Perinatal bereavement

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Perinatal bereavement or perinatal grief refers to the emotions of the family following a perinatal death, defined as the demise of a fetus (after 20 weeks gestation) or newborn infant (up to 30 days after birth). [1] Perinatal loss affects one in every ten women across the globe [2] with the worldwide perinatal death rate at approximately 2.7 million deaths per year. [3] Perinatal death is recognized as a traumatic life event as it is often sudden, unexpected, and devastating to parents who have had little to no direct life experiences with their child before their death. [4]

Contents

Types of perinatal loss

Miscarriage

A miscarriage, or spontaneous abortion, is defined as a "natural pregnancy loss before 20 weeks of gestation." [5] According to The American College of Obstetricians and Gynecologists (ACOG), miscarriage is the most frequent type of pregnancy loss. [6] Approximately 15% of all pregnancies result in a miscarriage, with one in every four women experiencing a miscarriage at some point in their life. [7] 50% of all miscarriages result from chromosomal abnormalities, while the remaining cases could be a mixture of physical, hormonal, environmental, and lifestyle factors. [8] Risk factors for miscarriage include advanced maternal age, history of previous miscarriages, obesity, autoimmune disorders, substance use, and more. [5] Despite recommendations of bed rest, administrations of hormones such as β-hCG and prophylactic progesterone, uterine relaxants, and other therapies, there are no effective means of preventing a miscarriage. [9]

Common symptoms of miscarriage include vaginal bleeding and lower abdominal cramping. [10] However, these symptoms are not definitive of a miscarriage occurring. To distinguish a miscarriage from other pregnancy complications, a thorough evaluation of a patient's medical history, as well as a physical examination, transvaginal ultrasound, and blood tests are recommended. [9]

Stillbirth

Pregnancy loss that occurs after 20 weeks of gestation is referred to as a stillbirth. Stillbirth involves the delivery of a fetus that has passed away before or during birth. Almost 1.9 million stillbirths occur each year, with unexplained stillbirths accounting for 76% of cases across the globe. [11] [12] Risk factors for stillbirth include placental abnormalities, advanced maternal age, diabetes, substance use, hypertension, previous stillbirths, and more. [12] However, it is often difficult to assess the cause of stillbirth if systematic investigations into the cause of death are not undertaken. [13]

Neonatal mortality

Neonatal mortality refers to the death of an infant within the first 28 days after birth. 75% of all neonatal deaths occur during the first seven days of life (also referred to as early neonatal mortality), with the main causes of neonatal death being preterm birth, congenital malformations, perinatal asphyxia or trauma, neonatal infections, and other birth disorders. [14] [15] Approximately 2.4 million neonatal deaths occur each year, with the majority of deaths taking place in low- and middle-income countries. [16] [17] In 2020, almost half of all deaths in children under the age of five occurred during the newborn period. [18]

Psychological impact

The loss of a child, regardless of their age, is a profoundly painful event for any parent to experience. Perinatal death is especially traumatic as it is rarely anticipated and can defy parents' expectations of the natural order of life. [19] The grieving process involved in a sudden perinatal death further includes the loss of future dreams, experiences, and expectations associated with their child's future. [2] Reactions to perinatal loss can vary widely depending on one's personal, cultural, and situational factors. In a typical grieving process, the intensity of grief gradually lessens over the course of a year after the loss. However, for a majority of parents experiencing perinatal loss, varying patterns of persistent and unresolved grief remain after two years of the loss. [4]

Perinatal death can have profound emotional consequences for parents, families, and communities. For mothers, the consequences of perinatal loss can be physical (such as hemorrhage or infection) and psychological (such as symptoms of post-traumatic stress, anxiety, depression, and other serious mental health disorders). [2] For fathers, feelings of pain, sadness, inadequacy, and helplessness may be masked to assume the responsibility of supporting their partners during the grieving process. [20] Complicated grief, or prolonged grief disorder (PGD), can develop following a perinatal death due to a lack of social support, poor marital relations, fertility struggles, pre-existing mental health conditions, and/or the absence of other children. [21] A lack of acknowledgement and support from society and healthcare professionals of the emotional impact of perinatal loss can further lead to parents experiencing disenfranchised grief, which may result in secretive mourning and heightened feelings of guilt and self-blame. [22] Furthermore, as bereavement care guidelines tend to be female-focused, bereaved fathers may feel overlooked and marginalized by medical professionals, workplace policies, and community support programs, leading to unresolved grief. [23]

