“My Baby Is a Person”: Parents' Experiences with Life-Threatening Fetal Diagnosis

Abstract

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.

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

“…Parents expect prenatal tests to confirm that everything is going normally with their pregnancy. Hence, those who are told of a lethal fetal diagnosis (LFD) experience intense grief and shock when their expectations are shattered (Côté-Arsenault and Denney-Koelsch, 2011; Lalor et al, 2009; Sandelowski and Barroso, 2005). In 3% of fetuses, conditions exist that are life-limiting and 2% are considered lethal (Coleman, 2015).…”

Death talk: Basic linguistic rules and communication in perinatal and paediatric end-of-life discussions

“…While some parents do not wish to receive full information [1,27] when making EoL decisions for their child a recurring theme in accounts from parents is that they have access to too little information and sometimes limited access to clinicians, the key providers of information [24][25][26]28,29,[32][33][34][35][36][37][38][39][40][41][42]. The commonest complaint is a lack of information relating to the outcome for their child [38,[43][44][45], information on the available options for their child [46], and information about the circumstances under which death occurred and autopsies [47,48]. Parents of children who have died have indicated that having access to more information would have altered their decision pathway and would also have provided clarity regarding the cause of their child's death [25].Others have complaints of an even more serious nature in cases where information was sometimes not made available to them at all [28,34,49].…”

“…Parents often recognise and accept the uncertainties and unpredictability of their child's condition, which impacts on the potential outcomes and options for their child, and they appreciate it when healthcare professionals admit to the unpredictability involved [1,30,46,53,54]. In fact, studies have shown that parents do not wish to be given false hope when they are seeking information about their child [42].…”

“…In fact, studies have shown that parents do not wish to be given false hope when they are seeking information about their child [42]. They have also repeatedly indicated that they do not want to be stripped of all hope but, at the same time, do not welcome healthcare professionals providing false hope [32,34,37,46,53,54].…”

Ethical Implications of Osteogenesis Imperfecta across the Lifespan

“…20 Moreover, some pregnant women value their fetus regardless of a diagnosis of disability and make choices accordingly to benefit their fetus even at some increased risk to their own well-being, and clinicians should support this decision. [21][22][23][24] Ethical questions sometimes arise when the choice of the pregnant woman differs from that of her clinician. 25 The ethical obligation generated by autonomy is to respect the decisions of pregnant women even if the clinician disagrees, provided that the treatment choices are medically and ethically acceptable.…”