Pregnancy & Infant Loss

Key Messages

Download and Print the Key Messages
These are the main health messages that should be conveyed to all future and new parents. They have been written in the second person and at a reading level appropriate for the general public so that they can be shared with them directly. They are based on a consensus founded in scientific research and professional practice. Clicking an underlined word or group of words in the text will redirect you to the section in Supporting Evidence that deals with that topic.

key message

Even though most pregnancies are problem-free, some pregnancies end in loss.

Even though most pregnancies are problem-free, it is estimated that one in four pregnancies ends in loss. The risk of miscarrying in the first 20 weeks of pregnancy is between 15 percent and 20 percent. It is less common for a loss to occur later in pregnancy.

key message

It is important that women seek medical care right away in case of a miscarriage or stillbirth.

When a woman miscarries (the pregnancy ends spontaneously before 20 weeks’ gestation) or has a stillbirth (gives birth to an infant with no signs of life at or after 20 weeks’ gestation), she needs immediate medical care to prevent complications. There are increased risks of bleeding and/or infection, which may put the woman’s health in danger.

key message

If a woman has experienced the loss of a pregnancy or infant, a visit with her health care provider can provide support and information.

A health care provider may be able to:

  • Help cope with grief.
  • Explain why the pregnancy ended or why the baby did not survive.
  • Discuss with the woman and her partner if and/or when they may want to become pregnant again.
  • Explore the risk of this happening in a future pregnancy.
  • Assist with accessing support or formal therapy.
  • Help describe their loss to other siblings, family members, friends, and co-workers.

key message

Learn more about pregnancy and infant loss.

The following are suggestions for where you can find more information about pregnancy and infant loss. More suggestions can be found in the Resources and Links section.

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Supporting Evidence



The supporting evidence is written in third person and is aimed at prenatal education providers. It is not intended to be shared directly with new and expectant families; it is meant to provide the background information and evidence for the key messages.

Not all the information provided in this section would necessarily be discussed in a typical prenatal education class setting. It is provided here to make the prenatal education provider aware of the process that a woman who has experienced a loss may have gone through. This in turn will enable the prenatal education provider to be sensitive to the issues surrounding the loss of a pregnancy or infant loss. They will also be better equipped to provide guidance if it is suspected or revealed that a client has experienced a previous loss.

About Pregnancy and Infant Loss

Defining pregnancy and infant loss

While the majority of pregnancies are problem-free and end with the birth of a healthy baby, some babies die during pregnancy or shortly after birth.
There are many different words used to describe pregnancy and infant loss. For this discussion, pregnancy and infant loss includes the following experiences:

Miscarriage
The death of a fetus within the womb occurring in the first 20 weeks of pregnancy, also known as spontaneous abortion.1,2,3

Stillbirth
The death of a fetus of more than 20 weeks’ gestation or with a birth weight more than 500 grams that occurs prior to the complete expulsion of or extraction from the mother.2

Neonatal death
The death of a baby who is born alive after 23 weeks’ gestation or with a birth weight more than 500 grams but dies within 28 days of life.4

Postneonatal death
The death of a baby between 28 and 364 days of life.2

Elective abortion
A medical procedure performed at the woman’s request to terminate a pregnancy.4

Medical (or therapeutic) abortion
A medical procedure performed to terminate a pregnancy due to a life-limiting fetal diagnosis (e.g., fatal syndromes, congenital defects) or a significant maternal medical concern (e.g., when continuing the pregnancy would be hazardous to the mother’s health).4,5

National and provincial statistics

Interpretation of the statistics and rates of pregnancy and infant loss is a challenging task owing to varying definitions at provincial, national, and international levels. In addition, some statistics and rates are reported per total births (includes stillbirths) or only per live births.

Stillbirth
Canadian perinatal health data indicates that there were 4.3 stillbirths per 1000 total births in 2001 compared to 3.8 per 1000 total births in 2010. However, this data excludes Ontario because of quality concerns.4 Ontario statistics for the same year showed 7.4 stillbirths per 1000 total births.2,4

Miscarriages/Spontaneous Abortions
Approximately 15 percent to 25 percent of pregnancies end in a miscarriage.1 However, this figure may actually be higher since many women who experience a spontaneous abortion may not even know that they were pregnant (i.e., may think that they have simply had a heavy menstrual period). In addition, some women may choose not to disclose their miscarriage to their health care provider.6,7

Pregnancy Terminations (medical or therapeutic abortions)
Pregnancy terminations are on the rise, with 0.3 per 1000 total births in 2001 versus 1.3 per 1000 total births in 2010 in Canada.4 This may reflect increased fetal diagnostic testing resulting in increased identification of fetuses with life-limiting diagnoses.

Neonatal Deaths
The rate of neonatal deaths in Canada has remained steady in the last decade – represented 76 percent of infant deaths in 2009, or 3.6 per 1000 live births.4 This is comparable to the rate in 2000, which was recorded at 3.4 per 1000 live births.

Investigations after loss

Important components of investigating a pregnancy or infant loss may include the following:

  • Case review.
  • Timely and thorough medical care.
  • Fetal examination and testing.
  • Autopsy.
  • Attention to psychosocial needs of both parents.
  • Discussion of future family planning.

See Appendix A for further details about investigations and care after loss.

Who is at Risk?