Perinatal Grief Scale

Psychiatrists may assess a patient experiencing perinatal bereavement using a testing instrument called the Perinatal Grief Scale (PGS). Developed by Lori J. Toedter, Judith N. Lasker and Janice M. Alhadeff in 1988, the Perinatal Grief Scale stands as the most commonly used and translated instrument to measure perinatal grief. [24] The PGS consists of 33 statements regarding feelings following perinatal loss and a scale of answers ranging from "strongly agree" to "strongly disagree." [25] Despite the development of other perinatal grief instruments, the PGS remains the most consistent and reliable means of assessing perinatal grief for clinicians and researchers. It has been instrumental in gauging grief responses in patients, assessing related psychological and social factors, and evaluating the effectiveness of bereavement interventions. [24]

Complicating factors

There are several complicating factors associated with perinatal loss that can hinder the normal grieving process for parents. In the case of miscarriage, others may be unaware of a mother's loss due to the typical recommendation to only announce pregnancy after the end of the first trimester (week 12). As such, mothers may feel unable to share their experience of child loss with others due to the stigma surrounding child death and the perception that they are not "real mothers." [26] Mothers bereaved by stillbirth or miscarriage may feel that they are to blame for their child's death, or that they do not have a right to bereavement as they do not have physical memories of the child. [2] Furthermore, when child loss occurs during an early pregnancy stage, there is typically no funeral or other mourning rituals performed that may help parents feel that they have honored their child's existence. The lack of closure and recognition that arises from the inability to publicly acknowledge and mourn their child's death can exacerbate grief intensity and increase the likelihood of developing complicated grief. [4]

Loss of Identity

The death of a child during pregnancy or shortly after birth can have a strong effect on a mother's sense of identity. Bereaved mothers may find it difficult to connect to or accept their identity as a mother after experiencing child loss, resulting in a fragmented sense of self. Feelings of having failed to become a mother, being robbed of motherhood, and experiencing exclusion and silence from society can interfere with the construction of maternal identity. [27] Additionally, bereaved mothers may struggle with ongoing pregnancy-related symptoms after their baby has passed, such as lactation, postpartum hormonal changes, and alterations in body shape. These physical reminders of their pregnancy and the child that was lost can intensify emotional distress, leading mothers to feel a need to distance themselves from their bodies. Bereaved mothers frequently grapple with reconciling their identity as mothers with their identity as individuals who have suffered child loss. Their sense of motherhood can feel threatened by societal reminders, such as consent forms asking how many children they have, holidays like Mother's Day, representations of families in advertisements, and displays in baby sections. [26] Various grief responses may lead these mothers to retreat socially, avoid mentioning their deceased child, develop extreme anxiety about losing future children, and strive to create a new normal for themselves while honoring their child. [26] [28]

Coping strategies and bereavement interventions

Coping strategies and bereavement interventions play an essential role in helping bereaved mothers manage the psychological and emotional hardships of losing a child. For some mothers, personifying their deceased child by attributing individuality, identity, and human qualities to them helps maintain a bond and grieve for a real person rather than an abstract loss. [29] Similarly, for others, preserving the memory of their deceased child through tangible objects such as ultrasound photos, stuffed animals, and clothing can help honor their lost child and maintain their sense of motherhood. [26] Grief support groups, bereavement care programs, and individual counseling can further help with emotional regulation, processing the loss, developing maternal identity, and expressing grief in a supportive environment. [30] [31] [32]

Perinatal bereavement awareness

To raise awareness of perinatal loss and support affected families, many countries observe a dedicated day of remembrance. October 15th is recognized as Pregnancy and Infant Loss Remembrance Day and is observed in countries including Canada, [33] the United States, [34] Australia, [35] Ireland, [36] and the United Kingdom, where the observance has been extended to a week. [37] The day provides an opportunity for families to remember and honor their children who have passed away. Observances include candle-lighting vigils such as the Wave of Light [38] and commemorative events like the Walk to Remember. [39] These events provide a space for bereaved parents to share their grief and connect with others, with the aim of raising public awareness and encouraging dialogue about the prevalence of baby loss. [40]

See also

Related Research Articles

<span class="mw-page-title-main">Childbirth</span> Conclusion of the human pregnancy with the expulsion of a fetus from mothers womb

Childbirth, also known as labour, parturition and delivery, is the completion of pregnancy where one or more babies exits the internal environment of the mother via vaginal delivery or caesarean section. In 2019, there were about 140.11 million human births globally. In developed countries, most deliveries occur in hospitals, while in developing countries most are home births.

