Small Actions, Big Impact: The Role of Racial Disparities and Patient-Provider Education in North Carolina’s Infant Mortality Rate

Small Actions, Big Impact

Throughout this series on women’s reproductive care, we often identify women as people with biologically-female anatomy, such as a uterus, a vagina, and ovaries. However, we acknowledge that people with this anatomy identify as other genders, that having this anatomy does not necessarily mean a person is a woman, nor is it a prerequisite for being a woman. 

In this article, we focus mainly on disparities between mothers and children identifying as white and Black/African American. The need remains for more work and discussion on mothers and infants identifying as Indigenous, Hispanic, Latinx, and Asian. 

7 out of every 1,000 babies born in North Carolina will never reach their first birthday (North Carolina Infant Mortality Report). 

North Carolina’s infant mortality rate, or the number of infants out of every 1,000 live births who die before one year of life, is only slightly higher than the U.S. average. According to the CDC, the 2019 U.S. infant mortality rate was 5.6. If this seems high to you, you would be correct. Compared to other countries mirroring the U.S.’s developmental caliber and global stature, this infant mortality rate is surprisingly high. 

We are losing too many babies. 

North Carolina’s State government is taking action on this pressing issue. In 2019, the state identified “better birth outcomes” as a major objective in its Early Childhood Action Plan. The plan, which envisions that “all North Carolina children will get a healthy start and develop to their full potential in safe and nurturing families, schools, and communities,” identifies ten pillars of childhood health, including number one: “Healthy Babies.” In his introduction of the plan, Governor Roy Cooper states that “reducing infant mortality remains the first goal.”

Fortunately, infant mortality in North Carolina has been decreasing over time. According to North Carolina’s Department of Health and Human Services, from 1999 – 2019, the overall infant mortality rate decreased from 9 to 7.5. Breaking this down demographically, the neonatal mortality rate (<28 days old) decreased from 5 to 3 for white non-Hispanic infants and from 11.5 to 8.5 for Black non-Hispanic infants. In addition, the post-neonatal mortality rate (28 – 365 days old) fell from 2 to 1.5 for white non-Hispanic infants, but remained stable at 4 for Black non-Hispanic infants. 

Although these trends are encouraging, something stands out – why are Black infants consistently dying at higher rates than white infants? 

As cited in the North Carolina Infant Mortality Report (NCIMR), the 2019 mortality rate for white non-Hispanic infants was about 4.7, while the rate was for Black non-Hispanic infants was 12.5. In other words, Black infants are dying nearly three times as often as white infants. And although people identifying as Black compose 22.2% of the state population and account for a proportional 24.3% of state births, Black infant deaths accounted for a shocking 44.8% of the state’s total infant deaths from 2017 – 2019. 

Simply put, a Black infant born in North Carolina has a higher risk of death before one year of age than a white infant. In fact, as reported by every state with available data, Black infants die at a rate two to three times higher than white infants. 

So why do infants die? And why do Black infants die more often? To begin to understand this racial disparity, we must first understand the factors belying infant mortality. 

The North Carolina State Center for Health Statistics records 14 general causes responsible for infant death, including (1) congenital abnormalities, (2) prematurity and low birth weight, (3) respiratory distress, (4) infections, (5) maternal or pregnancy complications, (6) perinatal complications, (7) diseases of circulatory system, (8) diseases of respiratory system, (9) accidental strangulation in bed, (10) Sudden Infant Death Syndrome, (11) unknown cause, (12) accidents, (13) homicide, and (14) other. 

According to Sharla Rent MD, a practicing neonatologist with the Duke Department of Pediatrics, complications associated with prematurity, respiratory distress, congenital anomalies, and sepsis are the “bigger players” for why infants are first admitted to the Neonatal Intensive Care Unit (NICU) after birth. After infants are taken home, infection remains a large threat for why infants get seriously sick. 

