Invisible Loss: Developing a Name for Pregnancy Loss Parents

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Pregnancy loss occurs in approximately 1 in 4 or 25% of pregnancies. In the U.S., it’s estimated that over 1 million losses occur across pregnancy each year. Pregnancy loss can be a traumatic event for those impacted and is often associated with feelings of grief, loss, and emotional distress. Despite its far-reaching and significant impacts, there hasn’t been a socially sanctioned and designated word for the millions of impacted individuals with which to identify.

This gap was brought to light in the declaration of Pregnancy and Infant Loss Awareness Month by President Ronald Reagan on October 25, 1988. In his speech, he said, "When a child loses his parent, they are called an orphan. When a spouse loses his or her partner, they are called a widow or widower. When parents lose their child, there isn’t a word to describe them.”

Why does this matter?

Language helps us put words into our experience, which, in turn, helps us understand better and make meaning. The meaning we attach to a loss through language plays an important role in our ability to move through grief. The lack of a socially recognized term for a person who has experienced pregnancy loss can contribute to feelings of isolation and invalidation of the significance of the loss.

“My loss is invisible, it’s as though (my baby) never existed” – participant

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In a recent study led by this author, we aimed to fill this language gap. We conducted a Delphi study in which pregnancy loss experts—persons with professional expertise and parents with first-hand experience—were recruited. The expert panel proposed, reviewed, and rated terms for persons who had experienced pregnancy loss through three rounds of ratings until the term bereaved parent was selected.

In reviewing preferences, parents and professionals equally preferred the term 'bereaved parent'. In addition, both parents and professionals reported perceived benefits to the development of a term. The benefits they identified could be classified into three categories: community and connection, validation and loss, and identification (i.e., identity as a person and identification of experience).

How can you use language to support someone who has experienced a pregnancy or newborn loss?

• Explore how the person is making meaning of the experience and how this impacts their thoughts, feelings, behaviors, and relationships.
• See what language they are using and mirror this. For example, if they identify themselves as a “bereaved parent” and describe themselves as “grieving the loss of their baby,” use similar language.
• Speak the baby’s name if the parents selected one.