What is it about?

"Legacy" is a word that can be used in many different ways, often in conjunction with the achievements of celebrities or the elderly after their long and fruitful lives. In this study, 11 parents who experienced infant or fetal death reflected on their child's brief life, lasting legacy, and how hospital staff and others can honor their legacy in life and practice. Their stories and insights remind us that even when life and time together are short, a child's legacy can have far-reaching impacts on families, systems, and communities.

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Why is it important?

The loss of a pregnancy, newborn, or young infant is devastating for parents, siblings, and other family members. Although the life of the child may have been shortened by illness, injury, or congenital defects, parents and families actively think about and describe their child's legacy in their grief. Parents who have experienced infant or fetal loss describe their baby's legacy as 1) memories and experiences that have a lasting effect on others, 2) reflective of their healthcare experiences and relationships, and 3) a reflection of their cultural and spiritual beliefs and individual grief experiences. It is important for doctors, nurses, healthcare providers, and support specialists to recognize, honor, and help families engage with their child's legacy as they grieve this significant loss.

Perspectives

This is one of several studies we have done about how different groups describe the concept of legacy in their lives and experiences. What makes this population different is the often very short amount of time they are able to physically and psychologically spend with their child - however, the limitations of time do not detract from the great impact the child's life is able to make in their family, healthcare team, and community. Regardless of the mechanism or timing of loss, it is important for parents to see, know, and be reminded of the impact of their child's life on those around them, and for support persons and specialists to help them engage in and reflect on these experiences.

Jessika Boles
Vanderbilt University

Read the Original

This page is a summary of: Little time, lasting impact: Bereaved caregiver perceptions of legacy in perinatal and infant loss, Journal of Neonatal-Perinatal Medicine, August 2022, IOS Press,
DOI: 10.3233/npm-210897.
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