Adrienne Gordon - University of Sydney

1. SYDNEY MEDICAL SCHOOL
Ending Preventable Stillbirths
Adrienne Gordon
Neonatologist, RPA Women and Babies
NHMRC Early Career Fellow
Discipline of Obstetrics, Gynaecology and Neonatology
Project Lead BABY1000 Study
Charles Perkins Centre
The University of Sydney

2. The Big Picture
2
Global burden = 2.6 million stillbirths
10 countries account for two-thirds of stillbirths in 2015
and also the majority of maternal and neonatal deaths
Same as if ALL the babies born in Western Europe
in one year had died

3. But…not counted
3
– NOT routinely reported to the
World Health Organization
– NOT included in the Global
Burden of Disease metrics
– NOT measured appropriately in
most national surveys
– NOT counted in the Millennium
Development Goals
– NOT included as a target under
UN SDG - health goal

4. 4Stillbirth – Progress and unfinished business Lancet EPS 2016

5. 5
“Almost no burden affecting families is so
big and yet so invisible both in society and
on the global public health agenda.”
Joy Lawn, M.D., PhD, Director of Global Evidence and Policy, Saving
Newborn Lives/Save the Children and a lead author of The Lancet’s
Stillbirths Series

6. International Comparisons – high income countries
Source: Flenady V et al. Lancet 2016.
› ~ 46,200 stillbirths in 2015
› ~ 20,000 avoidable stillbirths
if country rate were ≤ 2/1000
in all countries
› 1.8% per year average
reduction but large variation
› Netherlands had fastest
progress with ARR 6.8%
3630
4830
80
2140
720
300
640
2970
320 420
130 210
0
2000
4000
6000
8000
10000
12000
United
States of
America
Russian
Federa=on
Japan France United
Kingdom
Germany Italy Ukraine Spain Canada Poland Australia
Es=mated number of s=llbirths 2015
Top 12 HICs with highest burden
Avoidable s=llbirths (if country rate was 2/1000)
0
0.5
1
1.5
2
2.5
3
3.5
4
4.5
5
Series1
0
0.5
1
1.5
2
2.5
3
3.5
4
4.5
5
Series1
Annual Rate of Reduction (2000-2015)
0
0.5
1
1.5
2
2.5
3
3.5
4
4.5
5
Series1
HICs should not be ignored – thousands of preventable deaths every year
still occur and care after stillbirth is often inadequate
AUSTRALIA RANKING - 49 HIC
Stillbirth rate (after 28 weeks)
2.7 /1000 - ranked 16th
over double that of best performing
country -Iceland 1.3/1000
SBR Reduction 1.4% - ranked 35th
Over 6 times slower than best country
Over 200 late gestation stillbirths
could be prevented every year if
rates <2/1000
( 6 countries achieved this)

7. A significant bereavement
› For families the death of an infant is among one of the
most stressful life events an adult may experience
› Also staff - “...nearly one in 10 obstetricians reported they
had considered giving up obstetric practice because of the
emotional difficulty in caring for a patient with a stillbirth”
Fish, W., Differences in grief intensity in bereaved parents1986, Champaigne, IL: Research Press Co.
Gold, K.J., I. Leon, and M.C. Chames, National survey of obstetrician attitudes about timing the subsequent
pregnancy after perinatal death. American Journal of Obstetrics & Gynecology, 2010. 202(4): p. 357.e1-6.

8. Societal cost of stillbirth
Heazell Lancet EPS 2016

9. Why do they happen?
9

10. National Report
10
Released 12th Oct 2016

11. PSANZ PDC for stillbirths and neonatal deaths

12. Unexplained stillbirth
› 28% of Australian stillbirths
› 41% of NSW stillbirths
› More common near term
12
0
10
20
30
40
50
60
70
20 - 24 weeks 25 - 29 weeks 30 - 36 weeks >/= 37 weeks
%
Unexplained stillbirth
Gordon, A & Jeffery H, Classification and description of stillbirths in New South Wales, 2002-2004. MJA 2008.188(11):p.645-8.

