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Home > CASaND Guideline > Investigations for perinatal death > Section 6 references
Care Around Stillbirth and Neonatal Death (CASaND) Clinical Practice Guideline

Section 6 references

Care around loss - parent resources

  1. Wojcieszek, A.M., et al., Interventions for investigating and identifying the causes of stillbirth. Cochrane Database of Systematic Reviews, 2018. 4(4:CD012504) doi: 10.1002/14651858.CD012504.pub2.
  2. Sexton, J.K., et al., Prospective cohort study: Causes of stillbirth in Australia 2013–2018. Australian & New Zealand Journal of Obstetrics & Gynaecology, 2021. 61(5): p. 667–674 doi: 10.1111/ajo.13334.
  3. Ibiebele, I., et al., Predictors of autopsy following stillbirth in Queensland, Australia: A population-based study. Australian & New Zealand Journal of Obstetrics & Gynaecology, 2017. 57(1): p. 33–39 doi: 10.1111/ajo.12563.
  4. Heazell, A.E., et al., A difficult conversation? The views and experiences of parents and professionals on the consent process for perinatal postmortem after stillbirth. BJOG: An International Journal of Obstetrics and Gynaecology, 2012. 119(8): p. 987–997 doi: 10.1111/j.1471-0528.2012.03357.x.
  5. Burden, C., et al., From grief, guilt pain and stigma to hope and pride – a systematic review and meta-analysis of mixed-method research of the psychosocial impact of stillbirth. BMC Pregnancy and Childbirth, 2016. 16(1): p. 9 doi: 10.1186/s12884-016-0800-8.
  6. Tsakiridis, I., et al., Investigation and management of stillbirth: A descriptive review of major guidelines. Journal of Perinatal Medicine, 2022. 50: p. 796–813 doi: 10.1515/jpm-2021-0403.
  7. Australian Institute of Health and Welfare. Australia’s mothers and babies: Stillbirths and neonatal deaths. 2022; Available from: https://www.aihw.gov.au/reports/mothers-babies/stillbirths-and-neonatal-deaths.
  8. Perinatal and Maternal Mortality Review Committee. Fifteenth annual report of the Perinatal and Maternal Mortality review Committee. Te Pūrongo ā-Tau Tekau mā mā Rima o te Komiti Arotake Mate Pēpi, Mate Whaea Hoki: Reporting Mortality and Morbidity 2020. Te Tuku Pūrongo mō te Mate me te Whakamate 2020. 2022; Available from: https://www.hqsc.govt.nz/assets/Our-work/Mortality-review-committee/PMMRC/Publications-resources/15thPMMRC-report-final.pdf
  9. Perinatal and Maternal Mortality Review Committee. Fourteenth annual report of the Perinatal and Maternal Mortality Review Committee. 2021; Available from: www.hqsc.govt.nz/our-programmes/mrc/pmmrc.
  10. Fathima P, et al. The 16th report of the Perinatal and Infant Mortality Committee of Western Australia, 2014–2018. 2022; Available from: https://www.health.wa.gov.au/~/media/Corp/Documents/Reports-and-publications/Perinatal-infant-and-maternal/16-Report-of-the-Perinatal-and-Infant-Mortality-Committee.pdf.
  11. Maternal and Perinatal Mortality Committee. Maternal and perinatal mortality in South Australia 2020. 2023; Available from: https://www.wellbeingsa.sa.gov.au/assets/downloads/maternal-perinatal-mortality/Maternal-and-Perinatal-Mortality-in-South-Australia-2020.pdf.
  12. Queensland Maternal and Perinatal Quality Council. Queensland mothers and babies 2018–2019. 2021; Available from: https://clinicalexcellence.qld.gov.au/priority-areas/safety-and-quality/queensland-maternal-and-perinatal-quality-council.
  13. Department of Health Tasmania. Council of Obstetric & Paediatric Mortality and Morbidity: Annual report 2020. 2022; Available from: https://www.health.tas.gov.au/about/corporate-and-industry-information/council-obstetric-and-paediatric-mortality-and-morbidity-copmm.
