What Is Pregnancy & Infant Loss?

an empty bassinet signifies pregnancy and infant loss

Infant and pregnancy loss is a term used to describe the death of an infant before one year of age or the death of a fetus before birth. It encompasses miscarriage, abortion, stillbirth,  neonatal death and any death that occurs between the first and 12th month of life. 

Pregnancy Loss

Pregnancy loss is the death of a fetus at any time before birth. According to Stanford Health, it is extremely common, occurring in as many as one in four pregnancies, usually during the first three months. Pregnancy loss can occur in a number of ways, including:

  • Embryonic pregnancy: A pregnancy in which a fertilized egg never develops into an embryo. This is also known as a “blighted ovum” because the yolk sac and placenta begin to develop but the embryo does not. 
  • Miscarriage: In the United States, a miscarriage is defined as any pregnancy loss that occurs before 20 weeks of gestation. It is also called a spontaneous abortion. Miscarriages are further classified as early or late. An early miscarriage happens before 12 weeks gestation; a late miscarriage occurs between 13 and 20 weeks. Beyond 20 weeks, in-utero death is called stillbirth. 
  • Ectopic pregnancy: An ectopic pregnancy occurs when the embryo implants outside the uterus, usually in a fallopian tube. Ectopic pregnancies can also occur in the cervix, pelvis or abdominal cavity. Ectopic pregnancies are never viable and require medical treatment to prevent complications that can endanger the health of the mother. 
  • Molar pregnancy: A molar pregnancy is a rare form of pregnancy loss in which abnormal cells known as trophoblasts replace placental tissue. It is a chromosomal abnormality characterized by two sets of male chromosomes, either alone or in conjunction with one set of female chromosomes. Like an ectopic pregnancy, a molar pregnancy requires medical treatment and never produces a viable fetus. 
  • Abortion: Although the term abortion may be used to describe any pregnancy loss that occurs before 20 weeks gestation, in today’s vernacular it typically refers to a pregnancy that is terminated intentionally, for either psychosocial, economic or medical reasons (for example, when genetic testing shows a non-survivable chromosomal defect or when the health of the mother is in jeopardy.) Abortion may be performed surgically or through the ingestion of abortifacient medication such as mifepristone. 
  • Selective fetal reduction: Selective fetal reduction is the abortion of one or more fetuses in a multiple pregnancy in order to reduce the risk of complications for both mother and surviving fetuses. It is typically done when a mother is carrying more than three fetuses at once. The procedure may be performed using surgical methods or abortifacient medication. 

Regardless of the cause, any pregnancy loss can be extraordinarily difficult for the expectant parents and extended family. Feelings of grief, depression, anger and anxiety are common, especially in people who have experienced more than one pregnancy loss. The psychological effects of pregnancy loss often persist for some time, even if the person later goes on to have a healthy pregnancy and live-birth delivery.

Stillbirth

Stillbirth is pregnancy loss that occurs after 20 weeks gestation. It is characterized as early, late or term. 

  • Early stillbirth is when fetal death occurs between 20 and 27 weeks of pregnancy
  • Late stillbirth is when fetal death occurs between 28 and 36 weeks of pregnancy
  • Term stillbirth occurs when fetal death occurs any time after 37 weeks

Early stillbirth often goes unnoticed until the next scheduled prenatal visit, when an ultrasound reveals no fetal heartbeat. If this occurs between 20 and 24 weeks of gestation, surgical evacuation of the pregnancy may be possible, depending on state law. But if fetal demise occurs at or after 24 weeks gestation, the baby must be delivered, either vaginally or via Cesarean section. This can be extraordinarily difficult for the mother, who must go through the experience of labor and delivery knowing that her baby has died. 

A few options are available to deliver babies who have died in utero after 24 weeks. Usually, the safest option is to induce labor because carrying a deceased fetus for more than a few weeks can endanger the mother’s life. If the mother and her healthcare team choose this course, the doctor will prescribe medication that will typically start labor within two days. 

Alternatively, the pregnant woman may choose to wait for labor to begin naturally, which will usually happen within two weeks of fetal demise. It may be more difficult to obtain a fetal autopsy if the family chooses this course, and there is an increased risk of complications the longer the pregnancy goes on. 

