KEY POINTS
- 1.
Parents with a history of multiple previous fetal/neonatal losses may find it difficult to care for a critically ill newborn infant. The fear of losing yet another child can be heartrending and traumatic.
- 2.
An individual’s fundamental beliefs about themselves and their future children are not only disrupted by a pregnancy loss or undesirable perinatal diagnosis, but are often accompanied by psychological sequelae.
- 3.
Cultural silence and the disenfranchised nature of the repeated losses of children contribute to prolonged, amplified, and sometimes, delayed grief reactions.
- 4.
Neonatologists and other healthcare providers often feel ill-equipped to address the emotional and grief aspects of reproductive loss.
- 5.
A well-informed team of clinical care providers with basic knowledge about the unique aspects of perinatal loss coupled with an understanding of the grieving process and beneficial communication modalities can lay the foundation for a healthy grieving trajectory for families enduring a reproductive loss.
Reproductive Story
Reproductive psychologists Jaffe and Diamond observed that individuals envision their future family with an array of hopes and dreams long before conception, and the trauma occurs when those expectations fail to come to fruition. They found that individuals’ fundamental beliefs about themselves and their offspring is disrupted by the experience of perinatal morbidity or mortality, which can be devastating. Although the grief trajectory is highly individual, Jaffe and Diamond found the following themes to be consistent among those grieving a reproductive loss: not only has the child died, but a part of them has died as well; there is a loss of hopes and dreams for themselves and the child; and there are feelings of failure at the most basic level. The extent of loss can be multilayered. Neonatologists and all care providers in neonatal intensive care units (NICUs) live this story repeatedly with the families they care for. For parents who have had a history of multiple fetal/neonatal losses, caring for a critically ill newborn infant can abrade and reopen all the wounds that had seemingly healed over time. The fear of losing yet another child can be heartrending and traumatic; it can reaggravate all the previous trauma and nightmares that they believed had subsided.
Ontological Death
In an ontological death, that which “dies” is not a physical entity but rather the meaning in one’s life. This type of death accompanies great personal loss and often results in a loss of identity, because the roles and practices in which self-identity were constructed have been damaged. Perinatal loss results in an ontological death through the collapse of previously understood or taken-for-granted meanings of what it is to be pregnant. Viewing the loss of a young infant to a life-limiting diagnosis, severe disability, or extended stay in the neonatal unit through the lens of an ontological death provides insight into how parents might reconstruct meaning and identity from this experience.
When considering the complex issues surrounding the loss of a newborn infant soon after birth, the model of an ontological death may guide healthcare professionals in adopting a holistic approach that cares for the social, psychological, emotional, and spiritual needs of parents in addition to the immediate physical needs. This model also illustrates the importance of providing ongoing follow-up care as parents reconstruct their understanding of how the world works, who they are in this world, and how to continue living in their new reality. This is also where an individual begins to rewrite their reproductive story. Put another way, based on their new lived experiences and reconstructed identity, the reproductive story evolves.
Complexity of the Loss of Young Infants
As previously stated, the experience of having lost a young infant is typically not limited to perinatal death or the fear for the future of a fragile infant. Families confronted with a life-limiting fetal diagnosis, fragile infancy, or reproductive loss often present a complex response that may encompass a variety of emotions such as fear, shock, anger, anxiety, sadness, guilt, even jealousy of other parents with healthy babies. For parents with a very low birth weight infant in comparison to parents with babies of normal birth weight, studies indicated a five times higher risk for severe psychological distress manifested as depression, anxiety, and obsessive-compulsive behaviors. , Additionally, factors that can overwhelm the parent’s ability to cope include financial strain, travel expenses, long commutes, and time away from other family members. Without the assistance of multidisciplinary planning and support, reproductive bereavement can be replete with isolation, secrecy, ambivalence, and shame.
Reproductive and early infant loss in its various forms is prevalent, impacting tens of millions of couples worldwide each year, yet the reaction and trajectory for these couples is highly individualized. The researchers who developed and conducted a body of research using the Perinatal Grief Scale classified reactions to perinatal loss in three progressive subscales: active grief, difficulty coping, and despair ( Fig. 87.1 ). , They found a wide range of emotions and no clearly delineated time frame or pattern. Perinatal grief was found to linger for long periods of time. It was truly difficult. Similar immediate or delayed grief reactions were seen in the partners of those who had physically lost the infant. At 24 months the partners were actually scoring higher in the subset of “despair,” with more intense feelings of worthlessness and hopelessness than the mother herself.
