Learning from Surveillance and Confidential Enquiry Northern Ireland Perinatal Mortality Heather Reid

Programmes Surveillance Confidential enquiry Perinatal and neonatal mortality Maternal death Child mortality Confidential enquiry Congenital diaphgramatic hernia Maternal Sepsis Late term Stillbirth Psychosis in pregnancy Child health topic

NIMACH – working relationships Collective effort NIMACH – facilitator Nationally coordinated by MBRRACE Thank You!

Overview Maternal Mortality Perinatal mortality Global, European and UK data UK Surveillance and Confidential Enquiry Northern Ireland Data (characteristics of Mums and Babies) Causes and risk factors for perinatal mortality Where do we go from here?

Global maternal mortality Every day, approximately 800 women die from preventable causes related to pregnancy and childbirth. 99% of all maternal deaths occur in developing countries. Maternal mortality is higher in women living in rural areas and among poorer communities. Young adolescents face a higher risk of complications and death as a result of pregnancy than older women. Skilled care before, during and after childbirth can save the lives of women and newborn babies. Between 1990 and 2013, maternal mortality worldwide dropped by almost 50%.

Global Maternal Mortality – 1990, 2005 and 2013

Maternal Mortality in the UK 2009-12 10 per 100,000 maternities 11 per 100,000 maternities 2006-08 90 per 100,000 maternities 1952-54

International comparisons MBRRACE-UK 10.1 per 100,000 maternities (95%CI 8.9-11.5) for 2010-12 MDE Ireland 8.6 per 100,000 maternities (95%CI 5.2-16.6) for 2009-11 France Confidential Enquiry 10.3 per 100,000 live births (95%CI 9.1–11.6) for 2007–09 Netherlands Confidential Enquiry 5.0 per 100,000 live births (95%CI 3.5-6.9) for 2009-12

Maternal Morbidity and Mortality Annual Report Topics Year 1 (This report): Sepsis, haemorrhage, AFE, anaesthetic, neurological, respiratory, endocrine and other indirect Year 2 (2015): Psychiatric, thrombosis, malignancy, late and coincidental Year 3 (2016): Pre-eclampsia and eclampsia, cardiac, early pregnancy First report to be published December 2014

MBRRACE–UK Methods

Maternal Deaths - Definitions Direct: As a consequence of a disorder specific to pregnancy E.g. Haemorrhage, pre-eclampsia, genital tract sepsis Indirect: Deaths resulting from previous existing disease, or diseases that developed during pregnancy, and which were not due to direct obstetric causes but aggravated by pregnancy E.g. Cardiac disease, other infections (sepsis) Coincidental: Incidental/accidental deaths not due to pregnancy or aggravated by pregnancy E.g. Road traffic accident Late: Deaths occurring more than 42 days but less than one year after the end of pregnancy

To note: Presentation of results Previous reports included data collected over three years Surveillance data in this report covers four years (2009-12) For comparison, most figures are presented either for 2009-11 alone, or for both 2009-11 and 2010-12 Note that figures for 2009-11 and 2010-12 therefore include some of the same women (those who died in 2010 and 2011)

The women who died Mixed news – much good BUT lessons to be learnt and improvements in care to be made 357 women died during pregnancy or up to 42 days postpartum in 2009-12 36 women’s deaths were classified as coincidental Thus there were a total of 321 women who died 253/2379014 in 2009-11 (10.63/100,000) 243/2401624 in 2010-12 (10.12/100,000)

Maternal Death Each death is a personal tragedy for every family Between 2009 and 2012 - 321 women died The women who died gave birth to 235 infants of whom 173 survived The women who died left behind a further 408 surviving children In total 581 motherless children remain

Maternal death rate 2003-12 (Three year rolling averages) 27% reduction in maternal death rate, p<0.001

Maternal death rate 2003-12 (Three year rolling averages) Direct and Indirect maternal death rate Indirect maternal death rate Direct maternal death rate

Maternal death rate 2003-12 (Three year rolling averages) Direct and Indirect maternal death rate Indirect maternal death rate Direct maternal death rate 48% reduction in direct maternal death rate, p<0.001 No significant decrease in indirect maternal deaths, p=0.73

Maternal death rate 1985-2011 (Three year periods)

Direct maternal deaths 1985-2011 (Three year periods)

Indirect maternal deaths 1985-2011 (Three year periods)

Causes of maternal death Solid bars show indirect causes, hatched bars show direct causes

Causes of maternal death

Causes of direct maternal death Thrombosis and thromboembolism is now the leading cause of direct maternal death Significant decrease in the maternal mortality rate from pre-eclampsia and eclampsia – now the lowest ever rate 0.38 per 100,000 maternities The mortality rate from genital tract sepsis has more than halved between 2006-8 and 2010-12; a statistically significant decrease RR 0.44; 95% CI 0.22-0.87, p=0.016 PET death rate 1 in 260,000

