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.
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 weeksâ€™ gestation) or has a stillbirth (gives birth to an infant with no signs of life at or after 20 weeksâ€™ gestation), she needs immediate medical care to prevent complications. There are increased risks of bleeding and/or infection, which may put the womanâ€™s health in danger.
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.
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.
About 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:
The death of a fetus within the womb occurring in the first 20 weeks of pregnancy, also known as spontaneous abortion.1,2,3
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
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
The death of a baby between 28 and 364 days of life.2
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
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.
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
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.
The rate of neonatal deaths in Canada has remained steady in the last decade â€“ 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.
Important components of investigating a pregnancy or infant loss may include the following:
- Case review.
- Timely and thorough medical care.
- Fetal examination and testing.
- 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?
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
Coping with Pregnancy and Infant Loss
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 womanâ€™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.Â 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.
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.
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 personâ€™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.
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.
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
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
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
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.
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 babyâ€™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.
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
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.
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 familyâ€™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 theÂ Resources and Links section.
Coordinating postnatal care services
Ensure that the babyâ€™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
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.
- Care of their breasts.
- 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.
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.
Referrals are recommended when there are several risk factors associated with complicated bereavement.
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.
Resources & Links
- Canadian Paediatric Society (CPS)
- Provincial Council for Maternal and Child Health
- Registered Nurses’ Association of Ontario (RNAO)
- Society of Obstetricians and Gynaecologists of Canada (SOGC)
- 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.
- Baby’s Breath (formerly known as Canadian Foundation for the Study of Infant Deaths)
- Bereaved Families of Ontario (BFO)
- Bereaved Jewish Families of Ontario
- Bereavement Ontario Network (BON)
- Healthy Newborn Network
- Human Milk Bank Association of North America (HMBANA)
- Lighthouse Program for Grieving Children
- Multiple Births Canada
- Now I Lay Me Down To Sleep
- Pregnancy and Infant Loss Network (PAIL Network)
- Rainbows: Guiding Kids Through Life’s Storms
- Rogers Hixon Ontario Human Milk Bank
- Society of Obstetricians and Gynaecologists of Canada (SOGC)
- Still Standing Magazine
- Still-Life Canada
- The Hospital for Sick Children (SickKids) About Kids Health
- The Lighthouse Program for Grieving ChildrenÂ 905-337-2333
- Pregnancy and Infant Loss Network (PAIL Network) 1-888-301-7276
- Telehealth Ontario 1-866-797-0000
Prenatal Education Provider Tools
- Human Milk Bank Association of North America (HMBANA)
Client Resources and Handouts
- The Hospital for Sick Children (SickKids)
- Multiple Births Canada
- Pregnancy and Infant Loss Network (PAIL Network)
- 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: BailliĂ¨re Tindall.
- Tappouni, T. (2013). The gifts of grief: Finding light in the darkness of loss. San Antonio, TX: Hierophant Publishing.
Appendix A: Investigations and care following loss.
After any pregnancy loss, a thorough case review by a womanâ€™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.
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
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.
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 womanâ€™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 childâ€™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.
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 KĂĽbler-Rossâ€™ 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.
- Shock and numbness.
- Denial that the baby is gone.
- Disbelief in this reality.
- Still feeling pregnant or feeling that the baby is moving.
- 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.
- “If onlyâ€¦” 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.
- 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.
- 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 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 babyâ€™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
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.
|Examples of things to say||Examples of things to avoid saying|
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