Loss and Grief in the
Childbearing Period
Denise Côté-Arsenault, PhD, RNC,
IBCLC, FNAP
Introduction
• Perinatal loss includes infertility during
the preconception period, fetal death
during pregnancy and infant death in the
first year of life.
• Losing a wished-for child is startling and
unexpected.
• Responses to this loss range from
disappointment to life-changing anguish
(Woods & Woods, 1997).
© 2011 March of Dimes Foundation
Types of Perinatal and Neonatal
Loss
Ectopic pregnancy
Elective abortion
Fetal death
Infertility
Miscarriage
(spontaneous
abortion)
• Neonatal death
•
•
•
•
•
© 2011 March of Dimes Foundation
• Stillbirth
• Sudden infant death
syndrome (SIDS)
• Sudden unexplained
death in infancy
(SUID)
• Therapeutic
abortion
Infertility
• Infertility is the inability to conceive after
at least 1 year of trying.
• In the United States in 2002, about 12
percent (7.3 million) of women age
15 to 44 had difficulty getting pregnant
or carrying a baby to term (Chandra,
Martinez, Mosher, Abma & Jones, 2005).
© 2011 March of Dimes Foundation
Perinatal Mortality
• Perinatal mortality has two accepted
definitions:
o Death at >20 weeks gestation and <28 days of
life
o Death at >28 weeks gestation and <7 days of life
• Perinatal mortality includes ectopic
pregnancy, miscarriage and stillbirth.
© 2011 March of Dimes Foundation
Perinatal Mortality (Continued)
• There are an estimated 1 million fetal
losses each year in the United States; most
occur before20 weeks gestation
(MacDorman et al., 2007).
• Miscarriage rate estimates range from
15 percent to 50 percent of conceptions
(ACOG, 2002; American Pregnancy Association,
2007; Stoppler, n.d.).
• The stillbirth rate is 6.2 per 1,000 births
(ACOG, 2009).
© 2011 March of Dimes Foundation
Infant Mortality
• Infant mortality is the death of an infant
during the first year of life.
• The infant mortality rate in the U.S. has
not declined much since 2000; it hovers at
around 6.68 per1,000 births (Mathews &
MacDorman, 2010).
© 2011 March of Dimes Foundation
Infant Mortality
(Continued)
• Preterm birth continues to be a primary
cause of infant death in the United States.
• More than half a million babies were born
prematurely in the United States in 2007
(Hamilton et al., 2008).
• All preterm infants are at greater risk than
term infants for lifelong health problems,
and their early births take emotional and
financial tolls on their families (Als et al.,
1994; Glaser et al., 2007).
© 2011 March of Dimes Foundation
Infant Mortality
(Continued)
• In 1990, the sudden infant death
syndrome (SIDS) rate was 1.3 per 1,000
births; in 2006, the rate was <.50 per
1,000 births (American Lung Association,
2010).
• Sudden unexpected death in infancy
(SUID) includes SIDS and other causes of
infant deaths such as suffocation.
© 2011 March of Dimes Foundation
History of Pregnancy and Infant
Loss in America
• America’s perspectives on death are
evolving.
• Although losses in pregnancy and birth
were seen as real possibilities in the 18th
and 19th centuries, families still mourned
these losses (Hoffert, 1989).
© 2011 March of Dimes Foundation
History of Pregnancy and Infant
Loss in America (Continued)
• Birth moved from the home to the hospital
in the early 1900s.
• Pain relief efforts left women unaware of
their pain and of actual birth, whether
stillborn or live (Leavitt, 1986).
• The stage was set for hiding death from
women and their families; a shroud of
silence grew around perinatal death.
© 2011 March of Dimes Foundation
History of Pregnancy and Infant
Loss in America (Continued)
• Acknowledgement and integration of loss
into care began slowly, but it has
persevered.
• The need for this approach forms the basis
for training for nurses, bereavement
counselors and research into best-care
practices.
© 2011 March of Dimes Foundation
Attachment Theory
• Bowlby (1969) was the first to identify and
discuss human attachment.
