Despite advances in modern technology and the development of innovative techniques in healthcare, one in every four pregnancies in the UK ends in either miscarriage or stillbirth; every year, the UK reports more than 250 000 miscarriages (Tommy's, 2023). The often-neglected psychological and emotional effects of miscarriage and poor aftercare have been reported in research for several decades (Lee et al, 1996; Evans, 2012; Bardos, 2016). There is a need for care to focus on the whole experience of miscarriage and stillbirth, including feelings of guilt, shame and isolation, as well as social and economic implications (Bardos, 2016; Quenby et al, 2021).
The situation requires both continued efforts to improve antenatal care, and the provision of compassionate support for affected families. Support after baby loss requires sensitive psychological and emotional care for women and their partners. This sensitivity is especially important in cases where pregnancy loss is a social taboo. In these situations, the opportunities for women to express their loss and its effects on their lives can be suppressed.
Mayah's Legacy is a UK-based charity that aims to promote self-education, self-advocacy and compassionate care for women and families after experiencing a baby loss. It seeks to address the psychosocial effects of baby loss on women and families. A self-empowerment approach is used to help people to move beyond their feelings of helplessness and to understand that their voice and experience matter. Care provision is not a one-sided process. The best way for a healthcare professional to provide clinical care is for a woman or family to actively participate in their journey. For this to happen, self-confidence is needed.
Mayah's Legacy was established in 2020 by its founder and present CEO, Keji Moses, following the death of her stillborn daughter, Mayah, a year previously. Mayah was Keji's second baby loss. After this experience, Keji realised that, while her grief and pain were personal, she could use these experiences, along with her professional skills in coaching and counselling, to meet the needs of families in similar situations.
The charity Mayah's Legacy empowers families by providing them with the tools to make decisions about their treatment and care after baby loss, as well as to explore a holistic approach to their wellbeing. The objective is to help families to regain their confidence and contribute meaningfully to decisions affecting them, as well as to receive compassionate care.
Approach to and delivery of support
Mayah's Legacy provides a range of online resources that are designed to recognise social diversity and cater to different personal and family needs. While pregnancy loss is a difficult journey for everyone, not everyone's journey is the same. Additionally, the online delivery of family support can be more inclusive for families living at a distance from professional and peer experts and is an ongoing resource for people to access when they need it.
Webinairs with national experts
The charity has recorded 14 webinars, each lasting up to 30 minutes, with professional and peer experts in coaching clinical psychologists, including Dr Kara Davey, Dinma Nwobi, Caroline Purvey, Nadine Robinson and Joanne Zerdy (Mayah's Legacy, 2022). Using life experience and professional expertise, these professionals encourage families to explore self-awareness and self-advocacy. By watching these recorded sessions, families can become better equipped to make informed decisions, gaining self-knowledge and the skills to express their needs and choices.
Dr Joanne Zerdy delivers a session on ‘rehearsing self-advocacy and cultivating grief practice’. She discusses her personal grief in relation to how to navigate the grief journey, where she and her partner rehearsed their responses to potential questions that would be asked. This communication strategy helped them to feel in control during conversations about their loss with friends and families. Dr Zerdy is the co-founder and co-director of Inviting Abundance, a company that provides services and projects for those who are grieving. She is an educator, curriculum designer, grief worker, PhD researcher, writer, editor, and herbalist.
The webinairs also introduce families to different personal coping strategies. For example, Nadine Robinson, a journal therapist, delivered a session on ‘how to use journaling as an act of self-care’. In the session, Nadine gives practical guide on how to use personal writing practice to map out feelings and emotions. This practice helps to piece together a factual narrative by placing emotions into a logical and rational framework. Nadine Robinson is the founder of NPNarratives. She is a certified life coach, neurolinguistic programming practitioner and author.
Self-advocacy toolkit
A self-advocacy toolkit resource is available online and free to download. The kit supports communication and negotiation skills for families in social and clinical settings. It guides families through a series of emotional and practical steps for strengthening self-advocacy. The topics covered in the toolkit include what self-advocacy means, self-awareness, assertive communication, negotiation and approaches to note-taking in meetings.
Underlying principles
Person-centered support
Mayah's Legacy expects that every person has their own unique way of coping with stillbirth and baby death. Women and families are supported to process of feelings of loss in a space that is safe and non-judgmental during online professionally facilitated discussions.
Self advocacy and self compassion
The charity's goal is to help women and parents to learn to advocate for themselves and become more self-compassionate.
Holistic care and steps to recovery
Mental support is not the only part of a healing and recovery journey. The charity's services also focus on physical, emotional and spiritual wellbeing and include ongoing memory of the baby who has been lost.
Outcomes of the charity's work
The charity's online resources have been viewed worldwide and to date, live sessions posted on Facebook about the impact of pregnancy loss on a mother's mental health have reached more than 1.3 million people. Over 17 000 people have downloaded the self-advocacy toolkit and over 28 000 families are aware of the online activities and resources, based on the number of views, online memberships and online platform engagement. Families who have commented on the webinars have remarked on the personal benefits of feeling ‘listened to and comfortable to express feelings’, of receiving ‘to the point’ advice’, of expert facilitation and of the use of easily accessible language.
The take-up of online information and support offered by Mayah's Legacy indicates the pressing need for personalised psychosocial support and self-empowerment for women and families following baby loss. Mayah's Legacy is dedicated to support provision for psychosocial care for women and families coping with baby loss.