32 Simon Hannam Neonatal Intensive Care Unit, Great Ormond Street Hospital for Children, London, UK Management decisions during pregnancy and labour require knowledge of neonatal care and outcome. The informed obstetrician will thus more confidently deal with prospective parents’ questions and be more engaged in the collaborative planning of perinatal care, particularly in high‐risk pregnancies or where the fetus is at high risk of neonatal complications. This chapter therefore focuses on the basic neonatal knowledge required by the practising obstetrician but also provides a personal perspective gained from experience of some of the determinants of success and occasional failure of perinatal care. A neonatal reference text should be consulted for more detail on transitional physiology, neonatal resuscitation, neonatal conditions and management to augment the brief notes included later in this chapter. After birth, 90% of babies are cared for by their mothers and healthcare professionals should aim to facilitate this natural process. Approximately 8–10% of babies require more than normal care and about 2–3% need intensive care (level 3) following delivery; the majority of these may be anticipated because of impending prematurity, fetal abnormalities or concerns about fetal well‐being. Care in complex cases requires multidisciplinary involvement, good planning and handover of respective responsibilities and duties of care from obstetrician and midwife to the neonatal team. Anticipating potential problems during the antenatal period facilitates the achievement of excellent care and helps avoid the unexpected becoming an uncontrolled emergency. Other care categories are special care (level 1) or high‐dependency care (level 2). Levels 1–3 are delivered in the neonatal unit. If the baby’s condition allows, a level of care sometimes referred to as ‘transitional care’ is delivered usually on a postnatal ward and aims to avoid separation of mother and baby and to promote breastfeeding. Healthcare professionals support the mother to deliver medical care that may not be safely provided at home. Promotion of and support for breastfeeding is essential at all levels of neonatal care. Anticipation and management of potential problems requiring specialist neonatal care is facilitated by multidisciplinary communication. The essential role of the neonatologist in antenatal discussions is to ensure that a comprehensive plan for delivery (timing, mode and place) and clear plans for resuscitation and stabilization are in place. The possible scenarios following birth need to be clearly discussed with parents to ensure their views and aspirations are fully taken into account when plans are agreed. The neonatal management plan will include the personnel and expertise of staff required at the delivery and the level of resuscitation deemed appropriate. The planning of place of delivery is especially important for infants with an antenatal diagnosis of a surgical condition. Antenatally there should be multidisciplinary discussions between parents, neonatolgists and surgeons as well as obstetricians in order to provide information regarding survival and treatment options. The neonatal plan for complex babies should be clearly documented and copies made available in the maternal case record, the hand‐held maternal notes and the neonatal service pending file. These plans will involve resuscitation, specialist management (e.g. cardiac or surgical) and likely scenarios that may require different pathways of care. The plans should also detail the mother’s feeding intention, particularly if feeding after birth is anticipated to be problematic (e.g. extreme prematurity and some surgical cases). In some cases where only compassionate care is required, detailed plans should include pain relief and comfort feeds and may also include hospice care plans. Knowledge of the karyotype can reduce uncertainty when considering the longer‐term prognosis of the high‐risk fetus. Not always considered is the value to the neonatologist of knowing the karyotype for planning the extent of resuscitation even if parents are unwilling to terminate the pregnancy on the basis of an abnormal karyotype. In such cases, a late karyotype specifically to inform early neonatal management is invaluable and may prevent active resuscitation when a more appropriate plan may be to provide compassionate care and support for the family. Consideration of the multidisciplinary management of the baby after elective delivery facilitates team coordination. It is essential to ensure appropriate members, equipment, investigations and theatres are available if these should be required. In addition, anxious parents should not have their expectations and confidence dashed by unrealistic or non‐existent perinatal plans. Formal resuscitation plans are required for certain high‐risk deliveries, such as extreme prematurity at the margins of viability, some serious fetal malformations that may require specialist intervention and stabilization, or if there is uncertainty about survival and long‐term outcome. Explicit, detailed and well‐documented explanation of anticipated neonatal scenarios after delivery allows clear pathways of care to be agreed with parents before birth. A well‐meaning reassurance that the paediatrician or neonatologist will be present at delivery is inadequate and unhelpful. Therefore it is essential that engagement and timely communication between professionals involved antenatally (obstetrician, midwife, fetal medicine specialists, clinical geneticists, fetal cardiologists or surgeons) and a senior neonatologist is required in all cases where neonatal resuscitation and early stabilization may be needed before definitive management can be started. Such engagement will provide full and detailed information to the family and permit a written plan to be agreed with the parents and other professionals. The plans help to avoid confusion, especially if spontaneous labour and delivery occurs after‐hours or pre‐empts planned delivery. Plans for resuscitation