In recent years, the awareness and acceptance of perinatal loss (PNL) has evolved as celebrities and influencers like Chrissy Teigen or Nabela Noor have shared their loss stories. After they, and other high profile individuals like Cristiano Ronaldo, have recently come out with their loss narratives, the conversations and advocacy for increased support for PNL has increased. Pregnancy and infant loss, also known as perinatal loss, is common across all communities throughout the world. Perinatal loss is an inclusive term coined to cover the extensive and diverse ways in which pregnancy and infant loss can occur. This can include, but is not limited to, miscarriages, stillbirths, neonatal death, sudden infant death, abortion due to medical reason, ectopic pregnancies and more.
The impact that perinatal loss has on women, their partners, and the rest of their families is becoming more transparent, which is necessary especially for communities within the South Asian diaspora. Often, when infertility or difficulties with pregnancy becomes a known fact within the community, aunties and uncles can offer unsolicited advice or begin to question the mother’s health or gossip about the couple within surrounding social circles. If a mother or couple experiences PNL, this can lead to inappropriate behaviors such as pretending the loss never occurred, telling the couple or individual that they can always try again, or spreading the news across communities.
The term PNL is also inclusive of the time period in which a woman becomes pregnant to one year after the baby is born. The term includes both: the loss impacting the mother and their partner, versus only the mother (this is an important consideration as it’s not just the woman who experiences the grief of loss). It is important to consider both partners if there are two people who have experienced a loss.
As a doctoral candidate of occupational therapy, I have focused my doctorate on the role that occupational therapists can have in supporting postpartum mothers and families in parenting after loss. I have realized that conversations related to perinatal loss are uncommon in the South Asian community for several reasons. First, perinatal loss can be considered taboo because of the mortality and personal experience that is attached. The impact of death and bereavement on an individual’s mental and emotional well-being is not something that is openly discussed in South Asian communities. Especially when the death and bereavement is associated with an unborn child or infant, there is not necessarily guidance or modeling around how to have these conversations, process these feelings or support the affected individuals.
Second, the process of becoming pregnant can be traumatic or stressful in itself. Conception is not easy for every individual or couple. Some couples may need support such as in-vitro-fertilization (IVF) or other assistive reproductive technologies (ART), as well as lifestyle modifications to become pregnant. Loss of a pregnancy or other complications that can arise during delivery can significantly impact the emotional and mental health of a woman and her partner. The increased stress, potential trauma and multiple transitions that occur from the time of conception to delivery are all risk factors for perinatal mood disorders (PMADs). PMADs are mental health conditions that arise in women who have become new mothers or are trying to become new mothers. PMADs can occur whether a woman experiences PNL or not.
Third, there is really no guidance on how to support individuals who have experienced pregnancy and infant loss. Most research articles discuss emerging evidence on how to process grief related to PNL. In terms of facilitating conversations and how you can show support, there is little to no resources for individuals especially in the South Asian community to utilize and follow. It is important to increase conversations and acceptance around perinatal loss in South Asian communities for several reasons. First, research shows that South Asian women have an increased likelihood to experience infertility and pregnancy related to their challenges or disorders. For example, many South Asian women in their 20s or 30s are diagnosed with or have polycystic ovarian syndrome (PCOS) that can create difficulty in conceiving and sustaining a healthy pregnancy. Second, South Asian women are already at higher risk for developing or experiencing mental health challenges given the increased mental and stress load they often carry across different roles in their lives.
Given that there is an increased likelihood that they’ve already experienced trauma in other areas of their lives, it is important to recognize that South Asian women who do not have mental health support during perinatal loss occurs are at increased risk for mental health challenges. One recommendation to support women and mothers in this context is through conversation and social engagement. Research has shown that women and mothers who experience PNL and are diagnosed with PMADs benefit from validation in their experience and being able to share their stories with social circles.
While South Asian communities consider mental health and pregnancy loss a taboo topic, we have the power as women and as healthcare professionals to change the narrative. Some ways to do this are listed below:
- Don’t assume that someone has had an easy time conceiving or that they haven’t experienced perinatal loss.
- Respect boundaries and don’t question individuals about their conception timelines or if they’ll have kids
- If you know or believe someone has experienced perinatal loss, you can offer to take care of chores or responsibilities, or ask what they need.
- If someone is sharing their loss story with you, don’t respond with toxic positivity or invalidation. Comments like, “Well there’s always next time” or “Be glad you’re not dealing with what I am now with my kids” are not helpful.
- Do not associate PNL to religion, “If you start going to temple or doing XYZ ceremonies, you’ll have better luck next time.”
Be mindful of what you say; if you don’t know what to say, sometimes silence is better. These are some statements to use, if you want to be supportive in a conversation but don’t know what to say.
- “What is the best way I can support you right now? I can listen, come by and help out with XYZ, or drop off whatever you might need — you choose and let me know when you’re ready and I’ll be here”
- I’m sorry you’ve experienced the loss of (your pregnancy or infant), if you want to share what you’re feeling or experiencing, I’m here to listen.
- When you’re ready, maybe we can work together and find some resources like a support group or community group that you can attend? I’m happy to go with you if you’d like.”
If you are looking for more information or support on this, you can check out these resources: