The Lived Experience of Families who are Told Their Child will Die at or Shortly after Birth
Purpose: Families are increasingly informed of lethal prenatal diagnoses prior to birth. Thus, this phenomenological investigation set out to discover a fuller understanding of the lived experience of families who are told their child will die at or shortly after birth and their journey through the remainder of the pregnancy, loss, and grief.
Methods: Based in phenomenology, structured interviews were conducted with five families and analyzed using the method described in Giorgi (as described in Omery, 1983).
Results: Five themes resonate throughout the data: (1) families perceived traveling an uncharted path, (2) the birth plan was essential, (3) the grief from the loss of the “normal” pregnancy, birth, and parenting was overwhelming, (4) interactions with others, particularly health care providers, could “make or break” the experience, and (5) families felt at peace when they were able to successfully reframe life.
Discussion: Receiving a lethal prenatal diagnosis deeply impacts the core of being for families and causes grief in many forms. Health care professionals can directly and intensely impact families’ experiences.
Technological advancement has led to the increased ability to identify lethal fetal conditions during the prenatal period, yet, treatment or cure measures have not increased at the same rate (Hoeldtke & Calhoun 2001; Pearce, 1999; Kuebelbeck, 2005). This gap promotes an intense and often painful decision-making process for parents (Pearce, 1999; Sandelowski & Barroso, 2005; Chaplin, Schweitzer, & Perkoulidis, 2005). Support through end-of-life decision-making and care has been a major role of hospice nursing. However, the concept of perinatal hospice is relatively new (Calhoun, Hoeldtke, Hinson & Judge, 1997; Calhoun & Hoeldtke, 2000). In perinatal hospice, nurses and other support services assist in the journey of pregnancy, loss, and grief, ideally beginning at the discovery of the lethal fetal defect. These services have been perceived as beneficial, yet access to such services is limited, as few formal perinatal hospice programs are in existence nationwide (Calhoun & Hoeldtke, 2000; Sumner, 2001). In addition, there is a lack of information available to illustrate the experience of families who are given a lethal prenatal diagnosis (Sandelowski & Barroso, 2005). Therefore, this phenomenological investigation set out to gain a fuller understanding of the lived experience of families who are told their child will die at or shortly after birth and their journey through the remainder of the pregnancy, birth, and loss.
Phenomenologic philosophy and research methods are based within the lived experience as described by those most intimately involved in the phenomena of interest (VanManen, 1990). A rich description of the lived experience is obtained in order to better understand the deeper meaning of a specific human experience in the context of the whole human experience (VanManen, 1990). This study was based on intensive interviews with five families who were told at some point in pregnancy that their child would die at or shortly after birth. The participant families were referred to the researcher through one Midwestern hospital-based perinatal hospice program after Institutional Review Board approval. These families responded to the statement: Tell me about your pregnancy, labor, birth, and bereavement experience. In addition, these families were asked to describe powerful events or conversations that changed the way they perceived the pregnancy, labor, birth, and bereavement experience. Clarification and further detail was sought through probing questions. Interviews lasted approximately two hours each and were audio taped and transcribed. The data analysis for this phenomenologic research was based on a process outlined by Giorgi (as described in Omery, 1983), which involved five steps: (1) reading and re-reading the transcriptions in their entirety for a sense of the whole, (2) identifying constituent themes, (3) eliminating and clarifying redundancies, (4) reflecting on the transcriptions and emerging themes, and (5) identifying the essence of the family stories by synthesizing the data. Interpretation of the findings was validated by both researchers.
The families reported a variety of medical reasons for the predicted fetal demise. These included amniotic band syndrome, trisomy 18, spina bifida with mullerian, renal, cervicothoracic somite abnormalities, cerebral palsy, and hypoplastic left heart syndrome. All of the families chose to continue the pregnancy despite the lethal diagnosis, and interestingly, at the time of the interviews, two of the children died at or shortly after birth and three were still living (current ages were 4 years, 14 months and 12 months).
Five major themes emerged from the interview data: (1) families consistently perceived traveling a path unrecognized by others, (2) the birth plan was essential in planning for the baby’s life, (3) the grief from the loss of the “normal” pregnancy, birth, and parenting drove to the core of their being, (4) interactions with others, particularly health care providers, were recalled intensely and would “make or break” the experience, and (5) families felt at peace when they were able to successfully reframe life with reverence to the intense loss.
The path less traveled. Receiving a lethal prenatal diagnosis left these families feeling alone at the time of diagnosis and for the remainder of their pregnancy. The theme of traveling an uncharted path was illustrated by one mother who indicated, “It was disheartening because I was thinking we cannot be the first people to go through with this or the only people to go through this. There had to be something out there. But there really wasn’t.” In addition, most families felt alienated from the health care system in opting to continue the pregnancy despite the lethal diagnosis. In particular, one father expressed:
You dealt with the doctors, scratching their heads at you, like, why do this to yourself. . . . We almost had to literally put our foot down, and say ‘listen doc this is this is the way we’re going, so lets just get past that.’
