Any loss of a baby is tragic and has far-reaching consequences. In this article Olanma Ogbuehi, Midwifery Lecturer, University of Hull, explores the recent MBRRACE-UK report focussing on perinatal deaths in 2021 and discusses the fluctuations in data.
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This year, “Baby Loss Awareness Week” takes place in the shadow of news, from the recently published MBBRACE-UK Perinatal Mortality Surveillance report (“State of the Nation”): UK perinatal deaths for births from 1 January 2021 to 31 December 2021 (Draper et al., 2023), of the first increase in perinatal mortality rate in the UK for seven years in 2021. This is particularly concerning because the previous seven years had demonstrated a steady, year-on-year, linear, decline in these rates. Every baby that dies during, pregnancy, birth or early infancy, leaves indelible scars on the psyche of mothers, fathers, siblings, grandparents and the extended family, friends and community around them, all of whom carried hopes, expectations, aspirations and love for these deceased children; a situation so aptly described by Kluger-Bell (2000) as “unspeakable losses.” In this article, I have chosen to critically analyse some noteworthy elements of the findings of the report and to consider some implications for further study and reflection.
The State of the Nation report offers, “…a concise overview of perinatal deaths in the UK…” according to Oxford Population Health/National Perinatal Epidemiology Unit (NPEU) (2023) in the article “Continuing inequalities contribute to the wide variation in rates of stillbirths and neonatal deaths across the UK” . To contextualise the data, it is broken down by the four devolved nations of the UK, by ethnicity, by Trusts and Health boards, by level of socioeconomic deprivation and by gestational age at time of death (Draper et al., 2023; NPEU, 2023). The reports also describes the causes of perinatal deaths in the UK. The contribution of abortion to perinatal deaths is not reported or analysed for trends (Draper et al., 2023). Analysing perinatal death data, according to different demographic categories, may provide important information for future health promotion and prevention, including understanding the contribution of standards of care given (NPEU, 2023).
“Perinatal mortality” refers to baby deaths, antenatally or intrapartum, from 24 completed weeks’ gestation; it also incorporates neonatal deaths, occurring within the first 28 days after an infant is liveborn according to “Definitions of terms used in the MBRRACE-UK Perinatal Mortality Surveillance Report” (MBRRACE-UK, 2014). Stillbirths are subdivided into “antenatal stillbirths” (occurring prior to labour) and “intrapartum stillbirths” (occurring during the birth process) (MBRRACE-UK, 2014).
“Extended perinatal mortality” refers to the sum of the total number of antenatal and intrapartum stillbirths combined with the total number of neonatal deaths (MBRRACE-UK, 2014). The rate of late fetal losses (stillbirths from 22-23 completed weeks’ gestation) is also reported, when comparing mortality rates from stillbirth, by gestational age (MBRRACE-UK, 2014; Draper et al., 2023).
The data are stabilised and adjusted to average mortality rates for comparable health boards and Trusts, so different from the crude data. However, despite this there were still wide variations in perinatal mortality rates between comparable Trusts and Health Boards.
The main headlines from this report were that UK neonatal mortality rates have increased for the first time in seven years from 1.53 deaths per 1000 live births to 1.65 deaths per 1000 live births in 2021 (Draper et al., 2023). This trend was reflected across all four devolved nations. A parallel trend happened in total stillbirths from 3.33 per 1000 total births in 2020, to 3.54 per 1000 total births in 2021. Overall, extended perinatal mortality rates, rose from 4.85 per 1000 total births to 5.19 per 1000 total births for the UK. There is a wide variation in stillbirth and neonatal mortality rates, even when differences in care delivery were considered.
It is noteworthy that the prior seven-year consecutive decline in extended perinatal death rates was most apparent in the statistics for England (Draper et al., 2023). This is to be expected given that population of England accounts for 83% of the total 67.3 million people in the UK (Statista, 2023).The total stillbirth rate in England was around 4.1 per 1000 total births in 2013, steadily declining to around 3.4 per 1000 total births in 2020, but rising again to 3.54 per 1000 total births in 2021. Neonatal deaths were around 1.9 per 1000 live births in 2018, gradually declining to around 1.5 per 1000 live births in 2020, before rising to 1.60 per 1000 live births in 2021.