Risk factors and causes of pregnancy and infant loss

Although the exact causes of these types of deaths are often unknown, studies have shown that there are some risk factors associated with an increased risk of death. The possible main causes and risk factors associated with a fetal or infant death during the perinatal period are set out in Table 1.8

Table 1: Possible causes and risk factors associated with the different types of perinatal death

Possible causes
Miscarriage Stillbirth Neonatal death
  • Failure of the embryo or fetus to implant or develop normally in the uterus (e.g., wind-egg).1
  • Chromosomal anomaly.8
  • Abnormalities of the uterus.8

Note: A miscarriage is generally a chance occurrence and is not necessarily an indicator of infertility or of a health problem.1 For most healthy women, moderate physical exercise, working, or having sexual relations during pregnancy will not cause miscarriage.9

  • Congenital defects.10
  • Obstetric complications during pregnancy or birth (e.g., placental abruption, umbilical cord-related accidents, asphyxia).10
  • Medical conditions (e.g., high blood pressure, diabetes, autoimmune diseases).10
  • Infections.10
  • Maternal injuries (e.g., car accidents, falls).10
  • Congenital defects.
  • Obstetric complications during pregnancy or birth (e.g., asphyxia).11,12
  • Respiratory distress syndrome.11,12
  • Infections.12
  • Sudden Infant Death Syndrome.12
Risk factors
Miscarriage Stillbirth Neonatal death
  • Advanced maternal age.8 The risk of miscarriage is 20 percent to 50 percent from the age of 35 to 45; after 45, it is 50 percent to 75 percent.1,8
  • Smoking.3,8
  • Alcohol consumption (e.g., more than five drinks per week).
  • Drug use (e.g., cocaine, heroin).3,8
  • Medical conditions or health problems (e.g., obesity, poorly-controlled diabetes, high blood pressure, thyroid disease, infections).1,8
  • Personal history of miscarriages.8
  • Advanced maternal age. The risk of stillbirth is twice as high after the age of 35.10
  • Smoking.8,13,14
  • Alcohol consumption (e.g., more than five drinks per week).
  • Drug use (e.g., cocaine, heroin).10,14
  • Obesity.10
  • Primiparity (a woman who is giving birth for the first time).8,13
  • Multiple pregnancies.10
  • Personal history of stillbirth.10
  • Intrauterine growth restriction. (IUGR)10,15
  • Prematurity.11,12
  • Smoking.8,2
  • Obesity.
  • Multiple pregnancies.12

Coping with Pregnancy and Infant Loss

The uniqueness of pregnancy and infant loss

Grief

Death at the beginning of life is unique. There is the sense of the loss of the future, the loss of dreams, and perhaps a loss of fertility if there was an ectopic pregnancy or serious intrapartum or postpartum complication. When the loss occurs further along in gestation, it may be especially challenging as the pregnancy is visibly apparent and the parents may face more questions from others. Indeed, parents have lost their baby and have few, if any, memories to cherish or to share.

Grief is a normal, healthy, healing, and loving response to the loss of a loved one. As the grief journey is individual and variable, it may be challenging to define when grief is prolonged or complicated. Grief reactions are not based on gestational age, age of the infant, economic status or educational level within the family, number of losses, or number of living children. The amount of social support received during the experience of pregnancy and infant loss has an impact on the grief reaction and its trajectory. When women and their partners receive support that is sensitive and caring from health care professionals, and positive social support from family and friends, they describe feelings of their grief being validated and the loss acknowledged.6,7,16,17,18,19

A woman may feel that her body has failed her, that she is to blame for the pregnancy loss or infant death, and that she has failed her partner. A woman may question her ability to be a mother to existing or future children and wonder if she is deserving or worthy.6,7,20 Moreover, stillbirths are frequently sudden in nature, and occur within a woman’s body and thus are an invisible death, an often overlooked tragedy.5,6

It should be noted that not all women and/or partners will feel that a spontaneous abortion or miscarriage represents the death of a baby.  Regardless of what meaning they ascribe to the loss, they deserve the same degree of attention and support from health care professionals.21,22

It is important to be aware that the degree of attachment is not related to the length of gestation.23,24 The loss of a pregnancy early in gestation is a loss that lacks a tangible nature. This can be compounded when the gender of the baby is unknown. There is a lack of memories and time spent together, and few opportunities to parent the baby or create memories with them.17,20,25,26,27

Whether the pregnancy was a few weeks or several months along, the care provider should understand the significance of attachment and the loss to the parents and provide bereavement support accordingly.

See Appendix B for more information about perinatal bereavement.

Multiple births

The rate of multiple births is on the rise in North America and is related to several factors. The two most prominent factors are the use of assisted reproductive technology to conceive and advanced maternal age at the time of conception.7 As women age, their rate of conceiving spontaneous twins also rises. Multiple births place a higher burden on maternal health and on the health care system itself.

Parents of multiples

Parents of multiples face a unique situation when one, or more, of their babies dies. Occasionally, one of a set of multiples will die in utero. Unfortunately, it is more frequent for one of a set of multiples to die in the Neonatal Intensive Care Unit (NICU) setting after a premature birth. The overall fetal mortality rate for multiple births in Canada in 2010 (excluding Ontario) was 15.9 per 1,000 total births as compared to 6.4 per 1,000 total births for singletons.4

When parents experience the death of a multiple, they may feel conflicting emotions, as they are torn between grieving the lost baby and feeling joy at the survival of the other. They may feel additional fear, ambivalence, guilt, and helplessness. They may fear becoming attached to the survivor for fear of the loss of that baby as well. Parents will feel guilty about being happy when they feel that they should be sad for the death of one twin. Caregivers should acknowledge that the feelings parents are experiencing are normal, and should offer opportunities that provide support and time for parents to voice their concerns.

How is pregnancy and infant loss experienced?

Grief is not an illness but rather a normal, universal reaction to the loss of a loved one. Various theoretical models explain how bereavement is experienced for all types of loss, not just perinatal.18,25,28,29 The best known is the stages of grief model featuring different emotional responses.30

Emotional responses to bereavement and loss

Grief can be conceptualized as a dynamic process during which an individual goes through stages marked by different emotional responses, The best-known theory of grief is that of Elisabeth KĂĽbler-Ross whose original work is published in On Death and Dying (1969), This theory grew out of her work with terminally ill patients, and were the experiences of those who were dying, not the surviving loved ones.31 KĂĽbler-Ross proposed that there are five stages of grief: denial, anger, bargaining, depression, and acceptance. These responses may overlap and are not necessarily experienced in the same order or with the same intensity by everyone. However, grief is not linear or driven by a timeline. A person may, therefore, move from one stage to the next and then go back to a previous stage.6,16,25,31,32

See Appendix C for a detailed discussion of the stages of grieving and perinatal loss.

