Ambitious Sarasota County initiative will embrace all babies
Every day in 2017, an average of 10 babies were born in Sarasota County — half of them to parents who could not even afford the price of bringing them into the world.
Each of these five babies came into the arms of a single mother who earned less than $22,311 a year — or perhaps joined a family of six surviving on less than $61,000 annually. Such thresholds — 185 percent of the federal poverty level — qualify a woman in Florida to have Medicaid cover her health care costs during labor and delivery. At Sarasota Memorial Hospital’s maternity ward, the only one in the county, this stark fact of life applied to 51 percent of all 3,564 newborns last year.
Of course, babies in low-income households can and do thrive, while those more comfortably situated are not immune to setbacks. But this stubborn pattern of economic disparity suggests that a given pair of babies born on the same day in Sarasota are likely to leave the hospital on vastly divergent trajectories. And when they meet again — perhaps in kindergarten, when the maturation process in their brains is about 90 percent complete — they are liable to begin their formal educations armed with such radically different vocabularies and capacities for comprehension that they might as well be growing up on opposite ends of the planet.
It’s a harsh dichotomy that Kelly Romanoff calls “unacceptable.” As projects manager for the Charles & Margery Barancik Foundation, she has worked for the past year to assemble a coalition of 32 nonprofits, foundations and government agencies in service of a new campaign, First 1,000 Days Sarasota County. The partnership, after an official launch this Wednesday, will seek innovative ways to support local families during a child’s most critical period of development — from conception through the first two years of life.
Within this small window of time, children learn to distinguish sounds, recognize a face, scoot across a room, put words together and make early sense of the world, forming neural connections in the brain that will determine habits of perception for the rest of their lives. First 1,000 Days efforts are built on the premise that babies deprived of proper nourishment and stimulation, or exposed to toxic stress at levels that damage their fragile brains, are being failed not only by their families, but by the larger support networks designed to protect them.
“This is a problem that can be solved,” Romanoff says. “While the families face many obstacles, as a whole our resources in this community are so abundant, that by just bringing everyone together, closer, and inviting people to invest in the work that’s being done, we can really get access to these families and help mitigate so many of their challenges.”
While the scope of the dilemma is complex and daunting, local collaborators believe they can make significant headway, for two reasons:
• Everybody loves babies, and feels responsible for their welfare.
• Research has shown that, allowed time and space to develop fully, the mother-infant bond is so powerful that a woman can overcome such hurdles as poverty, addiction, trauma and social isolation in order to give her child a life far safer and more nurturing than her own has been.
‘I have feelings’
Sarah Guinn is one of the lucky young women to find that time and space, but she had to go to jail to get there.
Cradling her 5-week-old son Carter against her shoulder and locking him into a loving laser-gaze, she tells her story: After years of addiction, she was shocked to discover she was pregnant. Determined to get clean for her baby, she called three detox facilities and was rejected by all of them. Finally, she says, she turned to her probation officer — and asked for the urinalysis she knew would prove she had violated her probation by using illegal drugs. After more than 100 days in jail, going through withdrawal, she obtained a court-ordered referral to First Step of Sarasota, a partner in the First 1,000 Days project.
For more than 20 years, First Step’s treatment and education program has offered behavioral therapy, parenting and nutrition classes and 24-hour support from counselors, along with residential care for the baby’s first months of life. Formerly addicted mothers can study for a GED or take vocational classes to get ready for what comes next. Because residential facilities like this are rare in Florida, mothers come from all over the state. Along with child-rearing skills, they learn how unwise it can be to return to former routines, so Sarasota County is often where they choose to make a fresh start with their babies.
Kyley Flores is hoping that she and her 3-month-old daughter Audra can find a place at Our Mother’s House, a Venice housing program run by Catholic Charities. Her long-term goal, she adds, is to open her own nail salon.
“I know it won’t be easy,” she says. “But I already had to do a lot of hard things, and make a change in the kinds of people I associated with.”
Guinn isn’t sure yet what comes next for her and Carter; she lost her apartment and job in Polk County when she went to jail. But it was worth it, she insists: “He’s awesome. He’s the reason I did everything.”
