Iwill never forget that first Cesarean Birth Support Group meeting I attended in Denver, Colorado. It was the first week of March 1982. I brought my 6-week-old son with me. The group met once a month. The agenda alternated, 1 month we met in a member's home and shared our birth stories; on the alternate months we met in a church basement to learn about some aspects of childbearing and new parenting from an invited speaker. My first meeting changed my life. The speaker was an obstetrician; his topic was early pregnancy loss. As a nurse and doctoral student, I listened intently as he described the diagnosis, treatment, prognosis, and incidence of spontaneous abortion. When he mentioned that 15% to 20% of all pregnancies ended in perinatal loss, I thought it odd that I never knew that.
When he sat down and the women in the room began to share stories of what it was like to miscarry their much-wanted pregnancies, 3 powerful thoughts occurred to me. (1) As a mother, I looked at my son and thought, "My God, what if I had lost you?" (2) As a nurse, I recalled the 1980's nursing social policy statement that claimed that nurses focused on the diagnosis and treatment of human responses to actual and potential health problems. That evening, the physician spoke about the actual and potential health problem of spontaneously aborting. The women were living with the human response to miscarrying their beloved babies. The differences in the language used by the speakers that evening graphically illustrated the 2 different perspectives when pregnancy ends unexpectedly and before the point of fetal viability. (3) The third, and life-changing thought, was "Whoa, I think I have a dissertation topic."
In the early 80s, the state of the science was not too impressive. I would safely guess that it was one of the fastest lit reviews a dissertation student ever produced. There were some speculative studies about the causal links between women's psyche and repeated miscarriages, some anecdotal writings by physicians about their clinical observations that mothers grieved for years after miscarriage, and some descriptive work trying to link demographic and gestational data to perinatal grief responses. Of the small amount of empirical work available at the time, most studies recruited parents whose loss occurred after 20 weeks of gestation. The rationale was that since attachment was believed to occur at the point of fetal movement, studies of grief were deemed not relevant for earlier gestational losses.
A lot has happened since that meeting. My son is soon to turn 29 years old. Today, scientists around the world are examining differences in responses to childbearing loss on the basis of gender, culture, sexual orientation, demographic variables, obstetrical histories, and biomarkers. Scholars have examined perinatal loss from the interpretive, empirical, and critical social theory perspectives. We have changed clinical approaches from silence (whisking away any physical reminders of the lost infant and refraining from mentioning it ever again in front of the mother) to transparency (creating sacred spaces for the untimely death to be mourned while gestation, birth, and brief lives are memorialized).
As I reflect on what is known, I also think about what is not known, or at least not known well enough. We do not yet have data-driven clinical guidelines that are capable of driving practice that effectively serves the immediate and long-term needs of families. We do not understand the financial and emotional costs of failing to address families' responses to perinatal loss. We lack policy that drives the reimbursable care families deserve after perinatal loss.
As the Journal of Perinatal & Neonatal Nursing celebrates its 25th year in print, and as this issue sheds even more light on the plight and care needs of families whose lives are forever changed by pregnancy loss, it is good to pause and acknowledge how far we have come. It is even better to deepen the dialogue and commit to making the changes that ensure that families and providers receive the comfort deserved and support needed to survive the suffering incurred when witnessing lives ended as they begin.
Kristen M. Swanson, PhD, RN, FAAN
Dean and Alumni Distinguished Professor
School of Nursing
University of North Carolina at Chapel Hill