Disenfranchised Grief
Studies have found that perinatal death and illness are as emotionally painful as the loss of an older child or adult family member and are associated with a grief trajectory that is culturally disenfranchised. In our experience, the loss of a newborn or a young infant can be even more traumatic. The grief trajectory may be prolonged and complicated due to lack of support, disenfranchisement, and the ambiguous nature of the loss. , Doka (2002), introduced the concept of disenfranchised grief, which he described as an experience that “is not openly acknowledged, socially validated, or publicly observed (p. 5).” Secrecy and/or shame contribute to disenfranchised grief, and individuals do not feel entitled to grieve. Parents enduring a perinatal loss or that of a young infant can find themselves traversing a grieving trajectory that has not been sufficiently established by society and can be likened to an unworn path of bereavement.
Disenfranchised grief may also impact one’s mental health. It would be erroneous to assume everyone has a difficult or negative reaction to their loss. Sometimes a loss can have an impact on mental and physical health. Sometimes not. However, that does not mean it is a “nonevent.” Everyone is impacted differently, and one’s reaction can change or intensify over time. Trauma is associated with long-term biopsychosocial consequences that impact the capacity to learn, cope, and adapt, which can lead to chronic maladaptive dysregulation of sympathetic nervous system activation.
The natural responses associated with the protection and survival of children are likely to trigger maladaptive stress response states associated with trauma, which can ultimately result in numerous long-term physical and psychological harms. If someone is hurting and not being allowed to express that grief or pain, it can impact mental health and potentially contribute to anxiety, depression, substance misuse, eating disorder, or complicated grief. If the behavior is constant or long term, it can have a severe impact. Your interaction and attention to the grief can potentially mitigate these detrimental repercussions.
Impact of Previous Losses During Pregnancy or Early Infancy
The loss of a fetus or young infant is distinctly different from experiences surrounding the loss of a parent, spouse, friend, or even an older child. Because perinatal loss cannot be compared with other socially experienced losses, it is easy to misunderstand the meaning or fear of such a loss. Parents’ experiences do not always align with societal expectations.
Prenatal attachment does not dissolve immediately when a fetal/newborn loss occurs. Although society expects parents to quickly move on, parents may continue to grieve deeply for long periods of time. , The paradox of such a loss contributes to disenfranchised grief, especially if the meaning of the loss is not understood or acknowledged. Interacting with and treating parents according to a socially accepted expectation of the perinatal loss experience contrasts with parents’ needs. Recognizing our own assumptions of what parents need or how we think they should respond is equally important. The acknowledgment and attention to the holistic emotional, spiritual, and behavioral needs that a person requires to affirm intrinsic meaning and purpose must be integrated into the plan of care. Healing-centered engagement seeks to affirm and “authentically” dignify human experiences of loss rather than to oversimplify them as a problem to be solved biologically. This helps us as healthcare professionals to mitigate the risk of further disenfranchising parents’ grief.
Grief
Attention to parental grief has been shown to be highly beneficial to parent–provider/staff interactions in the NICU (91% of study respondents), second only to frequent family meetings (94% of study respondents). Kübler-Ross pioneered grief therapy in the 1980s and authored her observations of five stages of grief. These stages have been recognized by several theorists, but the basic RABDA paradigm ( r eject, a nger, b argaining, d epression, and a cceptance) is shared. Their purpose was intended to describe the journey of individuals coping with a terminal diagnosis and was not necessarily meant to be generalized for all loss experiences. Although the stages of grief helped to understand the nature of grief, they did not offer practical applications for professionals to provide grief assistance.
Worden noted that stages of grief may not always follow a linear pattern to a point of resolution. He introduced a series of tasks that need to be worked on throughout the grieving process ( Fig. 87.2 ). The tasks are not meant to be presented in a particular order, and the bereaved often move in and out of the different tasks as they grieve. Working through the tasks of grief is an onward journey of self-discovery or rediscovery. There may be triggers of painful recollection, such as previously shared places, holidays, or anniversaries. The loss is not forgotten, but rather incorporated into the individual’s conceptualization of their new self.
