Stillbirth matters: Research is key to mitigating risk

In a field of medicine dominated by happy outcomes, unexplained deaths do occur. As delegates gather in Cork for the International Stillbirth Alliance conference, Dr Keelin O’Donoghue says research is key to mitigating risk.

FEW complications in a maternity hospital are as emotionally devastating for parents and clinicians as the death of a baby during pregnancy or birth.

In these days of modern healthcare, parents anticipate a normal pregnancy and a healthy baby, and their children surviving to adult life.

They are deeply shocked and distressed by the loss of an expected child. Extended families and the wider community are also touched by this loss.

Healthcare professionals too have come to expect good outcomes in a field of medicine dominated by happy endings, and often feel inadequate and unprepared in the face of parents’ grief and distress.

Stillbirth is a major health burden. In the developed world, one in 200 infants is stillborn, meaning they are born with no signs of life. In Ireland, the 2015 Perinatal Mortality Annual Report from the National Perinatal Epidemiology Centre describes 294 infants who were stillborn.

While these rates compare well with low and middle-income countries internationally, and neonatal mortality continues to reduce, stillbirth rates are steady, and stillbirth remains up to 10 times more common than sudden infant death syndrome.

Stillbirth has relatively recently become an international focus of interest and concern as a preventable death, with the Global Alliance to Prevent Prematurity and Stillbirth and the World Health Organization naming reduction in stillbirth rates as key goals to improve pregnancy outcome.

The investigation of causes of stillbirth as well as the development of effective interventions to prevent stillbirth have now been classified as a specific global research priority.

The ‘Recall to Action’ in 2016’s Lancet Stillbirth series concluded that “ending preventable stillbirths can be achieved through improvements in the health status of women, through improvements in quality of maternity care, and with reductions in social inequities”.

In Ireland, the National Standards for Bereavement Care following Pregnancy Loss and Perinatal Death were also published in 2016, aiming to put bereavement care and parents’ needs at the centre of maternity services.

Stillbirths should have the same systematic evaluation as any adult death.

In general, the most common causes of stillbirth are investigated, as well as those conditions that might predispose parents to another stillbirth.

Understanding reasons helps parents, but may also identify recurrence risks and even identifying a sporadic cause has merit as it can bring closure and provide reassurance.

Several risk factors, including demographic and lifestyle factors, and medical or pregnancy disorders have also been associated with stillbirth, and understanding or modifying these can lead to effective interventions in future pregnancy.

However, the study of specific causes of stillbirth has been hindered by the absence of uniform protocols of investigation, lack of agreement on classification systems for deaths, as well as public concerns about post-mortem investigations.

It is accepted that unexplained deaths do occur, but sometimes these are simply un-investigated stillbirths, and the true rate of unexplained stillbirth should be under 10% overall.

Clinicians should, therefore, continue to advocate for post-mortem examination of the baby and placenta, rather than inferring a cause, and the important role of specialist perinatal pathology within maternity services needs greater focus.

The economic, social, emotional, psychological and professional burden of stillbirth is well-documented.

The recognition of stillbirth as a significant bereavement is relatively recent, but the death of an infant is now acknowledged as a hugely stressful life event, which may have long-lasting effects on physical and emotional wellbeing.

We know that the care parents receive at the time of stillbirth can shape their entire grieving process and affect their ability to cope. Creation of a caring environment, and strategies to enable the family to accept the reality of stillbirth, are now an accepted part of care.

Good quality care cannot change what has happened, but bereavement care that does not meet parents’ needs can have devastating consequences.

The provision of support for parents following stillbirth is, therefore, a key part of overall care from the maternity services. This support should be initiated from the time of diagnosis and extend through the care provided in hospital, and then following discharge.

Dedicated bereavement teams contribute much to the support offered to parents, where trained professionals provide appropriate person-centered care and follow-up.

While the specialised role of bereavement midwives in particular and other members of the bereavement team is highlighted, bereaved parents rightly expect understanding, kindness and sensitivity from all hospital staff.

For some, stillbirth remains a silent and unacknowledged grief which compounds the trauma of bereavement. Stigma and fatalism continue to hinder investigation of stillbirth, as well

as attempts at stillbirth prevention.

The lack of public discourse around stillbirth limits public awareness of the prevalence of stillbirth as a possible outcome of pregnancy.

Given the extensive impact of stillbirth, there is a clear need for provision of public health information about risk factors for and causes of stillbirth that can help reduce the incidence of preventable deaths.

The International Stillbirth Alliance’s (ISA) mission is to raise awareness of stillbirth and to promote global collaboration in the effective prevention of stillbirth and provision of appropriate care for parents whose baby is stillborn.

The ISA is a diverse alliance of international organisations, ranging from parental groups and educational institutions to research groups who work together to support the goals of the organisation.

The International Stillbirth Alliance Conference for 2017 (ISA 2017) will for the first time ever be held in Ireland and is taking place this weekend.

Organised in University College Cork, the conference will see around 380 delegates coming from all corners of the world, including Africa, Asia, Australia/New Zealand, Europe, South America, the USA and Canada.

The Pregnancy Loss Research Group based within the Department of Obstetrics and Gynaecology and the INFANT centre at UCC and Cork University Maternity Hospital are hosting the conference.

I have been privileged to chair the organising committee for ISA 2017, and lead a multi-disciplinary team involving obstetricians, midwives, social scientists, epidemiologists, services users, perinatal pathologists, chaplains, educators and researchers.

For more than a year, we have worked alongside our partners, including Féileacáin, the National Perinatal Epidemiology Centre and the INFANT Centre at UCC to host ISA 2017 and bring this conference to Ireland.

The aim of the conference is to challenge healthcare professionals to constantly strive for excellence in stillbirth awareness, investigation, research and bereavement care.

Our conference programme provides a blend of new research from various research centres around the world in addition to insight from world experts in stillbirth investigation and care.

The human experiences of stillbirth bereavement from both bereaved parents and healthcare professionals will also be shared.

We hope the programme meets the individual and professional needs of all our delegates, and facilitates future clinical and academic collaboration.

Research cannot happen without bereaved parents willing to share their experiences of stillbirth. Parents cannot hope for better outcomes for future pregnancies without research being undertaken.

Doctors, midwives and the multi-disciplinary teams in maternity hospitals cannot provide the best care without parents to learn from, and evidence-based research to inform their practice.

Support organisations need information to help bereaved parents and advocate for their needs.

Coming together at ISA 2017 is a great opportunity to share our experience, discuss our research, reflect on our practice and gives us confidence that we are joined by many others, both nationally and internationally, in the pursuit of best practice.

The shared task for all of us attending ISA 2017 is to recognise the effects of stillbirth, ensure ongoing support for those affected by the death of a baby, strive to always improve the quality of care we offer to bereaved parents, and to promote research and training in this area.

As the National Standards for Bereavement Care following Pregnancy Loss and Perinatal Death are being implemented this year, it is additionally significant that this conference is being held in Ireland.

The standards clearly defined the care parents and families can expect to receive following stillbirth in our maternity hospitals.

The conference is a step forward in our commitment to compassionate care for parents, as well as education and support for maternity staff, while raising awareness of stillbirth and recognising its wide impact.

Dr Keelin O’Donoghue is a principal investigator, consultant obstetrician and gynaecologist and a senior lecturer at University College Cork