Perinatal Loss

Defining Loss, Bereavement, Grief, and Mourning

Caring Theory to Guide Nursing Practice When Pregnancy Ends in Loss

Nursing Care for the Mother Who Lost a Baby

Photo By: Brocken Inaglory, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=17749061

Not all newborns are born healthy. Some have conditions identified prenatally that will not be compatable with life. Some will become ill after birth and not survive. Some will die in utero. Nurses are instrumental to caring for, comforting, and assisting in grieving with mothers who are dealing with the loss of a child.

Defining Loss, Bereavement, Grief, and Mourning

Losses are any experiences in which a valued person or object can no longer be seen, touched, heard, known, or otherwise experienced.

Bereavement is a state of being without a valued other, especially by death.

Grief is a profound feeling of sadness and despair accompanying loss. It is recognized as a process through which bereaved persons work to make meaning of and come to terms with their loss.

Here are four attributes of grief foundational to contemporary understanding of this complex issue:

Grief is dynamic and involves complex emotions, thoughts, and behaviors that shift and change.
Grief is a process that is enduring and has no time limit.
Grief is highly individualized and manifests differently from person to person.
Grief is pervasive involving psychological, social, physical, cognitive, behavioral, and affective responses and can affect every aspect of a person’s life.

Mourning involves culturally mandated traditions and rituals in the period after a death occurs.

Defining Perinatal Losses

Perinatal loss: Any loss occurring during the time surrounding pregnancy and birth; however, women can have losses associated with reproduction, such as infertility, miscarriage, intrauterine fetal death, stillbirth, and deaths of live-born infants soon after birth.

Types of Perinatal Losses

A miscarriage is any in utero death prior to 20 weeks of gestation.

Grief from miscarriage is often suffered in isolation because other people in a woman’s family and social network may not even know about the pregnancy and subsequent loss.
Grief after a miscarriage is sometimes disenfranchised because even if family and friends know about the pregnancy, their understanding of the meaning of the pregnancy or its importance to the woman may be underestimated or unappreciated.

Intrauterine Fetal Demise (IUFD) is any death prior to birth after 20 weeks of gestation.

Subdivided as early (20 to 27 weeks of gestation) or late (≥28 weeks of gestation)
A fetal death occurring at 20 weeks or later is a stillbirth.
Death of a live-born infant fewer than 7 days old is an early neonatal death.
Death occurring between 7 and 28 days is a late neonatal death.
Any live birth of a child who dies within the first year is defined as an infant death.

Serious fetal diagnosis, which is the diagnosis of a serious fetal defect, is a more recently described form of perinatal loss. When a fetus is diagnosed with a severe defect, women then are confronted with the very difficult choice between continuing or terminating midpregnancy. Factors contributing to the decision include:

Severity of the fetal defect
Certainty of both the diagnosis and prognosis
Prospect of their expected child’s suffering

Serious Fetal Diagnosis Considerations

Women confronted with the diagnosis of a severe congenital fetal defect often choose pregnancy termination, sometimes referred to as termination of pregnancy due to anomaly (TOPFA), especially if the prognosis for the fetus or newborn is dire or clearly fatal.

Multifetal pregnancy reduction (MFPR) is recommended reduce the number of developing embryos to a number that can be safely carried to near term.

Cesarean surgery and preterm birth can also be considered types of perinatal loss.

Nurses have a significant influence on how women, their partners, and families experience and cope with perinatal loss. Perinatal palliative care (PPC) is a formalized interprofessional care model specifically aimed at intervening when pregnancy is expected to end in stillbirth or neonatal death.

Useful Grief Theories in Perinatal Settings

Ambiguous loss characterizes some types of perinatal loss, such as loss of a fetus, that has never been physically seen or held by his or her parents and is unknown to others.

Disenfranchised grief occurs when a person’s responses to loss are not openly acknowledged and mourned publicly, thereby limiting social support, which can lead to a sense of isolation in bereaved persons.

Two established theories of grief and bereavement—continuing bonds theory and dual process model—expand understanding of the complexities of grief and are helpful to perinatal nurses.

The continuing bonds theory proposes that the bonds of attachment forged in life continue into the survivors’ future.
Full resolution of grief is not detachment, but the incorporation of the loved one who has died into the bereaved person’s own life.
The dual process model emphasizes the processes and strategies individuals use to manage grief and bereavement, as opposed to stages of grief.

Caring Theory to Guide Nursing Practice When Pregnancy Ends in Loss

Swanson’s caring theory has five concepts describing key elements in the nurse-client relationship: knowing, being with, doing for, enabling, and maintaining belief.

Knowing: Nurse must assess the woman, partner, and family (as applicable and appropriate) to understand how they perceive the loss and what the loss means to them.
Being with: Caring presence of the nurse, who as a function of professional caring conveys acceptance of the various feelings and perceptions of each family member.
Doing for: Those activities and interventions that the nurse performs on behalf of the woman and her family that provide physical care, comfort, and safety.
Enabling: Nurse offers the woman and her family options for care.
Maintaining belief: Encouraging the woman and her family to believe in their ability to survive their loss.

