Amy Wenzel
Department of Psychiatry, University of Pennsylvania School of Medicine, Philadelphia, PA, USA
Private Practice, Rosemont, Pennsylvania, PA, USA
For many people, becoming a parent is a life task that carries great significance and meaning. Although the prospect of becoming pregnant and having a child is associated with joy and eager anticipation for many couples, it can be associated with sorrow and despair for couples who experience difficulties. Some couples experience infertility, or the inability to conceive after 12 months of regular sexual activity free of birth control. Other couples conceive but lose the baby in various stages of pregnancy. Miscarriage and neonatal loss occur when the embryo or fetus dies before it can live on its own. The term, miscarriage, is typically used when the loss occurs before the 20th week of gestation (sometimes 24th week of gestation in select studies). In contrast, the term neonatal loss (or stillbirth) is typically used when the loss occurs at or after the 20th week of gestation, including instances in which a fetus is carried to term but dies during childbirth. Together, miscarriage and neonatal loss are understood as perinatal loss. This article describes the phenomenology of, emotional consequences of, and interventions for infertility and perinatal loss.
Infertility is typically designated in two ways. Primary infertility occurs when a woman has never conceived, and secondary infertility occurs when a woman had been previously pregnant, even if the pregnancy resulted in a loss. Although the definition of infertility presented earlier indicates that it is diagnosed after 12 months of trying unsuccessfully to conceive without using birth control, it is often diagnosed after 6 months of trying unsuccessfully to conceive in women over the age of 35. The rationale underlying the use of a different criterion for women over the age of 35 is that the likelihood of conceiving declines rapidly after the age of 30, so implementing fertility treatment sooner rather than later in women of advanced maternal age increases the likelihood of a successful pregnancy. Research shows that among women who have attempted to achieve pregnancy, the rate of infertility varies between 16 and 28%. In women over age 40, between 3 and 6% are involuntarily childless due to infertility, and an additional 4–6% have fewer children than desired (Schmidt, 2006).
The causes of infertility are multifaceted. Approximately 80% of infertility cases can be explained by female factors, male factors, or both, leaving the remaining 20% of cases unexplained by medical causes. Causes of female infertility include factors related to ovulation, the cervix or uterus, and/or the fallopian tubes. Women who infrequently ovulate or do not ovulate are at high risk for infertility; these difficulties can be caused by hormonal factors such as polycystic ovary syndrome (PCOS), altered levels of follicle‐stimulating hormone (FSH), or luteinizing hormone (LH) due to stress or sudden weight gain or loss, or excess prolactin. Uterine and cervical causes of infertility include fibroids, an abnormally shaped uterus, and cervical stenosis (i.e., narrowing of the cervix). Women who have endometriosis, a condition in which the uterine lining extends outside the uterus, can have difficulty conceiving because resultant scarring can block the fallopian tubes. Moreover, the fallopian tubes can also be blocked by pelvic inflammatory disease, which is an infection of the uterus and fallopian tubes caused by sexually transmitted infections. Male infertility is typically caused either by a low sperm count or poor‐quality sperm that are not mobile enough to reach the partner's egg. Some research demonstrates that anxiety and stress are associated with poorer outcomes in infertility treatment (e.g., Boivin & Schmidt, 2005); however, emotional distress is rarely viewed as the sole cause of infertility.
The emotional consequences of infertility can be devastating for those who experience it, as becoming a parent is often central to people's expectations for the course they believe their lives will follow. It is common for people struggling with infertility to report a sense of failure, defectiveness, and incompetence, as well as jealousy of and isolation from others who seem to achieve parenthood easily. Female infertility is commonly associated with a sense of betrayal by one's body. Male infertility is commonly associated with a threat to virility. Although the prevalence of mental health diagnoses is not elevated in people who struggle with infertility, they often report elevated levels of emotional distress on self‐report inventories of depression, anxiety, and life satisfaction (Greil, Schmidt, & Peterson, 2016). Women tend to report higher levels of infertility‐related depression, anxiety, and stress than do men. In contrast, people who are characterized by resilience, or the capacity to respond adaptively to negative life events, report comparatively lower levels of infertility‐related stress, higher quality of life, and more adaptive coping strategies (Sexton, Byrd, & von Kluge, 2010).
