“We stopped keeping statistics on the number of Native moms and babies that are lost in our region; it was just too upsetting,” said Millicent Simenson, co-founder of Mewinzha Ondaadiziike Wiigaming.

In light of growing awareness of the negative impact of institutional racism on health for women of color, especially Black women, a new analysis argues the experience of Native American women closely parallels that of African American women. An emerging community-centered and culturally relevant response is offering families hope amid staggering rates of maternal and infant mortality.

Mewinzha is a Native American holistic care center for pregnant, birthing moms and their families in Bemidji, Minnesota. Simenson, of the Mandan Hidatsa and Arikara tribes, and her partner at Mewinzha, Roberta Decker of the Leech Lake Ojibwe tribe—both licensed nurses with extensive experience working in mainstream health care—offer childbirth, breastfeeding education, and doula training for both Native and non-Native people. They also serve as volunteer doulas as time permits.

“Even though we don’t get any referrals from mainstream health care, we continue to do the work because Native people are asking for it, and we think it helps,” Simenson said.

Released today, the analysis from the Center for American Progress, shared pre-publication exclusively with Rewire.News, includes data supporting Simenson’s observations. The analysis, titled “American Indian and Alaska Native Maternal and Infant Mortality: Challenges and Opportunities,” finds that official and ad hoc practices, including traditional Native concepts of community support, are playing a critical role in improving access to health-care services.

Although health and birth and death records notoriously underreport racial classifications for Native Americans, the available data is startling.

In 2015, mortality rates for American Indians and Alaska Native babies under the age of 1 was 8.3 per 1,000 births versus white non-Hispanic babies at 4.9 deaths per one thousand births, according to the Centers for Disease Control and Prevention (CDC). Mortality rates declined for infants of all races except for American Indians.

Native American infants are twice as likely as non-Hispanic white infants to die from Sudden Infant Death Syndrome (SIDS), and are 70 percent more likely than non-Hispanic white infants to die from accidental deaths before the age of 1. Data from the Urban Health Institute collected from the organizations’ 33 nationwide health-care locations found that maternal mortality rates for Native women was 4.5 times greater than non-Hispanic white women.

Since Native Americans constitute approximately 2 percent of the U.S. population, they are frequently overlooked in public health data, according to the authors of the analysis, Lucy Truschel and Cristina Novoa. Physicians often misreport racial identity for Native Americans in medical documents. Birth and death racial data may also be inaccurate. The mother usually indicates racial identity, but some tribes may only recognize members whose fathers are Native. Also, since physicians or coroners often report racial identity for death certificates, the possibility for misidentification increases. The CDC, for instance, uses information from public health and birth and death records for its data reporting.

The CAP authors maintain that the actual rate of Native American maternal and infant death is much higher than shown by available data.

In the series “Lost Mothers,” ProPublica and National Public Radio journalists collected over 200 stories from African American mothers who overwhelmingly reported feeling devalued and disrespected by medical providers. Journalists also cited a 2010 study by Arline Geronimus, professor at the University of Michigan, who describes the cumulative physical impact of enduring stress, such as living with racism, as “weathering.” Geronimus links weathering to a broad range of health disparities, including high maternal and infant mortality rates.

Native women also bear the burdens of negative health impacts from historical trauma borne out of past federal policies supporting genocide, forced migration, and cultural erasure. Examples include forced placement on reservations, attendance at boarding schools, relocation programs moving Native peoples from home communities to cities. This premise is supported by research such as the Adverse Childhood Experiences Study connecting stress and the risk of developing health problems such as addiction, depression, intimate partner violence, suicide, diabetes, liver disease, and poor fetal health.

Native women may be reluctant to seek services from mainstream medical professionals; they are 2.5 times more likely to receive late or no prenatal care compared to non-Hispanic white mothers. Barriers to getting health care include lack of money and transportation to travel to facilities far from home, lack of health insurance, and fear of discrimination.

