, for which there are a number of causes, including hypoxia–ischaemia during labour. Similarly, the term ‘flat’ is imprecise and means different things to different observers. We have seen this term applied to anything from stillborn babies through to babies who responded to blow-by oxygen after a few minutes. Similarly, ‘shocked’ should not be used to describe a baby unless there is genuine evidence of cardiovascular shock with hypotension and acidosis.
Obtain both cord blood pH results if possible and document the baby’s early course very carefully with a narrative about the condition at birth and the response to resuscitation. Remember that babies who recover sufficiently quickly to remain with their mothers are sometimes at the end stage of a prolonged period of ‘chronic partial’ hypoxic ischaemia and develop seizures at 12–24 hours.
If resuscitation has to be abandoned make sure the decision is appropriate, be sure that the baby is not left alone and treat the body with dignity at all times. Never, ever leave a baby’s body exposed and unattended on the resuscitaire and rush out of the labour ward. Initiating resuscitation in very immature babies generates a great deal of anxiety, but if stopping resuscitation appears to be the appropriate decision, supported by senior input, then fear of litigation should never inhibit clinical judgement.
Early neonatal encephalopathy and brain damage
Babies who seize in early neonatal life do not always have hypoxic–ischaemic encephalopathy, even if there was birth depression. However, there is a high risk of sequelae in this situation and the diagnosis should be pursued with vigour. Lumbar puncture and a search for infection are mandatory ( Ch. 40.2 ). Investigations should include imaging, electroencephalogram (EEG) and metabolic screening. Do not prognosticate too early, but if it is appropriate to offer to withdraw care seek the support of a colleague, and warn the parents that the baby might not die.
The first duty of the the neonatologist is to limit any futher adverse effects by maintaining blood pressure, glucose levels and blood gases. Referral for therapeutic hypothermia should be considered where a local programme exists ( Ch. 40.4 ).
Current litigation practice in the UK is dominated by claimants with cerebral palsy who ascribe their disability to hypoxic ischaemia during labour, and a key plank of their causation argument is their ability to demonstrate early neonatal encephalopathy. The notes need to be careful, thorough, non-judgemental and include a daily description of the baby’s neurological state. Avoid the temptation to record an absence of change without explaining what has not changed and make positive factual observations of the child’s condition.
Investigation needs to be thorough and appropriate. This is not difficult ( Ch. 40.1 ), but it is remarkable how often there is no pH, no head circumference, or no description of fontanelle tension, muscle tone or level of alertness in a baby who is being treated with several anticonvulsants and whose nursing notes suggest that she is totally obtunded. A Kleihauer test can be vitally important in establishing the diagnosis of fetomaternal haemorrhage. It is embarrassing, to say the least, if a diagnosis of congenital cytomegalovirus, CHARGE syndrome or an inborn error of metabolism is only established once legal proceedings are well underway.
There is no doubt that asphyxia can cause brain damage, but the majority of babies who suffer asphyxia at birth do not go on to develop brain damage, and 90% of cases of cerebral palsy are not attributable to birth asphyxia. Furthermore, sometimes the signs of fetal compromise in labour are associated with brain damage that has been sustained previously. This means that the association can be difficult to understand and is in part a diagnosis of exclusion. We suggest that the following list of features reflects the approach of most experts who advise the courts at the moment:
- 1
There must be evidence of significant fetal compromise if the fetal heart rate was being monitored at the time when it is suggested the damaging hypoxic ischaemia was sustained. Since the vast majority of children tolerate the stresses of labour without sustaining damage, there must be good evidence to pinpoint the insult to this time. Although electronic monitoring is not specific it is highly sensitive and it is unlikely that a child will suffer brain damage due to ischaemia at a time when the heart rate appears to be normal in rate and variation.
- 2
If it is suggested that profound damage was inflicted at the end of labour the neonate must exhibit clear evidence of this recent near-death experience. The Apgar score is not measured to predict outcome, but if the baby scores 2 for circulation at birth it is unlikely that the circulation has recently collapsed, and a 5-minute Apgar of 6 or above is not consistent with a recent acute profound hypoxic–ischaemic injury.
- 3
The human organism will metabolise anaerobically in response to hypoxic ischaemia. Thus a baby who does not have an acidosis is highly unlikely to have experienced significant hypoxic ischaemia recently. If the cord blood was sampled the diagnosis of acute profound hypoxic ischaemia in the immediate run-up to delivery becomes difficult to establish if the arterial pH is above 7.0 and the base deficit less than 12, and can usually be excluded if the pH is above 7.1 and the base deficit less than 8. It is always important to consider the arterial as well as the venous cord blood and this is particularly important in cases of possible cord occlusion.
- 4
It is unlikely that brain damage has been sustained without there being signs of temporary damage to at least one other body system, although whether this has been recorded may be a function of how ill the baby was perceived as being at the time.
