Cry for help

In 1982, Virginia’s infant mortality rate was a staggering 12.9—the average number of infant deaths per 1,000 live births. The same year, Shawnte Rawlings was born to a 16-year-old mother in Garrett Square, the federally subsidized housing project in Charlottesville now known as Friendship Court.

In 2009, the state infant mortality rate had dropped to 7 deaths per 1,000 live births —the target rate set as part of the state’s 2010 health initiatives. By then, Rawlings was living in another public housing project, Westhaven, and was mother to two sons.

On March 24, 2009, Rawlings, pregnant with her third child, went into labor around 7am. During her pregnancy, Rawlings neither smoked nor drank, and treated her diabetes with insulin. Nearly 18 hours after her water broke, Rawlings gave birth to her first daughter. She named her Ablessin, and brought her home two days later.

Rawlings nursed Ablessin on both breast milk and formula. In April, when her daughter contracted a respiratory infection, Rawlings took Ablessin back to the hospital for a check-up. Two weeks later, Rawlings left Ablessin with friends and went out for the night to celebrate her 26th birthday. Ablessin, less than two months old, died in the care of a family friend sometime that evening.

The Virginia Department of Health, which uses five-year rolling averages, put the annual infant mortality rate at 7.2 for 2005 to 2009. During the same time, however, Charlottesville’s rate was 43 percent higher than the state average. In 2009 alone, the city’s infant mortality rate was 8.8 deaths per 1,000 live births—more than 25 percent above the state average. Focus on the city’s African-American population and the rate jumps to 17.5—a number that includes Ablessin Rawlings.

A closer look reveals that Charlottesville’s infant health crisis is most potent in a few areas—linked by low income, poor education and culturally ingrained skepticism toward the health care industry. Expectant mothers have resources in the community, but lack or resist access to them. Hospitals like UVA’s facilities have peerless capabilities, but not the outreach to assist mothers as quickly as health professionals would like. And a few new programs that could drastically improve the health of local mothers and children alike are forced to compete for funds that, under threat from state officials, could disappear.

From the top floor of the eight-story UVA Health Center, one can see the edges of Westhaven, Rawlings’ neighborhood, near 10th and Page streets. One can also look east towards North Ridge Street, home to three additional public housing sites totaling 188 units. Between 1990 and 2006, those two neighborhoods—a contiguous stretch of land linked through east Fifeville—posted the greatest rates of low birth weight babies. (See map this page.)

Low birth weight—less than five-and-a-half pounds—is frequently linked to maternal health problems, from chronic infection to substance abuse. Affected infants are more likely to be born premature. Consequently, they are more likely to suffer potentially fatal damage to their hearts, brains, and lungs. According to the March of Dimes, an organization that studies maternal and infant health, low birth weight is also associated with low income and education, and is a particular threat to African-American mothers and children.

Map Charlottesville’s risk factors, and you return time and again to the same spots. From 1990 to 2006, three neighborhoods—10th and Page, East Fifeville and North Ridge—showed high instances of no first trimester care. Around Westhaven and North Ridge, more than 30 percent of mothers had sub-high school education levels. Westhaven, constructed when the Vinegar Hill neighborhood was razed in the ’60s, is a predominately African-American neighborhood, where many families struggle with generational poverty.

Due to lower education rates, mothers in neighborhoods like Westhaven are less likely to have taken sex education classes in school. Income requirements for public housing mean that many mothers qualify for the federal government’s supplemental nutrition program, WIC (Women, Infants and Children)—which provided roughly half of the infant formula consumed in the country, according to a 2000 study by political science professor George Kent.

“The risk of mortality is about 27 percent higher among infants who are never breastfed compared to infants who are ever breastfed,” wrote Kent. “On this basis, about 720 infant deaths in the US would be averted each year if all infants were breastfed.” WIC adjusted its voucher program in 2006 to provide more food to mothers that breastfeed.

Many low-income mothers, including Shawnte Rawlings, also qualify for Medicaid—a state-and-federally-funded health insurance program. However, it wasn’t until late 2005 that the Medicaid program did away with a required waiting period for pregnant applicants, and began to retroactively offer eligibility for infants.

