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

2. 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

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

4. 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?

5. 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%.

6. Global Maternal Mortality – 1990, 2005 and 2013

7. Maternal Mortality in the UK
10 per 100,000
maternities
11 per 100,000
maternities
90 per 100,000
maternities

8. International comparisons
MBRRACE-UK
10.1 per 100,000 maternities (95%CI ) for
MDE Ireland
8.6 per 100,000 maternities (95%CI ) for
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 ) for

9. 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

10. MBRRACE–UK Methods

11. 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

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

13. 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
36 women’s deaths were classified as coincidental
Thus there were a total of 321 women who died
253/ in (10.63/100,000)
243/ in (10.12/100,000)

14. Maternal Death Each death is a personal tragedy for every family
Between 2009 and 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

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

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

17. 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

18. Maternal death rate 1985-2011 (Three year periods)

19. Direct maternal deaths 1985-2011 (Three year periods)

20. Indirect maternal deaths 1985-2011 (Three year periods)

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

22. Causes of maternal death

23. 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 and ; a statistically significant decrease
RR 0.44; 95% CI , p=0.016
PET death rate 1 in 260,000

24. Maternal deaths from genital tract sepsis
Rate in : 0.50 per 100,000 (95%CI )

25. Sepsis – all causes
N=71

26. Influenza
N=29

27. Flu Aware NI

28. 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 was 2.0 per 100,000 maternities (95%CI )
Cardiac disease remains the largest single cause of indirect maternal deaths; rate more than doubled since (RR 2.2, 95%CI )

29. 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 were due to psychiatric causes
Confidential Enquiry into psychiatric deaths will be included in the 2015 report

30. Key messages - 1
Overall there has been a statistically significant decrease in the maternal death rate between and 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.

31. Key messages - 2
The number of women dying from genital tract sepsis has significantly decreased since
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.

32. Perinatal and Neonatal Mortality

33. 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?

34. 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

35. 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

36. 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”

37. 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.

38. Midwifery matters more than ever

39. Stillbirth in the rest of Europe

40. We have a different risk profile??

41. UK – Surveillance and Confidential Enquiry

42. 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

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

44. Provisional MBRRACE data - 2013
Total cases for
Late fetal losses (22/23 wks)
Stillbirths
Neonatal deaths
Post neonatal deaths
Matched to ONS / NRS mortality data
England %
Wales %
Scotland %
Northern Ireland %*
* validated within country

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

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

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

48. Northern Ireland

49. 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?

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

51. 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

52. 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

53. Perinatal mortality (all cases i. e
Perinatal mortality (all cases i.e. crude rates): Northern Ireland ~

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

55. Intrapartum stillbirths: Northern Ireland ~ 2009 – 2013

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

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

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

59. 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

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

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

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

63. Multiple births

64. Sets of Twins and Triplets (live and stillborn) born to mothers resident in Northern Ireland ~

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

66. Socio demographic and clinical features

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

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

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

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

71. Characteristics of the babies

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

73. Neonatal Deaths
Nearly 80% of all perinatal deaths notified in 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.

74. 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

75. 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

76. Placental Histology

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

78. Cause of death - Stillbirth
MCA - 21% (19 cases) in singleton births (6.6% in Wales and 11% in Scotland in % 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

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

80. 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)

81. 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.

82. 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

83. 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.

84. Quick review Approximately 100 Stillbirths in NI every year
About 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!!

85. 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)

89. $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.