13. Stillbirths Victoria
13

14. Stillbirths Victoria
14

15. Stillbirths Victoria
15

16. Stillbirths Victoria
16

17. Unexplained = underexplored
Unexplained
Congenital Abnormality
Spontaneous Preterm
Specific Perinatal Conditions
APH
Infection
Fetal Growth Restriction
Maternal Conditions
Hypertension
PRE POST
33%
29%
21%
20%
13%
30%
Headley, E., A. Gordon, and H. Jeffery, Reclassification of unexplained stillbirths using clinical practice guidelines. Australian & New
Zealand Journal of Obstetrics & Gynaecology, 2009. 49(3): p. 285-9.

18. What are the risk factors?

19. Risk factors for stillbirth in HIC
› Maternal obesity & overweight;
PAR 12% (8000 stillbirths each
year across all HIC)
› Maternal age > 35 years; PAR
11% (4000 stillbirths)
› Smoking; PAR 6 % (around
3000 stillbirths)
Flenady V, Koopmans L, Middleton P et al Major risk factors for stillbirth in high-income
countries: a systematic review and meta-analysis. Lancet 2011; published online April 14.
DOI:10.1016/S0140-6736(10)62233-7.

20. Risk Factors - NSW

21. Risk Factors NSW
21

22. Contributing Factors Victoria
Suspected
Contributing
factor
Stillbirths % of SB
factors
identified
Neonates % of NND
factors
identified
Total
Perinatal
Deaths
% of total
Antenatal care 49 26.9 14 9.9 63 19.5
Inadequate
management of
medical conditions
24 13.2 3 2.1 27 8.4
Inadequate
antenatal
monitoring
25 13.7 11 7.8 36 11.1
Factors relating to
the pregnant
woman, her family
and her social
situation
49 26.9 18 12.8 67 20.7
Intrapartum care 29 15.9 50 35.5 79 24.5
Inadequate
intrapartum
management
6 3.3 10 7.1 16 5
22
Victoria’s mothers, babies and children 2014 and 2015

23. Risk Factors Victoria
› 3 public hospitals
› Monash, Dandenong and Casey
› 2001 – 2011
› 44326 births over 10 years
23
Drysdale et al

24. Risk Factors Victoria
24
Davies-Tuck et al
Whole of Victoria
2000 – 2011
685 869 singleton births >/= 24 weeks

25. Risk factors show preventability
25
Population attributable risk for stillbirth, by region, for 12 potentially modifiable risk factors
Lawn et al Lancet EPS 2016

26. Maternal Obesity

27. Dose-Response Risk of Stillbirth with Obesity
27
Yao et al Obesity and the risk of stillbirth: a population-based cohort study AJOG 2014

28. Gestational risk of stillbirth with obesity
28
Yao et al Obesity and the risk of stillbirth: a population-based cohort study AJOG 2014

29. Weight gain between pregnancies and stillbirth
29

30. Maternal Age

31. Maternal Age risks
Maternal Age
at Delivery
Risk of trisomy
21
Risk of any
chromosomal
abnormality
Risk of SB
after 37 weeks
multipara
Risk of SB
after 37 weeks
nullipara
20 – 34 1/1667 – 1/485 1/562 – 1/538 1/775 1/269
35 – 39 1/378 1/192 1/502 1/156
40 + 1/106 1/66 1/304 1/116
Seminars in Perinatology : The case for antepartum surveillance or timed delivery for women of
advanced maternal age Ruth Fretts

32. Gestational risk of maternal age
0
0.25
0.5
0.75
1
1.25
1.5
1.75
2
2.25
2.5
2.75
3
3.25
22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42
Hazardoffetaldeathper1,000ongong
preganncies
Gestation (weeks)
<20 20-24 25-29 30-34 35-39 ge 40
Gordon et al. BMC Pregnancy and Childbirth 2013, 13:12

