Beyond Infant Mortality Awareness - Prevention & Culture
Written for the Oakland Better Birth Foundation
Jessalyn Ballerano, OBBF Communications Coordinator
Too often in American culture, a person who loses a loved one to death is asked to “manage” their grief for the sake of others’ comfort, or to grieve for a predetermined “acceptable” number of weeks, and to “move on with their life” after that arbitrary period has passed. If the grieving person is a mother, parent, or birthing person, and the loved one who has died is a baby, society sometimes harshly dictates to them whether their grief is valid, based on capitalist definitions of value, from the age/size of the child lost, to the role of the mother as a working or non-working person, to the intentionality of the pregnancy, to the health status of the deceased, and, in this country, the child’s ethnicity.
Even friends and family, entrenched in their own trauma and discomfort, say things like, “You can try again soon,” or, “You weren’t planning this anyway,” or, “At least it was early in the pregnancy”, and even go so far as to blame the grieving parents with judgements on their lifestyle or response, unable to hold space for the complex array feelings that a person may hold in their bereavement. When a family is Black, Brown, or Indigenous, medical systems and public health institutions have framed the loss as a numerical tragedy, a statistic in a sea of expected failures, tying “risk” to “race” as if it is an inherent feature of melanated humans to expect and experience the death of a child; as if fury and lasting sadness are not appropriate responses to mortality in a complacent world. Only recently, due in large part to the insistent efforts of women of color, both in these fields and in leading grassroots campaigns for accountability, have such institutions just started to acknowledge the explicitly cultural aspect of this disparity.
What was most surprising to me as a doula, the first time I supported a family through a stillbirth - and perhaps should not have been surprising, given White American silencing of other difficult subjects - was the breaking of a silence about just how frequently this - and miscarriage, and other kinds of loss, occurs. The women and families I support often have no idea how common infant mortality - defined as the death of a child up through the first year of life - and other kinds of reproductive loss are, until it happens to them, and sisters, mothers, aunties and friends come out of the woodwork with stories of their own. Until then, loss is often shrouded in secrecy, and parents may feel entirely alone in their experience. This silence echoes of denial and shame for White communities with no contemporary cultural outlet for grief - a lack sorely in need of remedying.
Black American women, many of whom are descendants of indigenous and African cultures with some of the richest ceremonial, musical, movement, and prayer traditions of the world, suffer infant mortality at rates 2-4x higher those of their White American peers, regardless of income (and higher in some regions), and often bear the brunt of the heaviest expectations of “toughness”. For these women, silence can be a survival skill - a coping mechanism within communities already spread thin emotionally under the forces of systemic racism and resulting injustices including police brutality, economic disenfranchisement, for-profit incarceration of Black youth and systemic anchors tethering individuals to cycles of inequity, poverty, chronic health, and trauma. When the Oakland Better Birth Foundation holds our annual Infant Mortality Awareness Month events, a story we often hear is, “I haven’t had anyone to talk to about this.”
Offering space, permission and support in the process of grief is one reason for Infant Mortality Awareness Month - the other is Prevention. We cannot avoid all death - indeed White Patriarchy’s desire to play God already lends medicine so much hubris and reactivity instead of compassion and humility - but we can do better in preventing unnecessary suffering and loss, and it does not start in the hospital. It doesn’t even start - or end - within medical institutions, and one of the reasons we have a month for Infant Mortality Awareness is to illuminate that it takes ALL of our society to protect young Life in the ways we claim to be foundational to our national values. Of the top five reasons for infant mortality in the United States, at least four are preventable, and those preventable causes most impact African American mothers and infants disproportionately - meaning, the extreme disparity in these groups is not as apparent in factors like congenital defects, but very much so in, among others, maternal complications and low-birthweight.
BELOW: A table from CDC (2019) data, showing the leading causes of Infant Mortality, also illustrates (with author markup) how the three most directly preventable mortality causes also reflect the highest disparities between Black American and non-Hispanic White American infants.
We know, from research and from listening to mothers and parents, that continuous, culturally competent care, comprehensive education, and social network support of family transitions improves outcomes. As doulas, as midwives, as parents and as care team members, we see daily the impact we can make with steps that are simple, yet time-intensive, and so often dismissed, neglected, or outright rejected by for-profit health systems. These include basic aspects of human thriving often included in standard reproductive care in other countries, such as nutritional coaching, client-centered decision-making, accurate breastfeeding education, safe cosleeping guidance, hands-on labor support and informed choice advocacy in the labor room. We also see daily how chronic stress, food deserts, economic pressures, provider bias, and intergenerational trauma can sabotage a willing parent’s desire and capacity to achieve good health, receive respectful evidence-based care, and provide a safe environment for their growing child.
If fetal and infant death in the United States mirrored the rates of biological chance as seen in other Westernized highly-resourced nations, we might do a better job of supporting parents grieving unpreventable losses. But we don’t - in fact the United States ranks 33 among 36 economically comparable countries in infant mortality. Doing so requires an honest look at the ways our medical and cultural systems are failing to serve all women and babies, and looking at the ways racism - not race, particularly threaten the wellbeing and thriving of Black children and parents.
While the members and allies of the Oakland Better Birth Foundation primarily serve families during the perinatal processes of conception, pregnancy, birth and early postpartum, we must address that American infant mortality realities do not start with pregnancy and cannot be relegated to a “women’s issue” for only medical care providers and parents-in-crisis to concern themselves with - the right to begin life in peace and safety is an aspirational reality we have yet to achieve and will not achieve without collaborations across society. It starts in our classrooms, in our grocery stories- in the workplace, in family leave policies, in minimum livable wages, in advertising. It starts with the gritty work of dismantling White supremacist ideologies in our own hearts, minds, conversations and relationships - and substantive legislative change to dismantle the ways government and industry operate on exclusion, nepotism and greed. It starts with the regeneration of community food resources, equitable housing, accessible lifelong integrative health care, reality-grounded sex education. It starts with universal access to mental health services, and addiction recovery services, with nationwide updates to history lesson texts, with federally-funded reparations for the genocidal realities of enslavement, state-sanctioned eugenics and Jim Crow law only generations ago. It starts with the protection and respectful education and support of young female-bodied people through their transitions into puberty, into sexuality, into motherhood, and with the intentional upliftment of Black and Brown boys as good, capable, and love-and-life-deserving, just as every other child on Earth. It starts with the modeling and celebration of healthy Black families in wider conversations about justice, public health response, climate change, media and education.
It starts with me and it starts with you, dear reader, but it is not on us alone - this is why we name Infant Mortality Awareness Month, and this is why the Oakland Better Birth Foundation continually reaffirms our commitments to:
The right to and access to a doula for every birthing person.
Publicly available holistic, evidence-based education for reproducing people.
Access to training and mentorship for low-income birth workers and students and practitioners of color.
The advancement of diverse midwifery skills, practices and traditions with the aim of parent and child-centered integrated care.
Re-education in reclaiming and reviving the knowledge and modalities of indigenous healing arts and Afrocentric traditions.
Active participation in and resistance to legislative processes and products that traditionally exclude BIPOC and low-income communities in decisions about policies affecting their short and long-term health realities.
Maintaining community events, education offerings and networks for the direct and long-term support of families in crisis and recovery.