Richard Horton, the editor-in-chief of the Lancet, described stillbirth as ‘one of the most neglected, marginalised, and stigmatised issues in global health today’ (Jolly, 2016). More than 2.6 million babies are stillborn around the world every year (World Health Organization, 2020) but the scale of baby loss is far broader, including miscarriage, ectopic pregnancy, molar pregnancy, late miscarriage, termination for medical reasons, neonatal death—the list goes on.
Many bereaved parents shy away from terms like ‘baby loss’, feeling that it softens the devastating reality of the situation to protect the sensibilities of those around them and often preferring ‘death of a baby’ as a term that is honest about the traumatic nature of this experience. However, the impact of the death of a baby goes far further than the parents. It extends to family, friends and wider society.
It also extends to the professionals responsible for caring for these families, a hugely challenging task which is often undertaken with little or no training, limited resources and minimal support. So, how can we find ways to best support bereaved families? How can we bring choice back when all their choices have been ripped away? Can the birth of a baby that has died be supported with positive elements? Would we still offer the desired pool birth to a bereaved family? Can a non-birthing partner still cut the cord? If not, why not? Do we do things a certain way because that's the way it's always been done? And how can we make sure that, as professionals providing care in a traumatic situation, we ensure that we look after ourselves and our emotional wellbeing too?
Beyond Bea Charity was formed in January 2018 to address this specific issue. Beyond Bea's founder, Steph Wild, is a midwife with a long-standing interest in bereavement care. Even as a student, Steph recognised that bereavement care training was hard to access, of inconsistent quality, and often prohibitively expensive. Yet, when you ask most groups of maternity professionals if this is the most stressful element of their job, the overwhelming majority agree that it is-made even harder by receiving little to no training.
In November 2017, Steph's focus on bereavement care stopped being purely a professional one when her daughter, Beatrice Grace, died at 23+4 weeks gestation. Nine weeks later, Beyond Bea Charity was born with a mission to change the face of bereavement care by providing free, high quality and easily accessible training for any healthcare professional or student who needed it.
Beyond Bea Charity's study days include clinical elements, personal insights from bereaved parents, and interactive memory-making workshops to allow attendees to improve their clinical knowledge, learn from the lived experiences of service users, and hone their practical skills in a safe environment where they can make mistakes and learn from them. Steph and her Beyond Bea Charity colleague Chris Binnie, father to Henry who died at 38 weeks in May 2014, strive to ensure that professionals and students feel empowered to provide the best quality care they can to families.
Bereavement care is intimidating for many professionals, not simply because they feel underprepared but because the death of a baby is a tragedy of such monumental proportions that it's only natural to worry about saying or doing the wrong thing and to feel uncomfortable. The point a maternity professional feels comfortable in this situation is the point they should consider their role very carefully.
For professionals who spend the vast majority of their time experiencing the joy of bringing living babies into the world, to hone the ability to deal with the opposite end of this spectrum of joy and pain is hugely challenging—but it's important to recognise that it's okay to feel upset by this situation and show emotion. Parents will generally feel more supported by professionals who are clearly affected by the death of their child—not less so. Beyond Bea Charity's study days cover different clinical aspects including types of pregnancy loss, how to break bad news, consideration of birth plans and the birthing experience, the process of post-mortems, care in rainbow pregnancy, prevention and reduction initiatives, and different memory-making opportunities that can be offered.
‘Parents will generally feel more supported by professionals who are clearly affected by the death of their child—not less so’
The insights into parent experiences from bereaved parents led by Steph, Chris and the charity's other bereaved parent trustee Kylie Brennan (Beau's mum and a student midwife herself) invariably centre around kindness, compassion, and the need to listen to parents and be guided by their wishes. It's easy to forget that even in these most tragic circumstances, as professionals, we can still facilitate choices for families. It's easy to think – and has been the way for many years – that bereaved parents are best served by professionals making their decisions for them. On the contrary, they're actually best served by being supported to make informed choices on all aspects of their care and their experience, just as any other family should be. In a lot of ways, supporting choice for a family whose baby has died can become easier, not harder, if we think about it in the right way. Many clinical restrictions are no longer applicable, so individual wishes can be more easily facilitated if we approach this care with the right mindset.
The interactive workshops cover photographs, inkless hand- and footprints, clay imprints, 3D castings, and demonstrations of the setup and operation of Cuddle Cots, which are found in many units across the country. Relying on specific individuals or outside organisations risks not giving families all the available opportunities, so ensuring all professionals providing bereavement care are upskilled can make sure that families get the chance to capture the precious memories that they won't be able to access at a late stage. If these memories are not captured at the time, they're lost forever. There is no second chance. Having the opportunity to practise these elements is absolutely priceless for professionals and students to help them feel more confident in their skills when supporting families making their lifetime's memories with their baby.
In 2018, Beyond Bea Charity held eight study days. In 2019, we held 42 study days—an upsurge in demand that speaks volumes for the desperate need for this training. We also held our first large-scale conference, now an annual event. The first annual conference was titled ‘Am I allowed to—optimising choice in bereavement care’, with a range of parental and professional speakers delivering numerous different perspectives on this vital element of care.
Our study day was accredited by the Royal Colleges of Midwives (RCM) and we received ‘registered charity’ status. We launched a parent speaker scheme to allow other bereaved parents to come to our study days, and share the memories of their babies and experiences. This is so important because, contrary to perceived wisdom, we aren't upsetting bereaved parents by talking about their babies; we're upsetting them when we don't. Mentioning their baby doesn't remind them that their baby died—they haven't forgotten. It reminds them that you remember that they lived which means the world to them. We introduced a range of different items available for hospitals to support their memory making provision, including memory books to help parents make informed choices about photographs, and memory making kits to help families get the best clay imprints possible. In December, we were delighted to announce Jacque Gerrard, former director of the RCM, as our first patron.
‘We aren't upsetting bereaved parents by talking about their babies; we're upsetting them when we don't’
The year 2020 – the international year of the nurse and midwife – is set to be even bigger and better, not just for Beyond Bea Charity, but also for the cause of improving bereavement care in the UK. Improving the quality of bereavement care is everyone's responsibility.
We can't take the pain away from families after their baby has died, but the care we provide can have a huge impact on their grief and their healing. BJM