Diagnosis of a lethal fetal diagnosis (LFD) early in pregnancy is devastating for parents. Those who choose to continue with the pregnancy report intense emotional reactions and inconsistent, often insensitive treatment by health care providers. This qualitative descriptive study sought to clarify the experiences and needs of families in order to design responsive perinatal palliative care services, and to establish the feasibility and acceptability of conducting intensive interviews of pregnant women and their partners during their pregnancy with a LFD. We interviewed 2 women and 3 couples during pregnancy or just after birth, using open ended questions. Audiotaped responses were analyzed by two investigators. Two dimensions and six themes emerged. In the dimension of Personal Pregnancy Experience, ‘‘Grieving Multiple Losses’’ elucidates that parents grieve the loss of their normal pregnancy, healthy baby and future parenting. ‘‘Arrested Parenting’’ describes their sudden interruption in the normal process of becoming a parent. The theme ‘‘My Baby is a Person’’ reflects parents’ unanimous desire to honor and legitimize the humanity of their unborn baby. In the dimension of Interactions of Others, three themes were found. ‘‘Fragmented Health Care’’ describes parent’s disjointed and distant encounters with multiple providers. ‘‘Disconnected Family and Friends’’ describes the lack of understanding of what the families were experiencing. ‘‘Utterly Alone,’’ which crosses both dimensions, expresses how the parents’ sense of social isolation adds to their personal sense of loss and loneliness. Recommendations are made for palliative care’s role in respecting and validating the experience of parents living through a doomed pregnancy.
"Parents have expressed frustrations over poor communication, feeling abandoned, and needing more time to make decisions. Parents coped using denial, optimism or pessimism, privacy and control, and
attachment to or detachment from the baby. They reported that it was not helpful when providers encouraged pregnancy termination or focused only on maternal health."
"Our overall impression was that the parents, in spite of their grief, demonstrated love for their baby and determination to find meaning in and honor their baby’s life. The dimensions and themes ... [show the] disconnect between the parents’ personal experiences and that of others, experienced through their interactions with others, leading to an intense sense of isolation that heightened the parents’ experience of loss."
"The compelling stories of these parents suggest that health care providers need to recognize their need to be treated as real parents, with acknowledgement of their baby as a person with a name and a
life, however short its prospect. These parents ask for supportive counseling to help them understandmedical conditions, make informed decisions, and communicate with multiple
providers. Theywant counseling that is providedwith attention to continuity of care, a hopeful approach that acknowledges prognostic uncertainty, and advice that is nonjudgmental."
Denise Côté-Arsenault and Erin Denney-Koelsch,“My Baby Is a Person”: Parents' Experiences with Life-Threatening Fetal Diagnosis, Journal of Palliative Medicine. doi:10.1089/jpm.2011.0165.