Opinion

Baby loss: a journey of grief

20 September 2021

To mark the start of Baby Loss Awareness Week on 9 October, Clare Worgan and Marc Harder of the charity Sands look at the help available to the public and healthcare professionals.

On average in the UK, around 14 babies per day are stillborn or die shortly after birth (Sands, 2021). This means that more than 400 families every month will start a journey of grief.

Baby loss and bereavement is one of the most challenging aspects of community practice. Many health visitors tell us they feel unprepared when visiting families whose baby has died, but parents tell us the right support from community practitioners (CPs) makes a big difference to their wellbeing – especially when friends and family are often unsure how to help.

Fortunately, support and guidance are available to help community-based professionals feel capable and confident when caring for grieving families, while also looking after their own wellbeing.

Guidance for CPs

Every individual’s experience is different; each parent and each family will grieve in their own way. Therefore the primary advice is to always be led by the parent(s) and family you are working with. The role of a CP is to recognise the unique experience of individual families and to guide and support them through their grief.  

Several sources of bereavement guidance and training are available to help community-based professionals approach this challenge. The National Bereavement Care Pathway (NBCP) and our charity Sands both provide detailed information on how to support bereaved parents.  

Sands’ training events encompass all elements of bereavement care. The NBCP is being rolled out to help practitioners ensure consistently high standards of bereavement care are delivered. There is also an NBCP module available on the e-Learning for Health Website (see Resources). This covers stillbirth and neonatal death as well as other experiences of loss, such as miscarriage. The wellbeing needs of parents and professionals are at the centre of the guidance and training.  

Every individual's experience is different; each parent and family will grieve in their own way

Principals of community bereavement care

1. Reach out and listen

Bereaved parents feel the same love and pride in their baby as any other new parent; these emotions are of course mixed with extreme sadness and distress. Often parents feel isolated by these feelings, so simply listening to a grieving parent can bring great comfort (Boyle et al, 2020).  

Although society tends to not recognise unborn babies as family members, parenthood does not depend on a child being alive. Therefore always acknowledge their baby and the relationship that they may already have established with it (Peters et al, 2015; Gold, 2007).

‘Someone asked me how much he weighed, and what time of day he was born. The happiness exploded inside me when they asked normal things you would ask if someone had a non-stillbirth’ – Joanna Smith, bereaved mother.

2. Compassionate and sensitive language

Express compassion and acknowledge their loss with phrases such as ‘I’m sorry to hear about your baby,’ or ‘I’m sorry that this happened to you.’

The language of loss can be extremely emotive, especially in the early days and weeks of grief. The advice therefore is to always use the same language people use to describe their experience. If their baby has been given a name, always use it. Many bereaved people tell us they get a lot of comfort from hearing their baby’s name.

‘That was one of the hardest things for me: that barely anyone ever said their names’ – Kath Melia, Fred and Mabel’s mum.


Key Facts  

  • Baby Loss Awareness Week runs from 9 to 15 October every year  
  • Around 5000 babies are stillborn or die shortly after birth every year in the UK – equating to 14 families per day (ONS, 2019)  
  • One in 150 births ends in stillbirth or neonatal death (ONS, 2019)  
  • Bereaved parents are more likely to experience mental health conditions such as PTSD, anxiety and depression (Heazell et al, 2016).

3. Mental health

Bereaved parents are more likely to experience mental health conditions such as post-traumatic stress disorder (PTSD), anxiety and depression (Weng et al, 2017; Heazell et al, 2016). If required, assessment and timely referral is therefore essential. It may be appropriate to arrange for parents to talk through their experience with the obstetrics or midwifery teams, or they may need further assessment and formal treatment. Mental health referral pathways differ across the country, so find out what is available in your area. Also consider signposting parents to Sands or another charity; we are here to offer support and guidance to anyone affected by baby loss.

‘I suffered from PTSD as a result of my daughter’s birth. It took me four years to get a diagnosis. No one fully addressed or listened to how severe my symptoms were’ – Anonymous bereaved mum (BLAW Alliance, 2019).

Practitioner wellbeing

Supporting grieving families can be emotionally challenging and can trigger difficult feelings even in experienced CPs. Therefore, it is important to pay attention to your thoughts and feelings and reach out for support when needed.  

Baby Loss Awareness Week starts on 9 October, and gives parents, families and health practitioners to remember babies who died during pregnancy or shortly after birth. This year, the week’s theme is wellbeing. Throughout the week a range of topics will be explored, with the chance to share advice, coping techniques and personal experiences.

Effective wellbeing support looks different for everyone, so find what works for you. Sands is here to support anyone effected by baby loss – including practitioners. Our helpline provides direct support for all.  

Clare Worgan (first profile photo) is external training and learning resources manager and Marc Harder (second profile photo) is national bereavement care pathway project lead at Sands.


Resources


Time to reflect

Would you like to increase your confidence in supporting grieving families, and support Baby Loss Awareness Week 2021? Join the conversation on Twitter via #BLAW, @SandsInsights, @SandsUK, @Commprac or join a free Sands training webinar at sands.org.uk/training


References

BLAW Alliance. (2019) Out of sight, out of mind: bereaved parents falling through the gaps in mental health care. See: www.babyloss-awareness.org/wp-content/uploads/2019/10/BLAW-Out-of-Sight-Out-of-Mind-Report-2019.pdf (accessed 9 August 2021).

Boyle FM, Horey D, Middleton PF, Flenady V. (2020) Clinical practice guidelines for perinatal bereavement care — An overview. Women and Birth 33(2): 207-10. See: https://doi.org/10.1016/j.wombi.2019.01.008 (accessed 9 August 2021).

Gold KJ. (2007) Navigating care after a baby dies: a systematic review of parent experiences with health providers. Journal of Perinatology 27(4): 230-7. See: https://www.nature.com/articles/7211676 (accessed 10 August 2021). 

Heazell A E P, Siassakos D, Blencowe H, Burden C, Bhutta Z A, Cacciatore J et al. (2016) Stillbirths: economic and psychosocial consequences. The Lancet 387(10,018): 604-16. See: https://doi.org/10.1016/S0140-6736(15)00836-3 (accessed 9 August 2021).

Office for National Statistics (2019). Vital statistics population and health reference tables, November 2019. See: https://www.ons.gov.uk/peoplepopulationandcommunity/populationandmigration/populationestimates/datasets/vitalstatisticspopulationandhealthreferencetables (accessed 10 August 2021).

Peters MD, Lisy K, Riitano D, Jordan Z, Aromataris E. (2015) Caring for families experiencing stillbirth: evidence-based guidance for maternity care providers. Women and Birth. 28(4): 272-8. See: https://doi.org/10.1016/j.wombi.2015.07.003 (accessed 9 August 2021).

Sands. (2021) Challenge 14. See: https://sands.org.uk/get-involved/do-your-own-fundraising/challenge-14 (accessed 10 August 2021).

Weng, S‐C, Chang, J‐C, Yeh, M‐K, Wang, S‐M, Lee, C‐S, Chen, Y‐H. (2017) Do stillbirth, miscarriage, and termination of pregnancy increase risks of attempted and completed suicide within a year? A population‐based nested case-control study. British Journal of Gynaecology 125(8): 983-90. See: https://doi.org/10.1111/1471-0528.15105 (accessed 9 August 2021)

Image credit | Shutterstock

 

 

 

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