Tanika Cannon remembers the excruciating pain of labor when she was a teenager, pregnant with her first child. She remembers learning at the hospital that her baby was OK, but the hospital was full. Staff suggested she go to the hospital where her doctor practiced.

At the second hospital, pain drew Cannon in and out of consciousness. But now, decades later, she still vividly remembers these words: “We can’t find a heartbeat.”

“I didn’t know what to think, I didn’t know how to feel,” she said. “I was helpless. I was at their mercy of helping me — ‘Please, find my baby’s heartbeat. Tell me it isn’t so.’”

Later, Cannon would learn that she had suffered a placental abruption sometime between the first hospital and the second. She held her stillborn son, spent a day with him before saying goodbye.

That experience helped inspire Cannon, now a community health worker in Omaha, to join the Doula Passage Program, which trains women to provide support for expecting Black mothers.

“I think of Black women,” Cannon said. “I do. I think of the pregnant Black women that just don’t know. And if I can reach them, having that one-on-one conversation: ‘What do you need? How can I help you?’”

Run by the Omaha nonprofit I Be Black Girl, the doula program is part of a growing network working to improve maternal and infant health — an issue disproportionately affecting Black mothers and babies.

Nebraska had the fourth-highest infant mortality rate for babies born to Black moms in the country in 2019-2023, according to a Flatwater Free Press analysis of federal data. Black babies were 2.6 times more likely to die in their first year than babies born to white mothers, who also had a mortality rate higher than the national rate.

Babies born to Black moms also are more likely to be born prematurely. Black mothers are more likely to die and face serious health complications, according to state reviews.

National experts see a real chance for Nebraska to close its gap in infant mortality rates. The actual number of deaths is relatively low, and Black births are largely concentrated in Douglas County.

“I think the state of Nebraska could be the first state in the United States to achieve racial equity in infant mortality,” said Arthur James, a retired OB-GYN and leading voice on maternal and infant health issues.

But actions at the federal level threaten to worsen maternal and infant health, experts and advocates said. Medicaid cuts in the Trump administration’s recently passed signature tax and domestic policy legislation are expected to curtail health care coverage, while President Donald Trump’s crackdown on “diversity, equity and inclusion” is jeopardizing funding that some local initiatives rely on.

“We have to be intentional and creative around how we administer our work, but our mission does not change, and our work will not change,” said state Sen. Ashlei Spivey, who founded I Be Black Girl.

Ann Anderson Berry wasn’t surprised by the stark numbers.

A decade ago, the longtime Omaha physician helped launch a collaborative to improve care for women and preterm babies.

Through her work, Anderson Berry already knew this to be true: Black mothers and infants experienced disproportionately worse health outcomes than white moms and babies.

Black women died while pregnant or within a year of their pregnancy at three times the rate of  Hispanic women and nearly two times the rate of white women, according to the state’s most recent maternal death review.

Black and Hispanic women experienced unexpected, severe health impacts at higher rates, according to a state report on maternal morbidity from 2017-21.

Anderson Berry, who is now medical director for the Nebraska Perinatal Quality Improvement Collaborative (NPQIC) and heads neonatology for the University of Nebraska Medical Center, said poor outcomes for women and babies of color stem from barriers created by structural racism.

“I think when you’re standing at the bedside of yet another Black baby who is dying despite every available technology and all of the talent that you’ve recruited to care for infants in Nebraska, and it’s entirely out of your control because of processes that started two months, four months, eight months, or even 25 years before that day — it’s absolutely overwhelming to tackle this problem as a clinician,” she said.

Institutions and people have tried to address infant mortality in Douglas County for decades. But this moment feels different, say those who have long worked in the field.

NPQIC is in the midst of a statewide effort to help health care workers understand their biases and better communicate with people of different backgrounds, Anderson Berry said.

New groups have joined more established efforts — including at organizations like Charles Drew, UNMC and Healthy Nebraska — and brought renewed energy.

Last fall, the Douglas County Health Department relaunched a program that analyzes infant deaths. Those efforts had stalled out in recent years, said Jamin Johnson, who heads the department’s division of Public Health Strategy, Innovation, and Planning.

Now, a team is reviewing those deaths and will propose ways to prevent more in the future.

“I think that we are at a point in which people and organizations are maybe more receptive to actually listen to community voice(s) — communities that have been screaming at the top of their lungs for decades that this is happening and no one is paying attention,” Johnson said.

The Omaha Pathways Community HUB is taking a different approach to improving maternal health. The program deploys community health workers like Cannon to find and work with pregnant women to address 21 different needs, such as food, housing and transportation.

Saving babies can be complex, said James, the national expert. Research has found that most of a person’s health is determined by social factors like housing and food access, he said.

“We often, in our efforts to intervene and improve outcomes, don’t include, for example, addressing unemployment or transportation or housing,” James said.