Comparing this with Northern Ireland (NI), over the same interval (Draper et al., 2023) in NI, total stillbirths in 2013, were 4.2 per 1000 total births. This sharply declined over the next two years to around 3.2 per 1000 total births by 2015, before another dramatic inversion peaking in 2017, with a stillbirth rate of around 4.6 per 1000 total births, followed by another steep decline to 3.4 per 1000 total births in 2018, remaining stable for three years in a row before peaking again, at 4.09/1000 total births from 2020 to 2021. Neonatal deaths in NI, started at around 2.4 per 1000 live births in 2013, trending upwards to a peak of 3.2 per 1000 live births in 2015, with a dramatic reversal in the next year to 2.2 per 1000 live births in 2016, gradually declining to 2.0 per 1000 live births in 2018, before climbing to 3.0 per 1000 live births in 2019. A steep fall in neonatal deaths occurred, again, to 2.4 per 1000 live births by 2020, before gradually rising again to 2.46 per 1000 live births in 2021. This illustrates the appreciable differences in trends between the devolved countries of the UK. This suggests that there are potential health inequalities between the devolved nations of the UK in relation to risk of perinatal deaths. These different trends need to be investigated carefully.
The current uptick in extended perinatal mortality in the UK in 2021 needs also to be considered in light of the proximate events of the SARS-CoV-2 (COVID-19) pandemic (Draper et al., 2023). Mothers of babies born in the UK in 2021, were pregnant during the outbreak and height of the pandemic from late March 2020. MBRRACE-UK sought out the COVID-19 infection status of all mothers and babies whenever there was a notifiable stillbirth, or neonatal death (Draper et al., 2023). In 2021, 351 mothers of babies who were stillborn tested positive for COVID-19. A positive maternal or infant Covid-19 test was a feature in 11.9% of the total stillbirths. A mother testing positive for Covid-19 was a feature in 4.8% of the total number of neonatal deaths (not including stillbirths between 22-23 weeks’ gestation) (Draper et al., 2023). Unfortunately, because COVID-19 infection status is not routinely collected for all births, the required denominator is not available to calculate the risk of stillbirth and neonatal death associated with the infection.
A prospective cohort study “Pregnancy outcomes and vaccine effectiveness during the period of Omicron as the variant of concern, INTERCOVID-2022: a multinational, observational study” (Villar et al., 2023), has already demonstrated increased relative risk for severe neonatal morbidity and for perinatal mortality and morbidity from COVID-19. It remains to be seen whether this present spike in extended perinatal mortality resolves with increasing distance from the pandemic. It would be instructive to investigate how changes in quality of care in maternity services (NPEU, 2023), during the imposition of the UK lockdown measures, may have contributed to potentially preventable perinatal deaths. If so, from such studies, valuable lessons may be learned to inform care in the event of future epidemics or pandemics of infectious diseases.
Perinatal mortality by gestational age was skewed towards preterm gestational age. 75% of perinatal deaths occurred at a preterm gestational age (including late fetal losses), as did 73% of neonatal deaths (Draper et al., 2023). Babies born between 24 and 31 completed weeks’ gestation were most represented in these statistics, even though there was no corresponding increase in the total numbers of babies born at these gestations, from 2016 onwards (Draper et al., 2023). Stillbirth rates were noted to have increased in all gestational age groups apart from the one that corresponds with the definition of full term, 37 to 41 completed weeks’ gestational age. This demonstrated a modest 3% reduction from 1.23 per 1,000 total births in 2020 to 1.19 in 2021. However, overall, since 2016, there had been a 22% reduction in the stillbirth rate, for this gestational age group. The greatest increase in stillbirth rates was for babies born between 28 to 31 completed weeks’ gestational age, where there was a 12% increase from 72.98 per 1,000 total births in 2020 to 81.70 per 1000 in 2021 (Draper et al., 2023). It may be that implementation by UK Trusts and Health Boards of initiatives like the Saving Babies Lives Care Bundle (O’ Connor, 2016) and the Perinatal Institute Growth Assessment Protocol (GAP) (Clifford et al., 2013) around the mid-2010s may have been more effective in reducing stillbirth in full term babies, than in preterm infants. In relation to neonatal mortality rates. The most prominent increase was found in babies born between 24 to 27 completed weeks’ gestation, with a staggering 18% rise from 135.6 per 1,000 live births in 2020 to 160.0 in 2021. The report’s authors recommend the use of British Association of Perinatal Medicine (BAPM) Perinatal Optimisation Pathway, to improve preterm outcomes.
