Pregnancy and infant loss are often rife with silence, guilt, and shame. This October, we shine a light on these losses, honoring the babies who have died and supporting the bereaved.
A miscarriage is a pregnancy loss occurring prior to 20 weeks of pregnancy. Anywhere from 10-20% of all pregnancies end in miscarriage, and this may be an underestimate as many miscarriages can happen even before a woman realizes she is pregnant. (This includes all birthing people; for simplicity’s sake I use the terms “women” and “mothers” in this article, but trans and nonbinary individuals can be pregnant, too, and their losses can carry even more physical and emotional difficulties). Miscarriages can happen spontaneously with obvious symptoms, or be “missed miscarriages” which have no symptoms and are typically discovered at routine prenatal visits. Ectopic pregnancies also end in early miscarriage, and can result in the need for surgery including removing a fallopian tube, compounding the loss associated with these pregnancies.
About 2-3% of pregnancies will end in the second trimester. With the advancement in fetal medicine such as chronic villus sampling at 10 weeks gestation and refinement of fetal ultrasound, lethal fetal abnormalities can now be detected. Making the choice to end a pregnancy due to lethal or severely life-limiting abnormalities is devastating, often made even more complicated with state laws and insurance company regulations preventing access to medical interruptions. A loss after 20 weeks of pregnancy is considered stillborn. In the United States, approximately 1 out of every 160 births results in stillbirth, with a disproportionate rate impacting black women followed by American Indians and Alaska Natives.
If, during the prenatal testing noted earlier, the health of the mother is not compromised by carrying a baby with lethal anomalies to term, another difficult choice can be made to continue the pregnancy and prepare for perinatal hospice. Neonatal death occurs when a baby dies within the first 28 days of life. Amy Kuebelbeck’s poignant memoir, Waiting With Gabriel: A Story of Cherishing a Baby’s Brief Life, chronicles the discovery of a lethal abnormality, the decision to take the pregnancy to term, and Gabriel’s brief, but touching life.
Pregnancy and infant loss can cause significant grief. Multiple losses can intensify grief. Pregnancy and infant loss are also often disenfranchised, a loss that is not acknowledged as legitimate by society, resulting in loss that cannot be openly acknowledged or publicly mourned. Women and partners experiencing these losses often hear messages such as “miscarriage is nature taking care of itself,” “these things happen for a reason,” or “you can just try again.” A large societal sentiment can be “how can you grieve someone you never met, or just met?” Women are often encouraged not to disclose a pregnancy in the first trimester in case of a loss. Then, when a woman has a miscarriage and feels intense grief, there can be feelings of confusion and shame. Additional complexities of planning and achieving pregnancy in LGTBQ+ couples can compound the experience of loss. Confronting societal judgments about their desires to be parents in the first place can leave these individuals feeling even more stigmatized and isolated after loss. Negative stigma also surrounds adolescent pregnancy, leaving adolescents experiencing a loss more stressed and disenfranchised. Grieving adolescents are at more risk for developing clinical depression and suicidal ideation.
Partners also grieve, and their grief may look differently. Many women describe their male partners becoming very “busy” after a loss, losing themselves in seemingly unnecessary tasks around the home and at work. Studies have shown that men grieve on an emotional level as well, and can vacillate between problem-focused coping and emotional expressions of grief. Further, men’s grief, and likely all partners, can be considered even further disenfranchised with most of the attention being on the birthing person, leaving partners to be described as the “forgotten bereaved.”
THE THINGS TO WATCH OUT FOR
Grief is a healthy, normal response to loss. It includes many emotional, cognitive, and physical expressions including feeling intense shock, anxiety, sadness, anger, and guilt. Ruminating about the death and distractibility are common, as are sleep disturbances, temporary appetite changes, and significant fatigue. Typically, grief is expected to decrease over time, with waves gradually becoming less severe and more infrequent. Prolonged grief symptoms including intense yearning, preoccupying thoughts about the deceased person, hallucinations, intrusive thoughts, avoidance of people or places that could trigger grief, and an inability to engage in usual daily activities are signs of complicated grief (Shear, 2015) and requires more rigorous follow-up and possibly medication management. It is important to note, however, that some complicated grief symptoms are quite common and expected after perinatal loss, such as avoidance of triggers (e.g., babies and pregnant women). Before inadvertently pathologizing a grief reaction, it is important to note the intensity, duration, and general trend of the grief, making space for a wide range of responses as women try to process what has happened. In perinatal loss there can also be the loss of a larger worldview about life. Losing a child is never an event in future visions (unlike other more “understandable” losses such as grandparents, parents, pets, job losses, etc.), and women may also need the time and space to process this loss of innocence.