• Klaus and Kennel (1976) describe behaviors
that demonstrate a bond between mother
and baby before birth.
• Peppers and Knapp (1980) show that
attachment begins when planning a
pregnancy.
© 2011 March of Dimes Foundation
Rubin’s Tasks of Pregnancy
• The mother: (Rubin, 1984)
1.
2.
3.
4.
Ensures safe passage for self and baby
Ensures social acceptance of self and baby
Binds-in to the baby
Gives of herself
• Rubin’s framework helps nurses identify
how women are affected when pregnancy
tasks are incomplete.
© 2011 March of Dimes Foundation
Pregnancy as a Rite of Passage
• Each rite of passage has three stages:
1. Separation
2. Transition
3. Incorporation
• A woman separates herself from her old
status when she announces her
pregnancy.
• The transition takes place during the 9
months of pregnancy.
© 2011 March of Dimes Foundation
Swanson’s Theory of Caring
Through inductive analyses, Swanson (1991)
identified five caring processes:
1.
2.
3.
4.
5.
Knowing
Being with
Doing for
Enabling
Maintaining belief
© 2011 March of Dimes Foundation
Prenatal Testing
• Prenatal tests include:
o
o
o
o
o
o
o
Biophysical profile (BPP)
Chorionic villus sampling (CVS)
First trimester screening
Maternal blood screening
Amniocentesis
Ultrasound
Fetal monitoring
© 2011 March of Dimes Foundation
Prenatal Testing (Continued)
• Prenatal tests can have a significant
impact on women and their families; this
impact often is neither acknowledged nor
addressed by health care providers.
• Test results can be shocking. Just having a
test can bring back memories of bad news
in past pregnancies.
© 2011 March of Dimes Foundation
Prenatal Testing (Continued)
• Technological advances in recent decades
have opened the door to assessing genetic
make-up and witnessing fetal development
like never before.
• Families need to understand:
o The purpose of a test
o What it can and cannot tell
o Its risks for mother and baby
© 2011 March of Dimes Foundation
Ultrasound
• It may be during the ultrasound that a
couple learns of their baby’s death; high
anxiety prior to ultrasounds in subsequent
pregnancies should be expected for these
parents (O’Leary, 2005).
• Providers may give ultrasound images to
parents to reassure them and to assist in
differentiating a new pregnancy from past
ones.
© 2011 March of Dimes Foundation
Fetal Monitoring
• Electronic fetal monitoring in the clinical
setting began in the 1960s.
• Although parents may have seen the heart
beating on ultrasound, the sound through
the abdominal wall still holds high
significance.
© 2011 March of Dimes Foundation
Genetic Testing and Counseling
• Whether prior to conception or after a
loss, understanding the familial traits or
risks of having a baby with genetic
disorders or disease can be useful.
• Chromosomal tests can determine the
presence of single-gene defects for only
select diseases or conditions; however,
the patterns of inheritance are known in a
vast number of disorders.
© 2011 March of Dimes Foundation
Genetic Testing and Counseling
(Continued)
• Genetic counseling is complex and
requires specialized education and
training.
• Nurses should recognize that genetic
causes of loss can lead to feelings of guilt,
blame and defensiveness within extended
families as they review family histories.
© 2011 March of Dimes Foundation
Elective Abortion
• The ethical debate over abortion affects
loss issues associated with life-threatening
fetal conditions discovered in the first half
of pregnancy.
• Nurses must understand their own beliefs
about elective abortion and support
families as they make their decisions.
© 2011 March of Dimes Foundation
Fetal Personhood
• The issue of fetal personhood is complex
with social, religious, legal and ethical
dimensions.
• Bereaved parents have assigned some
degree of personhood to their baby;
therefore, their loss is real, for a real
person who would have been a part of
their life and their family (Côté-Arsenault &
Dombeck, 2001).
© 2011 March of Dimes Foundation
The Tentative Pregnancy and
Anticipatory Grief
• Rothman (1986) found that women
withheld their emotional bonds for the
pregnancy and baby until after they
received test results.
• Anticipatory grief is the preparation for
death during or prior to an inevitable loss
(Hynan, 1986; Rando, 1986), as opposed to
grief after a loss.
