Loss and suffering can be hard for both patient and provider. Here’s what we know, what we need to learn, and how to protect yourself as a clinician.
The stillbirth of twins at 7 months of pregnancy. The sudden loss of an infant 3 days before his first birthday to a freak accident at home. The loss of a 9-month-old to sudden infant death syndrome (SIDS). The fourth miscarriage after 3 months of pregnancy with no clear reason why.
These tragic and unimaginable losses can complicate ongoing psychiatric care, not only in terms of identifying what is normal grief versus an abnormal depressive disorder, but also in terms of the very normal human response we all have watching another human suffer a very significant loss. For many psychiatrists and mental health professionals, it is also unclear how to best manage these struggles and losses. We talk about grief and counseling; we talk about groups; and we make referrals. But do any of us really know what to expect and what approach is associated with the best outcomes? And what happens when these patients get pregnant again, as many do, often within months of their loss?
What We Know So Far
Miscarriage is defined as the loss of a pregnancy before 20 weeks, and stillbirth is the loss after 20 weeks. It is estimated that 11% to 16% of pregnancies end in miscarriage in women who knew they were pregnant, though this is likely an underestimate due to underreporting.1 Of women who experience a miscarriage, 50% to 80% will become pregnant again.2 Stillbirth occurs in 1 in 160 births, which amounts to 24,000 stillborn babies each year in the US.3 Infant mortality is the death of an infant before 1 year of age. In the US in 2019, the infant mortality rate was 5.6 deaths per 1000 live births.4
Unlike postpartum depression, which the American College of Obstetricians and Gynecologists has identified as a pressing issue for pregnant women requiring a systematic and simple screening tool in the postpartum time period,5 no such protocol following miscarriage or stillbirth has been established. Because of this, epidemiological studies of psychological distress following perinatal loss are still in their infancy with small cohorts, and therefore firm conclusions regarding prevalence rates of psychiatric illness and symptoms are difficult to draw.
According to a small number of standardized studies, grief, depression, and/or anxiety are the most common psychological reactions following miscarriage.6 Grief is seen shortly after 40% of miscarriages and can represent a normal adaptive response, but it can also go on to develop into pathological grief characterized by despair, strong feelings of worthlessness, hopelessness, and difficulty engaging with normal life. In the early weeks of loss, 36% of women were found to have moderate to severe depressive symptoms and 10% to 50% go on to meet criteria for major depressive disorder. Risks for post-miscarriage emotional distress include later gestational age, miscarriage of planned pregnancy, prior struggles with infertility, having no living children, poor social support, and a history of poor coping.7 One retrospective cohort study out of Germany compared 12,000 women with spontaneous abortion and 12,000 without spontaneous abortion. They found that a year after miscarriage, 8.9% of women who experienced a miscarriage were diagnosed with depression, anxiety, or adjustment disorder versus 5.7% in women without a miscarriage (OR 1.53).8
In terms of future pregnancies, a meta-analysis found a paucity of studies looking at mental health during future pregnancies following perinatal loss. They did, however, conclude that women experience elevated anxiety in the first trimester of pregnancy following reproductive loss.9
Women after stillbirth describe prolonged grief, bereavement, anxiety, depression, guilt, and self-blame. Some small studies have shown that women are at increased risk of suicide following miscarriage and stillbirth.10 Women also experience increased rates of anxiety and depression in future pregnancies after a stillbirth.11
In a study of mothers who experienced SIDS, researchers found that prolonged grief disorder was experienced by 50%. They also reported daily, intrusive, emotional pain or yearning in 68.1% of subjects. Further, they also experienced symptoms of grief; loss of self-identity; and confidence, anger, and diminished trust of others. The historical prognosis for grief is that disbelief, anger, yearning, and depression peak at 6 months, then decline as acceptance increases. With infant loss, the researchers found that there was never a time when acceptance exceeded the negative grief factors. Many women reflected that “the emphasis on acceptance fails to recognize their challenges as mothers who are responsible for maintaining memories and the value of their deceased children’s lives. They shared the difficulties they face over time as their deceased infants are less remembered or considered, noting that it contributes to their anger and inability to embrace acceptance.”12
What We Do Not Know Yet
While we have some sense that these women suffer tremendously following perinatal loss, the body of literature is lacking rigorous studies of diagnosable psychiatric illness, symptom course and severity, and clear prevalence rates. We also do not currently have a sense of why these women are suffering: Is this simply a response to trauma, or could there be a biological process related to the inflammatory and hormonal dysregulation that led to miscarriage or stillbirth? Like postpartum depression, is there a role for post-pregnancy biological processes that seem to leave some women more vulnerable to mood and anxiety disorders in the immediate postpartum time period?