Factors affecting the duration and intensity of grieving

It is hard to say how long perinatal grieving lasts.18,19,33,34 It is generally estimated that the intensity of grief responses is strongest in the six months following the death and then decreases.32 For those experiencing pregnancy or infant loss, studies reflect a prolonged period of grief as within the normal anticipated process.21,35,36A recent study found that initial high grief scores began to decline over the first 12 months.25 At a two-year followup, 41 percent showed a reduction in grief scores towards a normal level, while 59 percent maintained an extended pattern to their intense grief and delayed resolution.

It is also common for grief responses to reappear with surprising intensity on special occasions, especially during the period around the baby’s birthday, the anniversary of the baby’s death, or during special holidays.6,26 There may be unexpected triggers for the return of grief such as seeing another person’s child at the age the lost baby would now be,25 or realizing a certain day would have been the first day of school for the lost baby. Researchers and professionals agree that perinatal grief is very personal and is experienced differently from one parent to the next.

The death of a baby is a difficult experience in the life of a parent. It is normal for the parent to grieve and to feel a whole range of emotions during that period. The parent may also have difficulty performing his or her daily activities for some time.

It is vital not to assume the degree or extent of grief or loss that a parent is experiencing. Every pregnancy or infant loss is different, but still constitutes a loss.

In short, although there is more than one way to experience grief, health care professionals are encouraged to pay close attention to parents who display the following signs:

  • Those whose emotional responses do not fluctuate from one stage to another or who seem stuck at one stage.
  • Those whose emotional responses remain very intense and last several months.37

See Appendix D for further details on the signs and symptoms of a more difficult grieving process.

Features of the emotions experienced with the termination of a pregnancy

The termination of a pregnancy is often very difficult. In contrast to other types of pregnancy loss, a medical termination is a planned, or intended, loss.7,24,38 After the procedure, there is a complexity of grief responses. Parents may feel relieved, angry, ashamed, or responsible for causing that baby’s death.6 The experience of loss in this situation is no less devastating than spontaneous abortion or stillbirth, and these parents need the support of nonjudgmental health care professionals to help them grieve their loss, provide moments to parent their baby and create mementos, and the opportunity for performing rituals such as baptism, blessings, and services of remembrance or funerals.

Professionals are encouraged to factor these specific emotional responses into their approach to treatment.

Differences between the grief responses of women and men

Although parents may share the experience of losing a baby, studies show that women and men do not experience their grief the same way.16,19,25,33
Current family structures are variable and are what the bereaved describe as meaningful to them. The bereaved family may not comprise a woman and a man but instead two women or two men, including any other significant individuals whom they may choose. Whatever the structure of the grieving family, unique and individual grief responses should be anticipated.16,19,35,39

According to available research, initially, women and men go through the process of forming an emotional bond with their baby differently. In general, women bond emotionally with their baby from the first trimester of pregnancy (sometimes even before conception), whereas men begin to form that bond towards the second or third trimester.7 At the beginning of the pregnancy, the father’s bond with the unborn baby is more likely to be an intellectual rather than an emotional one, unlike the mother’s bond.7

Women and men also tend to have different emotional responses and to use divergent coping strategies.16,19,35,39 Table 2 illustrates the differences commonly observed between women’s and men’s reactions to the death of their baby. It also shows the strategies generally used to manage their emotions.

It should be noted that this research was based on more traditional definitions of gender and did not specifically include parents with non-traditional gender identification or sexual orientation. Such parents may experience additional distress when generalizations do not match their lived experience.

Table 2: Differences between the grief responses of women and men

Emotional responses
Women Men
  • Responses that appear more intense because she carried the child and may have developed a stronger emotional bond.19,35,37,39,40,41
  • Feeling of failure, shame, or guilt for not being able to carry the pregnancy to term.6,12,19,39
  • Feeling of having disappointed her partner or family and friends.6,12,19,39
  • Feeling of emptiness or of having lost a part of herself.6,12,19,39
  • Doubts about her ability to conceive a child and anxiety about the next pregnancy.15,32,33,42
  • Perceived less intensive grief response due to the social role expectation as supporter to their partner.43,44
  • Feeling of isolation because his grief is often overlooked by family and friends and attention is usually paid to the woman.33,37
  • Feeling of helplessness.37
  • Damage to his identity as the family’s protector and provider.32,33,37
  • Less likely to cry or want to talk about the loss repeatedly.25
  • More likely to internalize or deny their grief or attempt to distract themselves from the loss.25
Coping strategies
  • Needs to share her feelings and talk about the baby often.12,37,42
  • Seeks support from her partner, family, and friends.33
  • “Tough guy” attitude.37,39,42
  • Does not want to talk about the event.12,37,39
  • Tendency to suppress his feelings or to keep them private44 (his reaction sometimes emerges months or even years after the baby’s death).12,37,39
  • Instrumental role (e.g., signing papers) and role supporting his partner.6,32,37
  • Quickly returns to his usual activities but not always by choice.19,37
  • Often has to be the communicator, the one to tell the story to family, friends, and strangers.37,40
  • Takes refuge in work, sports, or alcohol consumption.37,39,40

Impact on the couple

The death of a baby may be the first major crisis many couples go through.37,40 If they are not experiencing the stages of grief at the same pace or with the same intensity, this challenge may bring them closer together or estrange them at different points in the process.

Impact on the other children in the family

The children’s reactions depend on their understanding of death, which varies depending on their age and developmental stage.41,45 Children may worry that whatever happened to their baby sibling will happen to them also. This underscores the importance of the language used to describe the death to them. It is critical to address the needs and worries of other siblings and children in the family when a baby has died.