- 5
The baby born after 34 weeks must have exhibited severe or moderate neonatal encephalopathy ( Ch. 40.4 ), because this is the stage in the evolution of the disease process in which permanent damage is sustained. Increasingly, this diagnosis is supported by evidence of an abnormal EEG or aEEG.
- 6
The child must have a disability capable of being attributed to birth asphyxia. Traditional thinking held that spastic and athetoid cerebral palsy were the only disabilities in this category, but it is now appreciated that learning difficulties can be caused by perinatal hypoxic ischaemia, although a motor disability is usually present as well.
- 7
Other more probable diagnoses must be excluded. This necessarily involves a careful and detailed investigation by a wide range of modern modalities, including biochemical tests and magnetic resonance imaging (MRI). Particularly important in this category is the diagnosis of stroke.
In many of the cases we are asked to assess, the fact that the baby has sustained perinatal hypoxic–ischaemic damage is not in dispute so much as the precise timing of the insult. Where the mother reports a sudden loss of fetal movements a day or two before delivery this may take on a more sinister significance in the light of subsequent events. In all these cases early cerebral imaging, EEG or Doppler studies may be decisive. In future, diffusion-weighted MRI or MR spectroscopy may shed more light on the precise timing of events.
Preterm brain injury
Preterm brain injury is usually caused by a complex sequence of interacting factors, which makes establishing causation even more difficult than at term. Further, much preterm brain injury is not preventable in the present state of the art, however meticulous the care. However, if the prematurity was the result of an inappropriate early delivery (because of miscalculated dates, for example) the child may mount a claim for iatropathic prematurity. Some disabled ex-preterm children born after the mid- to late 1990s have mounted successful claims based on the association of hypocarbia with periventricular leukomalacia. The same is true for those whose mothers were not offered antenatal steroids (when appropriate) after about 1994, when the first Royal College of Obstetricians and Gynaecologists (RCOG) guidelines were issued.
Adverse outcome after preterm birth is an area where neonatologists need all their skills in communicating with parents as well as treating their patients. The parents of a disabled child understandably seek a reason, and something to blame. If they are kept in touch with their baby’s care and given an accurate prognosis and an explanation of any interacting causes as early as possible, they are less likely to ascribe the whole problem to the brief power cut on day 6, the disconnected ventilator tubing on day 33 or the possible misplaced nasogastric tube on day 40. Early and full explanations can avoid a long-drawn-out period of attrition which often ends in disappointment for all concerned. In our experience, it is very rare to go through a set of notes documenting a neonatal intensive care unit (NICU) stay of several months and find that there were absolutely no problems or errors at all, but it is rarely the case that any deficiency in care can be identified as the cause of an adverse outcome in a very preterm baby. As many studies have shown, there are simply too many hurdles for such babies to surmount for it to be clear which inflicted the lesion which will later prove disastrous.
Jaundice ( Ch. 29.1 )
Kernicterus is often a preventable disease, and, although it almost vanished from UK neonatal practice, it has now returned with a vengeance. The National Patient Safety Agency has made kernicterus a ‘never event’ in the UK. Midwives and others concerned with newborn care need to be taught that neonatal jaundice can be an emergency. Early discharge policies and the welcome move towards exclusive breastfeeding have produced a new population of vulnerable babies. There is only one way the bilirubin is going in the first few days of life, and that is up. New NICE guidelines ( www.nice.org.uk ) became available in 2010 regarding the management of neonatal jaundice, including advice on when to measure the bilirubin and when to start and stop phototherapy ( Ch. 29.1 ).
Evidence shows that the following are especially high-risk groups:
- •
near-term babies (35–37 weeks)
- •
babies whose mothers exclusively breastfeed
- •
babies whose siblings required treatment for neonatal jaundice (often a proxy for haemolytic disease)
- •
preterm babies with acidosis, and/or low albumin levels, or an ‘open’ blood–brain barrier because of germinal matrix and intraventricular haemorrhage or sepsis, who can develop kernicterus at low levels of bilirubin.
Effective intervention in all such groups requires anticipation as well as reaction.
Example Baby W was born normally at 07.26 on a Friday after a quick and easy labour. He weighed 3.68 kg with a head circumference of 35.5 cm. The baby check was carried out in the hospital during the morning by the family general practitioner (GP) who was providing care, and mother and baby went home soon afterwards. It was the mother’s second child. The father was known to suffer from spherocytosis and during the pregnancy he was admitted to the same hospital with a haemolytic crisis
On Saturday the community midwife visited at home and noted that W was jaundiced. She advised putting him outside in his pram in the ‘sunlight’. By Sunday W was more markedly jaundiced and he was feeding less well; again sunlight was advised and the midwife said that a bilirubin estimation would be performed the following day.
On Monday W was irritable and arching his back, and would not feed. His mother took him to the GP, who arranged admission to the hospital, where his bilirubin was found to be 636 µmol/l. An exchange transfusion was done but was too late to prevent kernicterus, which was apparent on the late MRI. W is disabled by choreoathetoid cerebral palsy, upgaze palsy and deafness.
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