Invisible Loss: A Delphi Approach to Develop A Term for Individuals Who Experienced Perinatal Loss

Don’t say “the D word”: Exploring death taboo and biopower in pregnancy loss awareness advocacy

“…Pregnancy loss and stillbirth are also shrouded in taboo, stigma, and invisibility in the United States (Brierley-Jones et al, 2014-2015; World Health Organization, n.d.). Diamond et al (2021) argued that, unlike widow or orphan, there is no term to denote someone who has experienced a child or baby loss. Not having the words to express the experience of losing a baby “coupled with societal reactions to this type of loss (e.g., minimization and avoidance), can have detrimental effect on one’s ability to process and cope” (Diamond et al, 2021: 83-84).…”

“…Diamond et al (2021) argued that, unlike widow or orphan, there is no term to denote someone who has experienced a child or baby loss. Not having the words to express the experience of losing a baby “coupled with societal reactions to this type of loss (e.g., minimization and avoidance), can have detrimental effect on one’s ability to process and cope” (Diamond et al, 2021: 83-84). Specifically, pregnancy loss signifies a type of disenfranchised grief, meaning that institutions and groups may not accept it as a grief event and may not provide meaningful, open mourning processes (Diamond and Diamond, 2014; Doka, 1989).…”

Early pregnancy loss

“…When the baby dies during pregnancy, the infant's presence disappears, leaving no tangible evidence the baby ever existed, and the mother's grief can be unrecognized. 16 A helpful way to acknowledge perinatal grief is through a tangible memorial item. A special bracelet charm, a garden, or a tattoo may prove com-forting.…”

“…The growing baby is noticed and nurtured by the mother, who feels the changes to her body as life grows within, but this person is hidden, not yet known by anyone else. When the baby dies during pregnancy, the infant's presence disappears, leaving no tangible evidence the baby ever existed, and the mother's grief can be unrecognized 16. A helpful way to acknowledge perinatal grief is through a tangible memorial item.…”

“…A significant part of providing compassionate, sensitive, and appropriate care is to assess the meaning of the pregnancy, as the nature of the loss is not as significant as what the loss represents to the woman 15,16. A simple assessment technique is to ask questions like “What does this mean to you?” or “I wonder how this miscarriage feels for you?”17 Assessing the meaning of the pregnancy and the pregnancy loss provides a framework to address her concerns.…”