Maternal deaths from genital tract sepsis Rate in 2010-12: 0.50 per 100,000 (95%CI 0.26-0.87)

Sepsis – all causes N=71

Influenza N=29

Flu Aware NI

Causes of indirect maternal death Major contribution from influenza and other non-genital tract sepsis deaths Overall rate of maternal mortality from infectious causes in 2009-12 was 2.0 per 100,000 maternities (95%CI 1.6-2.6) Cardiac disease remains the largest single cause of indirect maternal deaths; rate more than doubled since 1985-87 (RR 2.2, 95%CI 1.4-3.6)

Psychiatric deaths Rate of psychiatric deaths appears low However, this includes only maternal deaths up to 42 days postpartum Psychiatric causes make a significant contribution to late deaths: 95 of 419 late maternal deaths between 2009-12 were due to psychiatric causes Confidential Enquiry into psychiatric deaths will be included in the 2015 report

Key messages - 1 Overall there has been a statistically significant decrease in the maternal death rate between 2006-8 and 2009-12 in the UK. This decrease is predominantly due to a decrease in direct maternal deaths. There has been no significant change in the rate of indirect maternal death over the last 10 years, a time during which direct maternal deaths have halved. This needs action across a wide range of health services and not just maternity services.

Key messages - 2 The number of women dying from genital tract sepsis has significantly decreased since 2006-8. Influenza was an important cause of death during this period; half of the associated deaths occurred after a vaccine became available and can therefore be considered preventable. The importance of seasonal influenza immunisation for pregnant women cannot be over-emphasised; increasing immunisation rates in pregnancy against seasonal influenza must remain a priority.

Perinatal and Neonatal Mortality

Show of hands! Have you delivered a baby that was stillborn? Have you ever cared for a woman who had experienced a stillbirth? Do you know anyone who has had a stillbirth?

No one is protected! Ben Fogle tells of the 'unbearable' moment his wife gave birth to a stillborn son - and almost died herself Amanda Holden vows no more children after trauma of miscarriage and stillbirth Gary and Dawn Barlow - devastated “It was the most unfortunate thing that can ever happen to a person‘ - Lily Allen talks about stillbirth of son four years ago

Stillbirth Stillbirth rates in the UK are ‘one of the most shamefully neglected areas of public health’. Lancet It’s the only place in healthcare where more than two lives are at risk at any one point, she adds, saying that this surely must be prioritised. Student Midwife in Guardian TV debate

World wide Every day more than 7200 babies are stillborn 98% of them occur in low- and middle-income countries (WHO) “A death just when parents expect to welcome a new life”

Risk factors in high income countries Disadvantage Ethnic origin Maternal age Maternal obesity Smoking Alcohol Maternal disorders – diabetes and hypertension Multiple pregnancies / ART Women with previous stillbirth Fetal growth restriction Congenital anomalies Disadvantage Nordic countries – links with deprivation Educational achievement Ethnic origin USA, stillbirth occurs two to three times more often among African-American mothers than white mothers. In Canada and Australia, indigenous women are around twice as likely as white women to experience a stillbirth. UK – mothers from black and ethnic minorities were twice as likely to have a stillbirth.

Midwifery matters more than ever

Stillbirth in the rest of Europe

We have a different risk profile??

UK – Surveillance and Confidential Enquiry

Perinatal Surveillance Across the UK – data uploaded directly onto the MBRRACE site from maternity units Mother’s data Demographic Medical and obstetric history Antenatal care Labour and delivery Baby’s data Type of death Characteristics Cause of death

NI Surveillance PDN Anonymisation Copy of Customised Growth Chart NIMATS for denominator data

Provisional MBRRACE data - 2013 Total cases for 2013 6838 Late fetal losses (22/23 wks) 1028 Stillbirths 3513 Neonatal deaths 2097 Post neonatal deaths 205 Matched to ONS / NRS mortality data England 99.3% Wales 99.1% Scotland 96.4% Northern Ireland 100%* * validated within country

Extended perinatal death rates - UK Prior to 2013 data from ONS Child Mortality Statistics Live births, stillbirths, infant deaths and childhood deaths under 15. 2013 data from ONS death summaries (E&W), Births, Deaths and Other Vital Events - Quarterly Figures (Scotland), Deaths in Northern Ireland and MBRRACE-UK (NI)

Stillbirth Rates per country Prior to 2013 data from ONS Child Mortality Statistics Live births, stillbirths, infant deaths and childhood deaths under 15. 2013 data from ONS death summaries (E&W), Births, Deaths and Other Vital Events - Quarterly Figures (Scotland), Deaths in Northern Ireland (NI)

Neonatal death rates per country Prior to 2013 data from ONS Child Mortality Statistics Live births, stillbirths, infant deaths and childhood deaths under 15. 2013 data from ONS death summaries (E&W), Births, Deaths and Other Vital Events - Quarterly Figures (Scotland), MBRRACE-UK (NI)

Northern Ireland

Quick Test! How may stillbirths are there every year in Northern Ireland? On average in NI every year - how may stillbirths happen after 37 weeks? What are the main causes of stillbirth in Northern Ireland? Are stillbirths preventable? If so –what proportion? If we had the same stillbirth rate as Norway – how many babies how many stillbirths would we have had in NI in 2013? How can stillbirths be prevented?

Live births: Northern Ireland ~ 1980 and 2013 Drop of almost 1,000 births on last years figures – NISRA – 24,279 live births recorded

Births to mothers from A8 and all other countries: Northern Ireland ~ 2002 – 2013 In 1982 – 86% of mothers giving birth were from NI – this is now 82% In 2013 – 1257 mums from A8 countries – highest in last few years – not as big a rise as previous About 29% of births registered to mums outside NI are from A8 countries Tend to be younger Births to mums from other foreign countries has also doubled in lat decade

Live births by mother’s age: Northern Ireland ~ 1982 and 2013 937 births to teenage mums in 2013 – lowest ever 53% of births were to mums over 30 years of age

Perinatal mortality (all cases i. e Perinatal mortality (all cases i.e. crude rates): Northern Ireland ~ 2010 - 2013

Reported rates of stillbirth, perinatal and neonatal death across UK administrations and ROI

Intrapartum stillbirths: Northern Ireland ~ 2009 – 2013

Stillbirth rate per 1000 total births and 3 year rolling average, all cases: Northern Ireland ~ 2001 – 2013

Perinatal death rate and 3 year rolling average per 1000 total births, all cases: Northern Ireland ~ 2001 – 2013

Neonatal death rate and 3 year rolling average per 1000 live births, all cases: Northern Ireland ~ 2001 – 2013

Trend in numbers of stillbirths & NNDs associated with factors known to increase risk of mortality: Northern Ireland ~ 2007 – 2013 Stillbirths NNDS These figures are used to calculate adjusted mortality rates – table 4 in your report Increasing trend in MCA

Stillbirth mortality: Numbers and rates (crude and adjusted): Northern Ireland ~ 2009 – 2013

Perinatal mortality: Numbers and rates (crude and adjusted): Northern Ireland ~ 2009 – 2013

Neonatal, ENN and LNN mortality: Numbers & rates (crude & adjusted): Northern Ireland ~ 2008 – 2013

Multiple births

Sets of Twins and Triplets (live and stillborn) born to mothers resident in Northern Ireland ~ 2004-2013

Odds ratio of Stillbirth and Perinatal Deaths to total births, and Neonatal Deaths to live births for both singletons and twins: Northern Ireland 2011 - 2013

Socio demographic and clinical features

Numbers of stillbirths, perinatal and neonatal deaths by age of mother: Northern Ireland ~ 2012 &2013

Rates of stillbirth, Births to mothers in Northern Ireland by age band: ~ 2012 & 2013

Mortality rate by super output area quintile, Q5 being the least deprived area: Northern Ireland ~ 2012 & 2013

Mortality rate by mothers BMI at booking & reported smoking status: Northern Ireland ~ 2012- 2013

Characteristics of the babies

Numbers stillbirths and neonatal deaths by birthweight & gestation (all cases): Northern Ireland ~ 2013

Neonatal Deaths Nearly 80% of all perinatal deaths notified in 2013 had gestation </=37 weeks Forty five (57%) of all early neonatal death notifications in 2013 died within 6 hours of birth. All babies notified that were born at 22 weeks gestation or earlier died within six hours of delivery. 79 early neonatal deaths - 43 (54%) were notified as having absent or ineffective respiratory activity at 5 minutes after birth . Only 17 of these babies are recorded as being admitted to a neonatal unit. Thirty three (42%) babies that became early neonatal deaths in 2013 were admitted to a neonatal unit.

