Last year when writing a column about the need for Iowa to invest in sexual and reproductive health, I stumbled upon alarming statistics about Iowa’s racial disparities in infant mortality.

I wasn’t necessarily surprised — I’ve interned at a health equity nonprofit before and have a background in diversity, equity, and inclusion efforts. I knew that, generally, Black people and communities of color face worse health outcomes.

But my continued research and conversations with Black women working in health advocacy have brought to light deeply rooted systemic issues hidden behind the statistics. Across the country, Black babies are significantly more likely to die than babies in other racial or ethnic groups — and Iowa is no exception.

Infant mortality in Iowa – the numbers 

Infant mortality is a term used when a baby dies before reaching 1 year old. The infant mortality rate for Black Iowans from 2016-19 was 10.2 deaths per 1,000 live births, while for white Iowans, it was 4.6.

This means Black babies were roughly twice as likely to die before reaching their first birthday than white babies. While the gap is steadily closing, the disparity remains alarming.

Data taken from 2016 to 2020 showed infant mortality for Black families was 5.13 deaths per 1,000 live births, and 4.19 per 1,000 for white families. For families who indicated a race other than Black or white, the rate was 6.11 per one thousand.

Data visualization by Molly Milder/The Daily Iowan

While these numbers went down between 2019 and 2020, there is still a clear disparity and a need to address what is causing lower health outcomes. Even further, it is possible these numbers are not accurate and may under represent actual infant mortality rates.

Ebonie Bailey is the co-founder of the Black Doula Collective, a nonprofit that works to bring quality educational opportunities focused on Black communities to empower reproductive health. She explained the only way infant or maternal deaths are reviewed by the Iowa Maternal Mortality Review Committee board is if the pregnancy box is checked on the death certificate.

The Iowa Maternal Mortality Review Committee, which operates under the Iowa Department of Public Health, is meant to examine all pregnancy related deaths within a year of the end of the pregnancy. They look at medical records and investigate the cause of death in hope of reducing mortality and morbidity.

Bailey referenced a Congolese mother in Des Moines who died in childbirth in August of last year. Bailey said the mother’s death went unreported because the pregnant box was not checked on the death certificate. She said her death was only recognized as maternal mortality after her husband also tragically passed away in a car crash, leaving the children without both parents.

If there is no standard to review all deaths related to maternal mortality or infant mortality, then we are failing to address and evaluate what is really going on. This erasure not only downplays the real disparities but erases the opportunity to hold the health care system accountable for its possible role in the death, especially if the cause could have been deemed preventable.

Fundamentally, there needs to be an expectation that if a mother or infant dies in birth, those hospital records are reported and reviewed. In order to address the disparities in the health care system, there needs to be accountability in showing that disparities exist and evaluating what is going on.

Examining contributing systems 

There are a number of systemic issues that cause chronic increased stress levels among Black women which can contribute to infant mortality.

Black people are more likely to deliver prematurely, said Mbi Ndakor, a neonatologist in Waterloo, Iowa. Premature births, which happen when a baby is delivered before the pregnancy hits 37 weeks, can cause long-term health issues in infants, like breathing and feeding difficulty, hearing loss, vision loss, as well as infant mortality.

A study showed that increased chronic stress levels in Black women from minimal social support, racism, and poor nutrition can lead to preterm births. Generations of systemic oppression have literally weathered the health of Black women.

In order to address these health outcomes, we need to work on all levels to open up access and education for Black people.

Ndakor said the challenges Black people face when it comes to health care experiences can also contribute to infant mortality, including lack of access to transportation and insurance issues.

Recent data showed non-white Americans are uninsured at higher rates than their white counterparts. The uninsured rate for nonelderly Black Americans in 2019 was 11.4 percent, compared to 7.8 percent for white people. A lot of this continued disparity is attributed to the economic toll the pandemic has taken, specifically on Black families and families of color.

A lack of insurance is one economic toll Black families face that could lead to less prenatal care and education. Fewer educational opportunities, a lack of prenatal care, and added financial stress can then contribute to premature births, and therefore, in some cases, contributes to infant mortality.

Ndakor suggested that, for there to be equitable care, Black families could benefit from meeting more frequently with doctors or having health care professionals go to them to make up for transportation and insurance barriers.

A lack of Black health care professionals can also worsen outcomes. Ndakor said simply having more Black health care providers, spanning from midwives to physicians, could bring more trust and awareness in the health care system.

This sentiment has rung true in Ndakor’s experience as a Black neonatologist.

“As a Black physician, when I have patients who are African American, they are more honest with me,” Ndakor said. “I also don’t feel uncomfortable asking them certain things because we can identify in similar ways.”

The issue extends beyond infants. Black women are six times more likely to die during childbirth than white women. Black women are also more likely to struggle with breastfeeding and prenatal care in the first trimester. While maternal morbidity and infant mortality are not the same thing, they certainly cross over when it comes to disparities and worse health outcomes.

According to the CDC, high Black maternal mortality rates can be attributed to a number of things including, inacces to quality health care, implicit bias, chronic conditions, and more.