Miles's Model of Parental Grief

Miles’s Model of Parental Grief Responses hypothesizes that parental grief responses occur in three overlapping phases:

Acute distress and shock
Intense grief
Reorganization

Acute Distress

Acute distress is characterized by shock and numbness. Parents experience this as:

A sense of unreality
A loss of innocence
Powerlessness
Being devastated
A feeling like they are in a bad dream, a fog, or trance
Having a sense of disbelief
Profound sadness accompanied by intense outbursts of emotion and crying

The response of partners to reproductive losses tends to vary more than those of pregnant women and can depend on the level of identification with the pregnancy.

Partners may hide their feelings from each other to protect the other.
Men are distressed by the grief of their partner and often see themselves as the partner’s main support.
Men’s emotional responses may not be as intense or as long-lasting as their female partners’ responses.
Men may be more likely to engage in behaviors such as alcohol consumption in response to the loss.

Intense Grief

The intense grief phase displaces the acute grief phase and often takes longer to move through. The phase is marked by:

Preoccupation with the deceased expected baby is not uncommon
Guilt
Anger
Resentment
Bitterness
Irritability
Deep sadness

Intense grief can also lead to disorganization, where individuals can experience a variety of changes:

Inability to concentrate
Confused thought processes
Difficulty in problem solving
Poor decision making
Fatigue
Headaches
Dizziness
Musculoskeletal aches and pains

Reorganization

Grief is very personal, ongoing, and difficult to endure. Eventually, the aggrieved may reach the reorganization stage:

The griever goes on a long and intense search for meaning.
Time helps ease the painful feelings of grief.
Overwhelming feelings become less painful over time.

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Nursing Care for the Mother Who Lost a Baby

Nursing care of women and their partners experiencing a perinatal loss begins the first time they are faced with the potential loss of the pregnancy or death of the fetus or infant. Key areas to address include the following:

The nature of the parental attachment to the pregnancy and developing fetus or infant, the meaning of the pregnancy and infant to the parent, and the related losses they are experiencing
Complex family and sociocultural influences on the meaning of the loss
The circumstances surrounding the loss, including the time to prepare for the loss and the parents’ level of understanding about the cause of the loss or death and any related unresolved issues
The immediate responses of the woman and partner to the loss, whether their responses are similar or different, and if their responses are consistent with their past experiences and sociocultural contexts
The social support network of the woman and her partner (e.g., extended family, friends, coworkers, church) and the extent to which it has been engaged
Nursing care for women, partners, and families grieving the end of a pregnancy and death of their expected child or newborn is complex and should be comprehensive.

When a Loss Is Diagnosed: Helping the Woman and Her Family in the Aftermath

Under a great deal of stress, people are likely to have limited ability to take in anything but the most basic information and sometimes appear to “shut down.”

Simple, unambiguous, and consistent language is crucial.
Although the use of words like “death,” “died,” and “dying” are difficult in any setting, euphemisms or other veiled language can be misunderstood by women and their families under stress.
The nurse’s presence is crucial in hearing what other providers have told the woman and family and in clarifying any misunderstandings.

Helping Parents Hold Their Fetus or Infant

Many women and partners find the experience of holding their stillborn or dying infant meaningful. In preparation for holding the baby, parents appreciate explanations about what to expect. The typical preparation includes:

Covering the head with a small cap and clothing the baby
Applying lotion to the skin
Combing the hair
Placing identification bracelets on the arm and leg
Dressing the baby in a diaper and special outfit
Sprinkling powder in the baby’s blanket
Wrapping the baby in a soft blanket

Parents need to be given time alone with their baby. Mothers and families should have unrestricted access to the baby’s body, which allows them to “process the traumatic events surrounding their baby’s death” in addition to allowing for a “more gradual goodbye, both of which are productive components of healthy grieving.”

Helping Parents with Decisions Regarding Autopsies, Organ Donation, and Disposition of the Body

To help with decision-making, nurses provide time, privacy, and support as parents consider their options. At a time when they are experiencing the great distress of a perinatal loss, parents have many decisions to make:

Whether to do an autopsy
Whether to donate organs
Whether to perform spiritual rituals
The disposition of the body:
- Respectful disposition
- Burial or cremation
- Memorial or funeral service

Helping the Bereaved Parents Acknowledge and Express Their Feelings

One of the most important goals of the nurse is to validate the experience and feelings of the parents by encouraging them to tell their stories and listening with care. The nurse should have a presence of self and the willingness to be alongside parents.

Family Aspects of Grief

Nurses who care for grieving parents also often care for the extended family, including siblings of the expected baby and the parents of the bereaved woman and her partner.

Helping the Bereaved Family Understand Differing Responses to Loss

Bereaved parents may need help in understanding their responses to their loss and in realizing that they are not alone in these painful responses. Nurses can help parents prepare for:

Emptiness
Loneliness
Yearning
Helplessness that can lead to anger, guilt, and fear
Cognitive processing problems
Disorganization
Difficulty making decisions
Sadness and depression

The nurse can reassure and educate bereaved parents about the grief process, including the physical, social, and emotional responses of individuals and families. Written materials about parental grief that are sensitive and brief can be very helpful.