  14. Rocha Catania, T., et al., When one knows a fetus is expected to die: Palliative care in the context of prenatal diagnosis of fetal malformations. Journal of Palliative Medicine, 2017. 20(9): p. 1020–1031 doi: 10.1089/jpm.2016.0430.
  15. Siassakos, D., et al., All bereaved parents are entitled to good care after stillbirth: A mixed-methods multicentre study (INSIGHT). BJOG: An International Journal of Obstetrics & Gynaecology, 2018. 125(2): p. 160–170 doi: 10.1111/1471-0528.14765.
  16. Schirmann, A., et al., Understanding mothers’ decision‐making needs for autopsy consent after stillbirth: Framework analysis of a large survey. Birth: Issues in Perinatal Care, 2018. 45(3): p. 255–262 doi: 10.1111/birt.12344.
  17. Holste, C., et al., Mothers’ attitudes towards perinatal autopsy after stillbirth. Acta Obstetetrica et Gynecologica Scandinavica, 2011. 90(11): p. 1287–1290 doi: 10.1111/j.1600-0412.2011.01202.x.
  18. Lewis, C., et al., Factors affecting uptake of postmortem examination in the prenatal, perinatal and paediatric setting. BJOG: An International Journal of Obstetrics and Gynaecology, 2018. 125(2): p. 172–181 doi: 10.1111/1471-0528.14600.
  19. Rankin, J., C. Wright, and T. Lind, Cross sectional survey of parents’ experience and views of the postmortem examination. BMJ, 2002. 324(7341): p. 816–818 doi: 10.1136/bmj.324.7341.816.
  20. Cronin, R.S., et al., Late stillbirth post mortem examination in New Zealand: Maternal decision‐making. Australian & New Zealand Journal of Obstetrics & Gynaecology, 2018. 58(6): p. 667–673 doi: 10.1111/ajo.12790.
  21. Perinatal and Maternal Mortality Review Committee. Eleventh annual report of the Perinatal and Maternal Mortality Review Committee: Reporting mortality 2015. 2017; Available from: https://www.hqsc.govt.nz/resources/resource-library/eleventh-annual-report-of-the-perinatal-and-maternal-mortality-review-committee/.
  22. Horey, D., et al., Decision influences and aftermath: Parents, stillbirth and autopsy. Health Expectations, 2014. 17(4): p. 534–544 doi: 10.1111/j.1369-7625.2012.00782.x.
  23. Meaney, S., et al., Parental decision making around perinatal autopsy: A qualitative investigation. Health Expectations, 2015. 18(6): p. 3160–3171 doi: 10.1111/hex.12305.
  24. Lewis, C., et al., Availability of less invasive prenatal, perinatal and paediatric autopsy will improve uptake rates: A mixed-methods study with bereaved parents. BJOG: An International Journal of Obstetrics and Gynaecology, 2019. 126(6): p. 745–753 doi: 10.1111/1471-0528.15591.
  25. Henderson, J. and M. Redshaw, Parents’ experience of perinatal post-mortem following stillbirth: A mixed methods study. PLoS One, 2017. 12(6): p. e0178475 doi: 10.1371/journal.pone.0178475.
  26. Stacey, T., et al., An exploration of migrant women’s perceptions of public health messages to reduce stillbirth in the UK: A qualitative study. BMC Pregnancy and Childbirth, 2021. 21(1) doi: 10.1186/s12884-021-03879-2.
  27. Lewis, C., et al., Minimally invasive autopsy for fetuses and children based on a combination of post-mortem MRI and endoscopic examination: A feasibility study. Health Technology Assessment, 2019. 23(46) doi: 10.3310/hta23460.
  28. Kilcullen, M., et al., Decisions to consent for autopsy after stillbirth: Aboriginal and Torres Strait Islander women’s experiences. Australian and New Zealand Journal of Obstetrics and Gynaecology, 2020. 60(3): p. 350–354 doi: 10.1111/ajo.13052.
