Haymarket Centers’ Dr. Dan Lustig discusses the need for expanded treatment to meet the growing epidemic of babies born in withdrawal.
BY KRISTEN SCHORSCH
PHOTOS BY MANUEL MARTINEZ. ILLUSTRATION BY ANDREA LEVY.
Zabian Halliburton was born across the southern Illinois border on New Year's Day, arriving into the world at 8 pounds, 6 ounces and 21 inches.
By his second night, he was in withdrawal from the cocktail of meth and heroin his mother used while pregnant, as well as the methadone treatment she relied on to try to get clean. He spent the first week of his life weaning off drugs.
“He just turned red,” his mother, LaTanya Halliburton, 34, recalls. She's sitting inside a playroom while Zabian sips a bottle at the West Loop's Haymarket Center, one of the few places in Illinois where mothers and their kids can stay together during addiction treatment. “He was screaming and sweating like crazy.”
The opioid epidemic has unleashed a storm that's battering its tiniest victims, whether their moms used legally or not during pregnancy. The number of babies born with withdrawal symptoms—inconsolable crying, trembling and, in the worst cases, seizures—is skyrocketing across the country as opioid use grips their parents. A severe drought of treatment options in Illinois for pregnant women in the throes of addiction suggests there's no resolution in sight.
The burden to treat these babies is enormous—on the hospitals that care for them, on the state Medicaid program that largely incurs the cost, and on the generation of children who face little-understood long-term consequences.
LaTanya Halliburton, 34, feeds her nearly 3-month-old son, Zabian, in their room at the Haymarket Center in Chicago.
“It's unbelievable how much it has grown,” says Jodi Hoskins, a nurse who helps educate and support a network of hospitals in northern Illinois where babies are born. “It's almost as if it snuck up on people.”
It's hard to capture the full scope of how the opioid epidemic impacts babies. Hospitals across the state, the Illinois Department of Public Health and the federal government have different methods of gathering or interpreting data on cases of so-called neonatal abstinence syndrome. The data also lags several years, making it difficult to assess the fast-paced epidemic's impact on its most vulnerable casualties.
The number of victims in Illinois is likely much higher than reported. In this state, there's no standard clinical definition of the syndrome, the collection of symptoms that babies experience when withdrawing from substances. These days, that's often opioids. Some doctors and nurses aren't trained to recognize the signs and therefore don't test for the syndrome. In other cases, experts warn that physicians' bias could inflate the diagnosis among low-income babies of color and undercount white victims whose mothers can afford private insurance—labeling them with a seizure disorder instead.
For the past two years, a state task force has been studying how to combat the rise in NAS cases, but it doesn't plan to deliver final recommendations to the General Assembly until 2019. So
doctors who watch their intensive care units fill up with quivering newborns aren't waiting. They are drawing from a playbook of successful programs
around the nation. Some hospitals, meanwhile, are moving to open new neonatal ICUs.
Mercyhealth Hospital in Rockford cares for its sickest babies in a 52-bed NICU. Inside, it's as if a hush has fallen over the cluster of nurses, doctors and parents. The steady hum of alerts and machines typical on any hospital floor is faint here. The lights are dim. Taped to the door of a room where a nurse feeds a baby with a syringe is a sign that simply says “Shhh!” since babies going through withdrawal are extremely sensitive to stimulation like light and noise.
Mercyhealth has some of the highest numbers of babies born with withdrawal symptoms in Illinois. The hospital estimates it treated about 65 babies with NAS in 2017. Dr. Gillian Headley, director of the NICU, and Sandy Damon, a neonatal nurse practitioner, don't quite know what's causing the spike in their area. But they tick off a few observations. Babies are being exposed to higher amounts of opioids in the womb than they were years ago, and more pregnant women are using another drug in addition to opioids, particularly marijuana. These factors can make babies' withdrawal symptoms last longer.
But taking a broader lens, the county that surrounds them is struggling. Winnebago County, which includes Rockford, has some of the highest rates of ER visits and hospitalizations for opioid overdoses in the state. Nearly 1 in 4 kids are poor. A quarter of residents don't finish high school, according to new research.
The former Rockford Memorial, which in 2015 joined Janesville, Wis.-based Mercy Health System, has experienced an influx of neonatal abstinence syndrome cases, partly because it takes transfers from 15 hospitals and is equipped with specialists. In search of advice on how to best confront NAS, Mercyhealth turned to the Vermont Oxford Network. The nonprofit, which focuses on bolstering care for newborns and their families, is a go-to resource for hospitals around the country. In Rockford, nurses now aggressively wean newborns from the morphine that they're initially given to help their tiny bodies cope with severe withdrawal symptoms. They encourage moms to breastfeed, and they plan to add at least two certified nursing assistants to solely focus on babies going through withdrawal.
