A fair chance at a healthy start. It is essential to recognize that these issues are interconnected and require a collective effort to address them effectively.
When my first daughter arrived prematurely, I was thrown into a reality I never foresaw—a realm defined by the consistent sound of incubators, the flickering lights of monitors, and an overwhelming anxiety of what lay ahead. In those initial moments, I was burdened with an agonizing sense of guilt, feeling as though I had let her down by not being able to keep her safe within me until it was time for her to be born.
The NICU quickly became our new normal, but the most haunting experience was returning home without my baby—lost in thought while looking at an empty car seat that should have cradled her. That profound absence intensified an already chaotic time, plunging me into a deep despair. The challenges of postpartum life stole away the joy that should have come with bringing a child into the world, casting a shadow over what was meant to be one of the brightest periods of my life. Even now, three years later, I feel the impact of those moments and possess a deep understanding of just how fragile life can be.
Our experiences were shaped not just by the care we received but by the glaring shortcomings within a system designed to safeguard our most vulnerable. I eventually recognized that my narrative is not isolated—it reflects a broader national crisis.
Why the US is falling short for mothers and preterm infants
In 2023, over 370,000 infants in the United States were born prematurely, comprising 10.4% of all births. For the third year in a row, the March of Dimes assigned a D+ grade to the country for its preterm birth rate—a stark reminder of the systemic challenges that endure.
The situation is even more alarming for Black birthing individuals, who face a preterm birth rate of 14.7%, which is 1.4 times that of their white counterparts. Similar high rates are seen among American Indian and Alaska Native birthing individuals. Such disparities are not incidental; they point to systemic inequities that fail to provide adequate care for the most vulnerable populations.
Geographic location significantly impacts these outcomes as well. States such as Mississippi, Alabama, and Louisiana report preterm birth rates exceeding 13%, while cities like Detroit and Cleveland receive failing grades. Conversely, states like Vermont, which prioritize access to maternal care, see rates as low as 7.7%. This illustrates how significantly a family’s location can affect their likelihood of a successful birth.
The NICU “gray zone”: Survival shouldn’t hinge on your zip code
The period between 22 and 24 weeks of pregnancy is referred to as the “gray zone” for preterm infants—an interval where survival odds are uncertain and hospital protocols can vary widely. For some families, this can represent the critical difference between life and death.
In certain hospitals, newborns born at 22 weeks may have survival rates as high as 60% due to advanced neonatal care. However, not all hospitals have the capacity or willingness to provide this level of care. Families such as Fatima Goines’—highlighted in The Wall Street Journal—had to fight for their baby’s chance, transferring hospitals mid-labor in pursuit of adequate care. Others, like Rachel Sherman, were unaware that different options were even available.
Though I was fortunate to receive high-quality care, I recognize how easily our circumstances could have shifted had we lived in a different area.
Supporting moms and babies against the odds
The preterm birth crisis stems from various interconnected systemic issues, which disproportionately affect the most marginalized families:
- Chronic Health Issues: Conditions like hypertension, diabetes, and obesity elevate the risk of preterm birth and are more prevalent in marginalized communities, reinforcing existing disparities.
- Environmental Factors: Approximately 74% of birthing individuals in the U.S. encounter poor air quality, and 40% face extreme heat during pregnancy—two environmental risk factors linked to higher rates of preterm birth.
- Poor Access to Prenatal Care: The rate of inadequate prenatal care has risen to 15.7%, its highest level in a decade, with Black and Indigenous communities facing the worst outcomes. Accessible and consistent prenatal care is vital for reducing preterm births, yet systemic obstacles continue to limit access for many families.
What parents should know: Advocating for your infant
- Familiarize Yourself with Hospital Procedures: Not every hospital provides the same level of care for extremely premature babies. Investigate the NICU levels and protocols of your local hospital and don’t hesitate to pursue second opinions or request transfers when necessary.
- Ask Key Questions: Inquiries such as “What is your hospital’s policy regarding resuscitating infants born at 22 weeks?” can play a crucial role in survival outcomes.
- Seek Support: Organizations and groups like TwentyTwo Matters can offer valuable assistance and guidance for families dealing with preterm birth.
- Prepare for High-Risk Pregnancies: If you are at risk, connect with maternal health resources early, recognize the signs of preterm labor, and take proactive measures to minimize environmental risks.
Advocating for every infant: The need for systemic reform
Addressing the preterm birth crisis requires substantial systemic transformations:
- Standardize NICU Protocols: Families should not endure a fragmented system where survival hinges upon geographic location. National guidelines are essential for ensuring equitable care for everyone.
- Broaden Access to Care: Expanding Medicaid, increasing funding for under-resourced areas, and supporting maternal health initiatives is crucial to bridging existing care gaps.
- Tackle Environmental Hurdles: Policies aimed at reducing air pollution and addressing extreme heat are vital to safeguarding pregnant individuals and their babies.
Countries such as Japan and Sweden have adopted higher intervention rates for infants born at 22 weeks, with survival rates of 58% and 63%, respectively. The U.S. has the capacity to achieve similar outcomes—but only if systemic changes become a priority.
A reflection on persistence
Three years after Gianna’s arrival, I have come to understand that every preemie journey embodies hope, resilience, and profound love. Families like mine, along with countless others, have persevered for their infants amid substantial obstacles.
However, we should not have to endure this struggle in isolation. The crisis of preterm birth in America urgently calls for systemic changes that ensure every infant—and every family—has an equitable opportunity for a healthy beginning.
Image Source: Lopolo / Shutterstock