Out of these serious conditions, prematurity and low birth weight have been consistently and disproportionately high for Black infants. In fact, the NCIMR cites that (1) Black infants died of prematurity or low birth weight at a rate two times higher than white infants (24.5% v. 11.3%); (2) Black infants died at a rate two times higher than white infants when their birth weight was below 1.1 pounds (34.5% v. 19.7%); (3) and approximately 1.5 times more Black mothers than white mothers whose infants died had gestations below 27 weeks (53.6% v. 38.4%). In short, Black infants are more likely to be born early or with low birthweight and are also especially vulnerable to subsequent complications or illness. 

We know that some of the reasons for why infants die are acute and functionally unavoidable. For example, a mother may experience a spontaneous placental abruption and be forced to deliver pre-term. In the majority of cases, however, the causes behind an infant’s death are multi-faceted, complex, and stretch far beyond the delivery room and into a mother’s socioeconomic standing and access to resources. 

The 2020 article “Infant Mortality: Access and Barriers to Quality Perinatal Care in North Carolina” looked at perinatal care across socioeconomic lines over a period of five years and uncovered startling trends. 

Interestingly, expectant white mothers and expectant Black mothers had similar rates of insurance coverage (96.3% and 95.3%, respectively) and gave birth largely in hospitals (98.0% and 99.3%, respectively) – two protective factors which greatly increase the likelihood of a healthy pregnancy and birth. 

Evidence points to the quality and frequency of perinatal medical care as a major contributing factor fueling the differences between white and Black infant mortality rates. 

Perinatal visits are an essential component of a healthy pregnancy, delivery, and early life for an infant. Dr. Rent explains, “during prenatal visits, [OB-GYNs] will screen for changes in blood pressure, changes in blood sugar, or protein in your urine – signs of things like gestational diabetes or preeclampsia. Your OB will also do vaginal exams to look for cervical insufficiency, which can contribute to pre-term labor. These are things that you may not sense in yourself if you’re just going about your day while pregnant.” In short, comprehensive pregnancy visits are vital specifically because they screen for risk factors which an expectant mother would have no way of knowing are present in her body. 

Sadly, not all pregnant mothers are treated equally by their OBs during these visits. In fact, according to “Infant Mortality,” mothers who lost babies were three times more likely to have felt “upset as a result of how they were treated based on their race” compared to mothers whose infants were still alive. In other words, some health care providers consciously and/or unconsciously treat pregnant patients differently on account of their race. Meaning, expectant Black mothers may face more difficulty finding bias-free care. 

In addition, data indicates that the frequency, as well as quality, of perinatal visits significantly affects birth outcomes. According to “Infant Mortality,” from 2012 – 2017, about 49% of North Carolina mothers who lost babies had 8 or fewer pediatric visits; on the other hand, about 62% of North Carolina mothers who had babies still alive had 12 or more pediatric visits.

The difference is clear: more frequent perinatal visits corresponds with better birth outcomes for both mothers and children. So what is preventing expectant mothers from attending these essential appointments? 

The answer: North Carolina’s lack of mother- and infant-centered policy.

Without federal paid leave nor affordable child care, North Carolina’s lowest-paid workers face difficulty in taking time away from their jobs or families to attend doctor visits. Compounding this reality is the fact that Black women are overrepresented among North Carolina’s lowest paid workers. Consequently, Black mothers are among the most likely to be unable to take time off from work or family in order to attend perinatal appointments. 

So where would an intervention be most helpful? 

A comprehensive plan that includes paid leave and affordable childcare, as well as tackling institutional and individual racism would effect real change for mothers and babies. However, these solutions will take coordinated legislative action at the local, state, and federal levels of government to see through. So while we wait for this empathetic and sensical legislation, a smaller-scale intervention on the individual level can also create change: patient and provider education. In essence, we can teach patients how to better advocate for themselves and their families, as well as educate health care providers so they are better equipped to meaningfully care for patients. 