Subsequent Pregnancy after a Loss

The right time

Parents who experience pregnancy and infant loss often wonder how long they should wait before attempting another pregnancy. Individual circumstances will vary; therefore, it is advisable that families discuss this with their health care provider. They may be encouraged by their health care provider to have another child as soon as possible or, on the contrary, to wait until they have recovered physically and emotionally from the death.12,33,34,40 To date, there are no medical guidelines on the optimal time to attempt another pregnancy after a perinatal death.34

Most parents (50 percent to 86 percent) will have a subsequent pregnancy.12,18,32 For some women, the next pregnancy is a positive experience and reduces the duration of grieving.12,18,27,32,33,34,46 However, a subsequent pregnancy causes other women to relive the loss of the previous pregnancy, resulting in symptoms of anxiety and depression.27

Emotions experienced during a subsequent pregnancy

Increased anxiety

Many women worry about losing another baby and show symptoms of anxiety or hypervigilance during a subsequent pregnancy.22,27,41,42,46,47,48,49

There may be significant changes in the relationship they have with the subsequent child if the grief and loss they experienced with their previous loss go unaddressed. It is difficult for them to view the pregnancy as an event that may unfold without any problems and to imagine that their next baby will be born alive.43,48 This fear may make them wait a long time before announcing the pregnancy or avoid making preparations for the baby’s arrival (e.g., avoiding buying clothes for the baby, preparing his or her room, taking part in prenatal classes, etc.).

The last trimester of pregnancy is a particularly anxious period for mothers who have previously lost a baby, with many associating birth with death. One study reported significantly higher levels of anxiety and Post-Traumatic Stress Disorder (PTSD) antenatally in partners, but once their infant was born alive, their symptoms disappeared.32

Feelings of ambivalence

Many mothers report being afraid to form an emotional bond with the next baby for fear of another loss.18,33,43,48 Others have difficulty forming a bond because they are still grieving for the previous baby, worry they will forget the baby who passed away if they are no longer sad, or feel guilty about replacing that baby with another one.47,48

A partner may also feel anxious during a subsequent pregnancy and worry about the well-being of the partner and of the baby. Some may cope with this situation by cutting themselves off emotionally from the situation, while others may feel the need to control and monitor the pregnancy closely.18,32,33,34

A subsequent pregnancy does not make parents forget a baby they have lost. Parents need to talk about their feelings towards the lost baby and also towards the unborn baby. The role of professionals is to help parents to determine whether they feel ready for another pregnancy, to explore the emotions that come with another pregnancy, and to give them the support and reassurance they need.41,42

Treatment for those experiencing Pregnancy and Infant Loss: What You Need to Know

Limited research has been done on the treatment of families going through a pregnancy or infant loss because of the ethical challenges of research in this area. Most of the literature is based on the experiences of health care and social services professionals and on how bereaved parents perceive the services they received.

Anecdotal feedback to support services such as Pregnancy and Infant Loss Network (PAIL Network) reveals that varying types of support are helpful at different points in the grief experience and that support needs to be highly individualized. Other organizations offering support to bereaved parents experiencing pregnancy and infant loss are presented in the Resources and Links section.


Lack of evidence-based protocols

Currently, Ontario has no well-established treatment protocols for pregnancy and infant loss. Some hospitals have perinatal bereavement committees or working groups to help create policies and procedures in order to offer the most consistent and supportive care possible.

Not-for-profit charities are striving to create consistency in the support parents receive after loss through educational programs, printed materials, and websites.

The work of PAIL Network and its peer-led support groups has shown that support to bereaved parents does make a difference.

What parents may find helpful

Contact with the deceased baby

At present, there is not enough scientific evidence to determine the effectiveness of the different approaches to treatment for perinatal bereavement,19,40,48,49 but empirically we know that the effect of having the parents see their baby is powerful. Most parents who have seen or touched their baby generally say they are satisfied with this approach, and very few express regret.22,27,48,49,50 However, some studies show that contact with the deceased baby may increase some women’s symptoms of anxiety and depression during a subsequent pregnancy.22,48,49

Other studies have examined the impact of parental contact with their baby following stillbirth.22,48,49 Some parents will want to see their baby as soon as it is born, but if not, and they choose to see their baby later, it is important to prepare parents about how the baby will look, describing, for example, the baby’s colour, size, and any skin damage or abnormalities.

Parents have stated that seeing and holding their baby after death offered a confirmation that they are a parent as they have the opportunity to parent their baby in actions such as bathing, dressing, and introducing them to family and friends. Other authors reflected that while parents found the interaction difficult, they cherished the time spent with their baby and the shared experience with their partner. Any opportunity for them to parent their baby should be offered as this is their only chance.

Memorial photography

Parents have stated that seeing photos of their baby provides concrete evidence of their existence, makes the baby’s life more real to them, shows the baby’s placement within the family story, and reflects their love and the meaning of their loss to themselves and to others.27,47,50

While postmortem photography has become a standard of practice in pregnancy and infant loss care in many hospitals, this practice must only be done with parental consent, respecting the cultural and religious beliefs of the family to decline.

Opportunities to parent their baby

For many families, being offered choices and deciding for themselves what services they wish to receive is critical, because it gives them some control over the events9,40,46 and enables them to parent their baby. It is suggested that professionals help parents make informed choices, support their decisions, and avoid pressuring them to take one particular approach.48,49

Repetition to a certain degree is helpful, as the shock and numbness of the early phase of loss may impact their ability to make decisions or to remember what was offered to them. Health care and social services professionals may think that they are protecting the parents from further pain by making decisions for them, but they need to be involved and their autonomy needs to be preserved.9,48,49

Supporting bereaved families: the parents' perspective

It is not easy to know how to react to the parents’ loss and to their feelings. Health care and social services professionals are often the first to respond to the parents during this painful experience, and they must be aware of the impact of their care and support.

Professionals’ values and their personal attitudes toward death may affect their ability to care for parents who are coping with the death of their baby.51,52 It is important for health care professionals who are in close contact with the bereaved couple in the immediacy of the loss to take a moment for self-reflection. The way in which professionals respond to the parents or support them during this period may also make it easier for the parents to get through their grief and effect how they remember their experience.9,34,48

When asked, many parents indicate that the following six approaches helped:

  • Acknowledging the loss.
  • Communicating effectively.
  • Respecting cultural and spiritual practices.
  • Coordinating postnatal care services.
  • Offering emotional support.
  • Providing information.
Acknowledging the loss

Parents feel that one of the most important aspects for them is that professionals acknowledge their loss irrespective of the deceased baby’s age or gestational age. When it comes to talking about the death of a baby, people seldom ask. They may be afraid of causing the couple more pain, or they simply do not know what to say. Parents want and need to talk about their loss and their baby, and they want others to remember the baby. In some situations, especially when a woman experiences her loss away from her home community, the professional who has the privilege of providing care at the time of the loss is the only person other than the parent(s) to ever see and know their baby.

Communicating effectively

Many professionals consider a miscarriage to be a medical situation that poses no health threat and use terms such as “product of conception” or “embryo,” which may dehumanize the baby in the eyes of the parents. It is, therefore, important to pay attention to the words the parents use when they talk about their situation of loss and to use the same terms in exchanges with them.21,40,46 Take the approach to actively listen to their words (i.e., how they express the meaning that this pregnancy or infant had in their lives), and this will offer the caregiver direction about how to help them or what services to offer.

See Appendix E for further information on how to communicate with grieving families.

Respecting cultural and spiritual practices

It is important for professionals to be mindful of the family’s cultural or spiritual practices27,43,46,48 in order to avoid misinterpreting a response that would be considered normal in a specific cultural setting. To the extent possible, all aspects of care provided should be done within the context of the family’s cultural and/or spiritual values.

Consider asking the family a few key questions such as:

  • What would be an important tradition in your family at a time of a death or loss?
  • How do you wish your baby to be acknowledged within your family?
  • Are there meaningful rituals you wish to carry out or ask about?
  • If you have a ceremony, who would you like to be present during the ceremony?

For more information about the cultural and spiritual aspects of perinatal bereavement see the Resources and Links section.

Coordinating postnatal care services

Ensure that the baby’s name has been removed from any programs that offer follow-up programs such as Healthy Babies Healthy Children (HBHC) program and the local breastfeeding clinic. For those babies who have died after a time period in the NICU, it is also important to ensure that the neonatal follow-up program associated with the hospital does not call to enquire about a missed appointment. Consider offering to inform the family physician/nurse practitioner if either has not been involved in pregnancy care.

Offering emotional support

Parents generally need support after being told that their baby has died. In their shock and numbness, some are unable to realize this need for support. The following suggestions can be helpful when offering emotional support.

  • Listen, be available, and be attentive.
    Parents appreciate it when professionals take the time to listen to them or simply to be there with them. They need to be supported to show their emotions, to cry, or be angry, and for professionals to hear what they have to say with compassion and without judgment.12,34,46 Conversely, parents say they feel more distressed when they sense that professionals are avoiding them (e.g., avoiding the family or avoiding talking about the death) or are being insensitive (e.g., forgetting that the baby has died).9,19,45
  • Support the parents in telling family and friends about the death.
    Parents, often the father or partner, have the sad task of repeatedly explaining what has happened to family and friends, at a time when they are often in shock, confused, or in distress themselves.22 The professional can help them decide how they are going to tell loved ones that the baby has died and support them in coping with people’s reactions.12,16,49,53
  • Find sources of support and come up with coping strategies.
    Professionals can help parents find and use the sources of support available to them (e.g., family members, friends, co-workers, and support groups), as well as coping strategies that have helped them in the past.6,7,45,52
Providing information

Professionals may be asked to repeat the same information multiple times because the parents’ emotional state may make it difficult for them to understand and retain the information.

Provide parents with written information (e.g., pamphlets or booklets on pregnancy and infant loss) on the following topics.

  • Coping with the physical changes after the birth.
    Women will need information about the physical effects of the birth at the beginning of the postnatal period (e.g., copious bleeding or cramps after curettage, exhaustion after a long and difficult labour, pain after a C-section, and milk let-down).29
  • Care of their breasts.
    Women are often unprepared for breast changes that occur after a miscarriage or still birth. Lactogenesis ll or the onset of milk production begins soon after birth even when the fetus/infant dies. The traditionally approach has been to suppress lactation by avoiding any stimulation or expression of milk from the breasts. Comfort of the woman should be the mail goal. Two main approaches include (Wambach, K. Riordan, J. (2016) Breastfeeding and Human Lactation. Jones and Bartlett Burlington MA):

    • Comfort measures including a firm (but not tight) bra, cold compresses, anti-inflammatory medication and minimal expression with decreasing frequency
    • Milk donation. Some women choose to begin or continue to express their milk to donate to a human milk bank to honor the memory of their baby. Assist mothers to access information about milk banks. Most banks waive their minimum donation requirement in the case of a bereaved mother but mothers need to go through the screening process.
  • Women need to give their body time to adjust whether or not they were producing milk. Engorgement, or becoming full is part of the process of involution. However, severe engorgement is unnecessary. If they do not take care of their breasts, serious engorgement or infection (mastitis) may occur.
  • Coping with grief.
    Parents like to be given information about the emotional responses they may have during this difficult time.9,40,45,49 It can be helpful to provide information about the differences between women’s and men’s reactions in order to cultivate support between the partners.33,37,39,41
  • Signs of distress to monitor.
    It is suggested to provide parents with information about the symptoms that may indicate the need for more formal care in the days, weeks, or months following the death (see Appendix D).
  • The causes of death.
    Parents generally want to understand what caused their baby’s death.14,38,54 They need to know that they did everything they could to protect their baby and to carry the pregnancy to term. In most cases, the information they desire will not be immediately available, especially if an autopsy is to be performed. The most informed provider should deliver the information. All team members should work collaboratively to provide information.
  • Parental leave.
    The Employment Standards Act (2000) provided information regarding pregnancy and parental leave. Both new parents have the right to take parental leave of up to 35 or 37 weeks of unpaid time off work after a live birth. Officially, an employee who has a miscarriage or stillbirth, or whose partner has a miscarriage or stillbirth, is not eligible for parental leave. However, some may be eligible for disability leave, and this will need to be individually assessed.
  • Funeral arrangements.
    The available funeral options (e.g., cremation, burial) vary from one health care institution to the next and from one community to the next. Professionals can inquire about the services offered in their patient care unit. Irrespective of the age and weight of the deceased baby, they can review with the family the options most suited to their preferences and cultural or spiritual traditions.
  • Resources.
    Informing parents of the various resources that may help them work through their grief is recommended. For example, it is possible to refer them to a professional, such as a psychologist or social worker, for follow-up care. Treatment programs specializing in perinatal bereavement are also offered across the province; there are also support groups or forums for bereaved parents on different websites (see Resources and Links ).

Resources for Support

The death of a baby affects the whole family, but every individual may react to the loss differently. Some people may need to talk about what they are going through, while others may not want to talk about it. It takes time to grieve, and the way people grieve is very personal.

When to refer

Referrals are recommended when there are several risk factors associated with complicated bereavement.

  • Symptoms of an adjustment disorder, such as depression (refer to the file on Mental Health) or a state of post-traumatic stress (refer to the file on Abuse).
  • Inability to function and to perform daily activities (e.g., changes in appetite, changes in self-care, insomnia).
  • Suicidal thoughts.

Where to refer

Encourage women and families to contact:

  • Their primary health care provider for initial followup for concerns about significant psychological or emotional distress which may lead to self-harm or harm to others. If there is an immediate concern of self-harm or harm to others, arrange for transportation to the nearest emergency department or call 911.
  • Their local Public Health Unit or Telehealth Ontario for resources in their community.
  • Pregnancy and Infant Loss Network (PAIL Network) where free, peer-led support services are offered for parents and families by telephone, email, one-to-one support, and in small groups that meet monthly or bi-monthly. PAIL Network is able to link volunteer peers to bereaved parents based on their specific experiences or needs surrounding the loss, (e.g., Grandparent to Grandparent phone support).
  • Bereaved Families of Ontario (BFO) for local chapters and support meetings.

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Resources & Links



Please note this is not an exhaustive list of available resources, nor should any of these resources be used in place of seeking professional advice. The resources cited throughout this resource are not necessarily endorsed by the Best Start Resource Centre or the Government of Ontario. When in doubt, professionals should contact the organization responsible for issuing a specific recommendation/practice guideline.

Professional Guidelines

Reports/Publications

  • Chichester, M. (2005). Multicultural issues in perinatal loss. AWHONN Lifelines, 9 (4), 312-320.
  • HĂ©bert, M.P. (1998). Perinatal bereavement in its cultural context. Death Studies, 22, 61-78.
  • Waxler-Morrison, N., Anderson, J., & Richardson, E. (eds). (1990). Cross-cultural caring: A handbook for health professionals. Vancouver: UBC Press.
  • Cultural Awareness

Websites

Helplines

Prenatal Education Provider Tools

Client Resources and Handouts

Books

  • Berger, S. A. (2009). The five ways we grieve: Finding your personal path to healing after the loss of a loved one. Boston: Trumpeter.
  • Davis, D. L. (2014). Stillbirth, yet still born: Grieving and honoring your precious baby’s life. Golden, CO: Fulcrum.
  • Davis, D. L. (1996). Empty cradle, broken heart: Surviving the death of your baby. Golden, CO: Fulcrum.
  • Hanish, S. & Warner, B. (Eds). (2014). Three minus one: Stories of parents’ love and loss. Berkeley, CA: She Writes Press.
  • KĂĽbler-Ross, E. & Kessler, D. (2005). On grief and grieving: Finding the meaning of grief through the five stages of loss. New York: Scribner.
  • McRae-McMahon, D. & Metrick, SB. (2014). Rituals for life, love, and loss. New York: Hunter House.
  • Stang, H. (2014). Mindfulness and grief: With guided meditations to calm your mind and restore your spirit. New York: CICO Books.
  • Stewart, A. & Dent, A. (1994). At a loss: Bereavement care when a baby dies. London: Baillière Tindall.
  • Tappouni, T. (2013). The gifts of grief: Finding light in the darkness of loss. San Antonio, TX: Hierophant Publishing.

Videos

Apps

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Appendices

Appendix A: Investigations and care following loss.

After any pregnancy loss, a thorough case review by a woman’s primary health care provider should include:

  • Family history.
  • Maternal medical history.
  • Maternal obstetrical history.
  • Current pregnancy status.
  • Use of medications and recreational substances.
  • Close examination of the placenta, membranes, and umbilical cord, as well as the fetus itself.

Medical care following a spontaneous abortion/miscarriage
If pregnancy loss has occurred outside of the hospital setting, it is important for the woman to receive a physical exam as soon as possible to determine if there has been complete expulsion of the fetus, membranes, and placenta. In early pregnancy, blood tests and/or ultrasound examination is required to confirm that the uterus is empty. Retained fetal tissues and/or placenta fragments, or an incomplete abortion, increase the risk of bleeding and infection, which may be life-threatening and can impact future fertility. Thirteen percent of maternal mortality is related to unsafe abortions,55 but this is rare in Canada.

Stillbirth investigations
The cause of a stillbirth is frequently unknown. It may be challenging to determine causation when a complex series of events has preceded the stillbirth itself.54 The Society of Obstetricians and Gynaecologists of Canada (SOGC) recommend that there are five plausible categories to organize causes of stillbirth: genetic, maternal systemic, infectious, placental and fetal pathology.54

Fetal investigations
The infant should be examined at a time appropriate for the grieving parents. Most of the following tests have no specific urgency, but will need to be done within the first few hours before rigor mortis begins.
Potential testing to include14,54

  • Blood culture for bacteria, virology, and fungus.
  • Blood/tissue for karyotype.
  • Radiographic studies.
  • Physical exam including weight, head circumference, and length.
  • Biopsy of certain tissues may be appropriate.
  • Medical photography.

