5 Organisations Fighting the Stillbirth Stigma for South Asians

Stillbirth represents a significant public health issue with profound physical and psychosocial consequences for women, families, and society.

Despite its prevalence, stillbirths have often been overlooked due to social taboos and stigma, especially concerning South Asians. 

According to the organisation Sands, in the UK alone, around 13 families experience the heartbreak of losing their baby before, during, or shortly after birth – equating to approximately 4,500 babies each year.

Additionally, the staggering statistic that at least 15% of pregnancies end in miscarriage serves as a poignant reminder of the scale of this issue.

These numbers are not just statistics; they represent the depth of anguish and loss experienced by countless families.

Whilst South Asian families often support those who go through this ordeal, the resources available is not widely promoted.

Likewise, the attention given to this community does not seem as important as others, even if the feelings, experiences, and damage are shared between many women. 

It is within this context that the tireless efforts of certain organisations dedicated to supporting those affected by stillbirth and advocating for awareness within South Asian communities become all the more vital.

Sands

For over four decades, Sands has provided support to individuals impacted by pregnancy and baby loss.

It extends understanding and solace through its freephone helpline, online community, resources, and a network of approximately 100 regional support groups across the UK.

In collaboration with healthcare professionals, trusts, and health boards, Sands delivers various training programs and bereavement care resources to ensure optimal care nationwide.

Sands actively advocates for research to comprehend the underlying causes of baby deaths, enhance maternity safety, and prevent infant mortality.

Additionally, they partner with governmental bodies and influential figures to raise awareness.

Recognising the diverse perspectives within different communities regarding baby loss, Sands acknowledges the unique challenges faced by bereaved parents, particularly within South Asian communities.

Understanding the necessity for tailored support, Sands has established a dedicated, confidential space to cater to the specific needs of South Asians.

Here, they offer tailored and sustained assistance irrespective of the duration since their loss.

Find out more here. 

Muslim Bereavement Support Service

The Muslim Bereavement Support Service is a registered charity established in 2012.

Their focus lies on supporting bereaved women coping with the loss of a loved one.

Collaborating with various organisations, notably the NHS and hospices, they offer a spiritual dimension to bereavement support services.

Recognising the complexity of emotions and physical reactions that accompany grief, the service aims to provide aid and solace during these challenging times.

Trained volunteers deliver confidential support, available through face-to-face meetings or telephone conversations in multiple languages.

Immediate and ongoing support is offered in the aftermath of loss, including assistance with practical matters such as funeral arrangements and registration of the death.

Additionally, individuals can seek support through various channels, including telephone consultations, email correspondence, and small group sessions facilitated by individuals experiencing similar loss.

Recognising the heightened need for bereavement support among young mothers, the service actively collaborates with Gardens of Peace and hospitals to reach out to bereaved mothers.

See more of their work here. 

ASAM

The Association of South Asian Midwives (ASAM) serves as a platform for the South Asian midwifery workforce and birthing community.

Data indicates that South Asian women face a disproportionately higher risk of pregnancy-related complications compared to their white counterparts, with neonatal mortality rates also elevated among South Asian babies.

Founded by three midwives – Nafiza, Benash, and Sundas – ASAM emerged from discussions surrounding observed issues and personal experiences within the workplace and South Asian networks.

ASAM is dedicated to addressing various challenges to ensure equitable maternity care for the South Asian community. Their objectives include:

• Increasing awareness and understanding of cultural behaviours and taboos within South Asian maternity and birthing environments
• Initiating discussions on stereotypes and misconceptions concerning the South Asian community
• Promoting Midwifery as a viable career option among individuals from the South Asian community
• Providing mentorship and support to the South Asian midwifery workforce in the UK
• Collaborating with unions to advocate for the concerns and obstacles faced by the South Asian community

Check them out here. 

Willow’s Rainbow Box

Willow’s Rainbow Box emerged from the personal journey of Chairperson Amneet Graham, who encountered a missed miscarriage at 8 weeks gestation in September 2017.

Following this loss and subsequent pregnancy in March 2018, marked by heightened anxiety due to the previous experience, Amneet found limited avenues for support.

The birth of Willow, Amneet’s daughter in November 2018, inspired her to extend assistance to women navigating pregnancies after loss.

This registered charity is dedicated to aiding women and families undergoing pregnancies following miscarriage, stillbirth, or neonatal death.

Its primary initiative involves providing comfort boxes to alleviate anxiety.

Initially, these boxes are distributed in select areas of the Northeast, with plans for expansion as resources permit.

Additionally, the charity launched a mini-series focusing on South Asian baby loss, featuring authentic narratives from individuals within these communities.

These stories, shared anonymously to safeguard contributors’ privacy, aim to raise awareness about challenges encountered by South Asian communities and normalise conversations surrounding this topic.

See more of them here. 

Stillbirth Society of India

The absence of formal organisations addressing the needs of bereaved parents in India underscores the urgency of establishing the Stillbirth Society of India.

Its formation aims to unite individuals with a shared commitment to addressing this public health challenge and reducing preventable stillbirths in India.

Through collaborative efforts, the society ensures that every unborn baby receives optimal care and that bereaved parents get the support they deserve.

The organisation is comprised of healthcare professionals, researchers, and concerned individuals.

They are united in the mission of reducing stillbirths and enhancing support for families affected by such tragedies.

Their objectives include:

• Increasing awareness, research, education, advocacy, and family support regarding stillbirth to minimise its incidence and impact
• Implementing evidence-based interventions to prevent avoidable stillbirths through timely identification and dissemination of knowledge to healthcare workers and the public
• Researching to understand the causes of stillbirth and establishing a national registry to compile relevant information
• Providing patient education materials to healthcare professionals, families, and the general public to manage and mitigate risks associated with stillbirth
• Hosting scientific events such as CMEs, symposia, and conferences to promote knowledge exchange on stillbirth prevention

Visit their website here. 

The unwavering dedication of charities and organisations committed to creating safe spaces for those affected by stillbirth serves as a beacon of progress.

Through their tireless efforts, they challenge taboos and cultivate a culture of empathy, understanding, and support.

Their strides in this field amplify the voices of those impacted by stillbirth and champion initiatives that lead us towards a brighter, more inclusive future for all.