© 2011 March of Dimes Foundation
Grief and Mourning
• Grief is an emotional response to the loss
of something or someone held dear; it is
the internal response to loss.
• Mourning is a public or external response
to the death of a loved one.
• The period of time during which grief and
mourning occur after a death is called
bereavement.
© 2011 March of Dimes Foundation
Grief and Mourning (Continued)
• No two people respond to the same event
or loss in exactly the same way; grief is
individual and depends on how loss affects
each person.
• Intense and continued distress symptoms
beyond 6 months to 1 year that interfere
with one’s ability to function and enjoy
life should be evaluated by a mental
health professional (Morrow, 2009).
© 2011 March of Dimes Foundation
Theories of Grief
• Freud (1961/1917) set the stage for early
theories of grief.
• Kübler-Ross (1969) described grief as a
series of stages:
1.
2.
3.
4.
5.
Denial and isolation
Anger
Bargaining
Depression
Acceptance
© 2011 March of Dimes Foundation
Theories of Grief (Continued)
• Stroebe and Schut (2001) suggest a dual
process of grieving that includes
oscillation between two coping modes:
1. Loss orientation (focused on adjusting to a
loss)
2. Restoration orientation (focused on how to
move on in light of a loss)
© 2011 March of Dimes Foundation
Grieving Styles
• Martin and Doka (1999) identify two
primary grieving styles that are formed by
culture, personality and gender:
1. Instrumental grieving
2. Intuitive grieving
© 2011 March of Dimes Foundation
Grieving Styles
(Continued)
• Common grief responses specific to
perinatal loss include:
Heavy or aching arms
Avoiding pregnant women and babies
Sense of loss of the future and shattered dreams
Sense of vulnerability in the world (not as safe
as always assumed)
o Hypervigilance with other children
o
o
o
o
© 2011 March of Dimes Foundation
Developmental Stages and Grief
• An individual’s developmental stage
(Erikson, 1980) influences the way he
processes and responds to loss.
• Most pregnant women and their partners
are in the stage of young adulthood (19 to
40 years of age).
• The basic conflict during this stage is
intimacy vs. isolation, in which individuals
strive for positive relationships to avoid
isolation.
© 2011 March of Dimes Foundation
Helping Families Plan for Loss
• In instances where death is inevitable and
there is time to plan, nurses can do many
things to help the family (Kavanaugh et al.,
2009).
• Decision-making is a process, not a onetime event.
© 2011 March of Dimes Foundation
Helping Families Plan for Loss
(Continued)
• Nursing considerations when helping
families plan for a baby’s death:
o The family’s cultural and spiritual beliefs
o The family’s level of acceptance of the baby’s
condition
o The support the family gets from one another
and from others
o The family’s ability to agree that the goal is
their baby’s comfort and care, rather than a
cure
© 2011 March of Dimes Foundation
Birth Plans
• A birth plan is a communication tool for
parents to use to express their thoughts
and desires for an upcoming birth.
• The same idea applies, and may be more
important, for parents who know they are
delivering a stillborn, a sick baby or a baby
with a known life-threatening condition.
© 2011 March of Dimes Foundation
Neonatal Palliative Care
• Goals of palliative care (Catlin & Carter,
2002):
o Quality of life
o Comfort or relief from symptoms
o Support with tasks and bereavement
• Collaboration across disciplines is critical.
• Nurses require palliative-care education
that includes clinical and ethical aspects.
© 2011 March of Dimes Foundation
Helping Families Grieve: Cultural
and Religious Considerations
• Nurses play an instrumental role in giving
families permission to turn to their culture
and faith to help them with grief and
mourning.
• Culturally sensitive care forms a positive
foundation for dealing with and healing a
person’s grief; it is a vital aspect of care
(Shah, 2004).
© 2011 March of Dimes Foundation
Parents
• Parental grief has been recognized as the
most intense and overwhelming type of
grief (Davies, 2004).
• There is increasing evidence of short- and
long-term effects of perinatal loss, not
only to the woman’s psyche and
relationships with others, but also on
parenting subsequent to loss and on other
children (Bennett et al., 2005; Woods & Woods,
1997).
