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Dr. Kimberly Spence ’94 treats the youngest victims of the nation’s opioid crisis.
By Amy Martin
heir tiny hands spasm at the slightest noise. Their skin is soft and wrinkled. The babies Dr. Kimberly Spence ’94 treats look like typical newborns. But these infants at Cardinal Glennon Children’s Medical Center in St. Louis, where Spence is an attending neonatologist, are different.
They are the littlest victims of the biggest drug crisis in American history.
Born to mothers addicted to opioids, including heroin or prescription opiates, Spence’s patients are dependent on the drugs at birth and suffer through withdrawal, a condition known as neonatal abstinence syndrome.
Their numbers are growing. But it’s not just in St. Louis. It’s in small towns in America’s heartland, in New England’s suburbs, in big cities up and down the East and West coasts.
The opioid problem is nationwide, and newborns are paying the price.
The numbers of babies born with NAS in the U.S. tripled between 1999 and 2013, according to the Centers for Disease Control and Prevention. Infants with NAS now make up 20 percent of the population in neonatal intensive care units. Nationally, NAS affects six of every 1,000 newborns; in West Virginia, as many as 33 of every 1,000 are born drug dependent.
Every 25 minutes, a baby suffering from opioid withdrawal is born.
“It’s an epidemic,” Spence says.
STANDARD OF CARE
Both a medical doctor and an associate professor of pediatrics at Saint Louis University School of Medicine, Spence became interested in NAS out of pure necessity.
After earning a medical degree at the University of Missouri in 1998, Spence, who studied chemistry at Conn, completed a pediatric residency at St. Louis Children’s Hospital and a three-year fellowship in neonatology through Washington University School of Medicine. She loved working with babies, and she thrived in the fast-paced intensive care unit treating sick and premature infants. When she started as a full-time neonatologist in 2004, only a fraction of her patients were babies with NAS. But over the next 15 years, the number of cases shot up 200 percent.
So Spence, a self-described “organizer of chaos,” started looking into treatment options and ways to optimize health outcomes for infants and their mothers. Now, she’s part of an effort to create a new national standard of care.
It usually begins with a consult. Spence sits down with the mother-to-be and explains exactly what it’s going to be like for her baby.
Babies born with NAS can experience a host of symptoms, including diarrhea, poor weight gain, difficulty feeding, irritability, increased wakefulness, high-pitched crying and increased muscle tone or stiffness. In some cases, the newborns also experience seizures.
It’s never an easy conversation.
“Every single time, the mother is crying. She’s upset, she’s embarrassed and she feels terrible,” Spence says.
Many of the mothers Spence sees have already taken the first step to getting clean. They are no longer on street drugs, but withdrawal can be dangerous for both the mother and her fetus, and the risk of relapse is great. So the women enroll in maintenance programs and are treated with controlled doses of a synthetic opioid, like methadone or buprenorphine. Usually administered in a clinic, these drugs suppress symptoms of withdrawal, prevent fetal distress and allow for healthier pregnancies.
But they are still narcotics, and they do not prevent NAS.
Until recently, the standard treatment for all infants with NAS was to wean them with small doses of morphine. Now, experts like Spence recommend nonpharmacological treatments, like swaddling, rocking and skin-to-skin contact, as the first line of care for all but the most serious cases. “Rooming in”—keeping the infant in the room with the mother—is encouraged over treatment in the neonatal intensive care unit.
“These babies do well in a low-stimulation environment,” Spence says.
“We realized pretty quickly that it was not a good idea to put them in a nursery setting, with bright lights, lots of noise and activity, and minimal opportunities for skin-to-skin contact.”
There are other important benefits to rooming in: family bonding and breastfeeding.
Breast milk can significantly reduce the need for pharmacological intervention in babies with NAS and shorten the average hospital stay, according to a 2013 study published in Acta Paediatrica. Not all mothers are good candidates for breastfeeding, Spence says, but those participating in a drug rehab program, including those on methadone, can be very successful.
Even in situations where breastfeeding isn’t possible, skin-to-skin and family bonding can be crucial for the short-term health outcomes of both the mother and the infant, as well as the long-term success of the family as a unit.
That’s why, in that first meeting, Spence encourages each mother to see herself as an important partner in her baby’s care.
“They want to be successful,” Spence says. “Every situation is different, but many of these moms just want to take their babies home and get better. And that’s what we want—moms do better with their babies, and babies do better with their moms.”
After an infant is born, Spence evaluates the severity of NAS by scoring the infant on a series of tests and observations. These scores are calculated at regular intervals to assess the levels of withdrawal, monitor the progression of symptoms and decide on the course of treatment.
