“They can be born dependent on a substance, but there is a difference between dependence and addiction.”
Hannah* has known since childhood that her mother used crack-cocaine during her pregnancy. She was born in the 90s, when headlines called kids like her "crack babies" who were "brain damaged in ways yet unknown." When Hannah was born, a doctor told her parents that she'd die within three days. Since then, studies have shown that there can be some subtle effects from prenatal cocaine exposure, but most of the repercussions "crack babies" were thought to experience came from growing up in poverty.
More than 20 years later, the phrase "crack baby" can still rub Hannah the wrong way. "When I was young, it definitely scared me more than it does now," she says. "I felt particularly different because of my family situation, but I worried it was because my mom had done crack. Every time I hear 'crack baby,' I feel a little sensitive."
As the opioid epidemic has spread across the United States, rates of neonatal opioid withdrawal syndrome, often used interchangeably with neonatal abstinence syndrome (NAS), have exploded. From 1999 to 2013, 28 states saw a 300 percent increase in NAS cases. The National Institute on Drug Abuse says a baby is born with opioid withdrawal every 25 minutes.
NAS typically develops about three days after birth. It can cause newborns to have seizures, difficulty feeding, fevers, diarrhea, or vomiting, or respiratory distress, but the severity can vary from baby to baby.
With the NAS incidence soaring, experts say they're seeing some of the same panic from the supposed crack baby epidemic applied to opioid-exposed babies. When newborns go through opioid withdrawal at birth, they're labeled "drug-addicted infants" and "oxytots." Experts say these labels are both medically incorrect and stigmatizing for children.
"Babies, by definition, don't have enough life experience to meet the definition of addiction," says Hendrée Jones, executive director of UNC Horizons, a drug treatment program for pregnant women, moms, and drug-exposed children. "They can be born dependent on a substance, they can be born and go through withdrawal from that substance, but there is a difference between dependence versus addiction."
The difference between addiction and physical dependence is subtle, but important. Addiction is a brain disease that causes people to continue to use substances even though it harms them. Physical dependence is when the body gets used to having the substance and only functions normally with it.
The distinction matters for opioid-exposed babies for a number of reasons. One reason is that addiction can be managed, but it doesn't have a cure, says Robert Newman, president emeritus of Beth Israel Medical Center. That can lead some people to think that once babies are "addicted," they're addicted for life. The label can impact them from their earliest experiences.
"It has enormous potential harm to the babies, as the baby grows up, and to the family because of the stigma of the term 'addict,'" Newman says. "If the baby applies to kindergarten and the parent is asked about health issues and the parent says, 'the baby was born addicted,' that's the kiss of death. A lot of parents don't want their child sitting next to an addict."
Jones says she's heard child protective service (CPS) workers tell moms, "you're an addict, you're always going to be an addict, your baby will probably be an addict, too," and met educators who learned a child was prenatally exposed to substances and respond, "oh, it's one of those kids." The psychological impact of the stigma can follow kids throughout their educations and shape how well they do academically.
"A lot of times kids get disengaged in school because they feel that they're not smart enough, bright enough, or pretty enough," Jones says. "So, they disengage and then they act out because if they're not going to do well in school, they need some sort of deflection of attention."
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As a child, Hannah told her friends that her mom used crack during her pregnancy, but typically didn't tell her teachers. In middle school, one of her teachers launched into a lesson about how all crack babies were damaged and probably living terrible lives. When Hannah raised her hand and suggested that maybe some were okay, her teacher dismissed her and said they were in the minority.
Hannah is now a scientist. She studied biology, including the neurobiology of addiction, in college. There, she learned that the crack baby panic of the 80s and 90s was overstated—an issue that prenatal opioid exposure experts say we're in danger of repeating with opioid-exposed babies.
"When we look at opiates, the effect is much more subtle, like cocaine, than was ever originally thought," Jones says. "It's really easy to look at a baby and say, 'that baby's been prenatally exposed and we have this bad outcome, it must be attributed to the opiates.' But we don't know how much is truly attributed to the opiates and how much is domestic violence, [substance abuse] exposure at home, or growing up in poverty or with chronic stress or poor nutrition or dehydration."
Many experts, including Jones, say there is probably some long-term effect from in utero opioid exposure, but there still aren't many high-quality studies that identify the issues and control for other factors.
People also sometimes lump together different kinds of prenatal opioid exposure. When people think of women who use opioids during pregnancy, they're usually thinking of untreated addiction, says Mishka Terplan, professor of obstetrics and gynecology and psychiatry at the Virginia Commonwealth University School of Medicine and associate director of addiction medicine.
