“Have no regrets:” Parents' experiences and developmental tasks in pregnancy with a lethal fetal diagnosis

Abstract

Significance Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological and developmental processes are altered. Methods This longitudinal phenomenological study of 16 mothers and 14 fathers/partners sought to learn the experiences and developmental needs of parents who continue their pregnancy despite the lethal diagnosis. The study was guided by Merleau-Ponty's philosophic view of embodiment. Interviews (N = 90) were conducted with mothers and fathers over time, from mid-pregnancy until 2–3 months post birth. Data analysis was iterative, through a minimum of two cycles of coding, theme identification, within- and cross-case analysis, and the writing of results. Results Despite individual differences, parents were quite consistent in sharing that their overall goal was to “Have no regrets” when all was said and done. Five stages of pregnancy were identified: Pre-diagnosis, Learning Diagnosis, Living with Diagnosis, Birth & Death, and Post Death. Developmental tasks of pregnancy that emerged were 1) Navigating Relationships, 2) Comprehending Implication of the Condition, 3) Revising Goals of Pregnancy, 4) Making the Most of Time with Baby, 5) Preparing for Birth and Inevitable Death, 6) Advocating for Baby with Integrity, and 7) Adjusting to Life in Absence of Baby. Prognostic certainty was found to be highly influential in parents' progression through developmental tasks. Conclusion The framework of parents' pregnancy experiences with lethal fetal diagnosis that emerged can serve as a useful guide for providers who care for families, especially in perinatal palliative care. Providing patient-centered care that is matched to the stage and developmental tasks of these families may lead to improved care and greater parent satisfaction.

Parental response to severe or lethal prenatal diagnosis: a systematic review of qualitative studies

“…Of the 28 included studies, 14 were conducted in the United States, four in the UK, four in Ireland, three in Sweden and one each in Australia, Austria and The Netherlands. The studies included a total of 773 participants (591 women, 182 men) and covered a total of 595 affected pregnancies of which 232 were terminated.…”

“…A prenatal diagnosis shatters the parents' hopes and dreams for a healthy child and for future parenthood, irrespective of their decision to continue or terminate the pregnancy. Several studies found that parents who continued the pregnancy not only experienced the loss of a healthy child and their envisioned future but also mourned the loss of a normal, happy pregnancy and yearned for pregnancy rituals (e.g. setting up a nursery, buying baby supplies).…”

Implementation of exome sequencing in fetal diagnostics—Data and experiences from a tertiary center in Denmark

“…The positive framing of increased knowledge has also been voiced by parents after the neonatal death of a child, where the diagnosis was not made until the third trimester or after birth. It has previously been described how a diagnosis allowed couples to revise their goals and prepare emotionally for the birth and death of the child 19 …”

Pediatric Palliative Care in Infants and Neonates

“…When discovered—at birth or even beforehand with fetal diagnostics—the pregnancy generally takes a dramatic turn as hopeful anticipation is replaced by fear, joy may be eclipsed by guilt, and the experience of pregnancy and childbirth becomes medicalized—often with obsessive thoughts surrounding each clinic visit, imaging study, or test. In addition to cure-oriented and life-extending neonatal intensive care, the provision of concurrent PC may provide supportive care for the patient and family, and may help in decision-making [ 12 , 13 ].…”