  29. Alaradi, M., M.H. Hutti, and N. Chaffin, Arab Muslims’ perceptions of perinatal loss care in the United States of America. Health & Social Care in the Community, 2022. 30(5): p. 1838–1846 doi: 10.1111/hsc.13563.
  30. Pol, G. Diverse First Nations identities. 2022; Available from: https://www.commonground.org.au/article/diverse-first-nations-identities.
  31. Siassakos, D., et al., All bereaved parents are entitled to good care after stillbirth: a mixed-methods multicentre study (INSIGHT). BJOG: An International Journal of Obstetrics and Gynaecology, 2018. 125(2): p. 99–263 doi: 10.1111/1471-0528.14765.
  32. Redshaw, M., R. Rowe, and J. Henderson. Listening to parents after stillbirth or the death of their baby after birth. 2014; Available from: https://www.researchgate.net/publication/318725800_Listening_to_parents_after_stillbirth_or_the_death_of_their_baby_after_birth
  33. Fallet-Bianco, C., et al., No. 365-Fetal and perinatal autopsy in prenatally diagnosed fetal abnormalities with normal chromosome analysis. Journal of Obstetrics and Gynaecology Canada, 2018. 40(10): p. 1358 doi: 10.1016/j.jogc.2018.05.017.
  34. Royal College of Pathologists of Australasia. RCPA best practice guideline for perinatal death investigations. 2023; Available from: https://www.rcpa.edu.au/Library/Practising-Pathology/Stillbirth-Investigations-Pathologists-Project/Doc/Best-Practice-Guideline-for-Perinatal-Death-Invest
  35. Ellis, A., et al., Systematic review to understand and improve care after stillbirth: A review of parents’ and healthcare professionals’ experiences. BMC Pregnancy and Childbirth, 2016. 16(1): p. 1–19 doi: 10.1186/s12884-016-0806-2.
  36. Boyle, F.M., et al., Parent engagement in perinatal mortality reviews: An online survey of clinicians from six high-income countries. BJOG: An International Journal of Obstetrics and Gynaecology, 2021. 128(4): p. 696–703 doi: 10.1111/1471-0528.16529.
  37. Bakhbakhi, D., et al., Care following stillbirth in high-resource settings: Latest evidence, guidelines, and best practice points. Seminars in Fetal & Neonatal Medicine, 2017. 22(3): p. 161–166 doi: 10.1016/j.siny.2017.02.008.
  38. Page, J.M. and R.M. Silver, Stillbirth: Evaluation and follow-up. Obstetrics and Gynecology Clinics of North America, 2020. 47(3): p. 439–451 doi: 10.1016/j.ogc.2020.04.008.
  39. Flenady, V., et al., Stillbirths: The way forward in high-income countries. Lancet, 2011. 377(9778): p. 1703–1717 doi: 10.1016/s0140-6736(11)60064-0.
  40. Perinatal Society of Australia and New Zealand and Centre of Research Excellence in Stillbirth. Position statement: Improving decision-making about timing of birth for low-risk woman at term. 2022 December; Available from: https://stillbirthcre.org.au/wp-content/uploads/2021/03/Element-5_Timing-of-Birth-Position-Statement-1.pdf.
  41. Page, J.M., et al., Diagnostic tests for evaluation of stillbirth: Results from the stillbirth collaborative research network. Obstetrics and Gynecology, 2017. 129(4): p. 699–706 doi: 10.1097/AOG.0000000000001937.
  42. Royal College of Obstetricians and Gynaecologists. Late intrauterine fetal death and stillbirth (Green-top guideline No. 55). 2010; Available from: https://www.rcog.org.uk/guidance/browse-all-guidance/green-top-guidelines/late-intrauterine-fetal-death-and-stillbirth-green-top-guideline-no-55/.