But Terplan says there are actually three populations of women whose infants might develop NAS, and these moms and their babies have different risks and likelihoods for healthy outcomes. First, there are women who take opioids for medical reasons, like sickle-cell disease. Second, women who are being treated for opioid addiction with methadone or buprenorphine. Third, women who have an untreated addiction.
Untreated opioid addiction is the most risky for moms and their children. Heroin causes short cycles of intoxication and withdrawal that can hurt a pregnant mother and her baby, says Stephen Patrick, a neonatologist with Vanderbilt University School of Medicine. Withdrawal can make the uterus contract, causing miscarriage or preterm birth. Going cold turkey is also dangerous because it creates a high risk that the mom will relapse and accidentally overdose.
For women in active addiction, getting a medication-assisted treatment can save their lives and their child's. Medication gets rid of the intoxication-withdrawal cycle, helping the pregnancy go to term. In 2009, the Substance Abuse and Mental Health Services Administration published a brochure encouraging pregnant women using opioids to seek out methadone maintenance treatment. Unfortunately, treatment for pregnant women is often hard to find.
"Everyone wants to and tries to improve their health during pregnancy, and those who can't have an addiction," Terplan says. "The women who continue with untreated disease, it's almost always because treatment is not available. Not because they don't want or don't care, but it's actually literally unavailable."
The irony is that premature babies born to women with untreated addiction sometimes don't display symptoms of opioid withdrawal because they're too young. Instead, they're at risk for a host of long-term issues associated with prematurity, like physical disabilities, autism, and behavior problems. Meanwhile, babies who are born full-term because their moms received methadone treatment may go through withdrawal, but their long-term prognosis is better.
"We put so much emphasis on drug withdrawal that we forget what we want to prevent in the first place," says Patrick. "We talk about how murky the data is on opioid exposure, but the data is not murky around being born at 24 or 25 weeks."
Unless they're experiencing a genuine issue that calls for high-intensity care, experts say babies with NAS often don't need to go to the neonatal intensive care unit (NICU). Often the best treatment is rooming-in with their moms, keeping the room dim and quiet, breastfeeding, and receiving medication to manage their withdrawal symptoms if appropriate. In 2015, a Canadian study found that using a rooming-in program reduced the number of babies who needed medication for NAS from 83.3 percent to 14.3 percent and decreased the average length of their hospital stays from 25 days to eight.
"Most traditional NICUs are the absolute worst place for children to be treated because it's bright all the time, it's noisy, there are lots of interventions, there's not skin-to-skin opportunity very often, and moms are separated from their baby," Jones says. "That's the wrong approach unless you have babies who are born premature or they're having true respiratory distress symptoms. Obviously, there are important reasons babies go to the NICU, but just for NAS, there's no reason these babies need such high-level intensity care."
Still, some hospitals automatically take opioid-exposed babies to NICUs, regardless of the mom and baby's conditions. Sometimes it's because there's not enough space in the mom's room and it's easier to put all the opioid-exposed babies in one room, says Terplan. Sometimes it's because NICU stays are expensive and hospitals use that money to cover less profitable parts of their business, says Jones. Sometimes it's because of the stigma against women who used opioids during pregnancy.
"It's not uncommon to punish pregnant women for the disease of addiction and their reproduction," Terplan says.
But separated from mom in a bright, noisy room, babies can suffer, too. The well-being of moms and their babies is so intertwined that discrimination against one often hurts the other.
Patrick says the stigma against women who used opioids while pregnant can prevent them from being honest about their use. Some are afraid they'll lose custody of their child. They'll leave the hospital with their baby and three or four days after birth, the baby may go through withdrawal at home, where there's no medical management. Patrick says he's seen an infant lose ten percent of its body weight within the first 48 hours of life.
Newman says the stigma against opioid-exposed babies and their moms is devastating. He'd like to see professional medical organizations do more to correct people's misconceptions about prenatal opioid exposure. Jones says there needs to be more training for CPS workers, medical professionals, law enforcement, and judges to help them understand the brain biology behind addiction and that there is hope for recovery.
For Hannah, learning about the science of addiction in college was a revelation. When she now tells people that she was exposed to crack-cocaine in the womb, she also tells them about studies showing few effects. She hopes that children who were prenatally exposed to opioids will be able to do the same as they grow up.
"If possible, get into science and the neurobiology behind addiction," she says. "That's something that really helped me out and helped me explain to people with a lot of confidence that they were wrong in their opinions. We can only hope there will be the same kind of scientific uprising and that they'll be more level-headed about it."
But even though experts have debunked the crack baby myth, it continues to affect the children it labeled. Hannah asked to be anonymous for this article because she's considering going to grad school or applying for new jobs. She knows that if admissions officers or potential employers Google her and learn about her history, they might still have misconceptions about her.
"That's a totally justified expectation," Newman says.