According to a study by the Robert Wood Johnson Foundation and the Harvard School of Public Health, 23 percent of Native American respondents reported being discriminated against when visiting the doctor or clinic. Fifteen percent reported avoiding visiting the doctor altogether due to fear of discrimination.

“I’ve seen a lot of racism when it comes to how our women are treated by health-care professionals,” said Rebekah Dunlap, a public health-care nurse on the Fond du Lac Reservation in Minnesota. “Native people get so judged by mainstream health care professionals who don’t understand our communities or know where we’re coming from. So many of our people are living in survival mode, but doctors simply see us as non-compliant in terms of our health status,” she said. Dunlap is a member of the Fond du Lac Band of Ojibwe.

Simenson described her experience supporting a client during a prenatal visit at a local clinic. “She was dreading going to the clinic because of a bad previous experience. The receptionist ignored her and skipped to the next person as she waited at the desk to get her next appointment,” Simenson recalled.

The client got angry and began to storm away. “I’m not going to do this anymore; I’m not going back there,” she said.

Simenson acknowledged the client’s feelings, but reminded her it was important to set up the next appointment. With Simenson’s support, the client went back and scheduled her next visit. Simenson also called the receptionist’s attention to the client’s experience.

“I’m not sure I would describe the receptionist’s behavior as racially motivated, but it really doesn’t matter because the client sincerely felt that it was and wouldn’t have scheduled her next appointment because of it,” Simonsen said.

Pregnant people who use drugs may also fear going to the doctor. Use of opioids among Native Americans has skyrocketed. Native American Minnesotans were five times more likely to die of drug overdose than white Minnesotans in 2015, according to the Minnesota Department of Health, while comprising only 1.1 percent of the population in that state. In Wisconsin, Native American infants were disproportionately affected by neonatal abstinence syndrome (NAS) compared to other ethnicities.

NAS is a set of symptoms—such as tremors, excessive crying, and diarrhea—that newborns can present with at birth if they were exposed to opioids in utero. NAS can occur if a person uses illicit drugs, prescribed medication, or even methadone or buprenorphine, medication-assisted treatments used to treat opioid-use disorder recommended for pregnant people.

A common medical practice for infants born with NAS includes separating baby and mother for 72 hours while baby is placed in a neonatal intensive care unit (NICU) where they are treated for withdrawal symptoms. In some instances, mothers may be charged with child abuse or other crimes and/or have their babies removed from their care by government social service agencies.

Pregnant patients “seem to know which hospitals won’t separate them from their babies,” said Birdie Lyons, Family Spirit program supervisor for the Leech Lake Ojibwe tribe in Minnesota.

Indian Health Service (IHS) facilities—those providing health-care services to American Indian and Alaska Native families in the United States—in the Bemidji area refer pregnant clients to Sanford Hospital in Bemidji for birthing. According to Lyons, Sanford Hospital separates babies with withdrawal symptoms from their mothers for 72 hours. In response to Rewire.News’ emails about this practice, Katie Johnson, vice president of marketing and communications for Lake Region Healthcare, wrote, “our Director in that department and our [chief nursing officer] … determined we would elect to decline to provide comments for this article.” Sanford Hospital is part of Lake Region Healthcare.

The bonding benefits of skin-to-skin touch between mothers and babies, as well as breastfeeding newborns, outweigh the risks, according to Lyons.

Mainstream medicine’s attitudes about allowing babies with NAS to remain with mothers are changing. The Canadian Paediatric Society recommends babies and moms stay together. Leading experts on the issue in the United States have noted that automatic entry into the NICU is not always the best care and, instead, practices like keeping mother and baby together and breastfeeding often result in the best treatment.

“We don’t judge them at Family Spirit,” Lyons said. “Although we’re mandated reporters, we take our clients at their word about their drug use. Our overriding concern is keeping track of the baby and mother.”

“Some of our moms won’t seek government assistance because they’re afraid of having [their] baby taken away,” Lyons said. “But they’ll come and see us at Family Spirit because they know they can talk to us. I don’t care how addicted they are, moms don’t want to hurt their babies,” she added.