© 2011 March of Dimes Foundation
Parents
(Continued)
• Because men and women often grieve
differently, parents’ reactions may be
disparate even though both have
experienced the same loss (O’Leary &
Thorwick, 2006).
• This can lead to conflicts about what and
how to do things, as well as what can
make them feel better.
© 2011 March of Dimes Foundation
Parents
(Continued)
• Nurses can provide parents with detailed
information about support services and
options.
• Nurses can present options to parents as
labor, birth and discharge unfold, rather
than as a vast, all-inclusive menu.
© 2011 March of Dimes Foundation
Grandparents
• A grandparent’s response to the loss of a
grandchild may differ from the parent’s
response to the loss of a child.
• Nurses can explain to grandparents that
their care activities are for the benefit of
the parents, even though grandparents
may have different experiences or
expectations.
© 2011 March of Dimes Foundation
Siblings and Other Children
• Children grieve in ways quite different
than adults, often in an uneven pattern.
• Their concept of death varies by
developmental stage, and grief can
reemerge at a later stage when they deal
with it at a different level.
© 2011 March of Dimes Foundation
Siblings and Other Children (Continued)
• Healthy grieving for children can be
predicted by two factors (Himebauch et al.,
2008):
1. Accessibility of one significant adult
2. Being in a safe environment where they are
physically and emotionally taken care of
© 2011 March of Dimes Foundation
Siblings and Other Children (Continued)
• Infants: Maintaining routines and avoiding
separation are important.
• Preschoolers: Nurses and parents can give
children straightforward explanations,
correct their thinking when necessary,
and be clear that the baby is not coming
back.
© 2011 March of Dimes Foundation
Siblings and Other Children (Continued)
• School-age children: Caregivers can give
clear explanations and involve them with
funeral or memorial services if they are
comfortable participating.
• Adolescents need adult support and time
with their peers.
© 2011 March of Dimes Foundation
Care at the Time of Loss
• Nurses can offer parents options and
guide, but not push, them in the hours
after death (Badenhorst & Hughes, 2007).
• Physical care should be as thorough as in
the case of a healthy labor and birth;
emotional issues may seem overwhelming,
but physical safety remains a priority
(Gold, 2007).
© 2011 March of Dimes Foundation
Care at the Time of Loss (Continued)
• The nurse should provide grief-related
information based on the mother’s
readiness.
• Continuity of care should be promoted and
facilitated, if possible; reducing the
number of staff interacting with the family
can help reduce their stress and limit
errors in communications.
© 2011 March of Dimes Foundation
Holding the Baby
• Family contact with the deceased baby
should not be restricted.
• Holding the baby should be offered but
never forced.
• PLIDA has detailed position statements
and practice guidelines for offering
parents the opportunity to hold their
baby.
© 2011 March of Dimes Foundation
Mementoes and Photos
• The nurse can help parents create
memories, gather mementoes and take
photos.
• Photographs can be treasured mementoes
for families.
• Photographs may be unacceptable to
some, depending on their views of the
dead or the unborn.
© 2011 March of Dimes Foundation
Grief Environment
• The nurse should find a quiet moment to
discuss how a woman and her family want
to express their grief.
• The nurse should use a trained interpreter
if there are language differences.
© 2011 March of Dimes Foundation
Family Involvement
• Gender, role and timing are cultural
considerations that may determine
involvement of extended family after a
perinatal loss.
• The nurse can ask a woman whom she
wants to be with her, where she would
like her family to be, what she needs to
wear and where she physically wants to be
(Shah, 2004).
© 2011 March of Dimes Foundation
Naming the Baby
• Giving the baby a name increases the
baby’s social status and personhood.
• There is no timeframe for naming a baby,
especially in the case of early loss when
gender is difficult to determine.
© 2011 March of Dimes Foundation
Autopsy
• Autopsy often provides valuable medical
information about the cause of death; it
also can provide guidance for future
pregnancies.
• Parents should receive information about
the purpose of an autopsy and be asked
for consent to have the procedure done.