Autopsy
Parents who have experienced pregnancy or infant loss will likely have questions about why the loss occurred. An autopsy or postmortem examination of the fetus and placenta is usually offered in any situation where fetal loss, stillbirth, or neonatal death is not associated with a known chromosomal malformation or obvious obstetrical complication such as umbilical cord accident (e.g., true knot or entanglement) or fetal hemorrhage.38 The physician or most-responsible provider who ordered the autopsy is responsible to complete followup with the family once results are known. All findings should be discussed as there may be an impact on future pregnancy management, a need for further testing, a referral for genetic counselling, and/or referral for supportive services.9,38,56

Psychosocial care following pregnancy loss
A woman may experience considerable physical as well as emotional pain after a pregnancy loss and, therefore, must be assessed and treated appropriately. A health care professional should assess the woman’s reaction to the loss in order to initiate supports as needed.

Family planning following early loss
In 1994, “post abortion care” was identified internationally as a key strategy to reduce maternal mortality and complications of incomplete or unsafe abortion and miscarriage.56,57 Since fertility returns with two to three weeks, family planning and contraception are key to breaking the cycle of a repeated pregnancy at an early interval following loss. As such, family planning counselling and services should be offered to all women who present with emergency obstetric or post abortion care regardless of treatment type or location.14,54 Post abortion family planning benefits not only the woman but also her family, the community, and the health care system by optimizing use of modern contraception and reducing unplanned/unintended pregnancies, maternal and child mortality, and mother-to-child HIV transmission.14,54

Appendix B: Perinatal bereavement.

Perinatal bereavement differs from the grief felt for someone who dies later in life and is a particularly difficult experience for the parents for the following reasons:

  • The unexpectedness of the death.
    No parent is prepared to lose a child before or after the child’s birth. There may, therefore, be a traumatic aspect to this type of death.5,6,15, 44
  • The emotional bond with the baby.
    The process of forming an emotional bond with an unborn child begins at different times for every parent. For most parents, that bond develops well before the baby is born, especially from the time the first fetal movements are felt, and sometimes even from the pregnancy planning stage.11 Ultrasounds allow parents to hear their baby’s heartbeat or to see an image of the baby, often quickly making them feel like the baby is part of the family.23,51
  • Multiple losses.
    The death of a baby results in simultaneous losses that may affect the parent’s sense of identity or self-esteem, for example, the loss of the status associated with motherhood or the parental role, the loss of plans, and loss of a future with their child.5,6,19,35,53
  • The lack of concrete memories.
    Few tangible memories are connected to the baby who dies before birth. The loss may seem unreal and, therefore, be more difficult for the parents to overcome.6,19
  • The lack of social recognition.
    Although the pregnancy was real to the parents (i.e., they alone knew the baby, perhaps gave the baby a name), they may receive little social recognition after the baby’s death.5,6,19 There will not necessarily be a birth certificate, death certificate, or funeral, to acknowledge the existence of a baby who died too soon. This may make the parents feel as though there is no trace of their baby.5,6,36 Finally, because the people around them did not know the baby, they are often unaware of the depth of the parent’s emotional bond with the baby, and many feel uncomfortable discussing the loss with the parents.5,6,19,35

Appendix C: Stages of grieving and perinatal loss.

KĂĽbler-Ross proposed that there were five stages of grief.

  • Denial.
  • Anger.
  • Bargaining.
  • Depression.
  • Acceptance.

These stages may provide a point of reference for identifying the responses commonly observed in the bereaved regardless of the type of grief not just that experienced through perinatal loss. However, some dispute Kübler-Ross’ stages of grief and favour a less-rigid approach which emphasizes an individualized, non-prescribed path or journey of grief, especially in the experience of pregnancy and infant loss.6,31,32,58

KĂĽbler-Ross and Kessler reflect on how the original five stages have evolved over time. Most importantly, they comment that the intent of those stages was not to make grief fit into neat packages but rather to demonstrate the responses to the death of a loved one.31 Further, these authors acknowledge the uniqueness of the grief journey; that as no loss is a typical loss, there is no typical grief either. The stages are responses to feelings that may last minutes or days as the bereaved moves between them, possibly returning to a stage but perhaps moving on to another.6,31

The following emotional responses are typical of the stages of grief as might be seen in those who have experienced a pregnancy or infant loss.

Denial.

  • Shock and numbness.
  • Denial that the baby is gone.
  • Disbelief in this reality.
  • Confusion.
  • Still feeling pregnant or feeling that the baby is moving.

Anger.

  • Anger, crying, screaming.
  • Guilty party sought, self-blame or blaming of others.
  • Loss of control.
  • Searching for a cause.
  • Feeling of unfairness.
  • Anger can be strength and give temporary structure to the nothingness of loss.

Bargaining.

  • “If only…” statements.
  • Guilt, feelings of helplessness.
  • Bargain with the pain – do anything to not feel the pain of the loss.
  • Time of solitude.
  • Frustration, jealousy of other parents.
  • Nostalgia, remembering.

Depression.

  • Despair.
  • Awareness of the loss.
  • Emptiness, aching arms.
  • Sadness, withdrawal from social interaction, withdrawal from everyday activities.
  • Symptoms of depression may include suicidal thoughts.
  • Insomnia, loss of appetite, difficulty concentrating.
  • Disorganization.

Acceptance.

  • Support sought from family and friends or others who have experienced a similar loss.
  • Interest in life and the desire to have another child.
  • Some meaning has been given to the loss.
  • Often confused with perceived completion of the grieving, but rather it is accepting the reality of the loss, incorporating the loss into the family story.

Appendix D: Potential problems associated with pregnancy and infant loss.

Disenfranchised grief
Disenfranchised grief is grief that fails to be recognized or acknowledged socially for its significance.12 Disenfranchised grief may lead to complicated bereavement if the loss is not recognized, and the parent feels that their baby’s death is not validated or real.34,37

Most parents who lose a baby during the perinatal period get through the experience with time, but they never forget the loss and must come to the point where they are able to create a new future without their baby. Some parents may find the loss of a baby particularly difficult. Approximately one in five parents may have a more difficult grieving process and suffer from adjustment disorders, such as depression, post-traumatic stress, or complicated bereavement.37,40,45,52

Complicated bereavement
When a woman experiences incongruence between her affect and the social responses she receives, this may lead to pathologic grief, or at least, a more complicated bereavement journey.6 Complicated bereavement is marked by obstacles to the grieving process. Unlike the emotional responses seen in normal grieving, which gradually diminish over time, those seen in complicated bereavement persist or grow worse. The parent does not go through the different stages of grief: his or her emotional state seems to be stuck at one stage.48 Longitudinal studies of perinatal loss and recovery show a trajectory of grieving over a 12-month to 24-month period.25 Parents facing infertility and unintentional pregnancy loss have additional risk of chronic grief associated with their perceived failure to conceive and/or their inability to carry the pregnancy to viability.7 These couples, particularly the woman, are at risk of complicated grief due to their pre-existing experiences of loss and grief over infertility compounded by the pregnancy loss.

Symptoms of complicated bereavement
In order for bereavement to be “complicated,” the following symptoms must be present for at least six months after someone’s death and cause problems functioning socially and professionally.20,37,38

  • Persistent and extreme feelings of nostalgia relating to the deceased.
  • Excessive feelings of bitterness, anger, or guilt (e.g., blaming himself or herself for the person’s death, self-deprecation).
  • Agitated, unstable, or irritable mood.
  • Difficulty accepting the death and carrying on with life (e.g., difficulty forming new interpersonal relationships).
  • Inability to trust others since the death.
  • Emotional detachment towards others or apparent lack of grief (e.g., a parent who always says that everything is fine).
  • Feeling that life is empty and that it no longer has any meaning or purpose.
  • Avoidance of situations or people who remind the person of the death.
  • Neglect or deterioration of the person’s physical health.
  • Risk-taking or self-destructive behaviours (e.g., drug or alcohol use, suicide attempt).

Appendix E: Communicating with grieving families.

Tables 1 and 2 provide examples to guide communication with this clientele, based on the scientific literature and the experience of professionals who work with bereaved parents.
Table 1

DO DO NOT
  • Listen more than you talk.
  • Ask the parents what would be meaningful to them right now.
  • Give the mourner (parent) permission to grieve their child.
  • Answer questions honestly* or refer to the most-appropriate person.
  • Offer practical assistance such as food, child care for other siblings.
  • Show genuine caring.
  • Use “I wish…” statements.
  • Be present with them.
  • Contact them when you say you will.
  • Return to their room when you say you will.
  • Ask permission to be present at special rituals or moments of introduction to other family members, goodbyes.
  • Ask permission for photography, mementos such as hair, hand and foot moulds, handprints and footprints.
  • Use simple and straightforward language.*
  • Show emotions (as long as the focus is on them and not on you).*
  • Listen to the parents* and let them talk about their grief or their child.
  • Reassure them that they will not be alone, unless they wish to be.
  •  Be a quiet and reassuring presence in the room.
  • Use touch.
  • Dominate the conversation.
  • Use clichĂ©s.
  • Pass judgment.
  • Change the subject.
  • Give medical advice without knowledge.
  • Use medical jargon* or terms such as “product of conception,” “embryo,” or “fetus.”
  • Tell the parents what they “should” think or feel.
  • Confront or argue with them.
  • Avoid their questions for fear of frightening them or of distressing them further.*
  • Take anger personally.
  • Forget disenfranchised mourners.
  • Share your own story unless it may assist in some way.

Table 2

Examples of things to say Examples of things to avoid saying
  • “I’m sorry for your loss.”
  • “I wish things would have ended differently.”*
  • “I am sad for you.”*
  • “Do you want to talk about it?”
  • “We have learned from other parents who have gone through this that…”
  • “What do you need?”
  • “What can I do to help you get through this experience?”
  • “What would you like to do?”
  • “Do you have any questions?”*
  • “It’s just a miscarriage.”
  • “It wasn’t even a child.”
  • “It’s for the best; he or she wouldn’t have been normal.”
  • “There must have been a reason your baby died.”
  • “It’s good your baby died before you got to know him or her well.”*
  • “It could have been worse.”*
  • “You’re young; you can have another baby.”
  • “Time heals all wounds.”*
  • “Stop thinking about it; you have to turn the page.”
  • “At least you know you can get pregnant.”

*Taken from Canadian Paediatric Society (2001). Guidelines for health care professionals supporting families experiencing a perinatal loss.59

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Health Before Pregnancy

Health Before Pregnancy

Routine Prenatal Care

Routine Prenatal Care

Physical Changes

Physical Changes

Healthy Eating & Weight Gain

Healthy Eating & Weight Gain

Active Living

Active Living

Alcohol

Alcohol

Smoking

Smoking

Medications & Drugs

Medications & Drugs

Safety During Pregnancy

Safety During Pregnancy

Abuse

Abuse

Mental Health

Mental Health

Pregnancy & Infant Loss

Pregnancy & Infant Loss

Preterm Labour

Preterm Labour

Labour Progress

Labour Progress

Labour Support

Labour Support

Interventions in Labour

Interventions in Labour

Pain Medications in Labour

Pain Medications in Labour

Caesarean Birth

Caesarean Birth

Vaginal Birth After Caesarean

Vaginal Birth After Caesarean

Breech Birth

Breech Birth

Newborn Care

Newborn Care

Newborn Safety

Newborn Safety

Breastfeeding

Breastfeeding

Recovery After Birth

Recovery After Birth

Transition to Parenthood

Transition to Parenthood