Learning from Surveillance and Confidential Enquiry

Northern Ireland Perinatal Mortality

Heather Reid

Programmes

• Surveillance– 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

90 per 100,000maternities

1952-54

Maternal Mortality in the UK

11 per 100,000maternities

2006-08

2009-12

10 per 100,000maternities

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

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)

2004 2005 2006 2007 2008 2009 2010 20110

2

4

6

8

10

12

14

16

Mid-year of each three-year period

Rate

per

100

000

mat

erni

ties

27% reduction in maternal death rate, p<0.001

Maternal death rate 2003-12(Three year rolling averages)

2004 2005 2006 2007 2008 2009 2010 20110

2

4

6

8

10

12

14

16

Mid-year of each three-year period

Rate

per

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ties

Direct and Indirect maternal death rate

Direct maternal death rate

Indirect maternal death rate

Maternal death rate 2003-12(Three year rolling averages)

2004 2005 2006 2007 2008 2009 2010 20110

2

4

6

8

10

12

14

16

Mid-year of each three-year period

Rate

per

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000

mat

erni

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Direct and Indirect maternal death rate

Direct maternal death rate

Indirect maternal death rate

48% reduction in direct maternal death rate, p<0.001No significant decrease in indirect maternal deaths, p=0.73

Maternal death rate 1985-2011(Three year periods)

1985-1987 1988-1990 1991-1993 1994-1996 1997-1999 2000-2002 2003-2005 2006-2008 2009-20110

2

4

6

8

10

12

14

16

Triennium

Rate

per

100

000

mat

erni

ties

Direct maternal deaths 1985-2011(Three year periods)

1985-1987 1988-1990 1991-1993 1994-1996 1997-1999 2000-2002 2003-2005 2006-2008 2009-20110

1

2

3

4

5

6

7

8

9

10

Triennium

Rate

per

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mat

erni

ties

Indirect maternal deaths 1985-2011(Three year periods)

1985-1987 1988-1990 1991-1993 1994-1996 1997-1999 2000-2002 2003-2005 2006-2008 2009-20110

1

2

3

4

5

6

7

8

9

10

Triennium

Rate

per

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Causes of maternal death

Other Indire

ct cau

ses

Cardiac

disease

Neuro

logical

Thro

mbosis

Psychiat

ric ca

uses

Genita

l tract

sepsis

Haemorrh

age

Pre-ecl

ampsia

Amniotic fluid em

bolism

Early

pregnan

cy dea

ths

Anaesth

esia

Indirect

malign

ancie

s0.00

0.50

1.00

1.50

2.00

2.50

Rate

per

100

,000

mat

erni

ties

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

Maternal deaths from genital tract sepsis

1985-87 1988-90 1991-93 1994-96 1997-99 2000-02 2003-05 2006-08 2009-110.00

0.20

0.40

0.60

0.80

1.00

1.20

1.40

1.60

1.80

Triennium

Rate

per

100

,000

mat

erni

ties

Rate in 2010-12: 0.50 per 100,000 (95%CI 0.26-0.87)

Sepsis – all causes

Influenza

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!

“It was the most unfortunate thing that can ever happen to a person‘ - Lily Allen talks about stillbirth of son four years ago

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

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

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

20032004

20052006

20072008

20092010

20112012

20130.00

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2.00

3.00

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6.00

7.00

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9.00

10.00

Extended perinatal deaths per 1,000 total birthsStillbirths per 1,000 total birthsNeonatal deaths per 1,000 live births

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

2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 20130.00

1.00

2.00

3.00

4.00

5.00

6.00

7.00

Stillbirths per 1,000 total births

EnglandScotlandWalesNI

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

2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 20130.00

1.00

2.00

3.00

4.00

5.00

6.00

Neonatal deaths per 1,000 live births

EnglandScotlandWalesNI

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

Births to mothers from A8 and all other countries: Northern Ireland ~ 2002 – 2013

Live births by mother’s age: Northern Ireland ~ 1982 and 2013

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

2011 2012 2013Total births (live+still) 25688 25682 24376Total live births 25595 25563 24274Stillbirth 93 119 103Early neonatal death 68 64 79Perinatal death 161 183 182Late Neonatal Death 16 10 9Neonatal death 84 74 88Late fetal loss 26 33 19

2011 2012 2013Total births (live+still) 25688 25682 24376

Stillbirth a 3.62 [2.92 - 4.44] 4.63 [3.84 - 5.54] 4.23 [3.45 - 5.12]

Early neonatal death b 2.66 [2.06 - 3.37] 2.50 [1.93 - 3.20] 3.25 [2.58 - 4.06]

Perinatal mortality a 6.27 [5.34 - 7.31] 7.13 [6.06 - 8.15] 7.47 [6.42 - 8.63]

Late Neonatal Death b 0.63 [0.36 - 1.02] 0.39 [0.19 - 0.72] 0.37 [0.17 - 0.70]

Neonatal mortality b 3.28 [2.62 - 4.06] 2.89 [2.27 - 3.63] 3.63 [2.91 - 4.47]

Numbers

Rates [95% CIs]

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

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)

Main Cause of Death (Maternal / Fetal) for Stillbirths of gestation 37weeks or greater:

Northern Ireland ~ 2013

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 reportRecommendation 1Continued 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 3Coding 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 4By 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.

ContinuedRecommendation 5NIMACH 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 6NIMI 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 7NIMACH 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.