© 2011 March of Dimes Foundation
Care of the Deceased
• Burial and cremation are the primary
means of dealing with a deceased baby’s
body.
• Gestational age, state law, religion and
culture are considered in care of a
deceased baby (Chichester, 2005; Shah, 2004).
• Nurses must know their institution’s
protocols and explain all options and
procedures to parents.
© 2011 March of Dimes Foundation
Rituals and Services
• Nurses can ask families about rituals or
traditions they would like to observe.
• Rituals include baptism, songs, readings
and ceremonies.
• Families need time to make arrangements
for funerals and memorial services.
• Memorial services can be done at any
time, even long after the actual death.
© 2011 March of Dimes Foundation
Discharge Planning
• Bereaved parents need information,
support and planning help for the early
days after their loss.
• Instructions should include physical care
of the woman.
• Bereavement materials should include
common responses to grief and loss,
community and online resources, and a
list of symptoms and concerns that
warrant contacting a health care provider.
© 2011 March of Dimes Foundation
Discharge Planning (Continued)
• Going home to pregnancy and baby things
can be difficult for grieving families.
• Having a list of specific things for people
to do for the family can be beneficial.
• Hospital staff can call families 1 to 2
weeks post-loss to see how they are doing
and if they have questions.
© 2011 March of Dimes Foundation
Miscarriage
• Miscarriage may not be acknowledged by a
woman’s friends and family as a true form
of loss; therefore, it’s critical that the
nurse support the woman and her partner
medically and emotionally.
• Nurses can assist mothers who miscarry by
listening to their stories and helping them
create their own memories (Kobler et al.,
2007).
© 2011 March of Dimes Foundation
Intimacy
• While difficult to bring up, nurses should
discuss contraception with couples.
• Some couples report difficulty in resuming
intimacy due to reminders, perineal
trauma and fear of pregnancy (Davis, 1996;
Kohn & Moffitt, 2000).
© 2011 March of Dimes Foundation
Pregnancy After Loss
• Pregnancy after perinatal loss, both the
next pregnancy and any subsequent
pregnancies, often is accompanied with
anxiety and fear (Armstrong & Hutti, 1998;
Côté-Arsenault et al., 2001).
• The timing of the next pregnancy has been
the subject of research with mixed
findings (Barr, 2006).
© 2011 March of Dimes Foundation
Pregnancy After Loss (Continued)
• Nursing strategies:
o Acknowledge the woman’s loss.
o Listen to and know her story.
o Acknowledge that she may be anxious and
scared.
o Acknowledge that prenatal testing may be
stressful for her.
o Provide reassurance, but remind her that there
are no guarantees.
o Encourage her to come in and call as often as
she needs to.
© 2011 March of Dimes Foundation
Nursing Roles and Settings
In all nursing settings, when a perinatal loss
is suspected, expected or confirmed, nurses
should be knowledgeable and caring as they
address informational, emotional and
medical needs of families.
© 2011 March of Dimes Foundation
Hospital Protocols
• Protocol checklists for required nursing
actions include providing maternal and
neonatal care, creating memories for
families, and providing emotional and
spiritual support.
• In all settings, nurses should use
established checklists and protocols to
ensure that all aspects of care and
bereavement services are provided.
© 2011 March of Dimes Foundation
Care for the Caregiver
• The nurse’s experience of perinatal loss:
o Acknowledge your connection to this baby and
family.
o Allow yourself to grieve.
o Be kind to yourself; everyone has frailties.
o Talk with others; gain support.
o Take care of yourself physically, emotionally,
socially and spiritually.
• Self-reflection is critical for self care.
© 2011 March of Dimes Foundation
Care for the Caregiver (Continued)
• Papadatou (2000) suggests that grieving is
an individual and a social-interactive
process.
• Nurses can create a network of care
providers, including nurses and other
professionals, who support each other,
listen and understand.
© 2011 March of Dimes Foundation
Summary
Nurses often are caregivers of bereaved
parents and, therefore, need to have
background in and comfort with issues
surrounding care of families experiencing
loss.
© 2011 March of Dimes Foundation