In rare cases of stillbirth, doctors will perform an emergency Cesarean-section. This procedure is typically performed only when the mother’s health is in jeopardy, since it carries a high risk of complications and long-term implications for future pregnancies.  

Regardless of the timeframe of pregnancy loss, it is a devastating experience for the vast majority of people, who experience it as acutely as the death of an already living child. It is essential to remember that the grieving parents and extended family are deserving of sympathy and support, regardless of how far along the pregnancy was. 

Infant Loss

Infant loss is loosely defined as the death of any child during the first year of life. It includes term stillbirths, neonatal death and Sudden Unexpected Infant Death, which includes the diagnosis of Sudden Infant Death Syndrome or SIDS. Infant loss may also occur due to congenital birth defects, complications related to preterm birth and low birth weight, and infections.

Neonatal Death

Neonatal death, also called newborn death, is the term used for the death of a baby within the first 28 days of life.  It is relatively rare in the United States, occurring in about 4 in every 1,000 newborns. It is more common in babies born of mothers who are non-Hispanic Blacks than in any other demographic group. 

Most neonatal deaths occur in the first few days of life and are attributable to causes associated with prematurity, low birth weight or birth defects. Complications during delivery, most notably birth asphyxia or failure to breathe, are a leading cause of neonatal death globally, although less common in the United States.  

Prematurity and low birth weight

Premature infants are at risk of a number of life-threatening health conditions simply because their organs have not had time to fully mature. They are also very small, typically weighing less than 2,500 grams (5 pounds, 8 ounces) and sometimes as little as 500 grams (1 pound, 1 ounce.) Both prematurity and low birth weight can lead to a number of health conditions. Of these, the most common are:

  • Respiratory Distress Syndrome or RDS: RDS is a breathing problem that occurs most often in babies born before 34 weeks of pregnancy. It results from a lack of surfactant in the lungs, a protein that helps keep the small air sacs in the lungs inflated. Babies with RDS typically need supplemental oxygen and may need to be on a ventilator for some time. About 825 babies die from RDS annually. 
  • Intraventricular hemorrhage or IVH: An intraventricular hemorrhage is bleeding in the brain, and it is a common complication in babies born before 32 weeks gestation. The bleeding can be minor, and usually resolves on its own. In more severe cases, the baby can die shortly after birth or develop complications that affect its development later on. 
  • Necrotizing enterocolitis or NEC: Necrotizing enterocolitis is an extremely serious illness in which the lining of the intestine becomes inflamed and infected, leading to necrosis (cell death) of the colon. The cause of NEC is unknown, but it is most common in premature infants, and usually occurs within a week or two of birth. About 50% of infants who develop NEC will die.
  • Infections: Because premature infants have an underdeveloped immune system, they are at a higher risk of contracting life-threatening infections, including pneumonia, sepsis and meningitis. Although advances in neonatal care have allowed more of these infants to survive, infections remain a major cause of death and disability in premature infants.

Birth Defects

Congenital birth defects are relatively common in the United States, affecting one in every 33 babies born, or about 120,000 infants annually. Not all birth defects are life-threatening, but many are. Those that most often result in neonatal death include:

  • Heart defects: Heart defects are the number one birth defect in infants born in the United States, affecting about 40,000 infants each year. They are also the leading cause of death due to birth defects annually. Thanks to advances in surgical treatments and supportive care, fewer babies with congenital heart defects die today than in decades past. However, heart defects still account for about 4% of neonatal deaths. 
  • Genetic abnormalities: A number of genetic disorders can result in neonatal death. These deaths generally are caused not by the genetic abnormality itself but by the severe birth defects that arise from it. For example, babies with trisomy 13 or Patau’s syndrome typically have heart defects, poor muscle tone, low-birth weight, cleft lip and/or cleft palate and multiple other congenital anomalies. These multiple conditions usually result in the death of the infant within the first few weeks of life. 
  • Neural tube defects: Neural tube defects or NTDs are abnormalities of the brain and spinal cord. The most serious NTD is anencephaly, a condition in which the infant’s brain and skull fail to develop properly. Many babies with anencephaly die in utero. Those who are born usually die within the first few hours of life. 