Pathways already appears to be making an impact. The program has supported 84 births since March 2024, and 95% of them were full-term, said Kelly Nielsen, who heads the initiative.

Advocates have also had some success at the state level.

Some data is more accessible. Postpartum Medicaid coverage expanded to cover more women. And last year, state lawmakers unanimously passed a bill reimbursing Medicaid-eligible pregnant women for such services as targeted case management, nutrition counseling and breastfeeding support.

The pieces are there, said Bob Rauner, a physician and founder of Healthy Nebraska, but the state needs to step forward as a “neutral convener” that can coordinate disparate efforts and programs like Medicaid. That could be a crucial next step, he said.

Some of this work, though, will continue under new stressors, including what could be coming as part of the massive spending and tax bill Congress approved last week.

The Congressional Budget Office estimated the measure will cut federal Medicaid spending by about $1 trillion and result in 11.8 million more uninsured Americans over the next decade.

Medicaid was the payment source for 73% of Black mothers’ deliveries between 2021 and 2023 in Nebraska, according to state data — second only to Native American mothers and compared to 22.5% for white mothers.

Kay Johnson, a national expert in maternal and infant health policy, tracked the legislation closely and believes its consequences will be far-reaching. 

Women who need preventive care and prenatal care will lose coverage. Removing federal money will put financial pressure on states, potentially jeopardizing recent expansions of Medicaid coverage, like Nebraska’s postpartum care, she said. Community health centers and hospitals may close, affecting entire communities.

Even before that bill passed, actions by the Trump administration to rid the federal government of all work related to “diversity, equity, inclusion and accessibility” threatened funding and prompted organizations to change how they talk about this work.

Spivey said I Be Black Girl now often uses IBBG, its acronym. NPQIC’s “respectful and equitable care” initiative is now “respectful care.”

NPQIC gets the majority of its funding from federal sources, Anderson Berry said. The collaborative has grown in the past decade, and she worries its progress is at risk. Some of its grants and projects are specifically aimed at equity. 

It has forced NPQIC and others to talk about and approach the problem indirectly, “which is incredibly difficult,” she said. “But it is the situation that most researchers and public health policy researchers are in right now.”

About a third of I Be Black Girl’s funding is in jeopardy. It’s reducing staff and slashing its budget from $3.6 million to $2.1 million, according to Spivey. It’s also launching a political action committee to focus on “building Black political power across Nebraska.”

“We can’t let fear or the threat of funding cuts or that you can’t do this stop integral work that we know is transformational for all people,” Spivey said. “Because when you solve for those that have the worst outcomes, it creates and lifts the boats for everyone.”

Spivey was motivated to start I Be Black Girl after her mother died 14 years ago. She died a preventable death at 45 years old, Spivey said, due to neglect of her reproductive system.

“This does not have to be our reality,” Spivey said. “This should not exist.”

The organization, which broadly focuses on serving Black women and girls, created the doula program with NPQIC and several other organizations.

That program will soon have trained 76 doulas since 2023. Research suggests that doula support can lead to better outcomes for moms and babies. Participants get a stipend to help launch or bolster their doula businesses and opportunities for continued education.

Cannon, the community health worker whose experience as a teenager helped lead her to the doula program, met with the rest of her cohort a couple weeks ago for a session focused on healthy nutrition for pregnancy and postpartum. They picked collard greens and herbs from a rooftop garden, prepared soup and tested their knowledge on vitamins and nutrition myths.

Teaching the class was Alisha Waugh, who was part of the inaugural IBBG doula cohort. Waugh said she has attended over 130 births, in addition to those of her own five daughters, first supporting friends and now formally as a doula.

She recounted a birth where her client had been fighting with the baby’s father, then came into the hospital and had high blood pressure. Hospital staff feared preeclampsia, but Waugh stepped in and asked for extra time to let her calm down. It may have avoided a C-section.

At other times, her role has been as simple as providing a cold towel. Part of being a good doula, she said, is balancing relationships with nurses and doctors and with the client.

“I’m Team Safe Baby,” Waugh said. “I don’t care what that looks like … it just needs to make sense to me, and it needs to be explained in a way that gives moms all of their options.”

Cannon went on to have two healthy daughters. She was working in a clinic a couple years ago when her supervisor and a friend encouraged her to consider a new position: helping pregnant women through the Pathways program. Being with the participants through their pregnancies, along with her own loss, motivated her to apply for the doula program.

“I think it’s part of my healing,” she said.

Sometimes, she doubts what difference she can make, and at first she wasn’t sure about targeting a specific population. But she knows that she could have used the extra help.

“And I can work with these moms until these babies are 1, to see those toddlers moving around and walking and to know that I played a huge role in educating and preventing,” she said.

This story was originally published by Flatwater Free Press, an independent, nonprofit newsroom focused on investigations and feature stories in Nebraska that matter. Read the article at: https://flatwaterfreepress.org/nebraska-is-one-of-the-worst-states-for-b...