Tackling racial disparities in infant mortality that reaveal a 'sickness in Kalamazoo'

Statistically speaking, in Kalamazoo, just being born black leaves a baby four times as likely to die in the first year of life.
Kama Mitchell wasn't thinking about infant mortality statistics when she was pregnant with her second baby. She was unaware of the United States' abysmal infant mortality rate and the large disparity in outcomes between white and black babies. And she didn't know that in a matter of months her experience would become part of that growing statistical gap.

In 2000, Kama was pregnant and living in Grand Rapids. She was 25, a single mother to a 5 year old, and working full-time in a retail store. About mid-way through her pregnancy, she intuitively felt something was not right. Her doctor obliged with two ultrasounds, but nothing seemed out of the ordinary.

As soon as her baby, Nahmid, was born, her intuition was affirmed. Blue and not breathing, he was immediately intubated. He was rushed to the Neonatal Intensive Care Unit (NICU), where he was tube-fed because he was unable to suck or swallow. Nahmid came home at three months with a stomach tube and and an unconfirmed congenital diagnosis.

After only a month at home, they were back in the hospital. Nahmid had pneumonia. After pediatric staff intubated both lungs to drain fluid, Kama watched him writhe in pain, unwilling to be held or let anyone touch him. She couldn't watch him suffer any longer. She wrote a Do Not Resuscitate (DNR) order, saying that if the tubes came out, they couldn't be put back in. A single mom, with little support, she'll never forget the pediatric physician who affirmed her choice. That validation was really important in her ability to cope and not question her choice. Nahmid died shortly after, at only four months old.

Racial disparities in infant mortality

The death of a baby before his or her first birthday is called Infant Mortality. The United States ranks 55th among the rest of the world's countries, meaning 54 other countries have better odds of a baby not dying in its first year than we do. The U.S. loses 6.17 per 1,000 babies in their first year, despite the fact that the U.S. spends more money on maternity care than any other country in the world.

It's not until we look at the racial gap in infant mortality statistics that it gets really embarrassing. Nation-wide the disparity in outcomes between white and black babies is about double, meaning that being born black makes it twice as likely a baby will die before his or her first birthday. In some communities, though, that gap is even wider. Like in Kalamazoo.

The Michigan and Kalamazoo infant mortality rates are nearly consistent with the national rate at 7:1,000 and 6:1,000, respectively. But, when those numbers are broken down by race, Kalamazoo ranks as having the second worst racial disparity in the state, just behind Jackson. According to the Michigan Department of Community Health, between the years 2011 and 2013 (the most recent statistical data available), the black infant mortality rate in Kalamazoo County was 15.5:1,000. The white infant mortality rate? 3.9:1,000. That leaves a gap of 3.97. Statistically speaking, in Kalamazoo, just being born black leaves a baby four times as likely to die in their first year of life.

Kalamazoo's gap and the need for a task force

Grace Lubwama is the Executive Director of the Kalamazoo YWCA. She knows more than a little about the disparities in infant mortality. She spearheaded a task force in the Antelope Valley in California in 2004 called, "The Best Babies Collaborative," which tackled the racial gap in infant mortality rates in that community. Under her leadership and with heaps of community investment and effort, Lubwama says the black infant mortality rate in the Antelope Valley plummeted over 10 years from 32.7:1,000 in 2002 to 9:1,000 today.

When she moved to Kalamazoo a little over a year ago to take the position with the YWCA, she noted the county's infant mortality disparity, and how the gap has increased in the past 10 years (up from 3.25 between the years 2003-2005). She thought, "Why do we have such a disparity? If we can do it well for the white babies, we can do it for the black babies in this community. We see that gap widening, which is really such an injustice."

Lubwama found Kalamazoo's racial gap -- nearly double the national average -- perplexing. "In L.A., the Antelope Valley was far away - there was no access, we had one hospital, we didn't even have a federal qualified clinic, so there was no free clinic in that community. Women could not travel for two hours in traffic to downtown LA and then drive back."

But, she notes, Kalamazoo is different. "We have two huge hospitals, we just opened a medical school as well, we have a federal qualified clinic.... the distance between the two hospitals is not even far away... it's very, very interesting. Why do we have that high of a disparity?"

