Why don't we talk about pregnancy loss?
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In 2022...
- 290 babies were stillborn or died during the first 28 days of life [1]
- 98 early neonatal deaths (0-7 days)
- 192 stillbirths
- 3.5 times higher mortality rate in multiple pregnancies [1,2]
- Irish Traveller, Asian and Black ethnicities overrepresented in perinatal deaths [1,3]
- Twice as many women in minority ethnic groups had booking appointments after 20 weeks' gestation or never received prenatal care, 2011-2021 [3]
- Ireland is one of a few countries with a National Perinatal Mortality Audit… However, miscarriages are not recorded at a national level
- Molar pregnancy: 1 in 600 pregnancies [4]. Registration with National GTD Registry is not compulsory. Audit shows numbers under-estimated [5]
- 945 ectopic pregnancies. Rates have increased in the last 10 years [6]
- Levelling off in perinatal mortality rates (nos. of stillbirths and early neonatal deaths per 1,000 total births) since 2016. This follows decreasing rates in the decade prior to 2012 [1]
- True incidence of early pregnancy losses likely to be considerably higher, as some women will be treated as outpatients, or may not be managed in hospital, while others may not present to healthcare services at all [7]
Lack of public awareness and discussion
- Less than 30% of people in a national survey were aware of the incidence of first trimester miscarriage [8]
- 17% aware of the incidence of stillbirth [9]
- 56% unable to identify any stillbirth risk factors [9]
- 78% unaware of the term molar pregnancy prior to their diagnosis [10]
Poor care experiences
- 24% of people rated their overall recurrent miscarriage care experience as poor [11]
- 36% said the recurrent miscarriage care they received was much worse than expected [11]
- Poor communication, lack of follow-up and lack of dedicated spaces in miscarriage services [12]
- 26% of people who experienced a second trimester miscarriage, a stillbirth or an early neonatal death rated their care as ‘fair to poor’ [13]
Need for staff education and training
- 60% stated healthcare professionals involved in recurrent miscarriage care in different places did not work well together [11]
- 50% of healthcare professionals correctly identified the Irish definition of stillbirth [14]
- No women received information about stillbirth from a health professional during antenatal care [15]
- Lack of standardisation of education and training nationally [16]
Need for reform of perinatal death review processes
- Bereaved parents often not involved in, and can be negatively impacted by, review processes [17]
- Perinatal death reviews are not standardised [18]
- Recommendations of past reports not implemented [19]
Fear of litigation
- 82% perceived media to have a role in propagating trainee doctors’ fears of litigation and adverse outcomes [20]
- €32.3 million healthcare budget for women's health in 2023 vs €2.8 billion outstanding liability associated with catastrophic injusry claims [21]
Need for staff supports
- Healthcare professionals who were involved in an intrapartum death.....
- 82% received no training in dealing with intrapartum death [22]
- 94% had no education on self-care strategies [22]
- Lack of standardisation and clarity around staff supports provided across units nationally [23]
Despite these statistics, and advocacy efforts, there is still:
- No routine data on first and second trimester miscarriages
- No State recognition of pregnancy loss <23 weeks
- No national care bundle for stillbirths
- No national strategy for pregnancy loss
- No confidential inquiry - hinders understanding and solutions
- Very little mention of pregnancy loss in Government or national policy reports or HSE service plans
References
[1] NPEC Perinatal Mortality Report 2022
[4] National Gestational Trophoblastic Disease Centre
[6] NWIHP Irish Maternity Indicator System National Report 2023
[7] HIQA 2021: Early pregnancy loss: A scoping review of research in Ireland
[9] Nuzum et al 2018: The public awareness of stillbirth: an Irish population study
[13] HIQA 2023: National Maternity Bereavement Experience Survey
[19] Helps et al 2020: Irish inquiry reports relating to perinatal deaths and pregnancy loss services
[21] Forrest et al 2023: Current Irish medicolegal landscape: an unsustainable trajectory
[23] Hennessy and O’Donoghue. Psychosocial supports for staff in maternity hospitals and units following adverse events: A mapping study in the Republic of Ireland [forthcoming]