need to take into consideration the various resuscitation guidelines that have been produced by international and national bodies, such as the International Liaison Committee on Resuscitation (ILCOR), the Royal Colleges and the British Association for Perinatal Medicine [1]. The ethical and practical issues of starting, withholding or withdrawing (or redirecting) resuscitation and neonatal intensive care should be explicitly considered and discussed with the family [2,3]. Palliative care may be a positive option but needs to be discussed and planned in detail. These discussions help prepare families and staff for the different outcomes following birth. In the UK the guidelines are heavily reliant on data obtained by the population‐based EPICure studies of 1995 [4] and 2006 [5]. There have been significant advances in health service organization and perinatal management, including use of antenatal steroids, surfactant and ventilation techniques. The outcome data of the EPICure 2 showed that survival increased in babies born between 22 and 25 weeks’ gestation from 40% in 1995 to 53% in 2006 (P <0.001) [5]. This improvement in survival demonstrates that guidelines need to be continually reviewed in the light of advances in care. Palliative care after birth may be the preferred option for some babies. There is increasing awareness of the need for palliation, improving management and increasing availability of resources for neonatal palliative care. Planning before birth for such a care pathway helps parents establish links with caring staff and plan visits to palliative care centres if needed and avoids delays in hospital. In circumstances where neonatal death is the outcome, family support by neonatal staff should include the antenatal team wherever possible. Continuing engagement by the obstetric staff in the postnatal care of the baby and family is especially helpful when the outcome is death or significant early morbidity. This ongoing communication between the antenatal and postnatal teams improves quality of care for the individual family and for all babies in general, as open dialogue fosters respect and support. Providing the appropriate level of care for the mother and/or her baby requires careful planning and well‐organized and integrated health services. Managed health service networks aim to deliver appropriate healthcare to a defined local population in the most effective and efficient manner. Specialized neonatal care is a high‐cost, low‐volume service that is increasingly delivered in managed networks. In 2009, the UK Department of Health Toolkit for High‐Quality Neonatal Services [6] set the standards of care that should be provided for preterm or sick infants. Included in these recommendations was the stipulation that neonatal care should be delivered in managed clinical networks. Within each network, different hospitals provide a range of care as agreed by that network. The level of care provided by each hospital is based on resources, capacity, geography and the availability of appropriately skilled and trained staff. A network consists of at least one neonatal intensive care (level 3) unit providing intensive care facilities, with specialist staff and facilities. The various network hospitals collaborate to ensure that every infant has access to the most appropriate level of care. The development of coterminous maternity networks are also enhancing the organization of perinatal services. In the UK, neonatal intensive care (level 3) units provide care for extremely preterm babies and the sickest term babies requiring all levels of advanced respiratory support and parenteral nutrition. These units have 24‐hour cover from specialized nursing staff and neonatal specialist doctors. Local neonatal (level 2) units provide respiratory support for babies of 28 weeks’ gestation or more and special care (level 1) units provide care for babies that do not require respiratory support for prolonged periods (usually 24–48 hours only). Ensuring that babies receive the appropriate level of care ideally requires delivery in the correct place if delivery is predictable and safe antenatal transfer of mother is possible. Postnatal transfer of babies to the correct level of unit after delivery also needs to be available. Specialist neonatal transfer services are evolving that have the expertise and equipment and thus help to avoid depleting specialist staff from the either the referral unit or the specialist centre. A major role of the neonatal networks is to ensure that pregnant women are transferred to the most appropriate setting if it is predicted that their baby will need a higher level of care than that provided by the admitting hospital. In order to facilitate family involvement, it is also expected that the infant should be cared for within the network rather than being transferred great distances. Only 1% of normal birthweight babies require active resuscitation after birth and only 0.2% require advanced resuscitation including endotracheal intubation. Although the need for resuscitation may be predictable based on risk factors, 30% of babies requiring resuscitation are not predicted. Babies who may be at risk of not making a successful adaptation without assistance include those in the following groups: preterm births (usually <36 weeks), those with known fetal complications, infants of diabetic mothers, fetal distress, fresh meconium‐stained liquor, malpresentation and breech, multiple pregnancies, caesarean section under general anaesthesia or for fetal distress, risk of fetal infection and instrumental delivery. In the UK, the Royal College of Paediatrics and Child Health (RCPCH), the Royal College of Obstetricians and Gynaecologists (RCOG) and the Royal College of Midwives (RCM) have published their recommendation that all professionals present at the time of birth are proficient in resuscitation of the newborn [7]. Basic neonatal resuscitation is now a requirement of training for obstetricians and midwives and advanced resuscitation for neonatal paediatricians and practitioners. Antenatal screening continues after birth with newborn screening programmes. In the UK, antenatal screening includes the National Health Service (NHS) fetal anomaly, infectious diseases in pregnancy and sickle cell and thalassaemia screening programmes. These results influence antenatal management of mother and fetus and, in some cases, postnatal management of the newborn. The NHS National Screening Committee recommendations for systematic neonatal population screening include the following. Table 32.1 NHS Newborn Blood Spot Screening Programme.