Most families intensely researched on their own, sought second opinions, utilized the Internet, and talked with family and close friends. Some, also, sought spiritual guidance. All participants stressed the scarceness of resources to guide parents in their situation. For example, one mother described leaving the clinic with:
no literature, no real explanation why, no hope at all. So, I got home and. . . first thing, I got on the phone, and said that we need prayers to everybody. Then, I got on the Internet. I just, I didn’t know what I was looking for, they didn’t even give it a name.
The birth plan. A vital component in planning for the baby’s life was the birth plan, a written description that describes the family’s wishes for the birth and communicates them to health care professionals. Families found that the birth plan helped them to prepare for both ends of life’s spectrum, both the celebration of birth and the grief of death. One parent said:
Just having that to plan, it just helps you plan, making it a party, a celebration, a really dignified good-bye, hello and good-bye; then when the time comes you are really celebrating. . . . If you didn’t expect that and you had a sick child, who would be in the recovery room smiling and singing happy birthday?
The grief. The grief of the loss of a “normal” pregnancy, birth, and parenting drove to the core of each parent’s being. One father described the joy and excitement of pregnancy and then expressed, “Just, your whole world is blown up, you know, you have this terrible news, and you are experiencing the grief of a death, absolutely of a healthy child”.
Instead of preparing a nursery or buying baby things, most were looking at preparing for a death. A father’s eyes welled with tears when he recalled:
But buying a coffin, that to me was the hardest thing. You know, cause you are supposed to be out buying baby seats and cribs and we went to Target and we bought a sleeper, for him to be buried in, and blankets, you know, cover him up with. . . . but all of this stuff that is supposed to be so joyous, you know, buying baby clothes, buying all these fun things, it was gut wrenching.
The impact of others. Interactions with others, particularly health care providers, were recalled intensely and would “make or break” the experience. One mother describes a positive experience:
So we went in and the nurse met us at the desk, “I am yours for the day. You’re my only patient, I am here for you.” She was unbelievable. She said, “I am gonna cry,” and I said, “That is just fine, we’ll all be crying.” You know, she had that personal touch, she really cared.
Another mother illustrated a negative experience:
Some people would question, why are you doing this? I got that quite a bit. Why are you carrying this baby knowing it’s going to die? Why don’t you just get over with it? You can always have more children, you can, do over. . . . Not all pregnancies are like this, you had bad luck, try, try again. I would prefer someone just be quiet and listen as apposed to try to figure out what to say to make me feel better, like “op, it’s a mulligan, tee off again.”
Reframing life. Families felt at peace when they were able to successfully reframe life with reverence to the intense loss. One mother broke into tears when she described this theme:
My whole thing with having Tom was that I felt terrible as the mom, I was keeping him alive. And there, you are, you’re what’s separating him from death. I just thought I am going to go nuts, how do you push a child out knowing you are pushing them out to die? I mean you can’t unify those two thoughts; it just seems so foreign, and my aunt said, ‘you are not delivering him to his death you’re delivering him to his destiny’ and that’s how I kinda had to look at it, that it was not my journey, it was his.
Families searched and continue to search for the meaning of their experience and the impact of faith. Ultimately, each family saw the prenatal diagnosis as a blessing, as it allowed them to “enjoy the time we had.”
Qualitative research is often viewed as limited by a small sample size and lack of generalizability. The data is based purely on family perceptions and is not validated by confirming the accuracy of such stories with others.
The study findings contribute to the current understanding of the grief, intensity and loneliness that accompanies receiving a lethal prenatal diagnosis (Chaplin, Schweitzer, & Perkoulidis, 2005; Sandelowski & Barroso, 2005). Each family’s journey with grief was unique yet advocacy and support remain critical components to the role of the professional nurse (Chaplin, Schweitzer, & Perkoulidis, 2005; Sandelowski & Barroso, 2005). For these families, that support was most appreciated in the form of birth planning and positive interactions with health care providers. These families were active in a perinatal hospice program and these services were positively received (Hoeldtke & Calhoun, 2001; Kuebelbeck, 2004; Pearce, 1999; Calhoun, Napolitano, Terry, Bussey, & Hoeldtke, 2003; Sumner, 2001). However, there are few formal perinatal hospice organizations nationwide. Nurses are in an ideal position to advocate for family support in times of grief.
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The authors gratefully acknowledge the families who graciously shared their experiences with us and Jody Chrastek at Children’s Hospitals and Clinics in Minneapolis, Minnesota for her assistance in this project. This study was funded in part by an undergraduate research grant through the College of St. Benedict/St. John’s University.
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