Huge racial disparities persist despite slow infant mortality drop
Corrections and clarifications: An earlier version of this story misstated physician Janis Orlowski’s title and affiliation.
FALLS CHURCH, Va. — Despite a 13% drop in the national infant mortality rate over nearly a decade, there remains a stubborn gap between the rates for black Americans and other racial groups as well as between some Southern states and the rest of the country.
The most proven and promising way to reduce the disparities in premature births that lead to death — home visits by nurses — got a boost in the Affordable Care Act, but is reaching only a fraction of those in need, policy experts say.
The ACA funding of nurse home visits covered just 115,000 families in 2014, while about 1.8 million births a year — nearly half — are covered by Medicaid, the health care program for low-income families. Still, a 2012 report by the Pew Charitable Trusts found fewer than a third of state Medicaid programs fully covered home visits.
Black infants overall continue to die at a rate more than twice that of white babies and some parts of the country have racial gaps that are far wider. Black mothers are also twice as likely to have costly premature births due to factors including poor access to health care and existing health problems, which contributes to the United States having one of the highest death rates among developed countries.
Infant mortality rates state by state
It would cost state and federal Medicaid programs about $60 billion over 10 years to extend nurse home visits to all eligible mothers, but the savings from preventing premature births alone would be nearly $21 billion after that decade, the Center for American Progress estimates. Hospital stays for premature and low birth weight babies average about $15,000 and 13 days, compared with $600 and about two days for births without complications. Home visits by the Nurse-Family Partnership, the oldest and most studied program, average just $4,200 a year and last until children turn 2.
The emotional and economic impact is staggering. More than 23,000 babies a year die before their first birthdays, often after spending weeks or months in neonatal intensive care units. Mothers who received little or no prenatal care are about 40% more likely to have a child that dies in infancy.
Babies that are born very prematurely often have "severe mental and physical illnesses that are an additional strain for a mother who might have been scraping by to begin with," says Janis Orlowski, a kidney doctor who is chief health care officer of the Association of American Medical Colleges. When it comes to prenatal and early childhood care, "If the ethical reasons don’t sway, the financial ones should."
The Center for American Progress estimates expanding the Nurse-Family Partnership to Medicaid-eligible first-time mothers nationally would prevent 20,000 deaths and more than 400,000 premature births over 10 years. Other studies have found the NFP visits reduced child abuse and neglect by nearly 50% and arrests of the children by age 15 by up to 60%.
This evidence prompted the center to call on the federal government in November to give states the option of covering nurse home visits with Medicaid funds and to loan states additional money needed to expand the programs more.
Home visits have "some of the highest return on investments for any social programs," says Rachel Herzfeldt-Kamprath, an early childhood policy analyst for the Center for American Progress and co-author of the center's report.
While the center is left-leaning, there's broad bipartisan support for home visits. Proponents includes former president George W. Bush, who was first to propose federal funding for it, House Speaker Paul Ryan, who included it in his 2014 poverty plan, and President Obama, who last month proposed $15 billion in funding over 10 years to continue and expand the ACA's nurse home visits.
Last month, South Carolina Republican Gov. Nikki Haley announced $30 million in additional funding of the Nurse-Family Partnership for her state. The announcement followed a newspaper series that chronicled the paltry prenatal services for rural, often black residents and the high death toll, especially in eight poor counties the series called the "cradle of death."
While the U.S. infant mortality rate is higher than nearly all of the other 33 members of the Organization for Economic Cooperation and Development, some of the difference relates to what other countries count as a pre-term birth. Still, many health experts consider it a national embarrassment that tens of thousands of new mothers lose their babies in a country that prides itself on its health care system.
The pain caused by an infant's death can emotionally cripple mothers for years, even if they with access to mental health services, says Joyal Mulheron, who founded the non profit Evermore and lost her third child at 5 months old to a congenital abnormality. Mulheron, who went into debt paying for twice-weekly therapy for years, has been meeting with church, community and hospital officials to help connect with low-income minority mothers who have lost children.
The pain from the loss of an infant may linger forever
"If a woman who can’t get prenatal care loses a child, what do you think the odds are that she can get mental health treatment for her depression?," Orlowski asks rhetorically.
Here in Fairfax County, one of the country's wealthiest, resources are relatively abundant for low-income new mothers, many of whom are immigrants. The infant mortality rate in the county is just 4.0, lower than the best state in the country. Across the Potomac River in Washington, D.C., health officials have cut the city-wide infant mortality rate by more than half. But in one of the city's poorest wards, the rate is about 10 times higher and close to that of the capitals of Cambodia and El Salvador, according to a report last year by Save the Children.
Fairfax County's health department was awarded an ACA grant in 2013 to start a Nurse-Family Partnership program, which complemented another home visit program funded by state and local money. .
Beth Glicker, a former labor and delivery nurse who now does home visits here, is part counselor, part health care aide and part "Jewish mother," as she describes herself. Among her challenges is grappling with immigrant clients who are "all horrified to be pregnant," she says.
"This was not their goal," says Glicker. "They came here to work."
Many of the women are victims of domestic violence and were abused as children, "but they want to do better for their children," Glicker says.
Glicker and her colleagues' clients include young teenagers and victims of sexual assault. Some of the Hispanic immigrants were raped while crossing the border. So she checks everything from their blood pressure to their emotional state in weekly or bi-weekly visits and makes herself available to clients around the clock.
Glicker's client this cold winter day has a less dramatic story that still underscores the need for regular oversight. Diminutive Dinara Gabdula, 25, had been working 12-hour days on her feet at a local kebab restaurant when she realized she was more than six months pregnant. Gabdula, who is married, came to the United States from Kazakhstan in 2013 and lives in a tiny Cape Cod-style house in a quiet neighborhood here.
Glicker's biggest job before 5-month-old Dena's birth was making sure Gabdula was eating and gaining weight. The young mother preferred to have tea for breakfast and eat just one meal a day at night. So Glicker would pull out her scale and weigh Gabdula on each visit, pressing her to eat despite her nausea and lack of interest in the kebabs she smelled every day. Now it's the baby she weighs, assuaging Gabdula's fears about her now-chubby-cheeked baby's nutrition. Gabdula had never held a baby before, so Glicker also brought over dolls to teach her how to diaper and care for an infant.
"In that moment after birth, you’re just lost and don't know what to do," says Gabdula. "I don't know what I would have done without Mrs. Beth."