  43. American College of Obstetricians and Gynecologists, Management of stillbirth: Obstetric Care Consensus No 10 Obstetrics & Gynecology, 2020. 135(3): p. e110–e132
  44. Leduc, L., No. 394. Stillbirth investigation. Journal of Obstetrics and Gynaecology Canada, 2020. 42(1): p. 92–99 doi: 10.1016/j.jogc.2019.04.001.
  45. Flenady, V., et al., Clinical practice guideline for care around stillbirth and neonatal death. Vol. 3.4. 2020, Brisbane: NHMRC Centre of Research Excellence.
  46. Cullen, S., E. Mooney, and P. Downey, A review of findings from placental histology in cases of stillbirth following the amendment to the Coroner’s Act. Irish Journal of Medical Science, 2021. 190(4): p. 1435–1437 doi: 10.1007/s11845-020-02446-6.
  47. Kang, X., et al., Fetal postmortem imaging: An overview of current techniques and future perspectives. American Journal of Obstetrics & Gynecology, 2020. 223(4): p. 493–515 doi: 10.1016/j.ajog.2020.04.034.
  48. Nijkamp, J.W. Studies on stillbirth evaluation. Research Institute SHARE (Science in Healthy Ageing and healthcaRE) 2023.
  49. Sonnemans, L.J.P., et al., Dutch guideline for clinical foetal-neonatal and paediatric post-mortem radiology, including a review of literature. European Journal of Pediatrics 2018. 177(6): p. 791–803 doi: 10.1007/s00431-018-3135-9.
  50. McPherson, E., et al., Alternatives to autopsy for fetal and early neonatal (perinatal) deaths: Insights from the Wisconsin Stillbirth Service Program. Birth Defects Research, 2017. 109(18): p. 1430–1441 doi: 10.1002/bdr2.1112.
  51. Bakhbakhi, D., et al., PARENTS 2 Study: A qualitative study of the views of healthcare professionals and stakeholders on parental engagement in the perinatal mortality review – From ‘bottom of the pile’ to joint learning. BMJ Open, 2018. 8(11): p. e023792 doi: 10.1136/bmjopen-2018-023792.
  52. Holden, S., T. Fernandes, and C. Gannon, Perinatal pathology. Diagnostic Histopathology, 2019. 25(9): p. 350–359 doi: 10.1016/j.mpdhp.2019.06.006.
  53. Schoner, K., et al., Fetal pathology of neural tube defects—An overview of 68 cases. Geburtshilfe und Frauenheilkunde, 2017. 77(5): p. 495–507 doi: 10.1055/s-0043-103459.
  54. Wisconsin Stillbirth Service Program. Guide to etiologic evaluation of the stillborn infant. n.d  [cited 2023 14 July]; Available from: https://www.obgyn.wisc.edu/WiSSP/guidetoe.
  55. Matsika, A., et al., DNA extraction from placental, fetal and neonatal tissue at autopsy: what organ to sample for DNA in the genomic era? Pathology, 2019. 51(7): p. 705–710 doi: 10.1016/j.pathol.2019.09.001.
  56. Graham, N. and A.E.P. Heazell, When the fetus goes still and the birth is tragic: The role of the placenta in stillbirths. Obstetrics and Gynecology Clinics of North America, 2020. 47(1): p. 183–196 doi: 10.1016/j.ogc.2019.10.005.
  57. Taweevisit, M. and P.S. Thorner, Placental findings contributing to perinatal death: A 15-year retrospective review from a teaching hospital in Thailand. Fetal and Pediatric Pathology, 2022. 41(1): p. 18–28 doi: 10.1080/15513815.2020.1747121.
  58. Miller, E.S., et al., Stillbirth evaluation: a stepwise assessment of placental pathology and autopsy. American Journal of Obstetrics and Gynecology, 2016. 214(1): p. 115. e111–115. e116 doi: 10.1016/j.ajog.2015.08.049.