The reason Black women are less likely to breastfeed is also due to a number of systemic problems, including not being able to breastfeed at work. Black women have the highest labor participation rate out of women in all other racial groups.

Erasure of infant mortality disparities in medical school curricula

Education is one major way to begin addressing any social justice issue however, infant mortality disparities are not directly looked at in Carver College of Medicine’s curriculum.

Amy Dowden, director of the Medicine and Society Strand at the University of Iowa, said when reviewing the Pediatric clerkship, which occurs later in the Social Determinants of Health  curriculum, the topic of infant mortality disparities based on race in systemic terms is not directly addressed. It may be in the near future, however, as the clerkship director has already been approached, Dowden said.

Carver does already cover subjects related to immigrant health, adverse childhood experiences and more, Dowden said.

Data visualization by Molly Milder/The Daily Iowan

Dowden added that systemic infant mortality disparities are also not addressed in the Obstetrics/Gynecology clerkship.

Addressing biases and disparities in the health care system should be an expectation at medical schools everywhere.

We have established Black babies and pregnancies are more at risk. It is time we focus on education and centering communities of color in dismantling oppressive systems.

We have a long way to go in recognizing and acting on the systemic issues that contribute to health care disparities. There is no way to simplify the long history of mistreatment and oppressive barriers that affect communities of color however, at every level of education, representation matters.

Doulas as a way to address poor infant and maternal health outcomes 

Nafissa Cisse Egbuonye, director of the Black Hawk County Health Department, helped launch the Black Doula project, an initiative to address health disparities related to pregnancy. The project is funded by the Iowa Department of Public Health.

“The goal is to reduce disparities in maternal health outcomes for Black and African American birthing people in Iowa,” Egbuonye said.

One of the goals of the Iowa Title V Community-Based Doula Project for African American Families is to increase the number of Black families who go through prenatal care in their first trimester. Only 68 percent of Black pregnant families in Iowa go through this care in comparison to 87 percent of white families. The project found a similar disparity exists for Black families breastfeeding.

Only 69 percent of Black Iowa families leave the hospital breastfeeding, whereas 84 percent of white families in Iowa do. Breastfeeding is not the only way to feed a child, however — Black families should have the same access to care and knowledge as white families.

Data visualization by Molly Milder/The Daily Iowan

While breastfeeding and prenatal care may not seem directly related to infant mortality, the lack of general maternal care and access can contribute to complications in pregnancy.

Ebonie Bailey works with Black communities in Iowa to train doulas and work with the families to provide the best pregnancy care possible.

A doula non-medically assists families throughout the pregnancy process physically and emotionally. They ensure families have the knowledge to make informed decisions about their birth and understand the process they’re going through. Doulas do prenatal care, comfort care, and offer support during pregnancy and postpartum, when they do a depression screening.

When Bailey was trained, she was the only Black doula in the state — now there are 25. She works to empower more Black people to do the same.

Bailey, a doula herself, said doulas advocate for patients by being available more than their health care providers. Doulas can interact with the entire family unit to facilitate the pregnancy process, rather than doctors working primarily with their single patient.

The Black Doula Collective serves Black families by looking at what needs are in the community and trying to find ways to address them. The Black Doula Collective has found that many Iowans need assistance meeting nutritional needs either due to access or cost, especially in more rural areas.

The collective also navigates the cultural differences between the African community and African American community. As an example, Bailey mentioned babywearing — the practice of carrying a baby on the body by using cloth or device, often already exists in African communities.

Specifically in Iowa City, the Black Doula Collective has trained 14 Black women, including seven Congolese women, whose infant mortality rates are extremely high, Bailey said.

“We thought if we could train doulas in their own community, they can support each other,” Bailey said.

The Congolese health partnership had spoken to the collective about women and children in the community dying at alarming rates. The Black Doula Collective used a grant to train doulas from this community in hopes having this resource can help families have safer pregnancies.

This group should not suffer in silence. We all need to be informed to push for systemic change.

Julia Ganda is one of the Congolese women in the process of becoming a certified doula who trained with the Black Doula Collective. She has a master’s degree in social work, which has informed her experience and desire to be a health advocate.

“I wanted to get involved, being that I am a Black woman myself. I have a Black mother, and Black sisters,” she said. “So, it was a no-brainer for me wanting to be that advocate and support.”

She added that many Congolese people face issues such as language barriers, lack of familial support, and mistrust of the health care system when coming to Iowa City. Having a Black doula bridges that gap and makes the environment more comfortable and informed.

“It could be something as simple as me telling her, ‘You got this,’ or sending something educational,” Ganda said. “Just having that bit of extra support you wouldn’t necessarily get at the hospital is really important. I think the best part of being a doula is reminding the client what they want their birthing experience to look like.”

We need to recognize and uplift the life changing work these Black women are doing for Black families in Iowa. From the healthcare field to addressing poverty, at every level more should be done to dismantle these dangerous and oppressive systems. Iowa’s Black babies and pregnancies deserve a better chance than they get.