Across the infant death spectrum, black babies are disproportionately affected. Too many cities across the US, including my home city of Detroit, have disproportionately high black infant mortality rates. In 2016, the black infant mortality rate in the United States was 11.4 deaths per 1,000 live births compared to 4.6 deaths per 1,000 for white infants. That includes a disproportionate number of sleep-related infant deaths among black and brown babies from either Sudden Infant Death Syndrome (SIDS) and Accidental Suffocation and Strangulation in Bed (ASSB.) Both of the tragedies fall under the Sudden Unexplained Infant Death (SUID) category.
Every year, about 3,500 infants die from sleep-related deaths, according to the CDC. It is any family’s worse nightmare to lay their baby down to sleep at night and the baby does not wake up. But the rates of SIDS and accidental suffocation are two to three times greater among black and brown babies. Nationwide, SUID rates per 100,000 live births for American Indian/Alaska Native (205.8) and non-Hispanic black infants (181.0) were more than twice those of non-Hispanic white infants (85.0). Black infants die from SIDS at nearly twice the rate of white infants.
Racial disparities in infant mortality, whether from the complications of pre-term birth or low birthweight or the complexities of SIDS, should not exist. As the most advanced nation in the world, we owe it to our most precious and vulnerable citizens to work harder to find solutions that work. As many health organizations talk about “equity” it’s time to move past business as usual practices to achieve it.
To be clear, public health campaigns have had considerable success in reducing the rates of SIDS overall. But some have demonized co-sleeping in all forms without understanding the cultural nuances of bed sharing or the impact of those messages on the breastfeeding relationship.
In the US, black mothers became the targets of sensationalized public health campaigns warning about the dangers of co-sleeping. For example, a highly criticized 2011 Milwaukee Department of Health campaign featured an infant lying alongside a butcher knife! Similar efforts sought to scare black mothers, but never educate or trust that black women could co-sleep safely. This not only impacted black women’s breastfeeding rates but ignored research that co-sleeping helps regulate infant breathing and thereby can be protective against Sudden Infant Death Syndrome (SIDS).
It’s time to develop approaches that are actually “culturally relevant” beyond the buzz talk and center communities by listening to families and not just handing out pamphlets.
Community-centered approaches can include efforts like First Candle’s Straight Talk for Infant Safe Sleep program, which uses trained community ambassadors to work with providers to explore the role of implicit bias in how new and expecting parents are engaged around safe sleep practices. The program also includes a mobile unit, that decanters the hospital or doctors office, and goes directly into the community to talk about safe sleep and breastfeeding with moms, dads, grandparents and other caregivers, and provides them with links to community resources.
For those who have unfortunately lost a baby, we must stop normalizing infant death in our communities. The Black Infant Remembrance Memorial, is a black-led movement to make sure no black baby is forgotten and to provide resources and a community of peer-support online. The interactive virtual community is a source of solace for families looking to keep the memories of their young babies alive.
My organization, Black Mothers Breastfeeding Association (BMBFA) has been centering black moms for twelve years by servicing, advocating for and amplifying the voices of black mothers. In our work we listened to moms when we created the Black Mothers Breastfeeding Club, a national model that brings mothers of a similar socio-cultural background together for mother-to mother support and encouragement for pregnancy, parenting and breastfeeding. The success of that club model allowed us to think creatively about how we could use technology to maximize the group experience. Earlier this year we received a $100,000 grant from the Michigan Health Endowment Fund to develop an app that will enhance parenting and breastfeeding groups by simplifying and streamlining participant interaction, data collection and reporting activities. All of these innovations came from listening to mothers and families and their needs.
Earlier this year another innovative model unfolded in Detroit with the first Birth and Breastfeeding Hackathon. which took place during Black Breastfeeding Week (August 25-31). The hackathon model itself has been around for years, used by creatives and engineers to create a marathon-like environment to generate solutions. The idea of a multi-disciplinary approach that includes out-the-box thinkers and non-traditional thought partners is exactly what the black maternal and infant mortality crises needs.
We partnered with the Make the Breast Pump Not Suck Project team, which has a successful track record for developing hackathons focused on breastfeeding. Their previous events hacked the breast pump, an important technology for moms, and later, the policies that enable breastfeeding. But the Detroit hackathon brought a new evolution—centering community innovations. The concepts and solutions presented were from Detroit moms—they were the “experts” and the others skills were there to support them. The two days of events, activities and team designing, concluded with a judging panel and prizes for the winning ideas.
We saw creative solutions for lactation support, plans for Birth Detroit, the city’s first free-standing birthing center and even ideas to improve nutrition options for pregnant and lactating women. All of these came from Detroit mothers. I’m confident every other city has similar solutions in their communities, if only we would ask and create opportunities for those ideas to be supported and developed.
To make sure this is a replicable concept, the Black Breastfeeding Week leadership team created a powerful resource, “How to Run Your Own Hackathon or Innovation Event Toolkit,” a step-by-step toolkit, adapted from the Detroit hackathon. We need other communities across the country to choose innovation over business as usual.
This model of community first and acknowledging black mothers as the experts on the issues that impact them the hardest, merits national replication, not just in hackathons but in federal policies, in state and city public health offices and by community-based organizations. Instead of assuming that academic research holds all of the answers, we should first look to the community for solutions and as equal partners.
This isn’t rocket science, but it does mean disrupting power systems that have long favored scientific research over experiential knowledge. And it means centering black women as we continue to address racial disparities in birth, breastfeeding and infant death rates that have persisted for decades. SIDS Awareness Month is an important time to think about how systems have failed black babies and the time of culturally-tone deaf public health messaging must end. When communities lead, we all win.
Kiddada Green is a Detroit native and the founding executive director of Black Mothers’ Breastfeeding Association (BMBFA). Ms. Green is a member of the inaugural class of the W.K. Kellogg Foundation’s Community Leadership Network Fellowship Program. As an expert in community-centered approaches, her recommendations were included in The U.S. Surgeon General’s Call to Action to Support Breastfeeding and the State of Michigan’s Breastfeeding Plan. She has been featured in various media, including Ebony Magazine.