Ashley O’Neil had never foreseen the harrowing pregnancy she had been going through. At 21 weeks pregnant, O’Neil found herself fighting a losing battle against time, where fears over the survival of her unborn child only mounted after she started experiencing irregular bleeding. Her experience would soon come to highlight the ordeal many expectant mothers face in “maternity care deserts”—areas where access to essential maternity services is scarce.
O’Neil’s first warning sign came at 21 weeks, when she started bleeding. She and her husband, Jorge, drove to the closest community hospital in rural Maryland, hoping for a quick response. However, hours passed before a doctor was available. When the doctor finally arrived and performed an examination, O’Neil received the shocking news: her amniotic sac was exposed. This put her at significant risk for preterm labor.
As her condition worsened, the small community hospital lacked the resources to support a premature birth. O’Neil was then transferred to a larger hospital, requiring a two-hour ride through a dangerous spring storm, her life and her baby’s at risk.
The Loss of Her Firstborn
Upon arriving at the larger hospital, O’Neil delivered her son, Vinson, prematurely at 21 weeks. Weighing just 15 ounces, he was too small to survive. Though his heart beat briefly, he passed away shortly after birth in O’Neil’s arms.
“We baptized him at the hospital when he passed away. I like to say he died in my arms, but he didn’t quite make it that far,” O’Neil said sadly. Less than six hours after delivering her stillborn son, O’Neil was wheeled through the labor and delivery unit, listening to the cries of healthy infants—a painful reminder of her loss.
A Growing Crisis of Preterm Births in the U.S.
O’Neil’s tragic story is a reflection of a broader crisis. Preterm birth remains a leading cause of infant mortality in the United States. In 2023, the Centers for Disease Control and Prevention (CDC) reported approximately 5.6 deaths per 1,000 live births. Meanwhile, the preterm birth rate remained high at 10.4%, affecting over 370,000 babies annually.
According to Dr. Amanda Williams, interim chief medical officer for March of Dimes, the situation is dire. “One in 10 babies is born too early, and often it is premature. There are also significant racial disparities—Black infants have a 50% higher preterm birth rate than other racial groups,” she said. Another critical issue is the existence of “maternity care deserts,” where access to quality care is limited.
“If people are unable to access care, they are not going to have adequate prenatal care,” Dr. Williams explained. This lack of access is a major contributor to preterm birth, along with health factors like hypertension, diabetes, and obesity.
Challenges Faced by Families Affected by Preterm Birth
O’Neil’s loss of Vinson was compounded by a difficult second pregnancy. In April 2019, she gave birth to her second son, Kolin, under equally challenging circumstances. Kolin was born prematurely at the same small community hospital, but this time, labor progressed too quickly for a safe transfer to a larger facility.
Despite the medical team’s efforts to stabilize him, they were unable to intubate Kolin. “They gave him manual breaths for an hour, until the flight came to transfer him,” O’Neil recalled.
Kolin was then transferred to the NICU at the larger hospital, two hours away. “We didn’t know that he was going to make it,” O’Neil said. In a moment of deep fear, she whispered to Kolin, “Look, if you want to go, you can go, but if you want to fight, I’ll fight for as long as you want to fight.”
Kolin did survive, with the help of specialized care, including physical, speech, and occupational therapy. Though diagnosed with cerebral palsy and other conditions, O’Neil is hopeful, saying, “If I can survive and not go completely crazy, then others can too. I want to show them that they can find hope.”
Overcoming Obstacles and Fighting for Change
The emotional and financial toll of raising a preterm baby is immense. O’Neil had to leave her job as a family nurse practitioner to care for Kolin. “Raising him takes so much of me in ways mothers of neurotypical children could never understand,” she said.
O’Neil’s experiences underscore the need for systemic changes to address the disparities in maternal healthcare. Lori Tremmel Freeman, CEO of the National Association of County and City Health Officials, called the high preterm birth rate a “travesty.” “As a developed nation, we have these extraordinarily poor outcomes around maternal morbidity and mortality, infant prematurity, and deaths, and that the disparities continue and are wide with regard to White people and Black and Brown people,” she said.
Policy and Systemic Change: A Call to Action
There is a pressing need for increased access to prenatal care, especially in rural and underserved areas. The March of Dimes has called for expanded access to Medicaid and better support for pregnant people in these areas. “If there is not good Medicaid policy in certain areas, then that is going to be a driver of preterm birth rates,” Dr. Williams explained.
Role of Midwifery and Support Services
Research has shown that midwifery care can reduce the rate of preterm births and improve maternal outcomes. In countries with better maternal health outcomes, midwives attend the majority of births, whereas in the U.S., there are only four midwives for every 1,000 live births. “It’s essential to advocate for hospital bylaw changes, increased opportunities for collaboration between midwives and OB-GYNs, and updated regulations on state and federal levels to allow nurse-midwives to practice to the fullest extent of their education and licensure,” said Amanda Shafton, national midwifery director of Ob Hospitalist Group.
Solutions to the Crisis
The March of Dimes recommends several measures to address the preterm birth crisis, including increased access to midwifery care and the use of low-dose aspirin for women at higher risk of preterm birth. “Low-dose aspirin is a simple, inexpensive intervention that can reduce preeclampsia and preterm birth risks,” Dr. Williams said.
Ashley O’Neil’s Never-Ending Struggle
Despite all the challenges she has faced, O’Neil continues to advocate for better care for mothers and babies. Through her book It’s a NICU World and her podcast Ask a NICU Mama, she aims to raise awareness and provide hope for others. “Raising a preterm baby takes so much of me. It’s a financial cost, an emotional cost, and a physical cost,” O’Neil said. “But if we don’t address these issues as a society, things will only get worse.”
(INCLUDES INPUTS FROM ONLINE SOURCES)
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