Charlotte Bevan, Senior Research and Prevention Advisor, Sands (Stillbirth and neonatal death charity) and bereaved parent outlines a decade of lobbying for change in understanding why babies die.
Sands first raised the issue of potentially avoidable baby deaths with the Department of Health (DH) almost a decade ago. We had spent 30 years supporting parents whose baby had died and knew more could be done to prevent these tragedies. Myself and Janet Scott, Research and Prevention Lead at Sands went to DH offices in Waterloo to persuade the then ‘Starting Well’ branch that parents were not just grief-stricken by the deaths of their babies but convinced many of these deaths might be prevented with better care. My own daughter Hope had died in 2001 shortly after birth because staff had failed to see she was in distress in labour. She was delivered by Category 1 caesarean section, but by then dying. Despite confronting clinicians about her care, I never got a clear picture of what happened and why; and never really had the courage to battle the system further.
More determined parents than me have turned to litigation in their quest for answers about events leading up to death of their baby around childbirth, a process that for most is not just protracted but emotionally painful. Money has never been a driver for parents, but a passion and determination that the names of their children would not be lost but come to mean something: an improvement in practice and quality of care for future families, because something had been learned. Research tells us that the majority of baby deaths around term are preventable, but that units rarely learn from their mistakes.
In 2012, when Sands persuaded DH to co-host a national Stillbirth Summit, calling together experts in the area, the word ‘stillbirth’ was barely on the map and neonatal deaths were mostly associated with pre-term babies. Instead the death of a baby before, during or soon after birth was seen as just one of those things; the prevailing mood was that parents had to pick themselves up, get pregnant again, and move on. But as any parent of a baby who is stillborn or dies will tell you, it isn’t that simple.
Jeremy Hunt’s announcement on Monday that the stillbirths and deaths of previously healthy babies who had died at term because of something going wrong in childbirth would from next April be scrutinized by independent investigators from the Healthcare Safety Investigation Branch (HSIB), marks a sea change in government and public attitudes to the death of a baby around birth. It will be welcomed by hundreds parents who until now have felt isolated in their grief and wronged by an NHS which has appeared defensive and non-transparent.
It’s important to remember, however, that the focus of these new HSIB investigations will be only on a finite number of deaths; around 220 healthy term babies die as a result of something going wrong in childbirth every year in England; there are around 4,500 more stillbirths and baby deaths in other scenarios, at other gestations, which will still require scrutiny. My own daughter, Hope, died in childbirth but at 35 weeks’ gestation, not at term. What about her?
An outcome of the DH/Sands Stillbirth Summit in 2012 was the call for hospital units to robustly review the quality of care every time a baby is stillborn or dies to give answers to parents and identify where improvements in care could potentially prevent future deaths. We knew then, and we know now, after numerous national reports over the past three years, that the vast majority of hospital reviews are poor, and rarely include a parents’ (the only people who sit squarely at the centre of events) perspective of their care. (I was never asked, although sent a three-page unsolicited letter to my consultant, demanding he consider it from my perspective.) Without learning lessons in every death, how can hospitals guarantee they are not making the same mistakes over and over again and putting other babies’ lives at risk?
Sands has worked hard, lobbying government and bringing key stakeholders to the table to begin work on a robust and standardised review process for every death, not just those that happen in childbirth at term. That work was finally commissioned and funded by UK governments last year. Sands is now working alongside academics, clinicians and experts to develop both a set of standards and a practical tool units can use. The Perinatal Mortality Review Tool (PMRT) sounds clunky, but is designed to be far from it. If staff have ‘protected time’ to train in using the tool and applying its standards it will generate a much more honest and clear picture of what happened and what needs to change to make care safer. Importantly it will ensure that if parents’ have questions and views they will be heard.
The PMRT will roll out from 2018 and be free to use by units in England, Scotland and Wales. It will be different to the investigations that Mr Hunt has announced but vital because it will be used in the 95% of deaths that don’t occur when things that go wrong in childbirth at term.
Sands, my own voice and the individual voices of many other parents have come a long way in the last ten years. We hope we have convinced society that the death of a baby, even an unborn one, is heart-breaking. But also that we owe it to those children, who are not part of our families today, to learn from what went wrong.
Sands Freephone Helpline: 0808 164 3332 or email: firstname.lastname@example.org