Tackling the injustice of survivability based on race fits neatly within the YWCA's mission to eliminate racism and empower women. Lubwama notes that 80 percent of the women in the YWCA's shelter program come to them pregnant. Knowing that domestic violence is a risk factor for infant mortality, and that the majority of women who are losing babies are poor, black women, Lubwama knew that the organization needed to be a key player in spearheading a task force on infant mortality disparities in Kalamazoo.

Last fall, the task force came about when representatives from Bronson Hospital, Borgess Hospital, The Family Health Center, The Health Department, and W Med began meeting to discuss the issue and to look at the data and the existing resources available to at-risk residents.

While Lubwama knows what systems and processes worked in the Antelope Valley, she also recognizes that each community is unique. "The conversation around race in Los Angeles is completely different from the Midwest. When we talk about disparities, we need to talk about what is unique in our community -- based on our culture, based on our experience, based on our history within the community so that we have a conversation that is comfortable for us."

Cultural competency and lack of coordination

Fifteen years after the loss of her child, Kama is a birth doula and childbirth educator. She says she sees a lack of ability to trust maternity care providers across the board for women of all races and socio-economic backgrounds. "They get into these institutions and they feel like they have no say over their own body and what's happening next."

But, as one of very few women of color serving women from her community, she says there is a real lack of trust in a system when women aren't able to identify with a care provider or educator, or, in turn, feel understood by them. "I've had clients say to me, 'I don't want to go to those hospital classes because I don't want an old, white woman talking down to me.'"

She explains, "When you're on Medicaid, and you're poor, and you're young, and you're black, and you don't have a husband, you get placed into this box right away, and it shapes how you get treated your whole pregnancy and even after."

That's why Lubwama recognizes the importance of ensuring that they recruit workers for programs that are coming from the communities that the most critical women live in. In the Antelope Valley, the task force worked with churches in the black communities, and she says that had a lot of impact. Kama says, "It would feel really good to be talked to by someone who knows you on a cultural level, who maybe has been through a little bit of what you've been through, or who knows your pastor, or knows your auntie. It feels safer, it feels like you could put more trust into the process."

Cultural competency isn't the only barrier that's been addressed, though. While Kalamazoo is overflowing with resources, Lubwama has noted a lack of coordination between those resources. "I call it a sickness that we have in Kalamazoo. We do not coordinate services. Everybody is doing their own thing." She says a lot of providers can't even articulate what other programs are doing and so women may not be getting referrals to programs that could help.

Lubwama notes the community's investment in the children of Kalamazoo through the unique gift of The Promise scholarship. She says, "What a wonderful gift, but the reality is in this community, if you're born black and poor, The Promise doesn't make sense because you don't know if your baby is going to survive for their first birthday."

The Target: 6:1,000 by 2020

The goal of the task force is huge -- reduce the black infant mortality rate to 6:1,000 by the year 2020. That's a reduction of more than half in only five years' time. Lubwama knows it can be done, and she  credits the community investment for the Antelope Valley's successes. "When they talk about the village taking over, the village of the Antelope Valley really took over this issue, they embraced the issue."

As a black woman who's lost an infant, Kama says, "I don't know if losing him really directed me into this work, but this actual initiative that's happening, it feels very close to me because of being on both sides of the coin. As a young, black woman getting in this box -- single, having this baby, single mother -- and then on the flip side, going through this experience, being older now and seeing the disparities in our community, and feeling like I have some wisdom and resources to give back... it really fuels me."

She feels committed to changing not just systems and programs, but shifting the level of power within the young women she works with, which is why she has been attending the community meetings that the task force has held.

The task force operates on several tiers of communication -- a small group of stakeholders that focus on strategy and meet most frequently, a slightly larger steering committee, an even larger advisory group, and large, community meetings that are open to the public. Lubwama says that the task force has completed the data and resource evaluation and will soon be moving into speaking directly with women in the community who have lost babies in order determine what is happening in their lives, and what this initiative could do to help them.  

After that comes the strategic plan, which will be presented at the next community meeting, scheduled for November 2015. "I don't think there is any baby that deserves to die because they don't have resources," Lubwama says. "No child deserves to die before their first birthday."

You can keep an eye on the YWCA website and Facebook page for updates on the initiative and future meetings.

Kathi Valeii is a writer, speaker, and activist living in Kalamazoo. She writes about gender-based oppression and full spectrum reproductive rights at her blog, birthanarchy.com.

Photos by 
Susan Andress
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