First Step clinical director Nancy Page has seen women respond almost magically to the methodical encouragements they receive at the center, after enduring the social judgment that convinces other struggling mothers to give in to old habits. When they see their babies born drug-free and at a healthy birth weight, she says, they are motivated to forge a more disciplined and grounded family life.
“I feel great,” Guinn says. “I hadn’t been more than a day sober in eight years, and now I have feelings. I want to be the best mom I can for him. When he was born and they put him on my chest, I just stared at him. I didn’t know what to do.”
Page, who has been in the field of recovery counseling since 1992, does not underestimate the current opioid epidemic’s implacable force. But she will testify that a natural maternal instinct can be just as irresistible.
“If you talk to our clients, they say it was a game changer for them,” Page says. “They give credit to being pregnant for saving their life. You know, these are people who are broken in some way, emotionally, spiritually. They’re doing the best they can, and it’s become a way to numb out from what’s going on, until you get to somewhere you can feel you don’t have to hide. Then they learn to care more about another living being — even if they can’t see or touch it, but they can feel it — than they do their drug of choice.”
Prabhu Parimi, director of the Maternal, Fetal & Neonatal Institute at Johns Hopkins All Children’s Hospital in St. Petersburg, is a specialist on what happens when a woman cannot resist her addiction long enough to deliver a drug-free baby. Parimi will speak in Sarasota Thursday at a fundraising luncheon for Healthy Start, another partner in First 1,000 Days Sarasota County.
“Not very many OB’s” — obstetricians — “are willing to take those mothers who have been on medications. They don’t want to deal with this patient population,” Parimi says. “The consequence is that we as a medical community aren’t doing the right thing. That’s a broken system. Consequently, mothers don’t seek prenatal care. And then they deliver premature, low-birthweight babies.”
These newborns are not addicted to medications; rather they have been exposed to them in ways that are known to stunt fetal development. When the birth is premature, Parimi explains, the problem is compounded because growth that should have occurred in the womb takes place in a disruptive artificial environment. On top of these factors, he says, is one just beginning to be more fully understood: toxic stress. According to a recent New York Times Magazine article on the notoriously high mortality rates for African-American infants and mothers, toxic stress is suspected to be a determining cause in their problematic pregnancies.
“It’s an emerging area of interest,” Parimi says. “That’s why we are invested in caring not just for the babies but also the mothers. Cortisol” — the hormone that floods a body under stress — “has been shown to change the type of bacteria in the gut, and there’s a connection between the gut and the brain. So if a mom has been subjected to these psychosocial stressors, the baby acquires this abnormal microbiome. That means if you disrupt normal microbiota through a number of different mechanisms, it may affect an area of the brain.”
Stress — the constant companion of women living in or near poverty — is also known to affect cognitive development in infants. Anything from sudden loud noises to unaddressed hunger can bathe the swiftly forming brain in cortisol, prompting a fight-or-flight response similar to the effect of trauma in more mature brains.
“Robust prenatal care is an important component” in mitigating these stresses, Parimi says. “At least we can take two things out of the equation: a low birth weight and being born premature.”
But even when free prenatal care and education services are available, evidence shows that something prevents a significant share of mothers from obtaining them. According to a 2015 study of pregnant women covered by Florida Medicaid, 14.7 percent of them had no prenatal care until the third trimester, and 6.1 percent had no prenatal care at all.
A jigsaw puzzle
At Sarasota Memorial, the women who show up in active labor with no prenatal medical records are sometimes referred to as “walk-ins.” In 2017, according to data shared by the hospital with the Florida Department of Health in Sarasota County, there were 300 such cases — 8.4 percent of all births. The numbers are preliminary, but already they show a disproportionate share of single and African-American mothers.
First 1,000 Days Sarasota County has identified this group of mothers as its starting point, reasoning that they represent the most severely missed opportunities to make life dramatically better for babies. Working groups have formed to interrogate the available records on these worst-case scenarios, and also to meet with Medicaid analysts at the state level to understand what keeps women from seeking and getting prenatal care.
“We’re not going to guess at this,” says Bill Little, a former Sarasota County deputy administrator and longtime director of the county’s department of health. “We’re going to look at the data.”
