The Ambiguous Loss of Premature Birth - A Survey
Coping with grief and conflicting emotions of premature birth.
Most people experience the loss of someone or something of great importance several times during their lives (Bonanno, 2001). When grief is related to loss of an experience, not a death, how does one grieve or cope? Boss (1999) coined the term “ambiguous loss” when studying the wives of pilots missing in action in Vietnam and Cambodia. They had no information and no official verification that anything had been lost, thus were filled with conflicting thoughts and feelings. This ambiguity aptly describes the feeling of loss after a premature birth. The parents have a live baby, thus there is no proof that anything was lost. Furthermore, society expects joy at the birth of a child, so the loss that parents of a newborn premature baby feel is confusing. The final trimester of a pregnancy is a time for the mother to prepare physically and psychologically for the birth. Since prematurity interrupts the natural order of a pregnancy with little to no warning, parents are often in shock and confused about their role asking: “Am I really a mother?” “If my child is in the hospital, how do I act as a parent?”
Survey Method
A total of 74 questionnaires were sent to potential interviewees and 48 (65%) of them responded. The surveys represented the experiences of parents of 56 preemies because eight of the parents had more than one preemie or had multiple births. In fact, within the responses there were two sets of triplets, seven sets of twins, and four women who have had more than one preemie. The gestational age of the preemies ranged from 23 to 34 weeks, with the average age being 28 weeks. The current age of the preemie ranged from 5 weeks to 16 years.
Results
Reading the parents’ narratives of the birth of their preemies, it became increasingly clear that they were attempting to manage an “ambiguous loss”. The respondents were undergoing various emotions of grief because they were mourning the loss of a full-term pregnancy. The participants were shocked, saddened, and angered that their child was suffering from a serious medical condition and may die. However, they were unable to experience the emotions of grief to their full extent because their baby was alive. The participants did not know how to communicate and accept their grief because they were to be celebrating their child’s birth. This “ambiguous loss” resulted in an overarching “joy-grief” contradiction.
The Joy-Grief Contradiction
As numerous participants explained, no one could truly understand what they were experiencing because of the complexity of being torn between mourning the loss of “normal” birth and celebrating a new life being brought into the world. Although the possibility of death and future health issues were present in the participants’ minds, they were unable to experience grief in its entirety because their child was alive. The parents did not know how to feel their grief or if they should even be allowed to grieve because they were suppose to be experiencing the joy of their newborn baby. One parent described the difficulty of enabling herself to grieve even two and a half years after the birth of her preemie. “My healing process has only recently begun…I couldn’t understand why I felt such grief and didn’t feel that I had the right to grieve as my son is alive and doing relatively well”.
This joy and grief tension was often complicated by extended family
members’ confusion over the same feelings. “Family members were supportive,”
Nancy explained, “but did not treat me like a ‘real’ new mom. While
I did receive flowers etc., and many people visited, I felt it was because
of illness and not because of joy at a new life. I just wanted to be
treated like any other new mom”. While many parents wanted to be treated
like any other mother or father, it was difficult for family members
to know how to communicate their concern to the new parents.
Challenges to resolving ambiguous loss
An ambiguous loss offers a challenging context given that what is being grieved is often unclear or unevidenced. This uncertainty of loss “makes ambiguous loss the most distressful of all losses, leading to symptoms that are not only painful but often missed or misdiagnosed” (Boss, 1999, p.6). People hunger for certainty, so perceiving a loss when a premature baby is alive makes parents “more prone to depression, anxiety, and relationship conflicts” (Boss, 1999, p.7). Boss explains five challenges to resolving the grief of ambiguous loss.
1. Because loss is confusing and people do not know how to make sense of the situation, they cannot problem solve. Preemie parents have difficulty identifying a problem because of the certainty of knowing their baby is alive, yet the uncertainty of the health and future of the child. The parents cannot immediately rationalize why they are grieving.
2. The uncertainty experienced prevents people from adjusting by reorganizing roles and rules. Preemie parents were unable to assume the expected role of parent to a newborn after the premature birth. The uncertainty and corresponding lack of attachment to their preemie, because of the NICU technology, complicated family roles and communication. How does one act if not as a joyful new parent? How do family members appropriately communicate with the preemie parents?
3. A third challenge Boss (1999) poses is that people who are experiencing ambiguous loss are denied symbolic rituals, such as funerals, that ordinarily support a loss. When a new baby is born, parents are typically showered with cards, congratulations, visits from family and friends and a baby shower. The joy-grief dialectic complicates communication with family and friends. Family and friends do not know whether to react to the joy or grief involved.
4. Boss’s fourth notion is that, the “absurdity of ambiguous loss reminds people that life is not always rational and just; consequently, those who witness it tend to withdraw rather than give neighborly support, as they would do in the case of a death in the family” (Boss, 1999, p.8). This explains why friends and family react in sometimes “inappropriate” ways.
5. Finally, since the loss is ambiguous, it continues and the relentless uncertainty makes people physically and emotionally exhausted. As Boss (1999) contends, people cannot start the grieving process because the loss really is not one; preemie parents both celebrate the birth and grieve the loss of a full-term pregnancy, not a “real” loss of a child., for the grieving is experiencing an unrecognized, internal loss that is difficult to communicate. This strain manifests itself in spousal and extended family communication. The mothers and fathers in this study grieved differently. According to the literature on grief, women want to talk more about their loss than men and seek out others more for support (Bohannon, 1990; Carroll & Schaefer, 1993). However, the willingness to openly discuss one’s feelings and work as a “team” helped the parents manage the tensions they faced. Bowlby (1980) also argues that successful resolution of grief depends on the strength of the parental relationship. Parents in the present study who mourned together and communicated it similarly found comfort and support in each other. Research suggests that parents not receiving support and comfort feel they have lost their spouse or that their spouse is the least helpful in coping with the loss (Peppers & Knapp, 1980).
Conclusions
Regardless of the gender of the parent, few people can deal with persistent ambiguity for long because the stress is overwhelming. Ambiguous loss is devastating and can have lasting traumatic effects (Boss, 1999). But, with effective communication, support, and resilience people can use the experience to learn how to live in difficult circumstances throughout life, balancing the ability to grieve what was lost with the recognition of what is still possible. As Boss (1999) states, “Ambiguity can make people less dependent on stability and more comfortable with spontaneity and change.... With ambiguous loss, the task is to let go, to risk moving forward, even when we do not know exactly where we are going” (p. 135).
References
- Bohannon, J.R. (1990). Grief responses of spouses following the death of a child: A longitudinal study. Omega: Journal of Death and Dying, 22, 109-121.
- Bonanno, G.A. (2001). New direction in bereavement research and theory. American Behavioral Scientist, 44, 718-726.
- Boss, P. (1999). Ambiguous Loss. Cambridge, Massachusetts: Harvard University Press.
- Bowlby, J. (1980). Attachment and loss (Vol. III). New York: Basic Books.
- Carroll, R. & Schaefer, S. (1993). Similarities and differences in spouses coping with SIDS. Omega: Journal of Death and Dying, 21, 273-284.
- Center for Disease Control. www.cdc.gov
- Marble, M. (1996). “ Options on how to prevent premature childbirth controversial.” Women’s Health Weekly. Issue N, p. 10-11.
- Peppers, L.G. and Knapp, J. (1980). Motherhood and Mourning. New York: Praeger.