Family Spirit is a home visiting program of the John Hopkins Center for American Indian Health designed to promote health and well-being for parents and children. Family Spirit has programs in over 100 tribal communities in both urban and rural areas across the United States. In its evidence-based model, tribal communities determine the cultural aspects of the service and integrate their understanding of health. Community paraprofessionals regularly visit pregnant women and families in their homes, providing support during and after pregnancy.

“Home visiting has helped us provide services in a way that connects us to our culture and way of life; it’s something that’s always been there for us, it’s in our blood,” said Lisa Abramson of the Inter-Tribal Council of Michigan Inc.

The Inter-Tribal Council incorporates the Family Spirit Program in its services. “Almost all 12 of our tribal communities in Michigan do some form of home visiting for families,” Abramson said.

Young women get little education or support from doctors during their prenatal visits. “They’re given a packet to take home and read; that’s how they’re supposed to learn about their pregnancy,” noted Simenson.

“The mainstream medical culture rushes you through your appointment. You don’t get much information about preventative medicine beyond pamphlets,” Dunlap added.

Although Family Spirit provides support and education about pregnancy and child development, food budgeting, and preparation, it is the cultural and spiritual support that is most popular, according to Lyons.

“People are crying out for knowledge of our Ojibwe culture, language, and spirituality,” she said.

Traditionally Ojibwe families would hold ceremonies welcoming babies to the tribe and family. Since many families may no longer know or practice their ways, Lyons organized a public Welcoming Baby Ceremony for the first time on the Leech Lake Reservation.

Tribal chairman Faron Jackson said, “The traditional practice of acknowledging the gift of a child is no longer carried out, but we are reviving it as a means to encourage the community to come together and create positive energy.”

Lyons also organizes camping trips for clients, teaching them how to gather and use traditional plants and medicines.

Other Family Spirit programs may help connect clients to traditional healers and elders who may help them learn how to make cradleboards and other cultural practices involving birth and child care.

In the discussion paper “What’s Killing our Children”—published by the National Academy of Medicine in March 2017 by Teshia G. Arambula Solomon—researchers note that family and community connectedness, spirituality, cultural identity, and other cultural norms have been found to be protective factors in improving and reducing risk factors. For instance, Nina Eusani, registered nurse and maternal child health nurse with the Family Spirit Program in Detroit, noted that the safe sleeping environment recommended by the Academy of Pediatrics closely correlates to that of the traditional Native cradleboard. The cradleboard offers a firm, simple sleeping base on which the swaddled baby rests in a supine (on the back) position. Unsafe sleeping environments with soft mattresses and excessive blankets are linked to SIDS.

Mike Carney of the Lakota Nation teaches Native fathers how to make cradleboards. Traditionally, fathers not only make cradleboards, they have designated roles in pregnancy and the birthing process, according to Carney.

Native people consider birth as a ceremony; the man may gather plant medicines for the pregnant mom and keep a fire going as the mother delivers her child, according to Carney.

Trained as a doula in the Mewinzha program, Carney assists and supports fathers. “I help them get past the giggle factor and move towards feeling more confident and less intimidated by birthing and being a father,” he said. “If we can bring our kids into this world with ceremony, I think they will have a good head start.”

Novoa, a policy analyst for early childhood policy at the Center for American Progress, explained to Rewire.News that the organization’s goal with the analysis is “to raise awareness about the health disparities among Native American mothers and infants and create public demand for action.”

Efforts to raise awareness about the issue may be working. The U.S. Senate Committee on Health, Education, Labor, and Pensions voted on June 26 to support legislation encouraging additional research into rates of maternal death. The Maternal Health Accountability Act now heads to the full Senate.

“The passage of the bill is an important first step that will help us learn what we’re up against,” Novoa said.

For Native people supporting their community, the goal is centered around empowering birthing parents. “They say that historical trauma is in the DNA of Native peoples, but love is in there too. We need to focus on that and bring it to the surface,” Carney said.

CORRECTION: A previous version of this article identified Millicent Simenson and Roberta Decker as registered nurses; they are licensed practical nurses.