* * Blood sample taken at 5–8 days after birth. Prematurity is the major determinant of neonatal outcome in developed countries. The preterm birth rate (live births occurring before 37 weeks’ gestational age) is 5–9% in Europe and 12–13% in the USA and is increasing. In the USA there has been a 31% increase in prematurity since 1981 [8]. In England and Wales, there were 700 000 liveborn babies in 2013, 7% preterm and 1.0% less than 32 weeks’ gestation [9]. The infant mortality rate (deaths at less than 1 year of age) in term infants was 3.8 per 1000 live births compared with 21.1 for preterm infants. Of those born at less than 32 weeks of gestation, 15% resulted in an infant death and this accounted for over half of all infant deaths. Variation may be due to methodological differences such as case ascertainment, selection bias, and varying outcome definitions and follow‐up duration. Reports from geographically defined population‐based studies show lower survival rates than single‐centre selective studies that are subject to bias. Variation in preterm birth rates (all births) also appears to have a major influence on reported neonatal mortality rates between populations. Compared with other European regions, the delivery rate per 1000 births between 22 and 31+6 weeks in two regions in England (Trent: 16.8, 95% CI 15.7–17.9; Northern: 17.1, 95% CI 15.6–18.6) was significantly higher compared with a group mean of 13.2 (95% CI 12.9–13.5) [10]. Live birth rates showed similar trends. When comparisons were made between regions after adjustment for prematurity rates, the variation in survival outcomes was reduced. Perinatal management policies and differences in perinatal healthcare provision as determinants of survival are inadequately quantified. The extent to which obstetricians use antenatal steroids and actively manage delivery and whether neonatologists perform resuscitation and redirection of care during intensive care, all potentially have effects on reported survival and outcome. At the extremes of viability, biological variation and ethical considerations are important in determining management policies. Policies based simply on gestation at birth are inadequate and prediction of outcome may be more accurate if gender, exposure to antenatal steroids, single or multiple births and birthweight are considered with gestation. Advances in perinatal care have resulted in a significant increase in survival of preterm babies. Survival in late preterm babies (32–36 weeks) is 98–99%. There are limited data on longer‐term morbidity in this group but recent reports suggest this neglected area should be studied in greater detail. There are five times more late preterm babies born than babies born before 32 weeks’ gestation and therefore as a group require considerable healthcare resources. Babies born before 28 weeks’ gestation have shown the greatest increase in survival since the advent of modern perinatal care. Few babies less than 28 weeks’ gestation survived until techniques were developed during the 1960s and 1970s to provide respiratory support. Over the following two decades, the use of antenatal corticosteroids, use of surfactant and improvements in respiratory support have resulted in striking improvements in reported survival. The EPICure study of all births between 22 and 25 weeks’ gestation in the UK and the Republic of Ireland during 1995 provided important population‐based information on babies born at the borderline of viability [4,11]. During the study regionalized neonatal care was poorly developed. This study was repeated in the UK during 2006 for babies born between 22 and 26 weeks’ gestation in England [5]. Survival overall increased from 40 to 53% as well as at each week of gestation. The development of more regionalized neonatal care delivery in the UK, with increasing use of managed neonatal networks during the period between the two studies, may have contributed to the improvement. Neonatal death in preterm births is largely due to respiratory complications, periventricular haemorrhage and infection. Antenatal steroids, the use of early surfactant and continuous positive airway pressure are all associated with a reduction in death and morbidity. Neurodevelopmental sequelae of prematurity present during the first 5 years after birth and include cerebral palsy, poor cognitive performance and sensory impairments (visual and auditory deficits). During later years, academic underachievement and behavioural sequelae may occur. The definitions used for neurodevelopmental impairments and disability between studies are not uniform but more rigorous definitions are evolving. Disability reported in studies usually refers to one or more severe functional impairments, including non‐ambulatory cerebral palsy, developmental quotient or IQ of less than −2 or −3 standard deviations from the norm, blindness and hearing impairment not improved with aids. Although cerebral palsy is the most commonly quoted outcome after very preterm birth, developmental and cognitive impairments are more common. The term refers to static injury to the developing brain that affects motor function. Different patterns are described and most commonly after preterm birth spastic diplegia is found. Of infants born between 22 and 26 weeks’ gestation who were evaluated at 3 years of age in EPICure 2, 14% had cerebral palsy with increasing proportions at lower gestation [12] and it is more commonly seen in boys. Overall rates do not appear to be changing significantly as