In the best-case scenario, Spence recommends rooming in and nonpharmacological treatments as a first step. But in the more serious cases, when an infant’s scores rise, the baby is transferred to the NICU and treated with morphine.
“Morphine is used to treat babies who are failing to thrive, miserable or more likely both,” says Spence.
Caring for infants with NAS has a huge price tag, no matter how they are treated. The average hospitalization costs upward of $53,400, and Medicaid is the primary payer, covering approximately 78 percent of the cost of care. The new approach to care can shorten average hospital stays from six weeks to as little as two weeks. However, some infants with severe cases stay for months.
Even in the mildest cases, where no pharmacological treatment is needed, infants must be monitored for up to seven days. And rooming in means the mother must stay, too.
“The average new mom stays in the hospital for two to three days; these moms are here for a week,” says Spence. “It’s a big expense and it can lead to a bed crunch.”
Still, rooming in allows doctors to treat not just the infant, but mother as well. That’s important, says Spence.
“You can’t treat mother and infant in a vacuum. You have to treat them together—the whole family.”
REMOVE THE TABOO
To truly confront the problem of children born with NAS, a massive cultural shift in the way the U.S. approaches addiction is necessary.
More than 21 million Americans now suffer from addiction, and the results are deadly. According to the CDC, more than 52,000 people died from drug overdose in 2015; opioids alone killed more than 33,000. Since 1999, overdose deaths involving opioids quadrupled, and nearly half involved a prescription opioid like oxycodone, hydrocodone or methadone.
“We need to remove the taboo. This is a chronic health problem. It’s not a ‘pull yourself up by your bootstraps’ kind of thing, and it’s not a moral failure,” Spence says.
“Addiction is a disease. It cuts across race and socioeconomics. Once we recognize that, we can start to treat it.”
In 2016, U.S. Surgeon General Vivek H. Murthy released a groundbreaking report on the scope of America’s addiction crisis and called for a public health solution. In spite of the scope of the problem, he said, more than 90 percent of those suffering from addiction don’t seek treatment.
“Imagine if 90 percent of people with cancer or diabetes could not get treatment for their illnesses,” he wrote when he announced the report. “We would never accept that. So why do we allow it for people with drug and alcohol addiction?”
Still, many legislatures continue to treat addiction as a criminal problem, rather than a public health issue, even when it comes to pregnant women. In 2014, Tennessee became the first state to pass a law criminalizing drug use in pregnancy and making it punishable by up to 15 years in prison.
While backers of the law say it was intended to deter mothers from using drugs during pregnancy, the Tennessee Department of Health saw no decrease in cases of NAS after the law went into effect. In fact, cases increased from 936 in 2013 to 1,031 in 2014 and 1,039 in 2015.
Instead, doctors like Jessica Young, who runs an outpatient program for pregnant addicts at Vanderbilt University Medical Center, reported seeing women with drug addictions avoid seeking prenatal care until later and later into their pregnancies, risking their own health and the health of their unborn children.
“What they would tell me is that they would attempt to self-detox at home, attempt to stop at home without any treatment because they were afraid of what would happen if they admitted they had a problem,” Young told U.S. News and World Report.
The law was allowed to expire in July 2016, after a bill to extend it failed. But similar laws have been proposed in Oklahoma and North Carolina; last year, a bill was introduced in Spence’s home state of Missouri.
“It’s a terrible idea,” Spence says. “It causes mothers not to seek care and then, if you put the mother in jail, it breaks up the family.”
Expectant mothers who are addicts need help and resources, not shame and blame, Spence says. They should be encouraged to enter rehab programs and participate in support groups, but in order to do this they may need help with child care or transportation.
“It’s a lot of work for these families that don’t have a lot of resources and don’t have the support of the public,” Spence says.
With the right support, there is hope for these families. The long-term effects of opioid exposure before birth are difficult to discern, as it’s unusual for infants to be exposed to only one drug and outcomes can vary if there is also exposure to nicotine, cocaine, alcohol or marijuana. Yet studies indicate that the neurologic development of 2-year-olds born with NAS is within a normal range.
Other long-term studies have shown that these children have more visits to the emergency room, are at greater risk of neglect and abuse and are more likely to develop addictions themselves. But those outcomes might also be explained by the environmental and socioeconomic realities of being a child of an addict, and could possibly be mitigated with social services.
What’s needed, Spence says, is accessible and affordable mental health care, stigma-free addiction treatment and resources to keep families together.
“Some moms cannot care for their children, because the addiction is too strong. If you take the baby, [the mother] relapses,” Spence says. “But the mom is much more likely to stay clean if she has her kid.”