Other neural tube defects include encephalocele and spina bifida, conditions in which the neural tube (the embryonic structure that develops into the brain, spinal cord and surrounding membranes) fails to close all the way, leaving parts of the brain or spinal cord exposed. Depending on the severity of the defect, both conditions can often be treated successfully with surgery. However, if the defect is severe, the infant has other congenital abnormalities or is premature, either can be fatal. 

Sudden Unexpected Infant Death (SUID)

In the United States and other high-income countries, most full-term infants survive their first year of life. Of those who do not, 40% die within the first 28 days, usually from one of the causes mentioned above. After the first month of life, infant deaths are categorized as Sudden Unexpected Infant Death, which includes accidental suffocation or strangulation and Sudden Infant Death Syndrome or SIDS. 

Accidental Suffocation and Strangulation

Accidental Suffocation or Strangulation During Infant Sleep, also called Accidental Suffocation and Strangulation in Bed (ASSB), is a leading cause of accidental death in infants in the United States. It occurs when something impedes a baby’s breathing while they are asleep. The infant may become stuck between a mattress and crib-rails, or suffocate when its head becomes trapped in soft bedding such as a comforter or blanket. In some instances, babies have been accidentally suffocated by a sleeping adult with whom they shared a bed. It is most common in children under six months old, especially during the first three months of life. 

Sudden Infant Death Syndrome or SIDS

Sudden Infant Death Syndrome is the sudden death of a baby between one month and 12 months of age which is unexplained despite a thorough clinical history, death investigation and autopsy. It is the most common cause of infant death after the first month of life, accounting for about 38 deaths per 100,000 live births annually in the United States. SIDS was once called crib death because the vast majority of SIDS cases occur while the infant is or appears to be asleep. 

Despite a vast amount of research over several decades, the cause of SIDS remains unknown. However, experts have proposed a number of theories, most of which revolve around a defect in the baby’s brain that makes regulating respiration more difficult. It may be that these infants have a defect in their ability to detect high carbon dioxide levels in the blood, and therefore lack the physiologic stimulus to breathe. (Carbon dioxide levels are primarily responsible for respiratory drive.) This may be coupled with a defect in the infant’s sleep/wake mechanism, since death typically occurs when the baby is asleep. Most babies who die of SIDS have no history of observed apnea, or long pauses in breathing, before death occurs.  

Despite not knowing what causes SIDS, experts are aware of many risk factors that may influence the likelihood that a baby will die of SIDS. These include: 

  • Prematurity and low-birth weight
  • Recent upper respiratory infection
  • Male sex
  • Age between 2 and 4 months 
  • Ethnicity: Black, Native American and Alaskan natives have a higher incidence of SIDS
  • Exposure to second-hand smoke
  • Maternal age less than 20 years
  • Maternal drug, alcohol or tobacco use
  • Poor prenatal care

Additionally, an infant’s sleep environment has been shown to play a major role in the incidence of SIDS. Babies who sleep on their stomach or sides or on a soft sleep surface have a greater risk of SIDS, as do those who sleep in the same bed as parents or caregivers. Since the National Institute of Child Health and Human Development (NICHD) implemented its widespread and very successful Back to Sleep campaign in 1994, urging that all babies be placed on their backs on a firm sleep surface for sleep, the incidence of SIDS has dropped from about 130 deaths per 100,000 live births in 1990 to 38.4 deaths per 100,000 live births in 2020. Now dubbed the Safe to Sleep campaign, the most up-to-date guidelines for infant sleep include additional recommendations issued by the American Academy of Pediatrics in 2022. These include:

  • Place infants on their backs on a firm, flat surface free of blankets, comforters, pillows and soft toys for every sleep
  • Feed human milk as much as possible
  • Offer the infant a pacifier for sleep and naps
  • Avoid overheating. Remove head coverings for sleep 
  • Whenever possible, put the infant to sleep in the same room as but on a separate surface from a responsible adult for its first 6 months of life
  • Avoid exposing the baby to tobacco smoke
  • Immunize the infant in accordance with established public health guidelines

Additionally, the AAP urges expectant mothers to refrain from using alcohol, opioids, marijuana, tobacco or any illicit substances, and get regular prenatal care. This is especially important for women whose age or ethnicity puts their babies at greatest risk. 

The Emotional Impact of Pregnancy Loss

The loss of an infant, whether during pregnancy or after birth, is a tragedy experienced by far too many families worldwide. And while the death of an infant is typically understood to be incredibly impactful for the mother, father and family as whole, the emotional effects of pregnancy loss are not as widely recognized. Many women and their partners feel disenfranchised in their grief and find it difficult to reach out for emotional support. 

