The death of a baby at any stage of pregnancy or shortly after birth can have a devastating impact on parents, families, and healthcare staff involved. While pregnancy loss occurs in 20 – 25% of all pregnancies, it remains a neglected area of research and resources, and is also steeped in stigma, according to Professor Keelin O’Donoghue, Consultant Obstetrician, and founder and lead of the Pregnancy Loss Research Group at Cork University Maternity Hospital.
Themed ‘Nobody even thought to ask us anything’, Professor O’Donoghue and Marita Hennessy, PhD, were awarded a Seed Grant to curate the production of a visual narrative entitled ‘Why My Baby Died’ in collaboration with Dublin based illustrator Amy Lauren.
This narrative translates findings from a research study with parents in Ireland bereaved by stillbirth or neonatal death. Led by Dr Änne Helps, it explored how parents could be involved in maternity hospital perinatal death reviews as currently this is not consistently present for all bereaved parents during their baby’s review process. A key finding of the report is that a respectful, compassionate and flexible system, tailored to the needs of parents is essential. During interviews conducted with 20 bereavement parents for the study, many voiced their concerns with, and desire to be included in, perinatal mortality reviews. In the words of one parent:
I think as a parent the review process will mean very little until a parent’s voice is heard a bit louder.
Involving bereaved parents in their baby’s care and in the maternity hospital reviews that take place after a baby’s death can help parents manage their bereavement and plan for the future. ‘Why my baby died’ tells their story, in their own words, and shows their views and experiences of hospital processes to find out why their baby died. As Professor Keelin O’Donoghue told us:
For us, illustrating the research in this way, provides important, actionable insights to other parents, clinicians and policymakers into what is needed to promote better communication, awareness, and prevention of future deaths where possible.
It is intended that this visual narrative will support more traditional dissemination methods such as academic papers and talks, policy briefs, meetings with knowledge users, and social media. It can be used as a resource to counsel parents during healthcare interactions, as well as a teaching resource for healthcare staff and students. It can also be used as an advocacy tool to influence policy and practice. You can find out more about the use of visual narratives (comics) as an impactful health communication method here.
To view the full graphic narrative, visit the “Why my baby died” project page.
If you are affected by any of the issues raised in this graphic narrative, you can find details of information and supports at: www.pregnancyandinfantloss.ie.
It’s based on the research study ‘Bereaved parents’ involvement in maternity hospital perinatal death review processes: ‘Nobody even thought to ask us anything’ by Dr Änne Helps, Professor Keelin O’Donoghue, Orla O’Connell and Dr Sara Leitao. We join them in thanking the parents who participated in this study, whose words form the basis of this graphic narrative.
About The Pregnancy Loss Research Group
Professor Keelin O’Donoghue founded the Pregnancy Loss Research Group in 2012. It encompasses a multidisciplinary team of doctors, midwives, nurses, social workers, chaplains, health services/population health/social science researchers, and parent advocates (40+). The Pregnancy Loss Research Group leads national research, and the development of evidence-based guidance, resources, advice and interventions, to prevent pregnancy loss, and improve health care (quality) and health and social outcomes for women, babies and their families.
The Pregnancy Loss Research Group partnered with us to support the implementation of the National Standards for Bereavement Care following Pregnancy Loss and Perinatal Death (via www.pregnancyandinfantloss.ie a directory of support services and knowledge for both bereaved parents and healthcare professionals) and on the Irish Research Council-funded PLATFORM (Pregnancy Loss knowledge trAnslaTion FOR iMpact) Project which aims to enhance the translation of pregnancy loss research into policy and practice. The work is making important impacts in this regard, contributing to ongoing improvements in service provision and care experiences.
Earlier this year, the Pregnancy Loss Research Group launched a new website (www.ucc.ie/pregnancyloss) showcasing over ten years of pregnancy loss research in Ireland. The website aims to support efforts to enhance public and policymaker awareness of pregnancy loss, influence policymaking and healthcare funding, and inform the provision of more effective services and supports within the health care system, community sector, and beyond.
This website was developed through the Irish Research Council-funded PLATFORM project, in collaboration with ourselves, and aims to enhance the translation of pregnancy loss research into policy and practice. Speaking at the event, Paula O’Reilly, our CEO, acknowledged the importance of good bereavement care and the long-standing collaborative activities between ourselves and the Pregnancy Loss Research Group.