In her article, “If It’s Important, Teach Us: Accountability in Education on Structural Racism,” Dr. Rent explains the importance of incorporating this teaching as part of the continuing medical curriculum. She explains, “if you don’t have any knowledge of social determinants of health, you don’t even know what questions to ask families or what to be on the lookout for.” 

To increase provider knowledge of social determinants of health, Dr. Rent suggests an updated set of milestones, or the core competencies which physicians are expected to know in order to complete their fellowship. Perhaps surprisingly, these particular milestones do not currently exist in most training. 

Dr. Rent proposes using lectures, readings, and interactive discussions within residency and fellowship programs to prepare physicians to meet these milestones. In medical practice, these milestones would help physicians understand the way social determinants of health interface with the community health care system, as well as more complex issues such as generational stress and health transmission through non-physical means.

While we wait for governmental proceedings to address the bigger issues underlying infant mortality, families have to work within the current system of resources. For now, better provider education in addition to patient self-advocacy (see below) may be our best shot at mitigating the risk to mothers and children. 

Dr. Rent remains hopeful: “we are seeing a trend of more holistic and more empathetic health

care for all of our patients. Setting up a child for good lifelong health oftentimes comes during pregnancy, and the shift towards thinking of the mother-infant dyad and the importance of caring for them is coming to the forefront of social, political, and medical thought… that will pave the way for better outcomes for our mothers and babies.” 


What can you do in your own life to decrease infant mortality? 

If You Would Like to Become Pregnant – Set Yourself Up for Success.

  1. If you have not already, establish care with a Primary Care Physician (PCP), such as an Internist or a Family Medicine Physician, and an Obstetrician-Gynecologist (OB-GYN) who you trust. Once you establish this relationship, try to see the same doctor every time you visit – continuity is key to good care! 
  2. Tell your doctor that you are interested in becoming pregnant and ask about any medical conditions you may have that could complicate pregnancy or birth. 
  3. Work with your PCP and OB-GYN to manage any chronic conditions and to achieve/maintain good health before pregnancy.
  4. Get tested for sexually transmitted diseases and infections every 6 months to 1 year.
  5. Inquire about your employer’s maternity leave policy. Will it work for you? 
  6. Try to prepare a plan for childcare once you do decide to get pregnant.

If You Are Pregnant – Ask for What You Need.

  1. Do everything you reasonably can to attend the recommended number of prenatal visits: ask your employer for time off or extra sick days, ask a colleague to cover your shift, have a trusted family member or friend look after your children. You have a right to do everything in your power to have a successful pregnancy and birth!
  2. Prepare for and take your time during prenatal visits. Ask your OB to explain any terms or procedures that you do not understand. Have a list of questions prepared and make sure all of them are answered. At the end of each visit, formulate a plan with your doctor for how to maintain your health until your next visit. 
  3. Overcommunicate – if you ever feel a change in your body that concerns you, give your OB office a call, no matter what it may be. At the very least, it will give you peace of mind. 
  4. If you are fortunate to have a formal maternity leave, do not hesitate to take the full extent of it off from work. If you need to, ask your employer for extended time off. If you have a partner, have a discussion with them about taking parental leave to bond with your baby. 
  5. Talk with the mothers in your life about their pregnancies. What worked? What didn’t?
  6. Remember that nothing about pregnancy can or will be perfect. Have confidence that you are doing enough to keep you and your baby healthy and safe. 

In General: 

  1. Attend annual physicals with your PCP and annual well-woman exams with your OB-GYN. 
  2. If you are a mother, support the pregnant women and mothers in your life by talking about your personal experiences – what are some of the things you wish you had known about being pregnant or giving birth? How did different changes to your body make you feel? If you breastfed, what practices worked well? 
  3. Support local efforts for paid leave and affordable child care


Upcoming Article: November 12 – Examining Contraceptive Options and Women’s Reproductive Burden 



There are no comments

Add yours