33. Absolute risks of SB ≥ 40 weeks
Age Group Antepartum
stillbirths
Undelivered
Pregnancies
Risk per 1000
undelivered
pregnancies
Nulliparous women
< 20 6 7624 0.79
20 – 24 7 9174 0.76
25 – 29 32 28685 1.11
30 – 35 23 26365.5 0.87
35 – 39 13 9143.5 1.42
≥ 40 6 1481 4.05
Multiparous women
< 20 1 1207 0.83
20 – 24 13 12204 1.07
25 – 29 27 27397 0.99
30 – 35 34 35603 0.95
35 – 39 7 18480 0.38
≥ 40 5 3513 1.42
Gordon et al. BMC Pregnancy and Childbirth 2013, 13:12

34. Clinical Guideline in UK
34

35. RCT of delivery timing in older women
35
N = 619
No difference in CS – IOL 32% (98/304) and expectant 33 % (103/314) RR 0.99; 95%
CI 0.87-1.14)
No difference in vaginal delivery (38% vs 33% RR1.30; 95% CI 0.96-1.77)
No difference in adverse outcomes
No deaths

36. 36
Denmark Experience
Hedegaard M et BMJ Open 2014

37. Decreased Fetal Movements

39. Monitoring of fetal movements
› Grant et al 1989, cluster randomised trial of 68000 women
- No difference in late stillbirth with formal fetal movement counting
- Therefore NOT recommended
› Systematic review of > 44,000 pregnancies 2004 found antepartum
mortality
- 1.9 per 1000 when the mother felt normal fetal movement
- 80.4 per 1000 when fetal movements were reduced (OR 16.1, 95% CI 9.0–28.9, p<0.0001)
› Saastad et al 2010 found providing women with information on reduced
movements resulted in a reduction of:
- Delayed reporting >48hrs (OR 0.61 95% CI 0.47 – 0.81)
- Stillbirths (OR 0.36 95% CI 0.19 – 0.69)
Monitoring of FM is cheap and easy
BUT…consensus is limited on :
- Definition of normal
- Which method of counting to use
- Which assessment tools should be used
- What intervention should be performed

40. Cases
n = 99 (%)
Controls
n = 190 (%)
OR (95% CI)
Increase in strength
no change
increased
decreased
69 (69.7)
14 (14.1)
16 (16.2)
74 (38.9)
99 (52.1)
17 (8.9)
1.0*
0.08 (0.03 – 0.21)
1.33 (0.51 – 3.48)
Advice received from
caregiver
44 (42.7) 107 (55.7) 0.6 (0.36 – 0.96)
Increase in frequency
no change
increased
decreased
46 (46.5)
7 (7.1)
46 (46.5)
75 (39.5)
66 (34.7)
49 (25.8)
1.0*
0.14 (0.05 – 0.37)
1.36 (0.69 – 2.67)
Sudden vigorous 5 (4.9) 2 (1.0) 8.3 (1.3 - 50)
40
Sydney SB Study: Fetal Movements

41. Where are we now?

42. Information for pregnant women
42

43. 43
Information for pregnant women

44. Do the Guidelines Work?
Cohort Term Group
Pre n (%) Post n(%) Pre n(%) Post n(%)
Labour onset
Spontaneous
Induction
No labour
249 (52.6)
154 (32.6)
70 (14.8)
257 (50)
197 (38.3)
60 (11.7)
238 (54)
145 (32.9)
58 (13.2)
242 (51.3)
187 (39.6)
43 (9.1)
P= 0.107 P=0.038
Delivered specifically for
RFM
FDIU
47 (9.9)
2 (0.4)
67 (13)
3 (0.6)
43 (9.8)
1 (0.2)
64 (13.5)
0
P= 0.296 P= 0.123
Delivery type
NVD
LSCS
Instrumental
219 (46.3)
161 (34)
93 (19.7)
287 (56.1)
128 (25)
97 (18.9)
205 (46.5)
146 (33.1)
90 (20.4)
273 (58)
104 (22.1)
94 (20)
P= 0.003 P= 0.001
Chaku et al Impact of a DFM policy on workload and perinatal outcome submitted BJOG 2017

