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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.
  66. Mellis, R., et al., Diagnostic yield of exome sequencing for prenatal diagnosis of fetal structural anomalies: A systematic review and meta-analysis. Prenatal Diagnosis, 2022. 42(6): p. 662–685 doi: 10.1002/pd.6115.
  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.
  75. Mudda, V., S. Saini, and A.K. Awati, Pattern and prevalence of congenital malformation of fetus-autopsy based study in BTGH (Basaweshwara Teaching and General Hospital) Mahadevappa Rampure Medical College (MRMCK). Kalaburgi. From Jan 2016–Jan 2017. Medico-Legal Update, 2019. 19(2): p. 240–246 doi: 10.5958/0974-1283.2019.00180.4.
  76. Evans, M.J., E.S. Draper, and L.K. Smith, Impact of sociodemographic and clinical factors on offer and parental consent to postmortem following stillbirth or neonatal death: A UK population-based cohort study. Archives of Disease in Childhood: Fetal and Neonatal Edition, 2020. 105(5): p. 532–537 doi: 10.1136/archdischild-2019-318226.
  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.
  78. Ophoven, J., The forensic post mortem, in The pediatric and perinatal autopsy manual, M.C. Cohen and I. Schiemberg, Editors. 2014, Cambridge University Press.
  79. Malcomson, R.D.G., Forensic aspects of perinatal pathology, in Keeling’s fetal and neonatal pathology T.Y. Khong and R.D.G. Malcolmson, Editors. 2022, Springer Cham: Switzerland
  80. Shelmerdine, S.C., et al., Is traditional perinatal autopsy needed after detailed fetal ultrasound and postmortem MRI? Obstetrical and Gynecological Survey, 2020. 75(1): p. 3–5 doi: 10.1097/01.ogx.0000650904.60005.21.
  81. Shelmerdine, S.C., et al., Postmortem microfocus computed tomography for noninvasive autopsies: experience in >250 human fetuses. American Journal of Obstetrics and Gynecology, 2021. 224(1): p. 103.e101–103.e115 doi: 10.1016/j.ajog.2020.07.019.
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