Over the past 30 years, technology has allowed for the development of sophisticated approaches to medically assisted reproduction. Assisted reproductive technology (ART) is a category of medical procedures used to achieve pregnancy. Perhaps the most well‐known ART is in vitro fertilization (IVF), a procedure in which (a) a woman takes hormones to increase the number of eggs; (b) her eggs are removed and placed in a petri dish along with sperm; (c) fertilization occurs in the petri dish; and (d) one or more embryos are placed in her uterus. Some women choose to freeze embryos and later thaw one or more embryos and have them transferred to the uterus, a procedure called frozen/thawed embryo transfer cycle (FET). Fertilization can also occur using donor eggs, such that after the eggs are fertilized, they are transferred into a woman's uterus. Non‐ART medically assisted reproduction interventions include ovulation induction using pharmacotherapy and intrauterine insemination (IUI) using the husband/partner's or a donor's sperm. In developed countries, approximately 56% of people who struggle with infertility seek some form of medically assisted reproduction (Boivin, Bunting, Collins, & Nygren, 2007). The live birth rate in women under age 40 after undergoing ART is between 15 and 25%, depending in the specific intervention (Schieve, Devine, Boyle, Petrini, & Warner, 2009).
Many people experience a great deal of stress when they undergo medically assisted reproduction interventions, as these interventions can be unpredictable, ambiguous, and time consuming. In many cases, treatment assumes a central focus in their lives, and it can be difficult to know when to discontinue treatment. Some research suggests that infertility treatment confers stress above and beyond that conferred by infertility itself (Greil, Lowry, McQuillan, & Shreffler, 2011). As might be expected, infertility‐related emotional distress decreases with successful treatment, and it often persists when treatment is unsuccessful. In addition, infertility and infertility treatment can put great strain on the partner or marital relationship. However, a subset of couples who remain involuntarily childless report that their relationship strengthened because of the shared experience (Peterson, Pirritano, Block, & Schmidt, 2011).
When women become pregnant through medically assisted reproduction technology, they view pregnancy as more stressful and report more anxiety than women who did not experience infertility. Moreover, women who became pregnant through infertility treatment report more emotional distress following a pregnancy loss than women who did not become pregnant through infertility treatment. However, there is no evidence that women whose children were born through infertility treatment parent any differently or report differing levels of parenting stress than women whose children were conceived naturally, although parents who had children using medically assisted reproduction technologies endorse stronger feelings toward their children and a high level of gratitude (Sundby, Schmidt, Heldaas, Bugge, & Tanbo, 2007). There are few long‐term consequences of infertility‐related emotional distress in couples who eventually have a successful pregnancy or who adopt children; however, emotional distress persists in a subset of people who remain involuntarily childless.
Although the need for infertility‐specific mental health services for people experiencing infertility has been recognized, there is a paucity of research that has examined the efficacy of specific interventions for infertility‐related emotional distress. Interventions based on cognitive behavioral therapy (CBT) typically include components such as relaxation, cognitive restructuring (i.e., a process by which people evaluate the accuracy and helpfulness of negative thoughts associated with emotional distress), stress management, and psychoeducation about infertility and its emotional consequences. Research shows that such CBT approaches are more efficacious than routine care (Domar et al., 2000) and pharmacotherapy (Faramarzi et al., 2008) in reducing depression, anxiety, and stress in people who struggle with infertility. In contrast, evidence is mixed regarding the degree to which mental health intervention targeting people struggling with infertility actually improves pregnancy rates.
Because the achievement of parenthood is an important developmental task for many adults, a loss can be devastating on many levels. According to perinatal loss experts David and Martha Diamond,
In addition to the loss of the fetus or baby, which can be a devastating event in and of itself, there are lost opportunities for progress in adult development, for the repair of old wounds, and for the redefinition of relationships with others. The grief, loss, and trauma may re‐evoke unresolved grief from the past. Preexisting psychopathology can be exacerbated, and new disorders can be precipitated
(Diamond & Diamond, 2016, p. 488).
