About 15 years ago, brain tissue from 33 infants who succumbed to Sudden Infant Death Syndrome was taken from Northern Plains tribes, including Pine Ridge, Standing Rock and Cheyenne River, as part of the Aberdeen Indian health Service Infant Mortality Study. It is never an easy decision to let the remains of our dead be studied, even more so when they belong to our infants, our most vulnerable, and I still want to hope, our most treasured relations.
In this case, lead researcher Hannah C. Kinney, MD, at Boston Children’s hospital and health scientist Marian Willinger, Ph.D., of the Pregnancy and Perinatology Branch of the National Institute of Child health and human Development, worked collaboratively with the tribes, securing tribal resolutions of support, then following through with respectful research protocols that included rematriation of the infants’ remains, performed by respected tribal spiritual leaders.
I was invited to attend a National Institutes of health SIDS Federal Partners meeting last December by Judy Thierry, Maternal Child health coordinator at IHS, to share the remarkable story of the rematriation of the infants’ ashes by my mother-in-law Beatrice Holy Dance Long Visitor and sister-in-law Loretta Afraid of Bear Cook. Delegated by tribal leaders to guide the infants’ “blessed journey,” the well-known mother-daughter team flew to Boston at the end of August 2009 to rematriate the remains. They were following an ancient Oglala ethos to “bring their spirits home.”
I use the word rematriate here to describe the process of returning sacred, human biological remains, productions of women’s bodies, whether blood, breast milk or other genetic materials to their place of origin, that lay in the responsibility of the “women’s side of the house.”
Staying at Kinney’s 18th century home, the two didn’t rest well. Loretta said in the bedroom of the Boston home, she and her mom were up most of the night, hearing the little shoes of Indian children running around them. At 3 a.m., the most sacred hour when all life on earth stands still to hear the humble cries of sincere human beings, Mom and Loretta “walked into ceremony” as they received two boxes of the infants’ incinerated remains; they then walked them around a big tree in the Children’s hospital’s garden courtyard “so that they could receive them back from the Four Directions.”
The Federal Aviation Administration prohibits human remains on commercial airline flights, but to the credit of the researchers at BCH, when Mom and Loretta went through airport security with a letter of clearance, “a way opened up” and they were waved through. The contents of the boxes, secured in a backpack, went undisturbed.
Back at Pine Ridge, with Chief Theresa Two Bulls, staff persons from the Aberdeen Area Infant Mortality Study and the tribal health administrator in attendance, Mom, Loretta and Holy Man John Gibbons performed a ceremonial release of the infants’ spirits at the American horse/Afraid of Bear family Sundance grounds in the Paha Sapa, the place where the Four Directions meet.
Loretta said that what was expected to be a sorrowful moment transformed into joy when the heavy ashes, “happy to be home,” didn’t fall to the ground as they were spilled from the boxes but were carried in the updrafts of the canyon and went tumbling high into the winds, as if children were dancing, playing in the air currents that carried them across the sky. Loretta said when they released the souls of the babies, “their spirits were laughing.”
In December 2009, 21 scientists were convened by health Resources and Service Administration, the Maternal and Child health Bureau, and the Eunice Kennedy Shriver National Institute of Child health and human Development. New findings since the SIDS prevention Back to Sleep Campaign was launched in 1994—and the continuing American Indian disparity in infant mortality rates—prompted this first-ever federal level meeting. Its goal: “to promote ongoing relationships among federal SIDS partners by defining the current landscape, sharing information and program activities, describing sleep related infant deaths and infant safe sleep, identifying opportunities for collaboration and closing gaps, visioning the future and next steps, and documenting findings and recommendations in a written report.”
It was a rigorous agenda, in which Willinger presented findings from the Aberdeen Area Infant Mortality Study. Results from an analytical neuropathology technique, “molecular autopsies,” revealed that gene function mutations in the infants’ brainstems account for failures in their cardiac function and respiratory effort, mutations resulting from binge drinking during pregnancy.
At Pine Ridge, Two Bulls and her administration deals with the many challenges of securing federal aid to tribal government and budgetary issues for the nine districts she serves. She expresses the frustration that “we have lost our way of sitting down and talking to one another,” and points to our dire need to promote sexual and reproductive health education of tribal youth, and for our young parents to actually learn how to be parents. Cycles of violence, trauma, substance abuse and what Lakota anthropologist Bea Medicine called “the culture of drunkenness” need to be broken so nations can be restored. Infant mortality is the strongest overall indicator of the health and well-being of a people. The scourge of alcohol is evidenced in the social sacrifice of our most vulnerable young at the genetic level, where our ancestors live.
Throughout the year since the ashes of the 33 innocents were returned to the Four Directions, Beatrice and Loretta are committed to “walking with their spirits.” Let’s join them in their “blessed journey” by strengthening communities at every level of practice. Interweaving Western science and indigenous knowledge, including our life-honoring ancestral values, we must force our nations to reach the highest attainable level of physical and mental health.