City Councilor Holly Edwards, a public health nurse, works at the Westhaven Community Clinic on Hardy Drive, near Shawnte Rawlings’ home. The clinic, says Edwards, isn’t a “doc box” and can’t offer prenatal care onsite. Rather, the clinic is a bridge to those community resources offered at UVA, Martha Jefferson and other local prenatal health providers.

Edwards says that the factors preventing some neighborhood mothers from seeking prenatal care could range from “distrust of the health care system” to prior successful pregnancies. “I think it is a combination of both,” she says. Edwards has coordinated a series of community health summits that directly address and apply practical solutions to infant health concerns. These range from maternal substance abuse discussions to a “Safe Sleep” program that provides car seats to qualifying families*. The next summit is slated for October.

A visitor to the Westhaven clinic immediately encounters a collection of pamphlets. “Pregnant?” asks one. “What happens next is YOUR decision.” They instruct mothers to take folic acid supplements to prevent infant brain abnormalities and spina bifida, a potentially life-threatening condition affecting an infant’s spinal column. Westhaven now also distributes WIC vouchers—an effort that brings high-risk mothers into direct dialogue with health professionals, and a rare instance of prenatal outreach on a neutral ground.

“There are a lot of resources,” says Edwards. “It’s just a matter of connecting people to the right resources.”

Charlottesville, says Diane Sampson, is just waking up. Many of the health concerns facing local infants and their mothers are preventable—through breastfeeding, folic acid, not smoking, yes, but also through an awareness of the expert resources just outside the most impacted neighborhoods.

“The fact is that people are busy and more private than they were 20 years ago,” says Sampson, UVA’s prenatal education coordinator and a lactation consultant.

In theory, bridging the gap from North Ridge or 10th and Page to the UVA Health System is easy. UVA serves the bulk of Medicaid-eligible patients in the city, and offers on-site Medicaid screening and enrollment, in addition to prenatal care and pregnancy screenings. In reality? Crossover doesn’t happen as frequently as it should.

“This is a community problem,” says Dr. John Schmitt, the division head of Obstetrics & Gynecology (OBGYN) at UVA. “People have to realize this and start very early in girls’ lives. Sex education, contraception, STD protection, preventing unintended and unwanted pregnancy.” The earlier a mother has access to prenatal education and care, the better opportunity she has for a fully informed pregnancy.

Which is precisely what the Thomas Jefferson Health District uncovered when it correlated education, low birth weight and early prenatal care across Charlottesville’s poorest neighborhoods. In 2007, MAPP—Mobilizing for Action through Planning and Partnerships, a community assessment project led by the local health district—identified 10th and Page, East Fifeville and North Ridge as underserved areas.

MAPP launched an Improving Pregnany Outcomes (IPO) initative, which created a pregnancy and parenting resource guide available at the local health department and online at the Charlottesville/Albemarle Commission on Children and Family website, ccfinfo.org. IPO also worked with the UVA Obstetrics/Gynecological Clinic to improve patient access. Since 2009, the UVA clinic has eliminated blood test requirements for pregnancy screenings, and implemented clinic follow-ups with mothers who miss appointments. UVA also operates a Spanish-language clinic (“La Clinica”) to serve the local Hispanic population, which has more than doubled in the last decade.

“I really want to dispel the notion that UVA doesn’t provide access,” says Schmitt, who says his department guarantees appointments for mothers within five days of first contact. “If I ever hear that there is not access for a pregnant woman in Charlottesville, I will personally get them an appointment and get them in.”

These recent developments have unfolded during an evolution in maternal education and care. UVA has a renowned fetal echocardiography program to diagnose congenital heart defects, and the school’s Neonatal Intensive Care Unit (NICU), now in its 35th year, is adding 15 more beds to assist infants with low birth weights or respiratory problems.

The privacy afforded new and expectant mothers has also changed. Representatives from UVA and Martha Jefferson Hospital (MJH) say that mothers stay in private postpartum rooms—a cultural shift from the idea of the “maternity ward”—and are encouraged to have family members with them.

“Fifty years ago, it would have been unheard of to have a dad in the room,” says Sampson. “We expect the dad to be involved and to spend the night with the mom. It’s family care and, regardless of the family situation, it is a family affair.” Mary Ann Lucia, the nurse manager for the OB unit at MJH, says the hospital’s new location on Pantops Mountain, due to open in August, will feature all private rooms, including 24 mother-baby units, up from the current 11.

