Pregnancy and birth are usually a time of happiness and celebration. The death of a pregnant woman or her newborn is an unexpected, tragic event that profoundly affects the lives of her family, friends, healthcare providers, and the community.

It is important to develop and implement a comprehensive, individualized plan of care incorporating the physical, emotional, cultural, and spiritual aspects of care in collaboration with other healthcare team members. Figure 21.1 is a conceptual model for grief care.

Perinatal losses are not an uncommon event. According to Callister,¹ around 7 million perinatal losses occur throughout the world. In the United States, the perinatal mortality rate in 2011 was 6.26 per 1,000 births.² It is difficult to obtain an accurate rate for perinatal losses due to various definitions of what constitutes a perinatal loss. The American Academy of Pediatrics (AAP) states three recognized definitions³:

It should be noted that these definitions do not include early losses (less than 20 weeks’ gestation), so it can be presumed that the perinatal mortality rate is much higher than what is reported. These data highlight the importance for medical staff to be educated and trained on how to care
for a woman and her family experiencing a loss; there is a high likelihood that medical staff will encounter these situations many times throughout their careers.

AWHONN uses the classification system in Table 21.1 to describe perinatal losses and includes early losses.⁴

Miscarriages and stillbirths precipitate bereavement, as they are often unexpected and sudden. The cause may never be known, but the loss is typically never forgotten by the woman or her family.⁵ Most families that choose the palliative care option for their fetus or infant with a known life-limiting condition usually experience either a stillbirth or neonatal death.

Another type of perinatal loss is a medical interruption of a pregnancy (sometimes referred to as elective abortion). There may be many reasons why a woman chooses to end a pregnancy, one of which is because the fetus has a congenital abnormality that may be incompatible with life or result in a poor quality of life (i.e., a life-limiting condition). When the diagnosis is made in utero, many women cannot imagine continuing the pregnancy. They are afraid of becoming so attached to the baby only to have the newborn not survive for very long after birth. It is just as important to support these women and their families as research has found that those who terminated their pregnancies experienced higher levels of trauma. However, almost 88% of those women stated they would make the same decision again as they felt that it was easier than delivering a malformed baby.⁶ Many times it is assumed that because a woman is choosing to terminate her pregnancy, she must not love or want her baby. For the majority of women this is untrue. Unfortunately, because of this assumption, these women do not receive the same type of support from the medical staff and/or family and friends. They are not offered keepsakes or educational materials about grief. This can be devastating for these women who are already at high risk for depression and other negative effects. Recommendations for the healthcare providers involved in the care of women during and after termination of pregnancy for fetal anomaly (TOPFA) include the following^6,7,8:

The delivery of a miscarriage, stillborn, or a terminally ill infant is an event that produces enormous stress for the new mother and family. Women may remember details of their loss as well as the care they received during the loss throughout their lives.⁹ The intrapartum and perinatal nurses must function as a care provider, support person during the grief process, patient advocate, and coordinator of care.⁷ The nurse should assess the woman’s needs and proceed with developing a patient-centered plan of care as soon as it is known that the demise has occurred.¹⁰ Genuine listening and presence of the nurse with the woman, her partner, and family cannot be underestimated. Many hospitals have developed bereavement programs to assist parents with the grief process through coordination of services and ongoing sensitive care. Bereavement checklists can help in provision of consistent, comprehensive, and complete care.

Immediately after the birth of a demised infant, both parents are in the shock phase of grief. Additionally, the woman is concerned with her own personal health and safety, as after any
birth. Questions relating to the reason for the death arise and are often difficult or impossible to answer. The nurse’s role during this initial phase is both to provide physical care for the woman and to assist with the process of grief. There are many manifestations of grief that may present in the woman, partner, and family, but it is important to remember there is no “usual” or “normal” way to express grief. Each woman, partner, and family may demonstrate different feelings and behaviors. Examples of manifestations across psychosocial, physical, cognitive, and behavioral domains include:

To begin to grieve for the infant lost, it is necessary for the parents to create memories of the child. Parents should be offered adequate time to hold and touch the newborn in a private setting. The family may wish to view the infant multiple times. The nurse can wrap the infant in a blanket and remain with the family, if needed or requested, to answer questions. It is common for parents to remark on the gender of the child, the perfection of hands or feet, and family resemblance—in effect, to claim the child as their own. Naming the child is another activity that assists parents with this process of claiming the child who has died.

The nurse has ongoing responsibilities in coordinating care for the woman and her family. Decisions about location of the postpartum stay, notification of hospital staff who will be in contact with the woman, and notification of support services (e.g., social services, clergy, grief counselors) are tasks for the nurse. The woman may not wish to stay in the obstetric setting and prefer to recover during her postpartum stay in another area, away from the newborn nursery. It is important for all care providers to be aware of the family’s loss. The hospital should devise a system for alerting other healthcare providers and staff that a loss has occurred, hopefully prevent awkward and painful encounters. The nurse must also facilitate and allow ample time for decisions to be made about disposition of the infant’s remains.

Finally, perinatal nurses must consider their own feelings related to the loss. Just as parents search for the answers to why the loss occurred, so do care providers. It is also common for nurses to avoid the family because of the uncertainty of how to help or feelings that medical care has failed this family. The belief that every pregnancy should or will have the outcome of a healthy infant is common, but not realistic. Nurses need to examine their role in good outcomes, while accepting the fact that poor outcomes cannot always be prevented. A hospital with a carefully considered plan for assisting families with perinatal loss also considers these needs of the care providers. Strategies for supporting care providers are presented later in this module.

Perhaps, one of the most difficult aspects of caring for a family experiencing a perinatal loss is not knowing what to say. Many times people are afraid of saying the wrong thing; therefore, it leads to silence. Silence can be detrimental to the family, as they may perceive that silence means their nurse either does not recognize their loss or does not care about it.¹¹ While silence is harmful, so is saying something wrong. The attitude of the nursing staff can directly affect how a family copes with the loss, which has long-term implications. Therefore, it is important for nurses to receive education and training in communication during bereavement situations, which lead to more confidence and increased levels of comfort in these situations. What women and their family need the most is for the nurse to have a positive perspective and to reassurance the patient that she is not at fault.⁵

Table 21.2 provides guidance for talking to women and families experiencing a perinatal loss.

NOTE: Families often ask nurses for advice and help in decision-making. It is important for the nurse to refrain from giving personal advice, but appropriate to speak about what other families have found helpful.