Recent data released from MBRRACE-UK (2020) identifies that in 2018, 2 579 babies were stillborn, and 1 199 babies died in the neonatal period. Comparably to the rate of live births of 735, 745 in the same year it may not seem significant but it does inevitably mean that midwives will most certainly experience bereavement in their roles (MBRRACE-UK, 2020).
However, these MBRRACE-UK figures only include babies born above 24 weeks' gestation due to the UK's law relating to viability and registration of births/death/stillbirths. The data also excludes babies classified as stillborn due to termination of pregnancy and babies lost due to ectopic pregnancy, molar pregnancy, early miscarriage, late miscarriage and medical termination. This is important because while the MBRRACE-UK figures may seem reasonably insignificant compared to the birth rate, the actual number of bereaved families is significantly higher. This also means that bereavement care does not just fall under the maternity remit but reaches a wider multi-disciplinary team who all form a huge part in the care of a bereaved family.
Ultimately, we do not truly know the numbers of families that experience the loss of a baby in the UK because we do not have the means to account for every single type of baby loss. But what we should acknowledge is that each and every family and baby have the right to the same level of dignity and respect and that for many families, they become parents from the moment they get a positive pregnancy test. Their baby is already formed in their heads and in their hearts.
Steph Wild presenting at the Beyond Bea Conference
The Francis report (2013), the Kirkup report (2015) and most recently the findings of the Ockenden report (2020) emphasise the importance of compassion in care and also the need for training.
How can there be so much inconsistency?
Baby loss and bereavement care is not something that is highly acknowledged within the statutory guidance within nursing and midwifery. The term ‘bereavement’ itself has no definitive explanation relating to what exactly these proficiencies are in any of the following:
- The code (Nursing and Midwifery Council [NMC], 2015)
- The standards of proficiency for registered nurses
- The standards of proficiency for midwives (NMC, 2019)
- The standards framework for nursing and midwifery education (NMC 2019).
Bereavement care is often inadequate and does not always reflect the needs of the family. The care is often inconsistent. Across the UK, bereavement care can vary so significantly that some families will have positive experiences of the care they received and yet in the same hospital, someone would state that they had received inadequate care.
Through my own training and in my professional midwifery career, I knew that the teaching materials for the Beyond Bea training needed to harness the combination of clinical and compassionate care-something that I had not experienced in my own midwifery training.
Bereavement care training isn't easily taught because of the need for students to experience and understand emotions. While there is limited research to reflect the needs of students in relation to baby loss and bereavement care, there is a demonstrable desire that shows that many students want to gain experience of bereavement care through interaction and experience (Martin et al, 2016; Doherty et al, 2018).
Bereavement care often goes against the typical behaviours within the health sector in that we follow pathways or systematic approaches to achieve a cure or find a solution to a problem. The bereavement and grief process is unique to the individual, the process and journey of each family will differ considerably, and one size does not fit all. Healthcare professionals should provide comfort, offer choices and support families in the decisions they make. Equally, we also need to understand that not only is there a multitude of choices families can make (and it is important to offer everything) but saying ‘no’ or declining is also a choice.
The Beyond Bea training I developed focuses on interaction and experience by seeking to support the needs of the wider multi-disciplinary team, ranging from students, support staff, registered staff, and the medical teams, and exploring not only the statistical information and definitions but also the very ‘human’ side of baby loss.
The Beyond Bea face-to-face training enables individuals to have this interactivity. We created a safe space for those attending our sessions to use our specially created baby models so they get to handle a baby that feels dead because the dispersion of this weight in your arms is difficult to comprehend without holding a baby who has died. This also helps attendees to understand how tangible memories can be made with families and to understand the need for families to create their own special memories. Families do not get to make a lifetime of memories but they will remember the memories we facilitated of their babies for the rest of their life.
‘Healthcare professionals should provide comfort, offer choices and support families in the decisions they make’
On completion of the Beyond Bea training, attendees understand the significance of everything they do; from the tissues they provide, the words they say, their actions and their behaviour.
Beyond Bea has naturally created changes to enable our services to remain accessible and continue through the COVID-19 pandemic. Our online training provides a condensed version of our face-to-face training, that by no means replaces our typical training, yet it allows students and health professionals to gain access and insight to apply to their care. My need to ensure interactivity remains consistent, with our online training sessions delivered live. This allows training to be adapted and allows me to respond directly to questions. The online training also includes a personal viewpoint of my own story, my daughter Bea, her life, birth and death.
We cannot take away the pain that families experience but we can reduce barriers in their journey and try to support the transition following loss. We may not be able to change every individual experience but we hope that by providing accessible training, we can give students and health professionals a means to be able to part of this change.