- Jessica Kuhn
These newborns are fussy. They struggle to sleep, eat and be comforted. When they do eat, they may have diarrhea that can result in dehydration or severe cases of diaper rash. They might clench their muscles or get jittery. They can't regulate their emotions, so a relatively minor problem could lead to a major meltdown.
Dozens to hundreds of babies like these are born in Colorado each year, exposed to opioids. That's a large range, but it's also illustrative of a quandary facing caregivers and the state: how to accurately report and track the rate of infants exposed to the drugs.
"The crisis is huge right now," says Susanna Prensner, a licensed clinical social worker who specializes in pediatrics.
But many experts say no crisis exists. An "Open Letter to the Media and Policy Makers Regarding Alarmist and Inaccurate Reporting on Prescription Opioid Use by Pregnant Women," dated March 11, 2013, four years before the U.S. Department of Health and Human Services declared opioid abuse a public health emergency, and signed by 27 doctors, professors and other experts, compares the current reaction to opioid-dependent newborns to the hype over "crack babies" in the 1980s.
"[W]hen controlling for factors such as economic status, access to healthcare, and concomitant medical problems, including use of nicotine products and alcohol, decades of studies reported in the professional literature have failed to demonstrate any long-term adverse sequelae associated with prenatal exposure to opioids, legal or illegal," they wrote. Withdrawal, or neonatal abstinence syndrome (NAS), does occur, the experts noted, but it's treatable.
Prensner works with newborns in the Neonatal Intensive Care Unit (NICU) at St. Francis Medical Center, where she says there are usually at least two infants with NAS.
In a two-month period last summer, the NICU cared for 19 babies with NAS. That accounted for about 20 percent of the 109 total NICU newborns treated during that same time frame.
Of those 19 opioid-dependent newborns, only nine came from El Paso County. The remainder came from communities lacking such specialized medical care, such as the comparatively rural Alamosa.
Prensner is quick to point out that this period represented an unusual spike in services and needs to be viewed as a point-in-time sample, rather than a blanket measure of the issue. While hospitals anecdotally track their NAS babies, there is no statewide or federal database or other mechanism to keep tabs on the numbers.
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There is, however, a statewide Birth Defects Registry maintained by the Colorado Department of Public Health and Environment. Margaret Ruttenber, a department research scientist and program director for Colorado Responds to Children with Special Needs, manages the registry.
There are about 1,300 conditions that the registry tracks, she said. That includes cases of NAS. Between 2010 and 2017, 1,719 such cases were reported. The largest spike of 290 reported cases came in 2016, compared to the lowest number — 128 — in 2010.
But those statistics have limitations.
Only some hospitals — members of the 110-institution-strong Colorado Hospital Association — provide data, as reporting is done on a voluntary basis. This means that not every NAS birth in the state is necessarily included in the Birth Defects Registry. The reports also use specific codes, so statistics don't specify what drug the moms used while pregnant, Ruttenber says.
So there is no way to know whether the baby was exposed to opioids, methamphetamines, cocaine or something else.
"It hasn't been written into the hospital association [guidelines] ... yet to break down to that level," Ruttenber says. "When this gets reported, in order to really know, you would have to go back into the medical record."
Which brings even more complications.
For one thing, medical records are protected under federal privacy guidelines. For another, it is an incredibly pricey and time-consuming proposition to send researchers across the state to dig into and process the data. And the federal Centers for Disease Control and Prevention, which would be the organization to fund such research, has no immediate plans to undertake an active study of fetal opioid dependency.
But that sort of study would be necessary to get a complete picture of the problem. The government used that model, Ruttenber said, to get a better understanding of fetal alcohol syndrome nearly two decades ago.
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Evidence of growth
While there's no funding for a large-scale study, there's no doubt that the state's opioid crisis is growing. Public health data show that in 2015, there were at least 160 fatal heroin-related overdoses. In 2006, there were only 39 fatal overdoses. The National Institute on Drug Abuse reports that in 2015, a whopping 64.7 prescriptions were written for opioids for every 100 Coloradans.
Also in 2015, Rocky Mountain High Intensity Drug Trafficking Areas sponsored a multi-jurisdictional meeting with state and federal health and law enforcement agencies to tackle Colorado's heroin problem. From this came the Heroin Response Work Group.
The agency releases an annual report on opioid use in Colorado, and the 2018 review (the most recent available) shows that between 2011 and 2016, the rate of NAS grew from 2.6 per 1,000 live births (0.26 percent) to 4.4 per 1,000 (0.44 percent). The numbers came from Ruttenber's registry, and while the increase may not sound like much, it represents a 69 percent increase in just five years.
At Pueblo's Parkview Medical Center, in 2015 the number of opioid-dependent infants was dramatically higher.
"In 2012, 2015 and 2017, we were right around 20 [infants] per 1,000 [births]," says Camille Hodapp, a neonatal nurse practitioner who helps run the special care nursery. "It was all over the nation around that time.
"It took a lot of time to really believe that was happening and then it just hit us. It increased so rapidly."