This is the first time such an ambitious collaboration has been tried here, and it’s part of a nationwide wave of attempts to rethink conventional approaches to prenatal and baby care — largely in response to the devastating opioid crisis that is overwhelming social service systems and endangering children at every age. Responses look different in each community, but the national 1,000 Days movement frames it primarily as an issue of malnutrition, in the womb and for 24 months after birth. This emphasis was inspired by a 2008 Lancet report documenting how undernourished girls and women pass on the effects of physical and cognitive damage to generations well in the future.
There’s also a state-level operation, which concentrates on highlighting legislative priorities and fostering collaborations among agencies across Florida. The coalition will hold its first-ever summit this September in Palm Beach.
In some ways, the local initiative is blessed from the start. Sarasota County has an unusually vigorous network of public and private agencies that can support mothers and infants. But the system can be opaque — and sometimes forbidding — for women whose challenges include poverty, substance abuse, language barriers and distrust of authority. Studies show that while these women want the best for their babies, they can be easily deterred from asking for help.
The loose structure of agencies and health care providers positioned to help low-income pregnant women resembles a jigsaw puzzle, where the interlockings are tenuous at best, with crucial pieces missing here or there. For many of these mothers, it is as if they are approaching the puzzle from its nether side, and cannot see the picture at all. So they are reduced to pressing blindly on whatever piece is nearest at hand — which may or may not yield to their specific needs.
Once they fail to find help, it’s easy to stop trying.
For women who are undocumented, addicted or fluent in a language other than English, health care providers say, it’s even easier. Nicholas King, a psychosocial case manager at Sarasota Memorial, says that of all the barriers to prenatal care — which can range from a lack of transportation to cultural differences — difficulty understanding the Medicaid system is the one he hears about most.
Judy Cavallar, clinical manager of the labor, delivery and mother-baby units at the hospital, says that women who cannot take time off from their jobs — or can’t afford to — rely on Sarasota Memorial’s 24-hour emergency obstetrics center when they have an issue, even though some local obstetricians do keep regular evening hours.
“Patients that are facing whatever those barriers are,” she adds, “are good people. They want good outcomes for their baby and they want to gain the knowledge they need to bring home a healthy baby. The challenge is trying to navigate through a health care system that isn’t easy to navigate through. Having prenatal care allows you to have a relationship with a doctor who is going to see you after you deliver, so that relationship continues.”
Cavallar is enthusiastic about one early component in the First 1,000 Days project: embedding two patient navigators at the hospital who will work with mothers before and after delivery. The navigators will be a consistent friendly presence, demystifying the health care safety net and steering new families toward the community services they need.
“I keep going back to the word relationship,” she says. “A lot of these patients just are afraid. If I’m a drug-dependent mom, then maybe when I do go to the hospital they’re going to take my baby away. A lot of these patients don’t have the support systems they need to make good decisions for their baby.”
One example of this navigation model was recently put in place at Johns Hopkins All Children’s, where Kathryn Wooten serves as nurse coordinator at a new clinic for drug-exposed newborns. Established to complement a similar clinic started five years ago at the hospital’s Sarasota site, the program recently received a $2.5 million gift that will allow both locations to delve more deeply into research on fetal drug exposure. At the St. Petersburg clinic, Wooten serves as an initial and continuing contact for all mothers in the program.
“The focus for so long has been: ‘What are these moms doing wrong?’” Wooten says. “We villainized them, and I think it’s shifting.”
Wooten confesses that as a nursing student who trained at All Children’s, she had a few judgmental remarks to make about women whose careless choices damaged their newborns. Then a coworker invited her to visit a drug rehabilitation center.
“It just blew me away,” Wooten says now. “When you hear these moms’ stories, you realize that: ‘Oh my gosh; if I had made one decision differently in my life, that could be me.’ If I had been through a tenth of the things some of these women have been through, I don’t know if I would be here. The fact that they’re out there and surviving is so impressive.
“For the ones that do decide that they want to try to go through recovery, so much is required of them, and they’re working so hard for their babies — I think it’s our moral obligation to support them.”