Perinatal loss is a risk factor in developing perinatal mood and anxiety disorders (PMADs) in subsequent pregnancies. Postpartum Support International (PSI) started a certification program for healthcare providers in perinatal mental health and has a directory of these professionals on their website. If grief has evolved into complicated grief and/or a PMAD after loss or during or after a subsequent pregnancy, PSI is a wealth of information and resources.
It is important to note that the circumstances surrounding the loss may also be traumatic. With or without a diagnosable PTSD trauma, the early stages of grief can often mimic symptoms of PTSD including the avoidance triggers, distressing thoughts or flashbacks about the loss, nightmares, and a heightened sensitivity to other possible threats. If these symptoms persist, more focused trauma treatment may be indicated.
THE THINGS YOU CAN DO
There are several things that might be helpful to support individuals experiencing pregnancy and infant loss.
- Acknowledge the loss
This may seem obvious, but our society is not good at this, with fear that we could upset grievers by “reminding” them of their loss. They need no reminders; the loss is with them all the time. By acknowledging the loss and using the baby’s name if applicable, you are honoring the baby’s brief life, in or out of utero, and legitimizing the loss.
- Encourage rituals and memory making
Rituals and memory making are very important in perinatal loss. There are endless ways to celebrate a baby’s short life and document the loss. There is no time frame for rituals and memory making. Even if the loss happened months or years prior, rituals on due dates, birth and death days, or at any time are healthy and appropriate. One of my clients named her baby lost in the second trimester nearly a year after the loss. Another client plants flowers every year on her daughter’s birth and death day. Making special jewelry, sharing on social media, volunteering or donating baby items, participating in a memorial walk or run, are all ways to press pause and recognize the loss.
This also may seem obvious, but once again, our society is not good at listening. Make room for the grief, and resist trying to “look on the bright side” too soon. It feels invalidating. Grief needs to be witnessed. It is painful to sit with someone who is grieving, but that is exactly what is needed.
- Encourage self-care, especially in early days
Self-care is often misunderstood. While activities like bubble baths and spa days are nice, the respite they provide is fleeting. Physical self-care is extremely important after a pregnancy and infant loss due to the physical ramifications of these losses. Sleep, adequate nutrition, and proper follow-up for medical concerns like milk production and gynecological care are essential. Self-care can also be saying no to activities like baby showers or child birthday parties for a period. There will be more of these events in time when the pain is not so raw.
- Be Aware of Pregnancy and Infant Loss Support Day and Month
In 1988, President Ronald Reagan declared October as Pregnancy and Infant Loss Awareness Month (with October 15th being declared Pregnancy and Infant Loss Awareness Day in 2006). This was an important step in validating the unique needs of grieving parents, honoring the lost babies, as well as to increase education and prevention efforts that could ultimately reduce the incidence of these losses. Since 2003, lighting a candle at 7pm for an hour on October 15th with the International Wave of Light is one way to honor these losses. Many local pregnancy loss organizations host Remembrance Days on weekends near October 15th with walks and other commemorative activities. One way to support clients or others you know who have suffered a pregnancy or infant loss might be to reach out to them this month, let them know you are thinking about them and their babies, and even participate in one of these activities.
THE BOTTOM LINE
No one lives a full life without being touched by grief along the way. Covid has also left us all more sensitive, exhausted, and isolated regarding loss, with urges to hide from any more sorrow. Let’s resist those urges for a few moments and acknowledge pregnancy and infant loss, giving these losses the legitimacy they need for the grief to be openly experienced and healing to take place.
- Kuebelbeck, A. (2008). Waiting with Gabriel: A story of cherishing a baby’s brief life. Loyola University Press.
- Shear, M.K. (2015). Complicated grief. New England Journal of Medicine, 372, 153-160. doi: 10.1056/NEJMcp1315618.