Here are some initial thoughts on a quick read through the (so far) excellent stillbirth research series from The Lancet.
The research papers are primarily aimed at healthcare professionals and academics but have been written in a way that is accessible to all readers. That’s kind of the point (something I will revisit later) but I wanted to provide a summary of the themes as well as my thoughts on the papers for those that are interested but don’t have the time or strength to read through pages of closely typed academic text.
What I hadn’t expected and was surprised at when reading the papers was a genuine sense of palpable anger amongst the usual territory of strategic work plans, stakeholder engagement and other standard wonk speak.
The authors note the small improvements in stillbirth prevention with a muted enthusiasm born of the knowledge and evidence that so much more could have been achieved had the initial plaudits and fanfare that greeted the 2011 research series been translated into a sustained and concentrated global effort.
Many of the suggested interventions to prevent stillbirth are relatively low cost and at a purely financial level would produce an estimated three-fold return on investment.
This stark number appears to have almost pleading quality to it. If you don’t care about anything else, if big numbers of dead babies is too much or too abstract to comprehend than at least this tidy money based argument should be enough to convince you?
In some cases this message has stuck but the underlying cultural issues remain largely untouched.
Efforts to get stillbirths onto the policy agenda and inspire the high level political and civic leadership needed to make effective changes are hampered seemingly at every turn by an almost obscene resignation to the belief that these deaths are sadly inevitable despite the evidence that a large proportion of these deaths are preventable with proven interventions.
This is often in parallel with varying levels of adherence to cultural norms and beliefs about stillbirth and grief. It goes beyond the isolation and even horrific violence visited upon the women and families that have lost their babies to find its manifestation into an institutional and political unwillingness to monitor and record the reasons for stillbirth hampering global research efforts into targeted prevention.
Even in the countries that do monitor and evaluate stillbirth data the authors note unwillingness and the difficulty in integrating stillbirth prevention into wider maternal / new-born health initiatives where stillbirth is reduced to the status of an annex in strategy papers.
This institutional level unwillingness also finds its form in the way that networks emerge and interact. As members of an already outsider group it often falls to individuals working within an organisation rather than the organisation itself to take action. The authors note that whilst members of these networks are often highly motivated they do not exploit the network connections to its fullest potential.
The networks are largely made up of healthcare professionals, scientists, bereaved parents and academics but often lack sufficient involvement from the political and civic actors needed to push prevention and effective support for the bereaved into the political agenda.
That is not to say that stillbirth prevention and care should replace or displace any other issue (no ‘whataboutery’ here) rather it is about making it part of existing items on the healthcare agenda such as maternal health. Its wider impact on and implications for mental health and women’s rights also need to be reflected in those agendas.
On reading the papers I didn’t expect to feel ‘lucky’ but in many senses we have been lucky. It may not always feel that way but whilst we live within a culture where talking about death or grief is taboo the fact that I can write and talk about it is a huge thing.
Whilst we have experienced varying levels of stigma we have not been subjected to violence for our loss. We were able to have our children cremated and receive a full funeral service and given the opportunity to mourn. We may have faced criticism on the way that we grieve but we have not been forbidden from mourning or from naming our children. They are considered human, cremated in our presence not buried in our absence.
No country health plans responded to The Lancet Stillbirth Series’ call to act against stigma and provide bereavement support.
The same issues many bereaved parents experience in terms of inconsistent post-loss support are felt across the world. This is where the stigma attached to stillbirth continues to poison the well by undermining efforts to push for recognition of the need for better support of grieving families. The authors grimly note that in all trhe good work that followed 2011’s research ‘no documents addressed stigma associated with stillbirth’.
The corrosive stigma of stillbirth coupled with the perceived futility of prevention cruelly compounds a harm and actively undermines bereaved parents’ efforts to honour the vow that no more families should suffer the way that they have suffered.
Part of tackling that stigma involves education in the form of bereavement training in midwifery education. The research papers note that “students are often protected from caring for families who have had a stillbirth because of their inexperience”. With little preparation or experience student midwives are not given the tools needed to provide the level of support or care needed. The paper makes an excellent suggestion that by having parents directly tell their stories and experiences it could to provide insight into the perspectives of those families.
There are plenty of families out there willing to help with this and it I have seen a good response from the medical community at all levels on Twitter to the many blogs and tweets on this subject. Seeing #EndStillbirths trending in the number 2 spot was inspiring. There is hope, and the research series helps to provide the information and insight to work together as one to get stillbirth prevention on the agenda, raise awareness, improve patient care and support those who have lost their babies with practical and emotional support and actively challenge deeply damaging stigma and cultural beliefs that harm the people they are intended to protect.