All that comes with some hefty costs, too. According to a study published in the April 2018 issue of the journal Pediatrics, Medicaid covered care related to some 82 percent of the nation's NAS-related births in 2014 at a cost of $462 million.
And while, as previously noted, some experts and doctors note that women have been using opioids while pregnant for around 100 years, and there does not appear to be long-term impacts to their babies, other health professionals still worry.
"We're going to need to do some research and long-term follow-up," Hodapp says.
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Peak and ebb?
Dr. Pastora Garcia-Jones is a neonatologist at UCHealth's Memorial Hospital who also works with NAS babies at Parkview. She is also a member of the Colorado Hospital Substance Exposed Newborns (CHoSEN) collaborative, a 17-hospital-strong coalition of caregivers dedicated to getting to the heart of the issue and promoting the best practices for treating drug-dependent newborns.
The collaborative, she says, is gathering the type of information that the state can't. Specifically: What drugs a mother-to-be used while pregnant, when a newborn's withdrawal started, how the infant was treated and general details on the baby's recovery.
"What we're collecting at CHoSEN ... is clinical data," Garcia-Jones says. "The health department collects data on low birth weights, stillbirths. But as far as data we're doing something with, as far as I know the CHoSEN collaborative is the first of its kind."
She said the neonatal abstinence wave peaked at different times in different cities, as the use of heroin spread across the state. The crest in Pueblo came ahead of that in Colorado Springs, she says, but that doesn't mean the tide is necessarily turning.
She cites the widespread use of prescription opioids leading to an influx of dependent women as driving the trend. But as the understanding and media coverage of the epidemic have grown, doctors are putting down the prescription pads, meaning cases of opioid-involved NAS could taper off.
"It peaked and it slowed down," Garcia-Jones says. "It's still way higher than it was in 2006, right, but we're talking three to five times more babies than we used to have."
Treating an infant as it battles its way through withdrawal proves no easy task.
Laboring women are verbally screened regarding their drug use and hospital staff also sometimes use urine tests on new moms.
When an infant's symptoms — fussiness, high-pitched crying, jitteriness, poor appetite and an overall failure to thrive — start, they come on strong, local health professionals say.
"You start to see [the symptoms] within 24 to 48 hours, usually," Hodapp says.
Her unit subscribes to what's called the "eat, sleep, console" method of treatment. Babies are kept in a quiet, calm and dim environment, swaddled and allowed to suck on a pacifier.
"Having them be held a lot actually keeps them comforted through the withdrawal process," Hodapp says.
Those who can sleep between feedings and be soothed are kept off medicines and allowed to detox naturally. It's a holistic approach that encourages family participation in the process.
The experts who wrote the 2013 letter also noted that studies show keeping babies and moms together benefits the babies.
That method has positive impacts for the parents, too, Garcia-Jones says. That's because, she believes, every mother wants to do the right thing for her baby.
"The most important linchpin to all of this is getting the parent involved," she says. "That is really good because it gets the babies home, but the benefits go well beyond the hospital. If you can get the mother to bond with the baby because she is part of the solution rather than the problem, that has been shown to reduce recidivism.
"Positive reinforcement works."
But how far can the "eat, sleep, console" method go to promote healing? St. Francis' Prensner and fellow pediatric social worker Jeanne Moore aren't entirely sure. Their hospital is working to implement the model; but for the time being it still utilizes a tiered treatment plan that involves medicating opioid-dependent infants with morphine and clonidine, and slowly stepping them off of the meds.
"A baby like that could stay for two months, depending on a lot of other factors," Moore says.
During that time, the hospital and its social workers have plenty of opportunity to interact with the parents. Because they are mandatory reporters in cases of suspected child abuse, care providers are obligated to contact county social services when a mother reports drug use. The exception comes when the drug in question is used to help treat opioid addiction and shows the mother is attempting to get sober, Moore and Prensner say.
And that is at the heart of a medical paradox. Hospitals are obligated to care for their patients, regardless of socioeconomic status — as long as those patients aren't using illegal drugs. But if a mother who is also going through withdrawal is caught getting high on hospital property, she must leave the premises and her baby behind.
At the same time, physicians with the prescriptive power to medically treat those mothers may shy away from doing so, the social workers say. Treating addiction with a potentially addictive drug may feel counter-intuitive. Prensner believes training doctors about the benefits of medication-assisted treatment could help ease the stigma.
The National Perinatal Association recommends medication-assisted treatment for pregnant women as part of a treatment plan, and the federal Substance Abuse and Mental Health Services Administration encourages methadone treatment during pregnancy and nursing.
Further complicating the problem is the fact that in-patient recovery programs are slim in Colorado. Factor in a pregnancy or a new delivery, Prensner says, and they become nearly non-existent.
She and Moore work closely with the families, with the social services of their home counties and with the medical team to connect parents with the resources they need to recover, and to find the best possible home for each baby.
Says Prensner: "It's our mission to help people heal and grow."
This article first appeared in the Southeast Express.