The world finally seems to be talking about the everyday tragedy of baby loss; from celebrities including Meghan Markle and Chrissy Teigen sharing their stories of miscarriage and still birth, to institutions like Channel Four News launching its ‘pregnancy loss policy.’ And rightly so, baby loss isn’t something that is rare or happens to ‘other people’. In 2020 the World Health Organisation reported more than 2.6 million babies are stillborn around the world every year, 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.
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.
I’m a practising midwife who became a bereaved parent when Bea was born in 2017 at 23 weeks and four days gestation. I created the charity Beyond Bea, 67 days after her death. The training for healthcare professionals tasked with supporting families affected by baby loss is often undervalued and overpriced. 38% of maternity units do not have a specialist bereavement midwife. Only 46% of trusts have mandatory bereavement care training. The quality of care available in neonatal units paints an equally bleak picture. Just 12% of neonatal units have mandatory bereavement care training. Remarkably 23% of neonatal unit bereavement leads have themselves not received bereavement care training. This landscape presents a huge challenge when set against the tragic reality that 15 UK families a day experience the death of their child through stillbirth or neonatal death.
It is critical that healthcare services have the skills to deliver compassionate care. Beyond Bea charity is dedicated to working to improve, change and enable access to bereavement care training.
Health Care Professionals need to feel empowered to support families in creating memories for the family when a baby has died. These parents don’t have a lifetime to form memories – they have a limited time, to bond, hold and care for their baby. Our practical workshops on memory-making ensures high quality care for families from health care professionals, improving their confidence in their ability to support parents to receive tangible memories such as handprints, footprints, clay imprints, castings and photographs with their baby. This is often a source of real fear for health professionals as they are inevitably conscious that, for every family, there’s just one chance to get these memories right.
I don’t get to go to school sports days or watch my daughter in a nativity play. I get to ‘parent’ through sharing her memory, saying her name, and allowing others to learn from my experience and clinical expertise.
As a charity, we acknowledge that every family and baby that dies, whatever the circumstances, gestation or length of life, has 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.
Bereaved parents want you to ask them about their baby and to include their memory and to say their name. Talking about a baby that has died, doesn’t remind the parents that their baby died (believe me, they haven’t forgotten). Instead it reminds them that you remember that they lived, which means the world to them.
My daughter, Bea, lives on through the charity that I set up. The story of her life, birth and death is included in all our bereavement care training. I don’t get to go to school sports days or watch my daughter in a nativity play. I get to ‘parent’ through sharing her memory, saying her name, and allowing others to learn from my experience and clinical expertise.
Beyond Bea became a registered charity in March 2019, and the study days received Royal College of Midwives (RCM) accreditation in April 2019 – a validation of the quality of the output from a vital national body. Beyond Bea has functioned entirely based on donations, often from bereaved parents who recognise the vital nature of the service its offering.