When my oldest daughter was born prematurely, I was thrust into a world I never imagined—a world defined by the hum of incubators, the glow of monitors, and an all-encompassing fear of the unknown. In those early moments, I carried an unbearable sense of guilt, feeling as though I had failed her by not being able to keep her safely within me until full term.
The NICU became our new reality, but the most haunting moment came when I returned home without her—staring at an empty car seat that should have cradled my baby. That profound emptiness pushed an already tumultuous time into a spiral of despair. Postpartum struggles stole the joy that should have accompanied welcoming a child, leaving a shadow over what should have been one of the happiest chapters of my life. Even now, three years later, I carry the weight of those moments and the deep awareness of how fragile everything truly is.
Our journey was shaped not only by the care we received but also by the glaring gaps in a system meant to protect our most vulnerable. What I came to realize, however, is that my story is far from unique—it’s part of a larger, national crisis.
Why the US is failing moms and preterm babies
More than 370,000 babies in the United States were born prematurely in 2023, accounting for 10.4% of all births. For the third consecutive year, the March of Dimes has given the country a D+ grade for its preterm birth rate—a grim reminder of the systemic issues that persist.
For Black birthing people, the reality is even starker. They face a preterm birth rate of 14.7%, which is 1.4 times the rate of their peers. American Indian and Alaska Native birthing individuals face similarly high rates. Disparities like these are not coincidental; they are symptoms of systemic inequities that leave the most vulnerable populations without adequate care.
Geography plays a significant role as well. States like Mississippi, Alabama, and Louisiana report preterm birth rates over 13%, while cities like Detroit and Cleveland earn failing grades. In contrast, states like Vermont, where access to maternal care is prioritized, have preterm birth rates as low as 7.7%. These stark differences reveal how much a family’s location influences their likelihood of a healthy birth.
Related: This is birth: First-time parents’ NICU journey
The NICU “gray zone”: Survival shouldn’t depend on your zip code
The weeks between 22 and 24 weeks of pregnancy are known as the “gray zone” for premature babies—a period where survival is uncertain and hospital policies vary widely. For some families, this can mean the difference between life and death.
Families like Fatima Goines’, featured in The Wall Street Journal, had to fight for their baby’s chance at life, transferring hospitals mid-labor to find care. Others, like Rachel Sherman, weren’t even told there were alternative options.
Related: 10 things I wish I knew as a new NICU mama
How we can help moms and babies thrive despite the odds
The preterm birth crisis is driven by a combination of systemic issues, all of which disproportionately impact the most vulnerable families:
- Chronic Health Conditions: Conditions like hypertension, diabetes, and unhealthy weight significantly increase the risk of preterm birth. These conditions are more common in marginalized communities, creating a ripple effect that perpetuates disparities.
- Environmental Risks: Nearly 74% of birthing individuals in the US are exposed to poor air quality, while 40% experience extreme heat during pregnancy—two environmental factors linked to higher preterm birth rates.
- Inadequate Prenatal Care: Rates of inadequate prenatal care have risen to 15.7%, the highest in a decade, with the worst outcomes seen in Black and Indigenous communities. Early and consistent prenatal care is critical to reducing preterm births, but systemic barriers continue to limit access for many families.
What parents need to know: Advocating for your baby
As a mom who’s lived through the experience of delivering prematurely, here’s what I wish I had known when navigating the world of preterm birth:
- Understand Hospital Policies: Not all hospitals offer the same level of care for extremely premature babies. Research your local hospital’s NICU levels and policies, and don’t hesitate to seek second opinions or request transfers if needed.
- Ask the Right Questions: Questions like “What is your hospital’s policy on resuscitating babies born at 22 weeks?” can make a life-or-death difference.
- Find Support: Groups like TwentyTwo Matters and advocacy organizations can provide invaluable guidance for families navigating preterm birth.
- Prepare for High-Risk Pregnancies: If you’re at risk, connect with maternal health resources early, learn the signs of preterm labor, and take steps to reduce environmental risks.
The fight for every baby: A call for systemic change
To address the preterm birth crisis, systemic changes are essential:
- Standardize NICU Policies: Families shouldn’t face a patchwork system where survival depends on geography. National guidelines are needed to ensure equitable care for all.
- Expand Access to Care: Medicaid expansion, increased funding for underserved areas, and support for maternal health initiatives are critical to closing gaps in care.
- Address Environmental Risks: Policies that reduce air pollution and mitigate extreme heat are vital for protecting pregnant individuals and their babies.
There’s significant progress in neonatal care in high-income countries, including Japan and Sweden, which often achieve higher survival rates for extremely preterm babies due to advanced medical interventions and systems. The US has the resources to match those outcomes—but only if systemic reforms are prioritized.
A reflection on resilience
Three years after my daughter’s birth, I’ve come to realize that every preemie journey is one of hope, resilience, and unwavering love. Families like mine, and the countless others navigating this journey, have fought for their babies in the face of incredible challenges.
But we shouldn’t have to fight alone. The preemie crisis in America demands systemic change to ensure every baby—and every family—has a fighting chance. Together, we can push for the reforms that all families deserve.
Sources:
- US Earns D+ for Preterm Birth Rate. March of Dimes. 2024. “US Earns D+ for Preterm Birth Rate for Third Consecutive Year in 2024 March of Dimes Report Card, Remaining Worst Grade in Report History.”
- March Of Dimes Report Card. March of Dimes. 2024. “The preterm birth grade was D+ in 2023; the worst grades occurred in the southern region of the US.”
- Gray zone for premature babies. J Perinatol. 2008. “Limits of viability: definition of the gray zone.”
- The Wall Street Journal interviews. The Wall Street Journal. 2024. “Doctors Can Now Save Very Premature Babies. Most Hospitals Don’t Try.”
- Rise in inadequate prenatal care. The Guardian. 2024. “Premature birth rates in US remain at historic high, report finds.”