<span class="mw-page-title-main">Miscarriage</span> Natural premature termination of pregnancy

Miscarriage, also known in medical terms as a spontaneous abortion, is an end to pregnancy resulting in the loss and expulsion of an embryo or fetus from the womb before it can survive independently. Miscarriage before 6 weeks of gestation is defined as biochemical loss by ESHRE. Once ultrasound or histological evidence shows that a pregnancy has existed, the term used is clinical miscarriage, which can be "early" or "late". Spontaneous fetal termination after 20 weeks of gestation is known as a stillbirth. The term miscarriage is sometimes used to refer to all forms of pregnancy loss and pregnancy with abortive outcomes before 20 weeks of gestation.

<span class="mw-page-title-main">Live birth (human)</span> Event that a fetus is born alive with heartbeats or respiration

In human reproduction, a live birth occurs when a fetus exits the mother showing any definite sign of life such as voluntary movement, heartbeat, or pulsation of the umbilical cord, for however brief a time and regardless of whether the umbilical cord or placenta are intact. After the fetus is expelled from the maternal body it is called a neonate. Whether the birth is vaginal or by caesarean section, and whether the neonate is ultimately viable, is irrelevant.

<span class="mw-page-title-main">Stillbirth</span> Death of a fetus before or during delivery, resulting in delivery of a dead baby in some manner

Stillbirth is typically defined as fetal death at or after 20 or 28 weeks of pregnancy, depending on the source. It results in a baby born without signs of life. A stillbirth can often result in the feeling of guilt or grief in the mother. The term is in contrast to miscarriage, which is an early pregnancy loss, and sudden infant death syndrome, where the baby dies a short time after being born alive.

<span class="mw-page-title-main">Grief</span> Response to loss in humans and other animals

Grief is the response to the loss of something deemed important, particularly to the loss of someone or some living thing that has died, to which a bond or affection was formed. Although conventionally focused on the emotional response to loss, grief also has physical, cognitive, behavioral, social, cultural, spiritual and philosophical dimensions. While the terms are often used interchangeably, bereavement refers to the state of loss, while grief is the reaction to that loss.

Prenatal development involves the development of the embryo and of the fetus during a viviparous animal's gestation. Prenatal development starts with fertilization, in the germinal stage of embryonic development, and continues in fetal development until birth.

<span class="mw-page-title-main">Complications of pregnancy</span> Medical condition

Complications of pregnancy are health problems that are related to, or arise during pregnancy. Complications that occur primarily during childbirth are termed obstetric labor complications, and problems that occur primarily after childbirth are termed puerperal disorders. While some complications improve or are fully resolved after pregnancy, some may lead to lasting effects, morbidity, or in the most severe cases, maternal or fetal mortality.

<span class="mw-page-title-main">Nutrition and pregnancy</span> Nutrient intake and dietary planning undertaken before, during and after pregnancy

Nutrition and pregnancy refers to the nutrient intake, and dietary planning that is undertaken before, during and after pregnancy. Nutrition of the fetus begins at conception. For this reason, the nutrition of the mother is important from before conception as well as throughout pregnancy and breastfeeding. An ever-increasing number of studies have shown that the nutrition of the mother will have an effect on the child, up to and including the risk for cancer, cardiovascular disease, hypertension and diabetes throughout life.

<span class="mw-page-title-main">Intrauterine hypoxia</span> Medical condition when the fetus is deprived of sufficient oxygen

Intrauterine hypoxia occurs when the fetus is deprived of an adequate supply of oxygen. It may be due to a variety of reasons such as prolapse or occlusion of the umbilical cord, placental infarction, maternal diabetes and maternal smoking. Intrauterine growth restriction may cause or be the result of hypoxia. Intrauterine hypoxia can cause cellular damage that occurs within the central nervous system. This results in an increased mortality rate, including an increased risk of sudden infant death syndrome (SIDS). Oxygen deprivation in the fetus and neonate have been implicated as either a primary or as a contributing risk factor in numerous neurological and neuropsychiatric disorders such as epilepsy, attention deficit hyperactivity disorder, eating disorders and cerebral palsy.