Ideally, say both Sampson and Schmitt, UVA would offer prenatal advice and care to pregnant women as soon as possible. “We want to tune up any medical problems, make sure they’re nutritionally doing the right thing,” says Schmitt. “Screening for chronic diseases and immunizations, making sure they’re not exposed to weird parasites or toxins at work. There are a lot of things that would be well-served.”

Both UVA and MJH offer prenatal care courses. However, they do so only at their respective campuses. Without a third party to pair underserved areas with prenatal care services, expectant mothers in Charlottesville run the risk of remaining stuck behind a tangle of cultural, geographic and economic barriers.

Early pregnancy outreach remains hard to come by in Charlottesville. If hospitals like UVA and MJH are going to provide early outreach, then support is going to have to surge from the ground up, says Schmitt.

“Money is tight right now,” he says, “whether it’s the state of Virginia or Albemarle County or the City of Charlottesville.” (Charlottesville’s proposed budget for 2011-2012 nudges its “Healthy Families & Community” fund up by 3 percent, to $24 million, for agencies like the local department of social service.)

However, Charlottesville has a few promising possibilities for prenatal outreach. Through Central Virginia Health Services (CVHS), a network of 14 community health centers that provide expanded access to family medicine, the city applied for a $650,000 grant to create a Federally Qualified Health Center. Such a health center, according to CVHS Development Director Sheena MacKenzie, would provide services including prenatal care to an estimated 3,500 to 4,000 patients annually.

“One of the big efforts for prenatal care would be outreach,” says MacKenzie, who adds that the location would accept both insured and uninsured patients. “There are a lot of women who either feel like they can’t access or afford to access health care.”

MacKenzie says that CVHS and the city selected the Frank Ix building, located at Monticello Avenue and Sixth Street, as the site for a clinic. The building is located adjacent to the Friendship Court and Sixth Street public housing sites, and served by bus lines. If Charlottesville qualifies for the grant, then CVHS would be required to construct the center in 120 days, says MacKenzie.

The grant, however, depends on funding freed up by the federal Affordable Care Act—vehemently contested by Virginia Attorney General Ken Cuccinelli, an avowed nemesis of so-called Obamacare. If Charlottesville is just waking up to infant mortality concerns, then Cuccinelli’s crusade would sacrifice a state’s health for a misguided idea of “state’s rights” and send our city back to sleep. Provided the act is upheld and funding remains viable, Charlottesville will still need to prevail in the competitive grant process.

A group of UVA Family Medicine doctors is currently working on a similar effort to provide more prenatal outreach. Centering Pregnancy, part of a proposed Center for Healthy Families, is a “program of group prenatal care,” says Dr. Karen Maughan. Centering Pregnancy programs, which promote parent support and well-child groups, have been tied to declines in preterm delivery, according to Maughan.

“It is a program implemented with good success across socioeconomic populations,” says Maughan. She adds that the department has applied for grants during the past two years and is yet to receive funding. Implementing the project for three years would cost an estimated $41,000, with minimal maintenance costs, says Maughan. Once funding and space are secured, launching a Center for Healthy Families would take six months.

By Dr. Schmitt’s estimates, the cost of implementing either program would run far below the cost of treating infants in worst-case health scenarios.

“If it’s a baby with severe birth defects, costs can be astronomical,” says Schmitt. “NICU, surgery. If it’s a straightforward, not severely premature baby, costs can approach $100,000. For severely affected babies, you can get close to $1 million, without really embellishing that figure.”

In December, the National Department of Health launched Healthy People 2020, a program that sets a nationwide goal for an improved infant mortality rate: 6.5 deaths per 1,000 live births. For regions like Northern Virginia, which posted a 5.5 rate in 2009, the goal is attained and, it’s hoped, preserved. In Charlottesville, the goal remains ambitious, but by all accounts attainable. But without funding and outreach to the most vulnerable in our city’s midst, a lower rate may exceed Charlottesville’s grasp for years to come.

*A previous version of the story conflated the Child Safety Seat Program with the Charlottesville Area Safe Sleep program, which distributes cribs to qualifying families. "The Safe Sleep program is aimed at reducing the number of SIDS (sudden infant death syndrome) cases in our community through educational programs," says Peggy Paviour with the Thomas Jefferson Health District.