survival increases, but there is concern that the absolute prevalence will increase with increased survival of the most immature babies. The most common disability at 3 years is developmental or cognitive impairment, affecting up to 45% of extremely preterm babies [12]. As gestational age increases, the percentage of those with developmental impairment decreases. During the school years this domain of impairment is even more significant. The prevalence of severe impairment of hearing and vision in very preterm babies is relatively low (hearing impairment not improved with aids <2%, blindness <3%). Less severe impairments are more common and include squints and refractive errors. Cognitive impairment appears to be the major determinant of school performance. At 8–9 years, approximately 20% of very low birthweight babies require special education and for those in regular schools, 25% repeat a year and 11–15% receive special help. At 11 years, the EPICure cohort showed significantly lower academic attainment compared with controls [13]. The proportions requiring special educational support was 62% of the extremely preterm group compared with 11% for the term controls (odds ratio, OR 13.1, 95% CI 7.4–23.3). Statements of Special Educational Needs were issued for 34% of the preterm cohort compared with 0.7% for controls (OR 76, 95% CI 10–552). There is an excess of attention deficit hyperactivity disorder (ADHD) among preterm survivors. A meta‐analysis of six follow‐up studies revealed a relative risk of 2.64 (95% CI 1.85–3.78) among preterm babies. The EPICure study found ADHD in 11.5% of preterm babies and in 2.9% of term controls (OR 4.3, 95% CI 1.5–13) and autism spectrum in 8% compared with 0% in term controls [14]. Various functional limitations occur in 86% of early teenage survivors with birthweight below 750 g. Growth disorders (49%), mental or emotional problems (58%), restrictions on physical activity (32%) and visual impairment (31%) are found and 75% use aids such as spectacles and medication. However, in a study of health‐related quality of life in adolescent survivors with birthweight below 1000 g, the proportion that scored within the normal range was similar to normal‐birthweight adolescents. Although fewer adult very low birthweight survivors go on to higher education than their peers, they are less likely to engage in risk‐taking behaviour and social integration is not impaired. There is a significant increase in utilization of public health, social and educational services by extremely preterm survivors. During the 11th year of life, the EPICure study estimates of public sector costs were £4007 (SD £2537) for controls and £6484 (SD £2537) for the preterm cohort, a significant mean cost difference of £2477 (95% CI 1605–3360; P <0.001) [15]. Many preterm survivors experience less severe problems such as clumsiness, visual impairment (e.g. squints, refractive errors), growth disorders and respiratory problems. More than 50% of extremely low birthweight babies require hospital readmission during the first 12 months after discharge from the neonatal unit. These admissions are usually due to respiratory illness precipitated by lower respiratory infections. Chronic lung disease of prematurity or bronchopulmonary dysplasia (BPD) has been reported in up to 40% of very low birthweight survivors. The rate is higher as birthweight and gestation falls. Significant airflow limitation on lung function tests is found in adolescent survivors. Growth failure is common during infancy and early childhood but adult stature within the normal range is achieved. Despite this catch‐up, extremely low birthweight babies remain at a height disadvantage to normal birthweight controls. In the longer term, there are concerns that accelerated weight gain may lead to increased risk of hypertension and other cardiovascular diseases as well as type 2 diabetes. The psychological distress that parents of high‐risk preterm babies experience is greatest during the first month after birth and persists for the first 2 years. The greatest effect of stress is found in families of low income and lower parental education and with greater severity of functional disability in the child. By adolescence, despite the preceding years of emotional distress, families report positive interactions with friends and within the family, experience enhanced personal feelings of accomplishment and report both positive and negative effects on the marital relationship.
Neonatal Care for Obstetricians
Anticipation and levels of neonatal care
Antenatal communication and care plans
Documentation
Antenatal counselling and late karyotype
Timing of delivery
Resuscitation plan for high‐risk deliveries
Resuscitation guidelines
Compassionate and palliative care
Communication following neonatal death
Organization of neonatal services
Managed neonatal clinical networks
Neonatal transport
Birth and postnatal adaptation: neonatal resuscitation
Antenatal and newborn screening
England
Wales
Scotland
Northern Ireland
Congenital hypothyroidism
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Cystic fibrosis
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Sickle cell disease
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Phenylketonuria
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Medium‐chain acyl dehydrogenase deficiency
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Maple syrup urine disease
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Isovaleric acidaemia
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Glutaric aciduria type 1
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Homocystinuria
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Neonatal outcome
Prematurity
Survival
Neonatal mortality and early morbidity
Childhood morbidity
Neuromotor domain
Developmental domain
Sensory and communication domain
Academic attainment
Behavioural/psychiatric sequelae
Outcome in teenage and adult survivors
Health and social care and educational resource utilization
Other morbidity
Respiratory
Growth
Effect on family