<span class="mw-page-title-main">Perinatal mortality</span> Medical condition

Perinatal mortality (PNM) is the death of a fetus or neonate and is the basis to calculate the perinatal mortality rate. Perinatal means "relating to the period starting a few weeks before birth and including the birth and a few weeks after birth."

Disenfranchised grief is a term coined by Dr. Kenneth J. Doka in 1989. The concept describes the fact that some forms of grief are not acknowledged on a personal or societal level in modern Eurocentric culture. People might not like how you may or may not be expressing your grief or view your loss as insignificant, and thus they may feel uncomfortable, or judgmental. This is not a conscious way of thinking for most individuals, as it is deeply engrained in our psyche. This can be extremely isolating, and push you to question the depth of your grief and the loss you’ve experienced. This concept is viewed as a "type of grief", but it more so can be viewed as a "side effect" of grief. This also is not only applicable to grief in the case of death, but also the many other forms of grief. There are few support systems, rituals, traditions, or institutions such as bereavement leave available to those experiencing grief and loss.

Pregnancy and Infant Loss Remembrance Day is an annual day of remembrance observed on October 15 for pregnancy loss and infant death, which includes miscarriage, stillbirth, SIDS, ectopic pregnancy, termination for medical reasons, and the death of a newborn. Pregnancy and infant loss is a common experience that has historically been complicated by broadly applied social and cultural taboos to stay silent, a condition that the World Health Organization advocates reversing in favor of open expression. A growing number of public figures have come out in support of open expression, with many leading by example through the disclosure of their personal experiences of pregnancy loss and infant death.

Maternal health is the health of women during pregnancy, childbirth, and the postpartum period. In most cases, maternal health encompasses the health care dimensions of family planning, preconception, prenatal, and postnatal care in order to ensure a positive and fulfilling experience. In other cases, maternal health can reduce maternal morbidity and mortality. Maternal health revolves around the health and wellness of pregnant women, particularly when they are pregnant, at the time they give birth, and during child-raising. WHO has indicated that even though motherhood has been considered as a fulfilling natural experience that is emotional to the mother, a high percentage of women develop health problems and sometimes even die. Because of this, there is a need to invest in the health of women. The investment can be achieved in different ways, among the main ones being subsidizing the healthcare cost, education on maternal health, encouraging effective family planning, and ensuring progressive check up on the health of women with children. Maternal morbidity and mortality particularly affects women of color and women living in low and lower-middle income countries.

Birth spacing, pregnancy spacing, inter-birth interval (IBI) or inter-pregnancy interval refers to how soon after a prior pregnancy a woman becomes pregnant or gives birth again. There are health risks associated both with pregnancies placed closely together and those placed far apart, but the majority of health risks are associated with births that occur too close together. The WHO recommends 24 months between pregnancies. A shorter interval may be appropriate if the pregnancy ended in abortion or miscarriage. If the mother has had a prior C-section, it is advisable to wait before giving birth again due to the risk of uterine rupture in the mother during childbirth, with recommendations of a minimum inter-delivery interval ranging from a year to three years. Pregnancy intervals longer than five years are associated with an increased risk of pre-eclampsia. The global public health burden of short inter-pregnancy intervals is substantial. Family planning can help increase inter-pregnancy interval.

Antenatal depression, also known as prenatal or perinatal depression, is a form of clinical depression that can affect a woman during pregnancy, and can be a precursor to postpartum depression if not properly treated. It is estimated that 7% to 20% of pregnant women are affected by this condition. Any form of prenatal stress felt by the mother can have negative effects on various aspects of fetal development, which can cause harm to the mother and child. Even after birth, a child born from a depressed or stressed mother feels the affects. The child is less active and can also experience emotional distress. Antenatal depression can be caused by the stress and worry that pregnancy can bring, but at a more severe level. Other triggers include unplanned pregnancy, difficulty becoming pregnant, history of abuse, and economic or family situations.