The often‐abrupt shift from the expectation that there will be a new addition to the family to the stark realization that this will not occur prompts a profound sense of disappointment and despair in many people who experience it. Perinatal loss is a particularly difficult event for women to endure, given that they are already in a vulnerable state due to fluctuating hormones, shifting their identity to that of being a parent, and perhaps grappling with hurts from their own parentings of which they were reminded during their pregnancy. However, it is important not to underestimate the toll that perinatal loss takes on men as well.
The overall incidence of miscarriage is between 15 and 20%, and it increases substantially with age, with as many as 75% of women experiencing a miscarriage after age 45 (Hemminki & Forssas, 1999). Most miscarriages occur in the first 12 weeks of gestation, which is why many people refrain from sharing news of the pregnancy until they have completed the first trimester. Symptoms of miscarriage are cramping and vaginal bleeding. An ultrasound verifies that the pregnancy is no longer viable. Many women are advised to simply allow the miscarriage to proceed naturally; however, in instances in which this does not occur, medical intervention may be necessary. Some women undergo dilation and curettage (often referred to as a D&C), in which a medical team dilates a woman's cervix and uses surgical intervention to remove the contents of the uterus. Other women are given medicine to induce contractions. The incidence of neonatal loss—loss that occurs at or after 20 weeks of gestation—is approximately 0.6% (MacDorman & Gregory, 2015). Women whose fetus died in utero typically go through the process of labor and delivery. Other women deliver live infants that die soon after birth.
There are many factors that account for perinatal loss. Between 50 and 70% of first trimester miscarriages can be attributed to genetic problems, such as chromosomal abnormalities. Additional causes of miscarriage include infections, maternal medical conditions like diabetes or thyroid disease, hormone problems, immune system responses, uterine abnormalities, and instances in which the egg did not implant properly. Risk factors for miscarriage include advanced maternal age (i.e., age 35 or older), maternal medical conditions like diabetes or thyroid disease, a history of three or more miscarriages, smoking, drinking alcohol, use of illicit drugs, toxins, and obesity. Causes of neonatal loss include placental abruption, premature rupture of membranes (i.e., water breaks prematurely), preeclampsia (i.e., a condition that typically occurs after 20 weeks of gestation, characterized by high blood pressure and potential damage to an organ system like the kidneys), birth defects like structural abnormalities, growth restriction, infection, and umbilical cord abnormalities.
Many people experience a pronounced grief reaction in the time following a perinatal loss. However, the grief is focused on what their child would have been like and what life would have been like with the child, rather than on memories. Grieving a perinatal loss is particularly challenging because there are few culturally sanctioned grieving practices. Many women report significant feelings of guilt and shame, a sense of failure, and self‐blame. Women who miscarried in the first trimester often grieve in silence, as they had not yet disclosed the pregnancy to others. Women who were visibly pregnant and suffer a neonatal loss must contend with announcing the news to others and fielding questions from acquaintances and co‐workers who ask pregnancy. Men also report elevated grief after perinatal loss, although it is typically less pronounced than in women and more profound in response to a neonatal loss, rather than to a miscarriage. One explanation for this is that men have not experienced quickening (i.e., the perception of fetal movements) and the bodily changes that women typically experience. It is likely that results from studies finding gender differences in grieving perinatal loss can be explained by gender differences in the general expression of grief and emotional distress, with men being more likely to remain stoic and use problem‐solving strategies to cope with loss and women being more likely to express their emotions openly.
Complicated grief occurs when the grief reaction becomes chronic and is associated with life interference and significant personal distress. Approximately 10–20% of women who experience perinatal loss struggle with complicated grief, although this range is not appreciably different from the percentage of complicated grief reactions in response to other losses (Brier, 2008). Factors that put women at risk for complicated grief reactions to perinatal loss include poor psychological functioning prior to the loss, poor social support, and a history of other perinatal losses.