  59. Pacheco, M.C. and R.C. Reed, Pathologist effort in the performance of fetal, perinatal, and pediatric autopsies: A survey of practice. Archives of Pathology and Laboratory Medicine, 2017. 141(2): p. 209–214 doi: 10.5858/arpa.2015-0531-OA.
  60. Ernst, L.M., A pathologist׳s perspective on the perinatal autopsy. Seminars in Perinatology, 2015. 39(1): p. 55–63 doi: 10.1053/j.semperi.2014.10.008.
  61. Roberts, D.J., et al., Criteria for placental examination for obstetrical and neonatal providers. American Journal of Obstetrics and Gynecology, 2023. 228(5): p. 497–508 doi: 10.1016/j.ajog.2022.12.017.
  62. Charles A and Smith N., Perinatal postmortem, in Roberton’s Textbook of Neonatology, Rennie M and Roberton N, Editors. 2004, Churchill Livingstone.
  63. Martinez-Portilla, R.J., et al., Added value of chromosomal microarray analysis over conventional karyotyping in stillbirth work-up: systematic review and meta-analysis. Ultrasound in Obstetrics & Gynecology, 2019. 53(5): p. 590–597 doi: 10.1002/uog.20198.
  64. Miceikaite, I., et al., Comprehensive prenatal diagnostics: Exome versus genome sequencing. Prenatal Diagnosis, 2023. 43(9): p. 1132–1141 doi: 10.1002/pd.6402.
  65. Tran Mau-Them, F., et al., Prenatal diagnosis by trio exome sequencing in fetuses with ultrasound anomalies: A powerful diagnostic tool. Frontiers in Genetics, 2023. 14: p. 1099995 doi: 10.3389/fgene.2023.1099995.
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  67. Mone, F., et al., Fetal hydrops and the Incremental yield of Next-generation sequencing over standard prenatal Diagnostic testing (FIND) study: Prospective cohort study and meta-analysis. Ultrasound in Obstetrics & Gynecology, 2021. 58(4): p. 509–518 doi: 10.1002/uog.23652.
  68. Zhi, Y., et al., Prenatal exome sequencing analysis in fetuses with central nervous system anomalies. Ultrasound in Obstetrics & Gynecology, 2023 doi: 10.1002/uog.26254.
  69. Byrne, A.B., et al., Genomic autopsy to identify underlying causes of pregnancy loss and perinatal death. Nature Medicine, 2023. 29(1): p. 180–189 doi: 10.1038/s41591-022-02142-1.
  70. Tan, T.Y., et al., A head-to-head evaluation of the diagnostic efficacy and costs of trio versus singleton exome sequencing analysis. European Journal of Human Genetics, 2019. 27(12): p. 1791–1799 doi: 10.1038/s41431-019-0471-9.
  71. Fishler, K., P., J.C. Euteneuer, and L. Brunelli, Ethical considerations for equitable access to genomic sequencing for critically ill neonates in the United States. International Journal of Neonatal Screening 2022. 8(22) doi: 10.3390/ijns8010022.
  72. Friedman, J.M., et al., Genome-wide sequencing in acutely ill infants: genomic medicine’s critical application? Genetics in Medicine, 2019. 21(2): p. 498–504 doi: 10.1038/s41436-018-0055-z.
  73. Marsden, T., et al., A systematic review on the quality and value of perinatal autopsy examination in stillbirths. Journal of Paediatrics and Child Health, 2020. 56: p. 55–135 doi: 10.1111/jpc.14832.
  74. Neşe, N. and Y. Bülbül, Diagnostic value of perinatal autopsies: analysis of 486 cases. Journal of Perinatal Medicine, 2018. 46(2): p. 175–181 doi: 10.1515/jpm-2016-0396.
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  77. Man, J., et al., Stillbirth and intrauterine fetal death: Role of routine histopathological placental findings to determine cause of death. Ultrasound in Obstetrics & Gynecology, 2016. 48(5): p. 579–584 doi: 10.1002/uog.16019.
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