Baby Death Investigations
Stillbirth, the birth of a dead baby after 24 completed weeks’ gestation, can be devastating for the mother, father, siblings and wider family involved. It has long-term implications for both parents’ psychological health and wellbeing – depression and grief can last for years after the birth, while stigma, social taboos and economic implications may complicate the grieving process.
Midwives, doctors and other care providers may also be deeply affected by a stillbirth, both professionally and personally. Many experience guilt, blame, anger, anxiety and sadness, along with a fear of litigation and disciplinary action (The Lancet, 2016).
Most parents who have lost a baby to stillbirth will want to understand why it happened. Understanding may help families in coming to terms with their loss and in planning for the future. Sharing that information with siblings, friends and family is part of the process. Yet currently 42% of all stillbirths nationally are classified as being of ‘unknown cause’ (MBRRACE 2017), so these families are left with unanswered questions about why their baby died.
When carrying out investigations, the whole family should be involved and listened to, to improve future outcomes. Investigation guidance produced by the NHS Quality Board says all stillbirths, neonatal deaths and maternal deaths should be investigated in line with recommendation 23 in the Kirkup report. A recent Sands report showed that 99% of bereaved families wanted to feed into bereavement improvement.
The Maternity Bereavement Experience Measure is a tool that helps healthcare professionals involve families in investigations. It’s been co-produced by NHS England and bereaved parents.
Healthcare professionals and their organisations also need to understand the causes of stillbirths, and whether any aspects of care could have been improved to prevent similar tragedies occurring in the future. Even when full clinical investigations have taken place, it is not always possible to ascribe a cause of death in every stillbirth. However, it is possible in far more than the 48% of cases which currently receive answers. Reviewing what happened when a stillbirth takes place is a critical step in this process.
Comprehensive data collection helps to better shape understanding of stillbirth’s causes, and can help to inform professionals who counsel parents about future pregnancies. Local reviews need to follow national guidance so that the same data is being collected, and can thus be compared, across the country. Yet a 2015 enquiry for NHS England found that in 75% of stillbirths occurring at term, patients’ notes contained no evidence of a local review having taken place. When reviews took place, most did not follow national guidance or involve parents’ views (POST 2016).
A thorough investigation is needed whenever a stillbirth happens. This is key to learning potential lessons, and preventing future tragedies. The most recent MBRRACE Perinatal Mortality Surveillance report highlights the importance of robust investigations, recommending a standardised multidisciplinary review of ALL term stillbirths (MBRRACE 2017).
SCOR and PMRT
With better, more standardised investigations, there should be a decrease in the number of stillbirths classified as being of ‘unknown cause.’ Currently units can use the Standardised Clinical Outcome Review tool (SCOR) by the Perinatal Institute for unit-based comprehensive reviews of any perinatal death.
The Healthcare Quality Improvement Partnership has commissioned a standardised Perinatal Mortality Review Tool (PMRT) on behalf of the English, Scottish and Welsh governments, with an aim to improve and support the standardised review of all perinatal deaths. The national Perinatal Mortality Review Tool (PMRT) is now live for all Trusts to use.
It is hoped that by using this tool, data on stillbirths and neonatal deaths can be pooled. Sharing data in this way can allow trends to be seen that might not be detected on a local level, and lessons learned in one area can benefit women and families across the country. The PMRT is being designed with user and parent involvement on the principle of ‘review once, review well’.
Each Baby Counts
The RCOG’s Each Baby Counts initiative is a national quality improvement programme aiming to reduce the number of babies who die or are left severely disabled as a result of incidents occurring during term labour – the aim is to reduce this number by 50% by the year 2020.
Term intrapartum stillbirths, neonatal deaths and brain injuries occurring due to incidents in labour have been investigated at a local level until now. Since January 2015, the Each Baby Counts team has pooled the results of these local investigations to help understand the bigger picture. The project relies on ‘clinicians undertaking high-quality, honest reviews of practice’ and sharing what has been learned. Analysis of this information on a national level can reveal wider trends and guide local and national care and commissioning.
A post-mortem examination can help to identify factors that might have contributed to a stillbirth happening. It should be offered in all cases of stillbirth and neonatal death in order to identify the cause of death (where possible), to find factors which may have contributed to the death, and to provide information that helps with decision making in any future pregnancy. Supporting parents with the decision to have or to refuse a post-mortem examination is a sensitive skill.
The MBRRACE (2016) report found that ‘over 90% of families who experienced a stillbirth were offered a post-mortem examination. In 45% of Trusts and Health Boards this offer was made for all stillbirths and neonatal deaths within their organisation, whereas 22% of organisations offered a post-mortem for less than 90% of deaths. Overall, parental consent for a post-mortem was received for approximately 40% of all stillbirths and neonatal deaths.’
In the case of a stillbirth, the placenta should always be submitted for histological examination, preferably by a specialist pathologist (MBRRACE 2016) – this does not require parental consent, and can happen even should the parents decide against a post-mortem.
Sands provides a useful guide for parents about deciding whether or not to have a post-mortem.
This recently published National Guidance on Learning from Deaths (2017) advises that Trusts should include stillbirths in their quarterly reports of deaths from April 2017.
Reporting to MBRRACE
Reporting all late fetal losses, stillbirths and neonatal deaths to MBRRACE means that data is collected nationally which can be used to improve care and commissioning.
Deaths to be reported to MBRRACE include:
- where an accurate estimate of gestation is not available, who died before 28 completed days after birth, late fetal losses: a baby delivered between 22+0 and 23+6 weeks gestational age showing no signs of life, irrespective of when the death occurred
- stillbirths: a baby delivered at or after 24+0 weeks gestational age showing no signs of life, irrespective of when the death occurred
- neonatal deaths: a live born baby (born at 20 +0 weeks gestational age or later, or with a birthweight of 400g or more
The CODEC tool guide assists practitioners in collecting and reporting accurate data, and classifying the cause of death accurately.
National Bereavement Care Pathway
The charity Sands have developed new guidelines which are currently being piloted within 11 trusts with national roll out planned for October 2018.
The Royal College Of Midwives
Melissa Coyne, Midwifery Lecturer, Middlesex University