<span class="mw-page-title-main">Miscarriage and grief</span>

Miscarriage and grief are both an event and subsequent process of grieving that develops in response to a miscarriage. Almost all those experiencing a miscarriage experience grief. This event is often considered to be identical to the death of a child and has been described as traumatic. "Devastation" is another descriptor of miscarriage. Grief is a profound, intensely personal sadness stemming from irreplaceable loss, often associated with sorrow, heartache, anguish, and heartbreak. Sadness is an emotion along with grief, on the other hand, is a response to the loss of the bond or affection was formed and is a process rather than one single emotional response. Grief is not equivalent to depression. Grief also has physical, cognitive, behavioral, social, cultural, and philosophical dimensions. Bereavement and mourning refer to the ongoing state of loss, and grief is the reaction to that loss. Emotional responses may be bitterness, anxiety, anger, surprise, fear, and disgust and blaming others; these responses may persist for months. Self-esteem can be diminished as another response to miscarriage. Not only does miscarriage tend to be a traumatic event, women describe their treatment afterwards to be worse than the miscarriage itself.

Mental disorders can be a consequence of miscarriage or early pregnancy loss. Even though women can develop long-term psychiatric symptoms after a miscarriage, acknowledging the potential of mental illness is not usually considered. A mental illness can develop in women who have experienced one or more miscarriages after the event or even years later. Some data suggest that men and women can be affected up to 15 years after the loss. Though recognized as a public health problem, studies investigating the mental health status of women following miscarriage are still lacking. Posttraumatic stress disorder (PTSD) can develop in women who have experienced a miscarriage. Risks for developing PTSD after miscarriage include emotional pain, expressions of emotion, and low levels of social support. Even if relatively low levels of stress occur after the miscarriage, symptoms of PTSD including flashbacks, intrusive thoughts, dissociation and hyperarousal can later develop. Clinical depression also is associated with miscarriage. Past responses by clinicians have been to prescribe sedatives.

A rainbow baby is a child born to a family that has previously lost one or more children due to stillbirth, miscarriage, ectopic pregnancy, termination for medical reasons, or death during infancy. These subsequent pregnancies can bring "strong feelings of anxiety, guilt, and even fear" but also "immense joy, reflection, healing, and mixed emotions". The term "rainbow" is symbolic of the hope brought by the child after the emotional storm of the previous loss.

<span class="mw-page-title-main">COVID-19 in pregnancy</span> Medical condition

COVID-19 infection in pregnancy is associated with several pregnancy complications. However, pregnancy does not appear to increase the susceptibility of becoming infected by COVID-19. Recommendations for the prevention of COVID-19 include the same measures as non-pregnant people.

Reproductive loss, sometimes reproductive disappointment or reproductive grief, describes a potential emotional response to unsuccessful attempts at human reproduction or family-building. These experienced losses may include involuntary childlessness generally, pregnancy loss from all causes, perinatal death, stillbirth, infecundity and infertility from all causes, failed attempts to conceive, failed fertility treatments, failed gestational surrogacy procedures, and losses related to all dimensions of the adoption process. Responses to miscarriage, stillbirth, selective reduction and neonatal death are a subtype of reproductive loss called perinatal bereavement.

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  33. ↑ Canada, Public Health Agency of (2023-10-13). "Message from the Minister of Mental Health and Addictions and Associate Minister of Health – Pregnancy and Infant Loss Remembrance Day". www.canada.ca. Retrieved 2024-11-13.
  34. ↑ Congress of the United States (2006-09-28). "H. CON. RES. 222 Supporting the goals and ideals of National Pregnancy and Infant Loss Remembrance Day". www.govinfo.gov. Retrieved 2024-11-13.
  35. ↑ "Remembrance day for lost babies". Yahoo News. 2014-10-15. Retrieved 2024-11-13.
  36. ↑ Reporter, Staff (2020-10-14). "'Wave of Light' event for Pregnancy & Infant Loss Awareness Day this Thursday". Limerick Post Newspaper. Retrieved 2024-11-13.
  37. ↑ "About – Baby Loss Awareness Week" . Retrieved 2024-11-13.
  38. ↑ "Global Wave Of Light 2024 - Awareness Days Events Calendar 2024" . Retrieved 2024-11-13.
  39. ↑ "A Walk to Remember". PAIL Network. Retrieved 2024-11-13.
  40. ↑ Carper, Theresa (2020-10-15). "Pregnancy and Infant Loss Remembrance Day". National Today. Retrieved 2024-11-13.


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