Parents' Experiences of Continuing Pregnancy With a Lethal Fetal Diagnosis: Goal, Stages, Tasks of Pregnancy

Purpose: The purpose of this study was to describe parent experiences in continuing pregnancy with a lethal fetal diagnosis. A secondary aim was to identify the revised developmental tasks of pregnancy undertaken by the parents. 

Methods: Longitudinal, hermeneutic phenomenology study consistent with work of Merleau-Ponty. 16 mothers and their spouse/partners (14) who were continuing pregnancy with a known fetal diagnosis were recruited from obstetrical and perinatal centers in 4 states. Parents were interviewed jointly and separately prenatally and after the baby’s birth death; 90 interviews were conducted. Transcripts of interviews and field notes were the data sources that were uploaded into Atlas.ti. All data were coded; themes were identified. Interpretive analysis was done to identify themes, relationships, and develop a framework. 

Results: The overall goal for parents was to “Have No Regrets” when all was said and done. Five stages of time (Pre-diagnosis; Learning Diagnosis; Living with the Diagnosis; Birth and Death; Post Death) were identified that related to 7 developmental tasks of pregnancy (Navigating Relationships; Comprehending Implications of the Condition; Revising Goals of Pregnancy; Making the Most of Time with Baby; Preparing for Birth and Inevitable Death; Advocating for Baby with Integrity; Adjusting to Life in Absence of Baby). Parents advocated for their babies, wanted them treated as a person, and parented them prenatally. Prognostic certainty was found to be highly influential in parents’ progression through developmental tasks.  Although all grieved, several of the parents reported being joyous at the birth of their baby. All treasured photographs and other memorabilia of their babies. 

Conclusion: Receiving a lethal fetal diagnosis mid-way in pregnancy was devastating and dramatically altered the psychosocial experience of pregnancy.  Mothers and fathers shared the goals, stages and tasks of pregnancy. However, mothers’ experience was much more physical and emotionally attached due to the baby being inside of them. Fathers were able to choose their involvement, were concerned about their wives’ health, and they treasured their babies. Understanding the profound psychosocial tasks that parents are dealing with, and matching one’s care to meet these parent needs could improve parent outcomes.