When examining perinatal mortality by social deprivation and ethnicity, there was an increase in total stillbirths among women in the most deprived quintile. This was the opposite for women in the least deprived quintile where there was a decrease in stillbirths, demonstrating widening health inequalities. Stillbirth rates when analysed by ethnicity demonstrated higher prevalence among babies of Black ethnicity (7.52 per 1,000 total births) compared with babies of Asian ethnicity (5.15 per 1,000 total births) and babies of White ethnicity (3.30 per 1,000 total births). Although very small increases in stillbirth rates appear since 2020 for babies of White and Asian ethnicity, black babies are dying at a higher rate and the gradient of increase is higher than any other ethnic group (Draper et al., 2023). All three ethnic groups were trending downwards in stillbirths, year on year until 2020, however, even then black babies were starting at a higher rate of stillbirths then either Asian or White babies.
It is important to investigate the trends in neonatal mortality, by ethnicity; the rate for babies of Black ethnicity increased to 2.94 per 1,000 live births, the highest rate of neonatal mortality for any ethnicity, whilst neonatal mortality in Asian ethnicity babies fell to (2.22 per 1,000 births). Initially, Asian ethnicity neonatal mortality rates were slightly higher than in Black ethnicity babies, but both were declining in parallel between 2016 and 2019. However, from 2019, the downward trend is reversed in Black babies and accentuated in Asian babies. Whilst, the neonatal mortality rate in White ethnicity babies did increase in 2021, this still remained lower than rates for either Black or Asian ethnicities at 1.68 per 1,000 live births (Draper et al., 2023). Although proportionately more, Black African, Black Caribbean, Pakistani and Bangladeshi families were represented among deprivation quintiles, there is still disproportionately more perinatal mortality among them, than for white families within the same deprivation quintiles.
A full confidential enquiry into the deaths of babies born to Black and Asian mothers in the UK is due for publication in December 2023 (NPEU, 2023). If there are ethnic differences, it is important to explore whether this is related to factors such as hereditary diseases, diet, pre-existing maternal morbidities, lifestyle habits, health behaviours, or health beliefs; or whether there are differences in the demographic make-up of the Black and Asian populations, over time, that might account for the trends. For example, whether the black or Asian populations are made up of more recently arrived migrants or more of the settled population over this period of time. This enquiry may also help to identify any differences in the quality of maternity care offered to these groups. This includes exploring any differences in the way that Black and Asian women and families access, or receive, maternity care, compared with White British families. Between 2019 and 2021 there were claims made nationally of racial disparities in healthcare institutions and maternity services. It is important that accurate inferences are made, from the evidence, in order to provide the right remedy to help Black and Asian families to improve outcomes for their infants.
The most common causes of perinatal deaths were listed. Just over half of all stillbirths are attributable to either placental causes, congenital anomalies, cord and infection, whilst most commonly neonatal deaths are attributable to congenital anomalies, extreme prematurity, neurological, cardio-respiratory and infectious causes. It would be good to inquire more deeply into which of these might have been preventable. It would be good to discover whether there is more that could have been done, in terms of screening, health promotion, early detection and prompt and appropriate treatment. However, it is also notable that a third of stillbirths are idiopathic, accounting for 1.18 per 1,000 total births.
The report’s lead author, Consultant Perinatologist Professor Elizabeth Draper, has called for action, in the article, “Continuing inequalities contribute to the wide variation in rates of stillbirths and neonatal deaths across the UK” (NPEU, 2023) advising that:
The UK government, Royal Colleges, and Health Commissioners must support rigorous reviews of all stillbirths and neonatal deaths to identify common themes that can improve clinical care and service provision, delivery, and organisation reducing the need for future independent enquiries.’
Indeed, whilst for families scarred by the death of baby through stillbirth or neonatal death, Baby Loss Awareness Week is a welcome initiative, to mark acknowledge and their grief and remembrance of their loved ones, we would all wish, that more could be done to reduce the need for it.
Olanma Ogbuehi: Midwifery Lecturer, University of Hullemail. [email protected]
October 2023