In the minutes, hours, days and weeks after a family has learned that their baby has died, the care they receive from health professionals can have long-lasting effects. Excellent care cannot remove parents' pain and grief, but it can help them during this devastating time. In contrast, poor care can significantly add to their distress.
In the UK, approximately 50 babies die every year around or shortly after birth from Group B Strep infection, so care of bereaved families is an important area to the charity Group B Strep Support (O'Sullivan et al, 2019). Like other charities working with bereaved parents, Group B Strep Support are strong supporters of Baby Loss Awareness Week, which takes place every year from 9-15 October to raise awareness of pregnancy and baby loss, commemorate babies' lives, and drive improvements in the care and support for those affected.
The National Bereavement Care Pathway for Pregnancy and Baby Loss (NBCP) seeks to improve the quality and consistency of bereavement care provided by healthcare professionals to parents after the loss of a baby during or after pregnancy. Initially funded by the Department of Health and Social Care, and with the backing of the All Party Parliamentary Group on Baby Loss, the NBCP has been led by Sands (the stillbirth and neonatal death charity), working closely with partners consisting of baby loss charities and professional organisations. Despite being recognised as best practice, sadly the NBCP has not been universally implemented across the NHS.
Alison and Justin Clark's first child, Sebastian (Sebby), tragically died as a result of group B Strep infection in March 2017 following a completely healthy pregnancy. Alison has kindly agreed to share her personal experience of baby loss, and how the lack of psychological support affected her.
Sebby died on 12 March 2017. The first contact from the Bereavement Service was over a month later, in late April 2017. Alison says:
‘Essentially, in the depths of raw grief, it was left up to me to try and find help. I felt like I was drowning; I felt desperate; I felt lost. I, naively, thought the hospital would be able to help. They just referred me to my local Improving Access To Psychological Therapies service. And this service (where I worked) does not do bereavement counselling.
‘I felt like I had poisoned Sebby. Before we found out it was negligence, three months after he died, I was 100% convinced I had killed him. I still feel a bit like that even though it has been proven that is not the case.’
Unable to get the support needed from the hospital, Alison contacted a variety of different charities online and got some help, though only sporadic and over the phone.
‘I had referred myself to the local bereavement service. The waiting list was long, but I finally got an appointment. The lady was lovely. It was good to have someone I could talk to. But we both agreed I needed more. I needed somewhere specific for people whose babies had died. I needed somewhere that could help me with the trauma.’
Fortunately, Alison had befriended another bereaved parent through Sands' online community. The friend was in touch with Petals, a Cambridge-based baby loss counselling charity which provides specialist counselling for parents who suffer the trauma of baby loss. Luckily, Petals was running a pilot scheme involving Skype sessions. Alison recalls:
‘It was a lifeline. They helped me through so much, including the excruciating build-up to and the heartbreaking period of the inquest. I have now finished with the counselling portion and am getting trauma therapy (EMDR) through them. Without Petals, I would be in a much darker place.’
Alison's experience demonstrates why it is so important that families who experience pregnancy or baby loss and need psychological therapy can access it.
Alison and Justin used Group B Strep Support's information materials when pregnant with twins the following year. Alison said:
‘Group B Strep Support were very helpful and helped me to feel a bit more grounded and to think less catastrophically.’
This Baby Loss Awareness Week, we support the calls from the 70+ charities in the Baby Loss Awareness Alliance for the Government to ensure that anyone enduring pregnancy or baby loss needing specialist psychological support can access it free of charge wherever they live in the UK.
Jane Plumb MBE, Chief Executive of Group B Strep Support, says:
‘As Alison and Justin's terrible experience shows, when parents have suffered the devastation of losing their baby, it is so important that they are provided with the information they need, together with appropriate bereavement care, including psychological support.’
For more information on Group B Strep, and to order free information materials for the families in your care, visit www.gbss.org.uk
For more information about Baby Loss Awareness Week and to get involved, visit www.babyloss-awareness.org