Affliction of the Innocents

This story originally appeared in the September/October 2015 issue of West Virginia Focus magazine.

The halls at Lily’s Place, an old Huntington podiatrist’s office turned infant drug withdrawal center, are almost noiseless. For drug-affected newborns, almost any kind of stimulus is unbearable. “Sometimes just talking to them is too much stimulation,” says clinical care manager Rhonda Edmunds. The nurseries are kept dark. There are no bright colors. Only more advanced patients can tolerate mobiles over their cribs. Staffers walk softly and speak in hushed voices. So it is especially jarring when a baby’s wails cut through the quiet.

It’s true what they say about the cries of infants exposed to hard drugs in utero. They sound different from the cries of a healthy baby—shriller, more pained and desperate. It’s becoming an increasingly common sound in West Virginia maternity wards.

As drug abuse continues to climb in West Virginia, so does the number of pregnant users and the number of newborns exposed to these harmful substances. In 2009, the West Virginia Perinatal Partnership conducted a study of umbilical cord blood from 759 babies at eight hospitals around the state. Researchers found nearly 1 in 5 of the infants tested positive for marijuana, opioids, alcohol, or other “significant substances”—and most of the affected babies tested positive for more than one substance. There have been no follow-up studies to show whether those numbers have changed, but speaking with medical professionals it’s clear the problem is only growing worse.

Before she helped open Lily’s Place in October 2014, Edmunds worked at the Neonatal Intensive Care Unit at Cabell-Huntington Hospital. Drug-affected babies, she says, took up more than half of the 36-bed unit. The hospital eventually had to create a separate 12-bed unit for babies with Neonatal Abstinence Syndrome, the medical name for infant drug withdrawals. It wasn’t long before the new unit was also filled to capacity. On a recent day, there were 22 babies in the unit. That’s why Edmunds and co-founders Mary Brown and Sara Murray launched Lily’s Place: to free up space in the hospital and get the babies out of the hospital environment.

Dr. Stefan Maxwell, chief of pediatrics Charleston Area Medical Center’s Women and Children’s Hospital, has also watched as babies suffering from Neonatal Abstinence Syndrome (NAS) skyrocket at his hospital, and says all 30 birthing hospitals in the state are seeing similar increases. Kelly Crow, manager of Labor and Delivery at Raleigh General Hospital, told a local news station in April that one in three babies born at her hospital are drug-affected.

Medical professionals generally avoid the term “drug-addicted” when referring to infants. Because addiction is both a physical dependence and mental illness, it’s more appropriate to say they are “drug-affected” or “drug-dependent.” “The babies are not necessarily born addicted. They have been exposed to narcotics and are therefore going to have a withdrawal syndrome when that drug is taken away,” Maxwell says.

But no matter the preferred terminology, these babies are extremely difficult to treat. As Edmunds explains, opiates like heroin and prescription painkillers restrict the flow of dopamine to fetuses’ brains. This leads to problems in the central nervous system, which causes excessive crying, tremors, and sometimes seizures. It also affects the autonomic system, which can lead to excessive sneezing and yawning, and the gastrointestinal system, causing vomiting, diarrhea, and severe gas.

Medical professionals have to treat these symptoms while also weaning the babies off the substances causing the symptoms. The infants can’t be weaned too fast, however, or else the withdrawals might exacerbate their condition. Some of the tiny patients are released after a few weeks. Maxwell has treated babies for as long as three months.

The good news is, Neonatal Abstinence Syndrome is entirely preventable. Mothers just have to stop using drugs—which, of course, is easier said than done. Maxwell has some ideas, however. He would like hospitals to screen expectant mothers for drugs early in their pregnancies. Hospitals would refer users to treatment, in an attempt to get them sober as quickly as possible. “So the baby is not as badly affected in the end,” Maxwell says. He says it’s important to get mothers off drugs by their second trimesters. Any later, and withdrawal symptoms might do additional damage to the baby.

It’s a good plan, but there’s a problem. The screening tests would cost lots of money and no one—hospitals, health insurance companies, the government—is quite ready to pony up the cash. Maxwell, who also serves as chairman of the West Virginia Perinatal Partnership’s central advisory council, has an idea to tackle this problem, too. He believes if he can show how much money Neonatal Abstinence Syndrome is costing society, the government will be more willing to fund prevention efforts. “Until you can show the government what it’s costing them, you can’t expect them to spend money on programs,” he says. “If we can collect accurate data, we can then put an estimate on the cost of this problem to society.”

At the moment, there’s no good way to estimate the cost of neonatal abstinence syndrome. Maxwell says it’s probably around $40 million per year in West Virginia but that figure is “based on a lot of supposition.” Medicare data would be the best way to collect information, but because of the way medical coding works, there are myriad ways for physicians to classify pregnant, drug-using patients and their babies. The information is scattered all over the place.

So beginning this fall, Maxwell and his colleagues at Cabell Huntington Hospital and West Virginia University’s Ruby Memorial Hospital will begin making rounds to hospitals around the state, trying to get obstetricians to use a standard set of billing codes for Neonatal Abstinence Syndrome and related conditions. “If we can have everybody on the same page within 6 to 10 months, by spring of next year I think we will have accomplished something,” he says. “Once the codes are put in, the (state Department of Health and Human Resources) collects all that data. Medicare will have an idea of how much money they are spending.”

Maxwell says it will be easier to ask state lawmakers to fund prevention efforts once solid statistics are available. “We can say ‘Here’s a program that works, here’s what it costs.’” With the right programs in place, he says West Virginia could cut the number of drug-affected infants in half by 2020. “I think it’s realistic.”