“(NAS) babies aren't high-tech. They're not on (ventilators to help them breathe). They don't have an IV in general,” Damon explains. “But they are extremely labor-intensive.” Think of a nurse constantly cradling an inconsolable baby in one arm while trying to take care of one or two others.
The hospital's efforts have helped shorten the stay of NAS babies to around 22 days, down from about 30. Next year, Mercyhealth plans to open a NICU with all private rooms (including a futon for guests) inside a new $505 million hospital. Now some babies are monitored in a large open space with rows of tiny beds, while others are put in smaller rooms that fit two to six babies. Chairs are perched nearby for parents to sit with their newborns, but there's little privacy or a bed to sleep next to their babies overnight.
“We really think that we will find that the private room makes it more likely their moms will spend more time with them” and hasten the babies' recovery, says Pam Allen, the NICU's nurse manager.
In 2016, 391 babies in Illinois were born with neonatal abstinence syndrome. The number may sound small until you consider that nearly 3 of every 1,000 babies were born with withdrawal—a 53 percent increase over six years, according to the state Public Health Department. The rate is climbing fastest in rural counties, while decreasing in Chicago. It's highest among white babies and those on Medicaid, though 14 percent were on private insurance, signaling that the syndrome isn't just happening to the poor.
In 2016, these babies stayed in the hospital around 13 days and cost nearly $34,000 each to care for, compared to a two-day stay and a tab of about $4,400 for newborns without the syndrome. (Mercyhealth says this mirrors its experience, too). In total, treatment for NAS babies in Illinois cost nearly $24 million in 2016.
Nationwide, new research on Medicaid NAS cases shows they climbed more than fivefold from 2004-14, to around 14 per 1,000 births. The decade long cost: $2.5 billion. Vermont has the highest number of cases, with about 55 of every 1,000 babies in 2014 born with withdrawal signs, the most recent federal data shows.
While some doctors shy away from treating pregnant women on opioids, others are better informed. The drugs of choice to safely help women quit heroin and other opiates during pregnancy include methadone and buprenorphine. The concern is that, if women stop using altogether while pregnant, they can have a miscarriage.
Starting with the mothers is crucial to truly help the babies of the opioid crisis, says Dr. Mishka Terplan, an addiction specialist and obstetrician in Richmond, Va. The barriers for pregnant women to seek addiction treatment are plenty: feeling guilty and ashamed for using drugs while pregnant; having no one to watch their current children if they need to stay at a treatment facility; dealing with doctors who judge them; fearing they'll lose their babies to authorities once they're born. (The Illinois Department of Children & Family Services says it doesn't typically separate moms and babies if women have legitimate prescriptions for drugs they use while pregnant, and doctors say women in treatment also don't usually lose their children.)
Here's perhaps the biggest hurdle: finding a treatment center. Shannon Lightner's office within the Illinois Department of Public Health reviews deaths of pregnant women, including overdoses. “We see women coming forward during their pregnancy begging for help because of their addiction, and they don't know where to go,” Lightner says, adding that emergency room doctors and nurses often don't know where to refer women for treatment. “They end up overdosing and dying.”
Since the Medicaid public health insurance program covers nearly two-thirds of babies born with withdrawal symptoms in Illinois, a state intern gathered data on opioid treatment centers available for pregnant women. Her preliminary findings: Only 36 percent of counties have some resource.
Cook County, which has the largest population in the state, offers the most options, while large swaths of western and southern Illinois remain deserts—a big problem given that pregnant women using methadone typically require it every day. A potential culprit: unappealing low reimbursement rates that don't fully cover the cost of care.
Haymarket Center knows this well. The nonprofit Chicago addiction treatment facility fields one to two patients a week who trek from the East St. Louis area, like LaTanya Halliburton. “You have pregnant women who are a priority population for the state, but you're not seeing major expansions of treatment to the degree to meet the epidemic,” says Dr. Dan Lustig, Haymarket CEO.
To get help here, Halliburton, who first used drugs at age 11, traveled about 300 miles in a cab from the hospital with her newborn son. She plans to rent an apartment back home in downstate Alton near a methadone clinic this spring, with young Zabian in tow.
Click to read the full story