Cause of Death Classification and Coding Legacy CMACE – extended wigglesworth NIMACH - adapted legacy system to include infection and placental cause as per path reports CODAC - MBRRACE TULIP – emphasis on placental causes

Pathology Post Mortems and Placental Histology Assists in coding – accurate data Helps in identification of preventable factors Answers for parents and families Helps in pregnancy counselling Informs clinical care Improves our understanding

Placental Histology

Post Mortem Have you seen a post mortem? We already know why the baby died Informed consent

Cause of death - Stillbirth MCA - 21% (19 cases) in singleton births (6.6% in Wales and 11% in Scotland in 2012. 26% in ROI) Mechanical causes - 18% (16 cases ) Specific placental conditions (14 cases) Infection (11 cases) Using PH and PM reporting available, only 5 SBs remain unclassified. IUGR – need improved reporting (CGC) Mechanical causes – cord prolapse, cord entanglements, knots, uterine rupture and abnormal presentation PH reporting improves reporting in this category

Main Cause of Death (Maternal / Fetal) for Stillbirths of gestation 37weeks or greater: Northern Ireland ~ 2013 CI on-going - ? Do one in NI

Cause of death – Neonatal 74 cases in singleton pregnancies MCA – 34 (46%) with M/F classification, 43% with NN classification Extreme prematurity (14 cases) Respiratory conditions (13 cases)

Congenital anomaly Important cause of childhood death, chronic illness, and disability High burden to affected individuals, their families and the community in terms of quality of life, participation in the community and need for services. Most common severe congenital anomalies are heart defects, neural tube defects and Down syndrome. Causes and risk factors include: genetics (e.g. consanguinity) infections such as syphilis and rubella poor maternal nutrition (low levels of folate, obesity, diabetes mellitus), advanced maternal age, environmental and socioeconomic factors. Difficult to identify the exact causes about half can’t be linked to cause Many can be prevented – eg vaccination, adequate intake of folic acid and iodine, and adequate antenatal care.

Recommendations from NI report Continued and focused support for co-ordinated regional action to reduce perinatal mortality in Northern Ireland in partnership, with local and national stakeholders. Recommendation 2 NIMACH should continue to work with the NI Maternity Information system (NIMATS) staff to ensure that data related to perinatal mortality is captured using standardised formats and definitions as far as possible and any variation is understood. Recommendation 3 Coding of stillbirths and neonatal deaths in Northern Ireland should be undertaken using a variety of coding methodologies to allow comparison over time, benchmarking with other UK countries and a more complete understanding of local causes of mortality. Recommendation 4 By the end of 2015, services should ensure that placental histology is requested for all infants who are stillborn, die in the neonatal period or who are admitted to a neonatal unit. The benefits of a post mortem examination should be explained to all parents whose baby is either stillborn or dies in the neonatal period by an appropriately trained health care professional. Customised growth chart 2014 cases – we have 12 in total (9 SBs and 3 ENNDs) – out of 163 PDNs to date

Continued Recommendation 5 NIMACH should continue to work with key stakeholders to improve reporting of IUGR associated mortality in the context of the wider maternal population.   All notifications of perinatal mortality should be accompanied by a copy of the completed customised growth chart for the case to facilitate recording of IUGR. Recommendation 6 NIMI should consider exploring the potential to undertake a case note review of late term stillbirths in NI notified during 2014 period to compare local with national confidential enquiry findings. Recommendation 7 NIMACH should work with colleagues in genetics and pathology to improve recording and reporting of congenital anomaly. Appropriate links with key stakeholders with an interest in congenital anomaly in NI should be established and maintained; including Rare Diseases groups, Eurocat project and NI Child death review processes (CDOP) moving forward.

Quick review Approximately 100 Stillbirths in NI every year About 30-40 happen after 37 weeks gest Stillbirth is associated with placental causes, congenital anomaly, maternal behaviour, IUGR We know some stillbirths are preventable We don’t need any more guidelines?? Other countries have delivered reductions Midwives have a key role to play!!

Clinical standards & guidelines for normally formed term antepartum SBs NICE Clinical Guideline 62, Antenatal Care (2008) RCOG Standards for Maternity Care (2008) NICE Antenatal Pathway (2014) NICE Quality Standard QS22, Antenatal Care (2012) NICE Clinical Guideline 70, Induction of labour (2008) NICE Clinical Guideline 110, Pregnancy & complex social factors (2010) RCOG Green-top Guideline 57, reduced FMs (2011) RCOG Green-top Guideline 55, late IUFD & SB (2010) SANDS audit tool for maternity services (2011) SANDS Guidelines, Pregnancy loss and the death of a baby – Guide for professionals (2007) NICE Clinical Guideline 45, Antenatal & postnatal mental health (2007) Human Tissue Authority (2009) code of practice 3: post mortem examination RCPath Guidelines for Autopsy Investigation of Fetal and Perinatal death (2002)

$64 thousand dollar question What are YOU going to do about it? What do YOU think needs to happen? Please write down three things that every midwife could do that would potentially have an impact on reducing stillbirths.