45. Do the Guidelines Work?
Cohort Term Group
Pre Post Pre Post
Mean birthweight (g)
SGA
3321(565)
61 (12.9%)
3314 (543)
53 (10.3%)
3394 (553)
59 (13.4%)
3407(546)
45 (9.5%)
ns P = 0.066
APGAR 5min ≤7 29 (6.1%) 17 (3.3%) 27 (6.1%) 12 (2.5%)
P=0.05 P=0.007
Resuscitation
None
IPPV
Intubation
CPR
422 (89.2%)
46 (9.7%)
3 (0.6%)
2 (0.4%)
474 (92%)
34 (6.6%)
3 (0.6%)
4 (0.8%)
396 (89.8%)
41 (9.3%)
2 (0.5%)
2 (0.5%)
444 (93.9%)
23 (4.9%)
3 (0.6%)
3 (0.6%)
ns P=0.069
Cord pH (av) 7.208 7.222 7.205 7.219
P=0.07 ns
Admission to NICU 55 (11.6%) 50 (9.7%) 41 (9.3%) 24 (5.1%)
ns P=0.013

46. Deaths
Pre policy N
(rate per
1000)
Post
policy
N
(rate per
1000)
P- value
Perinatal
mortality rate
RPAH
73/5781 12.6 80/6009 13.3 ns
RFM total cohort
RFM term births
5 /473
3 /441
10.6
6.8
3 /515
0 /473
5.8
0
P=0.406
P=0.072
Chaku et al Impact of a DFM policy on workload and perinatal outcome submitted BJOG 2017

47. AFFIRM
47
Stepped – wedge cluster RCT
Sample size in protocol 143,000 total births
Package of care
25 – 30% reduction in stillbirth

48. My Babys Movements RCT
48

49. Fetal Growth Restriction

50. Table 7. Birth weight percentiles among preterm and term stillbirths and live births.
Bukowski R, Hansen NI, Willinger M, Reddy UM, Parker CB, et al. (2014) Fetal Growth and Risk of Stillbirth: A Population-Based
Case–Control Study. PLoS Med 11(4): e1001633. doi:10.1371/journal.pmed.1001633
http://journals.plos.org/plosmedicine/article?id=info:doi/10.1371/journal.pmed.1001633

51. Universal third trimester US
51
Triples detection
of SGA
Higher false +ve
For every
additional SGA
baby identified
there are 2 false
positives
AC GV plus
EFW < 10th = 40
x risk of severe
adverse
perinatal
outcome

52. What investigations to perform?

53. 1.Overview of key recommendations
2.Institutional perinatal mortality audit
3.Psychological and social aspects of
bereavement care
4.Perinatal postmortem examination
5.Investigation of stillbirth
6.Investigation of neonatal deaths
7.Perinatal mortality classification
PSANZ Perinatal Mortality Guidelines
Available from:
https://psanz.com.au/guidelines/

54. Clinical Practice Guideline
• Assist parents with cause of
death
• Assist parents and clinicians in
future pregnancy
• Enhance monitoring of
strategies to reduce PND
• Aim to reduce perinatal death

55. Clinical Practice Guideline
• Assist parents with cause of
death
• Assist parents and clinicians in
future pregnancy
• Enhance monitoring of
strategies to reduce PND
• Aim to reduce perinatal death

56. IMPROVE
IMproving Perinatal Mortality Review and
Outcomes Via Education
Implementing the PSANZ Perinatal Mortality Guidelines

57. Station 1:
Communicating with
parents about
perinatal autopsy
Station 2:
Autopsy and placental
examination
Station 3:
Investigation of
perinatal deaths
Station 4:
Examination of babies
who die in the
perinatal period
Station 5:
Audit and
classification of
perinatal death
Station 6:
Psychological and
social aspects of
perinatal bereavement
IMPROVE Skills Stations
Study Guide
Teaching Stations
Formative Assessment
SCORPIO Methodology: Hill DA, Medical Teacher 1992; 14: 37-41

