'Some days are hard but I would never consider doing anything else'
This article first appeared in the St. Louis Beacon, Sept. 9, 2013 - With years of experience as a nurse and a nurse practitioner specializing in women’s health, Linda Spina has gained a lot of insight into why babies are born too soon, weigh too little, and, in some instances, die prematurely. She also has learned that conventional wisdom isn’t all it’s cracked up to be when it comes to saving at-risk newborns.
On a hot summer afternoon recently, she drove into a hardscrabble neighborhood near the intersection of Goodfellow and Natural Bridge to see a side of infant care that’s largely invisible to most area residents.
“It’s a sad case,” Spina says. The house lacks air conditioning, and the soft voice of the mother, Charitta Harral, 24, is nearly drowned out by the whirling sound of a window fan as she talks about caring for an infant born at 24 weeks and weighing only 1 pound and 11 ounces. Now 10 months old, young Ja’cailen remains unable to raise his slightly misshapened head, and he has difficulty breathing. His twin brother didn’t make it.
In spite of the heat and her child’s health problems, Harral’s mood brightens at the sight of “Miss Linda,” the name some young mothers use when referring to Spina, director of clinical practice at Nurses for Newborn.
For more than two decades, the agency’s team of experienced nurses has become a lifeline to babies and families across the St. Louis area and in 20 Missouri counties beyond. The group conducted more than 13,400 RN visits in Missouri last year. Its services cover health in a broad context, extending to issues such as nutrition and obesity, which can develop into long term problems for children. Baby formula and food, along with diapers and wipes, are among items that can be donated to the organization whose main programs include:
- Bridge to the Future, for medically fragile babies, usually discharged from neonatal ICUs;
- Bright Futures, for impoverished families lacking access to medical services during the prenatal period or at birth;
- Safe Beginnings, for physically or mentally impaired women.
In addition it has a program for teen parents living in some of the area's high crime neighborhoods.
The group's care givers and advisers educate such families on how to reduce child neglect and abuse, how to use alternatives to costly and avoidable emergency room and hospital care for some child illnesses, and how and where to find other resources to help them raise healthier babies.
All these missions are vital in a state where every day, on average, eight babies die before their first birthday, 89 are born weighing under 5.5 pounds, 26 are born too early (under 37 weeks), and many of the mothers are poor.
One widely held assumption is that lack of prenatal care is a big reason for premature births. Maybe and maybe not, according to Spina. The issue is far more complicated, she said after visits, weeks apart, to Harral and to another mother struggling with raising children born prematurely.
“Both mothers got very good prenatal care,” but they had to cope with stress hormones that were “really constant in their lives,” Spina says. “They had to cope with the stress of profound poverty and all that that entails. More and more research is showing a correlation (between) these stress hormones and how they affect a woman’s ability to carry a pregnancy to term.”
With a laptop and a scale in tow, Spina found a seat in the living room in Harral’s home and picked up young Ja’cailen, checking his vital signs, weighing him and asking lots of questions about what the mother had done and hadn’t done since the last visit. At one point during the meeting, Harral showed she was becoming more skillful in caring for the boy, reaching instinctively for a nebulizer when the child became agitated, suggesting breathing difficulty. The mother looked up and shared a smile with Spina when the baby finally began to calm down.
Weeks later, in another poor neighborhood on King Drive west of Union Boulevard, Spina is visiting Felicia Valentine, the mother of two boys born prematurely. Valentine lives on a street where commotion is constant. During Spina’s visit, a crowd gathered on the sidewalk next door after a police cruiser pulled up, followed by the arrival of an ambulance. One resident looks out a second floor window and speculates: “It’s a shooting.” Fortunately, the incident didn’t involve a fatality, but it showed how accustomed residents have become to violence in the neighborhood.
Valentine seemed indifferent to the commotion, choosing to stay focused on her talk with Spina about the progress her sons were making and her own progress with personal issues. When Spina asks her about a drug problem, Valentine points with pride to a living room wall certificate showing she has completed a residential treatment program for abusing hard drugs.
On this afternoon, Valentine is also trying to understand why a psychiatrist has decided she needs to take medication for schizophrenia in addition to medicine for a bipolar disorder. “I may be bipolar,” she tells Spina, “but schizophrenic?” Spina researches the medication and explains possible reasons for the prescription, but Valentine still objects. Spina eventually persuades her to follow her care giver's orders at least until her next appointment with the doctor.
The nurses are on call day and night, so it helps that they have turned to social media to keep in touch with some families. Moms like Valentine like that approach, mentioning that whenever a question or concern arises, she simply texts Spina to get an answer.
What’s striking is how much the organization has helped children like Valentine's two boys adjust in spite of their premature births, one in 2010 and the other last year.