Perhaps most shockingly and sadly, there is a paucity of research on how to best treat women who experience perinatal loss. We do not have specific, validated screening tools to help better evaluate and identify women suffering in the wake of pregnancy and child loss. And perhaps because of the above, we do not have clear treatment guidelines or resident and provider education around treating women following miscarriage, stillbirth, and infant loss. We can and should do better.
What To Do Now
While we wait for more research, where do we turn now when our patients experience perinatal or infant loss? First, we can start by being present, supportive, and bearing witness to their experience. Next, we can work hard to not rush along their grief process by focusing on acceptance. We can look for therapists and support groups experienced with perinatal and infant loss, such as through Postpartum Support International (PSI) (Loss & Grief in Pregnancy & Postpartum | Postpartum Support International (PSI)) or Miscarriage, Infant Death, and Stillbirth (MIS) Support groups (www.misshare.org).
We can see these patients frequently and continue to work on all the things that we, as psychiatrists, are trained for: anxiety, depression, relationships, sleep, appetite, and finding meaning. We can involve spouses and family members in our sessions to help increase familial support and sharing, as social support may protect against later emotional distress.13 And we can be vigilant during their future pregnancies to screen and treat them for psychiatric illness and to acknowledge that they may be experiencing conflicting feelings, anxiety, sadness, and even grief.
Taking Care of Ourselves
Finally, and importantly, we must take care of ourselves to be able to take care of our patients. Miscarriage, stillbirth, and infant loss can bring with it new and unique forms of countertransference and emotional reactions for us, the providers. Many of us will experience pregnancy, parenthood, and even loss while treating these patients, and exposure to this type of loss can bring up our own fears and personal histories. With the more widespread use of telehealth, many of us will see patients through these incredible losses within days or hours of their experience, and that means early and raw exposure to our patients suffering. It is vital to take a moment after seeing these patients to check in with yourself about your reactions and then to find trusted peer and supervisory colleagues to assist in processing your experience. As always, psychiatry and mental health provision is a team sport, and we are all in this together!
1. Centers for Disease Control and Prevention. New CDC data: COVID-19 vaccination safe for pregnant people. August 11, 2021. Accessed October 27, 2021. https://www.cdc.gov/media/releases/2021/s0811-vaccine-safe-pregnant.html
2. Blackmore ER, Côté-Arsenault D, Tang W, et al. Previous prenatal loss as a predictor of perinatal depression and anxiety. Br J Psychiatry. 2011;198(5):373-378.
3. Centers for Disease Control and Prevention. What is stillbirth? November 16, 2020. Accessed October 27, 2021. https://www.cdc.gov/ncbddd/stillbirth/facts.html#ref
4. Centers for Disease Control and Prevention. Infant mortality. September 8, 2021. Accessed October 27, 2021. https://www.cdc.gov/reproductivehealth/maternalinfanthealth/infantmortality.htm
5. Committee on Obstetric Practice; the American College of Obstetricians and Gynecologists. Screening for perinatal depression. November 2018. Accessed October 27, 2021. https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2018/11/screening-for-perinatal-depression
6. Lok IH, Neugebauer R. Psychological morbidity following miscarriage. Best Pract Res Clin ObstetGynaecol. 2007;21(2):229-247.
7. Nynas J, Narang P, Kolikonda MK, Lippmann S. (2015). Depression and anxiety following early pregnancy loss: recommendations for primary care providers. Prim Care Companion CNS Disord. 2015;17(1):10.4088/PCC.14r01721.
8. Jacob L, Polly I, Kalder M, Kostev K. Prevalence of depression, anxiety, and adjustment disorders in women with spontaneous abortion in Germany–a retrospective cohort study. Psychiatry Res. 2017;258:382-386.
9. Hunter A, Tussis L, MacBeth A. The presence of anxiety, depression and stress in women and their partners during pregnancies following perinatal loss: a meta-analysis. J Affect Disord. 2017;223:153-164.
10. Weng SC, Chang JC, Yeh MK, et al. Do stillbirth, miscarriage, and termination of pregnancy increase risks of attempted and completed suicide within a year? A population‐based nested case–control study. BJOG. 2018;125(8):983-990.
11. Gravensteen IK, Jacobsen EM, Sandset PM, et al. Anxiety, depression and relationship satisfaction in the pregnancy following stillbirth and after the birth of a live-born baby: a prospective study. BMC Pregnancy Childbirth. 2018;18(1):41.
12. Goldstein RD, Lederman RI, Lichtenthal WG, et al. The grief of mothers after the sudden unexpected death of their infants. Pediatrics. 2018;141(5):e20173651.
13. Campbell-Jackson L, Horsch A. The psychological impact of stillbirth on women: a systematic review. Illness, Crisis & Loss. 2014;22(3):237-256.