A body of research has examined specific symptoms associated with mental health disorders reported by people who have experienced perinatal loss. Research indicates that elevated symptoms of depression in women persist 6 months to 1 year following a perinatal loss and that the women at greatest risk for depression are those who are childless, are highly invested in the pregnancy, and/or have concerns about infertility (Robinson, 2014). Men also report elevated depressive symptoms in the first few months following a perinatal loss, but in contrast to symptoms reported by women, their symptoms drop significantly after 3 months. Moreover, women who have experienced perinatal loss typically report high levels of anxiety during subsequent pregnancies, with the understandable worry that they will experience another loss. In fact, there is evidence that women who have experienced multiple perinatal losses have more emergency department visits and hospitalizations than women without such a history (Kinsey, Baptiste‐Roberts, Zhu, & Kjerulff, 2015). Women also endorse rumination and intrusive thoughts up through at least 6 months' post‐loss.
Experts have been increasingly recognizing the traumatic nature of perinatal loss. The definition of trauma in the Diagnostic and Statistical Manual, Fifth Edition (DSM‐5) indicates that a person must have exposure to actual or threatened death, which indeed is the case with a perinatal loss. Many women who experience perinatal loss contend with a great deal of blood and pain. There is a profound sense that something is going horribly wrong, coupled with a sense of uncontrollability. The woman has literally lost an extension of herself in her child, as well as an integral part of a dream for parenthood. For these reasons, Diamond and Diamond (2016) have described perinatal loss as being one type of reproductive trauma. Rates of posttraumatic stress symptoms in women who have experienced perinatal loss range from 10 to 25% at 1‐month post‐loss (Diamond & Diamond, 2016).
In addition, other family members often experience emotional distress associated with the perinatal loss. Children who knew about their mother's pregnancy can experience grief, along with confusion over what happened to the baby. Even when children do not know about the pregnancy, they can often sense when their parents are upset. Grandparents are also affected tremendously by perinatal loss, both in terms of the loss of a grandchild and concern for what their own child is enduring (Robinson, 2014).
Although there is little consensus on the best interventions to deliver to parents who experience perinatal loss, most experts agree that it is important for healthcare providers to acknowledge the meaning associated with the loss, as well as to provide parents with some latitude to choose the best way to proceed with logistical issues (such as how to dispose of the remains, whether to have a memorial service). There is insufficient evidence to support the provision of counseling in the immediate aftermath of a perinatal loss. However, psychotherapy and counseling should be offered as an option when people experience a perinatal loss, with the understanding that it is their choice as to whether they take advantage of it. Psychotherapy or counseling should be recommended at follow‐up visits when it becomes clear that their emotional distress is at a level that causes life interference. A topic of debate is whether women who experience advanced neonatal loss should hold their babies. Some parents find that doing so provides a sense of closure. However, some research shows that there is an increase in depressive, anxiety, and posttraumatic stress symptoms in parents who held their baby, relative to parents who did not (Hughes, Turton, Hopper, & Evans, 2002).
Mental health professionals who work with people who have experienced perinatal loss are encouraged to provide the utmost empathy and compassion. They should create an atmosphere in which the client experiences, rather than avoids, the painful affect associated with the loss. Psychoeducation can be helpful in normalizing grief reactions, and previous unresolved losses that have been activated by the current loss should be addressed (Diamond & Diamond, 2016). CBT interventions have demonstrated efficacy in reducing prolonged grief, depression, anxiety, and posttraumatic stress in an open trial (Nakano, Akechi, Furukawa, & Sugiura‐Ogasawara, 2013) and a randomized controlled trial (Kersting et al., 2013).
Amy Wenzel, PhD, ABPP, is the founder and president of Wenzel Consulting, LLC, a clinical assistant professor of psychology in psychiatry at the University of Pennsylvania School of Medicine, an adjunct faculty member at the Beck Institute of Cognitive Behavior Therapy, and an affiliate of The Postpartum Stress Center. She has authored or edited 20 books, many of topics within perinatal psychology.