IHPI Member Katherine Gold, M.D., M.S.W., M.S., whose research focuses on reducing stillbirths and early infant death, recently contributed to the Lancet series on “Ending Preventable Stillbirths,” which rolled out earlier this year. Gold, an assistant professor of family medicine and obstetrics & gynecology, provided some perspective on the importance of understanding and documenting the health and economic effects of stillbirth, particularly in low-income countries where women face a variety of barriers to accessing necessary care.
Of the 2.6 million stillbirths that occur each year, 98 percent are in low- and middle-income countries, with 75 percent in sub-Saharan African and south Asia. In the U.S., 1 in 140 births ends in stillbirth, slightly higher than the number of infant deaths that occur within the first year of life, and 10 times higher than the rate of SIDS (Sudden Infant Death Syndrome). In the U.S., the CDC defines stillbirth as a pregnancy loss that happens in the second half of pregnancy (after 20 weeks), although other parts of the world consider stillbirths to include losses in the third trimester only (beyond 28 weeks).
Many of these deaths are avoidable. In the lower income countries that bear the greatest burden for stillbirth as well as early infant death (deaths occurring within the first month of life), most stillbirths result from preventable maternal infections, such as malaria and syphilis, inadequate nutrition, or complications during labor, a critical period during which half of all stillbirths occur, and most of these among infants delivered at term who would otherwise have been expected to survive. Adequate prenatal care is often an issue as well, as many women in these countries do not present for care until late in pregnancy, if at all.
The Lancet series notes that the stillbirth rate is a sensitive marker of quality and equity of healthcare. In many parts of the world, women have great difficulty accessing facilities with trained medical providers and supplies necessary for delivery because of infrastructure issues, lack of transportation or resources, or other barriers, including cultural norms where home births are preferred and professional medical interventions less favored. Health system improvements could prevent most of these stillbirths, through higher quality care for pregnant women and infants, though these improvements are complicated and require resources that are often not available.
In higher income countries such as the U.S., stillbirths are often associated with factors such as obesity, smoking during pregnancy, diabetes, high blood pressure – factors that may be lifestyle-related and often preventable – as well as inadequate prenatal care, including failure to identify babies at risk. These countries have come a long way in reducing preventable stillbirths, but some risk factors, like obesity and high blood pressure, remain really hard to address.
In all countries, and particularly in high income countries, it’s the most disadvantaged and marginalized parts of societies that bear the greatest risks for stillbirth, and worse health outcomes in general. I’m currently investigating the burden of stillbirth among African-American women in Michigan and their experiences with loss and grief to help conceptualize better interventions for prevention and bereavement.
It’s important to recognize that interventions proven to prevent stillbirths also improve other birth outcomes that share many of the same causes, such as maternal and infant death, and should be prioritized together.
2016 Lancet Ending Preventable Stillbirths series
There are clearly mental health impacts in the aftermath of stillbirth, and these can persist for many years. At about nine months after the loss, women have close to a four-fold increased risk for depression. These women also have a nearly seven-fold higher risk of PTSD (post-traumatic stress disorder), and their risk of moderate to severe general anxiety disorder is doubled. Many parents report persistent feelings of remorse or guilt for not being able to save their baby. Most parents are not getting mental health care for this, even if they meet the criteria for these conditions.
Certainly, many high income countries have come a long way in recognizing the need for mental health services. Women in lower income countries are still struggling to access basic healthcare, let alone services for dealing with the consequences of bereavement. But perspectives on death around the world are so diverse, and appreciating those perspectives within a cultural context is the starting point for determining how to improve mental health and quality of life for women and families who have experienced these losses. Listening to the experiences of bereaved families themselves as they cope is extraordinarily important to help understand the profound impact these losses have, and to effectively work toward addressing their consequences.
The other thing from a mental health perspective is that women who have suffered a stillbirth tend to be very anxious about subsequent pregnancies, and often are hesitant about becoming attached or bonding with those babies during their pregnancies out of fear they might lose them too. Everyone around them expects them to be delighted over the new pregnancy, when in reality many are terrified because of their previous experiences. We want these women to know that their feelings and reluctance about bonding are normal and expected, and once their babies are born we find they generally have no difficulties connecting with their infants.
There’s still a lot of stigma about talking about stillbirth, and infant death in general is often a taboo subject in many societies around the world. Women can face social rejection. Stigma around bringing these issues out into the open can exacerbate the trauma for these women. There’s often a disconnect between the persistent grief women experience over stillbirth or infant death, and what those around them, even their closest loved ones, expect that these women should be feeling following a trauma like this – it’s an enormously complicated issue layered with all kinds of complex emotions, but the stigma around the loss prevents us from fully comprehending the extent of the problem, and the extent of need for mental health services.
Stillbirth has a devastating impact on providers. One of our studies found that almost 1 in 10 OBGYNs considered quitting their profession because of the emotional impact of stillbirth; many are afflicted by persistent guilt, even if nothing in their power could have prevented the loss, which is nearly always the case.
Virtually no medical training is devoted to dealing with stillbirth and infant death, let alone sudden deaths from any circumstances, which include suicides, sudden ER death, etc.
Improving bereavement training could help these professionals better care for their patients as well as their own well-being following devastating events.
A lot of my research focused on trying to quantify the direct and indirect costs of stillbirth and early infant death – until we know the economic and societal costs, it’s hard to make a strong case for care of patients and prevention of stillbirth.
Stillbirths are not well tracked across the globe, making it difficult to do these analyses. What little data that are available on direct costs indicate that a stillbirth requires greater resources than a live birth, both in the perinatal period and in additional surveillance during subsequent pregnancies. The indirect costs of stillbirth – including funeral expenses, loss of income from reduced or delayed employment on the part of parents, and the continuing costs of counselling and medical care in subsequent pregnancies – are extensive and are usually borne by families alone.
Until we can better document that these losses are common, costly, and traumatic, it will be challenging to get better interventions in place for families and improve care of bereavement and mental health complications from loss.
I’m hopeful that the Lancet series and other efforts will put stillbirths on the global agenda, so that the lasting health and economic effects of stillbirth on families, providers, and society are better documented and gain deserved recognition. Systematically integrating stillbirth into policies affecting women’s and children’s health around the world will go a long way to incentivize investments in interventions that can prevent stillbirth, newborn death, and maternal death, and also reduce the harmful effects of these losses when they occur.
2016 Lancet Ending Preventable Stillbirths series
Katherine Gold, M.D., M.S.W., M.S., has a joint appointment with the Departments of Family Medicine and Obstetrics and Gynecology, and sees patients at Family Medicine at Domino's Farms. She researches the downstream impact of pregnancy loss (including miscarriage, stillbirth and infant death) on maternal mental, physical, and reproductive health. Additional research focuses on pregnancy and postpartum mental health for women in the U.S. and in Africa and stillbirth prevention in developing countries. She is also interested in ethics, racial disparities in perinatal loss, physician communication training in death and bereavement, reduction of tobacco use during pregnancy, and mental health in primary care and among physicians. Dr. Gold recently completed the James C. Puffer/American Board of Family Medicine Fellowship with the Institute of Medicine (now the National Academy of Medicine). She also serves on the board of the International Stillbirth Alliance, which helped to coordinate the Lancet series.