58. PSANZ CPG V2.2, Apr 2009 p35 Participant Resources

59. • Single most important test to determine cause is the AUTOPSY and
PLACENTAL examination
• If use autopsy, placental path, fasting glucose, kleihauer, HbA1c and
thrombophilia then primary cause attributed in 72 % of cases.
• A systematic evaluation including review of clinical data, placental
pathology, karyotyping, and autopsy, a possible or probable cause of
death was identified in 76% of cases
Incerpi et al Stillbirth Evaluation: What tests are needed? AMJOG 1998;178(6) 1121-1125
Bukowski R, et al. Causes of death among stillbirths. JAMA 2011;3062459–.68
Investigation of stillbirths

60. Perinatal Autopsy: The gold standard investigation
Examination WA MMH
Total Perinatal Deaths 1326 136
Full/Limited Perinatal Autopsy 792 (60%) 50 (37%)
Non-Invasive Examination Data not collected 11 (8%)
Declined 493 (37%) 75 (55%)
Outcomes
Confirmed clinical findings 21% 39%
Provided a new diagnosis 20% 25%
Provided additional information 22% 10%
Remained unexplained 35% 25%
Western Australian Data: The 13th report of the perinatal and infant mortality committee of Western Australia for Deaths in the Triennium 2005-2007.
http://www.health.wa.gov.au/publications/subject_index/p/perinatal_infant_maternal.cfm
Mater Mother’s Hospital Brisbane Data: 1/6/2010-31/5/2011. MMH Bereavement Support Service

61. 1. What is it?
2. Why
Is it
done?
4. Consent
5. When
is it
done?
7. Cost
Information for
parents about
perinatal
autopsy
3. How is
it done?
6. Results

62. • External examination by specialist
• Babygram (X-ray)
• UItrasound scan
• MRI
• Blood sample / DNA for storage
• Limited autopsy
• Directed biopsy – tissue sample
Alternative investigations where permission for full
autopsy is not obtained

63. Standardised audit UK
http://www.rcog.org.uk/eachbabycounts

64. New perinatal audit tool Scotland
› NPSA Intrapartum perinatal loss tool
› Web based
› Demographics and care elements
› MBRRACE dataset
› Drop down boxes for guidance
› Includes taxonomy
› Generates action plan
› Standardised grading of care
64

65. 65

66. Standardised National Audit NZ

67. Reduced perinatal deaths in NZ
67

68. How to support families?

69. What is grief?
› Grief is the normal affective response of a person to a
significant loss
- Sadness, irritability, disturbed sleep and appetite, a sense of longing for the lost
person, and occasionally visual or auditory hallucinations of the deceased.
› An acute sense of loss generally gives way to feelings of low
mood or depression.
› Anger is common
Psychological aspects of perinatal loss. Badenhorst W. Hughes P. Best Practice & Research in Clinical Obstetrics &
Gynaecology. 21(2):249-59, 2007

70. Grief duration
› 6 months after the loss
- Most parents will have recovered enough to resume normal
activities and be beginning to enjoy life again,
› May continue to feel significant distress for 2 or even more
years after the loss
› Suicidal ideation or psychotic symptoms are rare, and require
urgent psychiatric referral
Psychological aspects of perinatal loss. Badenhorst W. Hughes P. Best Practice & Research in Clinical Obstetrics &
Gynaecology. 21(2):249-59, 2007

71. Evidence for grief interventions
› Cochrane No trials
› Counseling interventions and self-help groups are valued
- no evidence that they reduce psychological symptom levels
› Holding the baby
- Now culturally entrenched
- Highly valued by some parents;
- Association with:
• post-traumatic stress disorder in parents
• disorganization of infant-mother attachment in the next born
Psychological aspects of perinatal loss. Badenhorst W. Hughes P. Best Practice & Research in Clinical Obstetrics &
Gynaecology. 21(2):249-59, 2007