People cope with grief in positive and negative ways. Nurses can reinforce positive coping efforts and attempt to prevent negative coping.

Meeting the Physical Needs of the Bereaved Mother in the Postpartum Period

The mother should have the opportunity to decide if she wants to remain in the maternity unit or to move to another unit. The physical needs of a bereaved mother are the same as those of any woman who has given birth.

Assisting the Bereaved Parents in Communicating and Establishing Support from Family Members

Sensitive care of bereaved parents may involve their own parents. Nursing staff should allow a couple’s children, parents, extended family members, and friends to be involved in the rituals surrounding the death, such as seeing and holding the baby.

Creating Memorabilia for Parents to Take Home

Parents may want tangible mementos of their baby, in which case the nurse can provide:

Information about the baby’s weight, length, and head circumference
Footprints and handprints that can be taken and placed with the other information on a special card or in a memory or baby book
Articles that were in contact with or used in caring for the baby
Pictures (often the most important memento)

Addressing Cultural and Spiritual Needs of Parents

Parents who experience perinatal loss can be from widely diverse cultural, ethnic, and spiritual groups. The nurse must be sensitive to the responses and needs of parents from various cultural backgrounds and religious groups, which may influence the customs following death.

Providing Sensitive Discharge and Follow-Up Care

The grief of the mother and her family does not end with discharge; rather it begins anew once they return home, attend the funeral, and continue their lives without a new baby. A grief conference can be planned when parents return for an appointment with their physician or midwife, nurses, and other members of the health care team. Parents may also benefit from a perinatal or parent grief support group.

Providing Postmortem Care

Preparing the baby’s body and transporting it to the morgue depends on the procedures and protocols developed by individual hospitals.

Prenatal Diagnoses with Poor Prognoses

Foreknowledge of a congenital diagnosis in conjunction with the possibility of suffering by the baby can intensify parental grief. The decision to terminate a pregnancy is difficult and can lead to feelings such as guilt, despair, sadness, depression, and anger. A woman who decides to continue the pregnancy needs intensive support from the nursing staff. The time of labor and birth can be particularly difficult.

Death of a Fetus in a Multiple Gestation

Death of a fetus in a multifetal gestation during pregnancy, labor, birth, or after birth requires the mother and partner to both parent their live-born infant and grieve their dead or dying one at the same time. Such a loss imposes a confusing and ambivalent transition into parenthood.

Adolescent Grief

Adolescent pregnancy is often unplanned and in itself poses a developmental and situational crisis. Adolescents will process their grief differently from mature adults because of their lack of cognitive and emotional maturity, although this varies. The loss of a pregnancy for adolescents puts them at risk for both mental health problems, including depression, and becoming pregnant again quickly. In caring for a bereaved adolescent, the nurse should:

Develop a trusting relationship with her
Acknowledge the significance of the loss, regardless of the mother’s age
Provide anticipatory guidance, nonjudgmental support and information to meet the adolescent at the point of her need, just as in the care of older women experiencing a perinatal loss

Complicated Grief

Complicated grief is a collection of intense grief reactions that are prolonged and are characterized by sustained intense longing and persistent sadness that interferes with daily life. It can result when there is sudden or traumatic loss, as occurs with stillbirth or termination of pregnancy due to lethal fetal anomalies. Complicated grief differs from what is considered normal grief in its duration and the degree to which behavior and emotional state are affected. A major risk factor for complicated grief is poor social support. Symptoms of complicated grief include:

Prolonged and sustained longing and sadness
Inability to trust others
Anger
Difficulty moving on with one’s life, feeling that life is empty or meaningless
Hopelessness
Loneliness
Intense and continued guilt
Depression or anxiety interfering with daily functioning

Complicated grief can lead to:

Abuse of drugs (including prescription medications) or alcohol
Severe relationship difficulties
High levels of depressive symptoms
Low self-esteem
Feelings of inadequacy
Suicidal thoughts or threats years after the loss
Post-traumatic stress disorder

Persons showing signs of complicated grief or post-traumatic stress should be referred for counseling.

Post-Traumatic Growth

Nurse researchers have noted that women and their partners can experience personal growth in the aftermath of a perinatal loss. Post-traumatic growth (PTG) is characterized by development along one or more of five dimensions:

Personal strength
Appreciation for life
Spirituality
Relating to others
New possibilities

Growth can coexist with grief.

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Perinatal Hospice

Perinatal Hospice begins at the time of prenatal diagnosis of a terminal condition for the fetus and the family has chosen to continue to pregnancy. The goal is to ensure terminally ill babies are comfortable during their brief lives and provide comfort to the family. A perinatal hospice team consists of the obstetrician or midwife, a perinatologist, a neonatologist, a social worker, clergy, genetic counsellors, a therapist, and nurses. Every family's story is unique and a specialized plan of care is developed using all of these individuals; this would include the desires if the baby is born alive or desceased. Paliative care plans of care for a newborn would include bonding with the family, feeding, pain control, and organ donation.