“Miss Linda is awesome,” Valentine says. “She helped me to make sure my children were doing what they were supposed to be doing at certain ages. She’d test them and let me know what they were supposed to be doing, based on their ages, things like playing with blocks, drawing lines, throwing a ball, little simple things that I didn’t know they were supposed to do.”
She says, “Everything I learned, I learned from Nurses for Newborns. When I was a first time mom, I didn’t know what to do, especially for a premature baby. I had no ida that a premature baby would be that far behind a normal baby.”
Spina is impressed by the progress but concedes that both youngsters have a way to go. “Because of their prematurity, they were substantially developmentally delayed. I’d say they have caught up about 80 percent.” One got special care at a nursery at Barnes-Jewish Hospital and the other at Children’s Hospital.
An ongoing challenge at NFN involves helping people learn to navigate the system and access frequently limited services, ranging from special medical care to nutritious foods, that are essential to strengthening babies and families as well, Spina says. NFN stocks essentials, ranging from baby formula to clothing, at its office. "We don't keep things for long," she says. "They are in the door and out to families the same week."
She was asked about her interaction with the mothers, including their showing respect by referring to her as “Miss Linda.” She says, “Relationship building is important. I think that’s a big part of it. I am real. I mean what I say and say what I mean. So they do trust me. I am so proud of them, so proud of Felicia that she has finally been able to get off drugs, and I’m proud of her work to get those boys where they are.”
The organization seeks to reach families in rural communities as well. An example is a case cited by Claire Devoto, NFN’s development director. She mentions a mother who had been jailed in Illinois on a drug charge and later discovered she was pregnant. With triplets. The children were born near Chicago, and the mother's parents lived in Missouri beyond De Soto. The grandmother stayed a few weeks in a Ronald McDonald House near where the triplets were born.
Eventually the grandmother took the three girls to her home in Missouri, where Jane Adams, a member of the Nurses' team, stepped in to help. Home to the grandparents is a drafty log cabin that needed to be insulated for the sake of the triplets. Some men in the area volunteered to do the work.
Then, at another point, Adams began to wonder why one of the triplets often rubbed a spot above one of her eyes. The answer turned out to be a tumor. It was removed at a hospital in St. Louis.
“You can’t even see the scar now,” Devoto says.
The grandma suffered a heart attack last year and was also treated at a hospital in St. Louis. Devoto went to the hospital to visit the grandmother. “And here comes the grandfather pushing these three babies in a big stroller, coming to see grandma. She made it through the heart attack and (figuratively) having triplets herself, really. Grandma said she couldn’t have done this without Jane’s help. These girls are 2 years old now. They turned out lovely, just lovely."
In the absence of help provided by Adams, the children might have been removed from the family home, Devoto says. She cites this case as an example of how dedicated nurses like Adams and Spina go the extra mile to strengthen vulnerable children and families. In the case of the triplets, the assistance meant rounding up plenty of supplies for three children rather than one.
Devoto went the extra mile, too. Being moved by the case of the triplets, she made a special picture book of the children so the family can preserve the memories. She has now decided to make similar picture books of children of other families served by NFN.
Such moments are the kind that can make Spina’s day. Still she is concerned that at-risk kids face so many barriers, including less access to health care, bad housing, crime-infested surroundings, and, in some instances, less access to nutritious food.
“I’m running a little late today because I had a family that’s chronically food deprived,” she said during a recent interview at the NFN office at 7259 Lansdowne Ave. in St. Louis County.
She is dismayed, she says, because she feels that many issues, such as access to health care through Medicaid in Missouri, have become politicized, with people falling into three categories: Some people have no idea what is going on in their communities; others know but “they can walk away from it because it doesn’t affect them.” Still others, she says, “think they know but have been purposely misinformed” about problems affecting at-risk families.
In some instances, she says, access to needed child health services occurs after a medical problem has turned into a chronic condition. Add to that, she says, the stress of living in impoverished surroundings. Just last week, she says, a sister of Harral was walking with her own baby when a man stopped them, put a gun on the baby's body and told the mother "give me everything you've got or I'll shoot." Though there were no physical injuries, such incidents inflict a psychological toll on victims, Spina says.
She sighs, thinking of the plight of Charlitta Harral's own son and how a shortage of Medicaid providers causes some kids to go without care. "He has missed six months’ worth of therapy. That’s horrible. It’s six months you can’t get back.”
She becomes hopeful as she thinks about why she became a nurse and chose to focus on women’s health.
“There are some days when it’s really difficult for me to find a resource to help the mothers and children. But I love what I do. To me it’s a privilege to be invited to someone’s home and make a difference. I help change some of the bad statistics that we have in this state. This is why I do what I do. Some days are hard, yes, but I would never consider doing anything else.”