72. Cunningham K. Holding a stillborn baby: does the existing evidence help us provide guidance?
MJA 196 (9) · 21 May 2012

73. Talking with families
Range of birth options
E motional care
S tay in hospital
P rovision of information
E
xtra special
circumstances
Creating memories
T ime
F uneral arrangements
Understanding
L ove and life after

74. Bereaved parents’ experience of care and follow-up
after stillbirth in Sydney hospitals
74
0
10
20
30
40
50
60
70
80
90
100
Waiting area Time spent Info adequate Time to ask Overall satisfied
%ofresponses
Strongly Agree/Agree
Neutral
Disagree/Strongly Disagree
Bond D, Raynes-Greenow C, Gordon A under review ANZJOG 2017

75. Major Themes Identified
75
Inappropriate
comments
Understanding
Being listened to
Integrity/
honesty
Communication
Professionalism
of staff
Empathy
Choice
Creating
memories
Time with caregiver
Continuity of care
Time during appointments
Physical environment
Time spent
with baby
Time for results
Follow-up
visit
Instruction
Support services
Guidance
Brochures
Information
Post mortem
Integrated
Support
After
Infant
Loss
Privacy

76. } Twice weekly service
} In an appropriate setting away from pregnant mothers and babies
} Central coordinator
◦ Informs families and staff
◦ Continuity
} Core team
◦ Obstetrician/Neonatologist
◦ Midwife
◦ SW
◦ Geneticist
◦ Counsellor
An example of a perinatal loss clinic

77. Satisfaction in iSAIL 2015 - 2016
77
0
10
20
30
40
50
60
70
80
90
100
Waiting area Time spent Info adequate Time to ask Overall satisfied
Strongly
agree/Agree
Neutral
Disagree/
Strongly
disagree

78. Some quotes
› Knowing the facts, having compassionate people ask how we are and giving advise
› Getting to speak about the things that I didn't like or upset me with the care of my baby
› Further understanding and a type of closure to our experience. A group empathy and an
ability to discuss any point with the appropriate people at the one time.
› Genuine care expressed by clinic manager and her understanding of the experience. I feel
very fortunate to have had our very worst time with the very best team.
› It helped to answer my questions regarding future pregnancy, potential risks. I felt that
everyone present understood our situation and were very sensitive in the way they
approached the meeting.
› The possibility to thank and ask questions of the people involved in my care. Referral to
ongoing support An opportunity for closure. Diana is amazing - She really understands us
and I felt comfortable and connected to her since our first conversation. She is also
incredibly responsive and helpful. I'm sure she works overtime every week!!
› The support I felt whilst we were there and also I received answers to questions I had been
wanting know.
› The feeling that people cared
› I found it was very helpful. Someone is there to listen and explain
78

79. Next pregnancy?

80. Subsequent pregnancies
Hughes et al Assessment of guidelines for good practice in psychosocial care of mothers after stillbirth: a cohort study Lancet 2002;

81. Subsequent pregnancies
Women who had conceived within 12 months after loss had a significantly higher risk
of high state anxiety during the next pregnancy and of depression and both state and
trait anxiety 12 months post partum than women with longer time since loss
Hughes et al Stillbirth as risk factor for depression and anxiety in the subsequent pregnancy: cohort study. BMJ 1999;318:1721–4

82. Recurrence Risk
82
Metaanalysis of cohort studies – adjusted risk
Lamont et al Risk of recurrent stillbirth: systematic review and meta-analysis BMJ 2015

83. Surveillance in future pregnancies
83

84. An example PAL pathway
84
Placental
profile 17
weeks

85. Outcomes Manchester Rainbow Clinic
85

86. Summary
› Stillbirth remains a major public health issue
› Potential for prevention for known and newer risk factors
› All deaths deserve adequate investigation
› Standardised perinatal audit with feedback is useful and reduces deaths
› Families need support both at the time, in follow up and in subsequent
pregnancy
86

87. Thank-you