According to research published in Frontiers in Global Women’s Health, miscarriage or spontaneous abortion is the most common obstetric complication worldwide, occurring in about 20% of all pregnancies. Further, research suggests that up to 50% of women who experience miscarriage or stillbirth develop significant psychological symptoms afterwards, including depression, grief and anxiety. The incidence of these symptoms is higher in women who are already marginalized or otherwise vulnerable, including women living in poverty, immigrants and childless women. Lack of social support or the support of an intimate partner were also associated with more significant levels of emotional distress after pregnancy loss.

Recurrent miscarriage is an even greater predictor of psychological complications in both women and their partners. Families who lose more than one pregnancy tend to feel discouraged and distressed; they also experience high levels of depression, grief and anxiety and feelings of anger and guilt. And while women tend to experience these effects more acutely, they also  impact their partners, who often feel the need to stifle their pain in order to support their partner in her grief. 

Stillbirth

While stillbirth is a form of pregnancy loss, it is in most instances even more emotionally devastating than miscarriage because it occurs late in the pregnancy. By the time a woman has reached 20 weeks gestation, she has formed a relationship with the unborn child, and she and her partner have begun to envision a life that includes them. Thus, a stillbirth is no less psychologically impactful than the loss of an infant shortly after birth. The parents and extended family will feel shock and disbelief along with the intense pain of losing a child that they had already come to love.  

In almost 50% of stillbirths, the cause of fetal demise is never discovered, so the bereaved parents, especially the mother, can also experience a great deal of guilt and shame. And while medical providers have the opportunity to reassure them that nothing they did caused the fetus to die, in many cases they fail to provide the support, information and compassion the family needs. This lack of support can worsen and prolong their grief and exacerbate their anxiety about the prospect of future pregnancies. 

Depression and anxiety is also extremely common for both members of a couple following a stillbirth, occurring in about 50% of couples for up to 3 years after the death of the child. Most couples begin to experience some ability to return to “normal” life within about 18 months of the loss, but this varies a great deal. Complicated grief or prolonged grief disorder, in which the grief reaction lasts far longer and is significantly more intense than what is considered “normal”, is not uncommon and may be present to some degree in up to 60% of couples who experience stillbirth. A strong social support system and a good relationship between partners may help to mitigate the risk of complicated grief. Feeling seen and heard by friends, family and loved ones can also be a buffer against prolonged grief. Parents who feel that their loss is acknowledged and their grief validated are often more able to successfully navigate through this incredibly difficult time.  

Grieving Infant Loss 

The loss of an infant is an unimaginable tragedy and the grief that follows such a loss is profound and enduring. Deep pain and sorrow can permeate every aspect of the parents’ life and lead to profound feelings of loneliness, emptiness, and sadness. Many parents feel stigmatized and alienated from close friends and family, especially if they were in any way responsible for the infant’s death (for example, not providing a safe sleep environment). Even when parents are totally blameless, feelings of guilt and shame can drive them to isolate themselves from those who could offer comfort and support. 

The emotions experienced by parents who lose an infant can be complex and varied. Some may find themselves grappling with intense feelings of guilt or anger, questioning why this happened to them. Others may feel a sense of helplessness or despair, struggling to envision a future where happiness seems possible again. It is not uncommon for parents to experience symptoms of depression and anxiety following infant loss. Marital problems are also extremely common as bereaved partners struggle to support each other while also navigating their personal journey through grief. 

The grieving process after losing an infant is profoundly personal and unique to each individual. It’s important to remember that there’s no “right” or “wrong” way to grieve – each person’s grief will be as unique as the bond they had with their child. What is crucial, however, is acknowledging these feelings and seeking out support—be it through therapy, support groups, or conversations with loved ones.

It is also essential to remember that it is not just the parents who grieve the loss when an infant dies. Grandparents, siblings, and close friends may also experience a deep sense of loss and may need support and understanding as they navigate their own grief.

Ultimately, understanding and talking about the emotional impact of losing an infant is a crucial step towards healing. While the pain may never completely disappear, with time, compassion, and support, it is possible to find a path towards healing and hope.

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