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Struggles from the Start, Hope in the End

The Youngest Victims of Opioid Epidemic Struggle at the Start of Life

Story by Shayna Greene
Video by Madison Weaver

Nurse Amy Bucklen spends 12 hours a day in Kanawha County racing between IV pumps, ventilators and warming beds in a neonatal intensive care unit filled with newborns struggling to withdraw from opioids and other drugs.

It’s the crying that bothers Bucklen most. Her tiny patients, she said, often cannot be consoled.

“A baby in withdrawal is always pretty pitiful,” said Bucklen, a mother of two girls. “They have this really high-pitched scream that is just unbearable to hear. It is the worst sound that I've ever heard in my life.” 

Bucklen is among hundreds of doctors, nurses and nonprofit workers who have been pushed onto the front lines of the drug epidemic in West Virginia, scrambling to treat a generation of babies suffering from prenatal exposure to opioids and other drugs.

In West Virginia, 51 of every 1,000 infants are born dependent on drugs consumed by their mothers during pregnancy, according to the National Center for Biotechnology Information, a branch of the National Institutes of Health in Bethesda, Maryland. That’s about six times the national average in 2014, the most recent data available, according to the Centers for Disease Control and Prevention.

In some West Virginia counties, the rate is far higher.

In Lincoln County, 106 of every 1,000 babies were born with neonatal abstinence syndrome in 2017. In Marshall County, 102 of every 1,000 babies were born with NAS, according to the West Virginia Department of Health and Human Resources.

Nineteen years ago, the NAS rate in West Virginia was just .5 per 1,000 births, according to the CDC.

“It becomes almost a norm to see the multiple generations of family being destroyed by the same culprit or same crises,” said Rahul Gupta, chief medical and health officer at the March of Dimes in Arlington, VA, and the former commissioner of the Bureau for Public Health at DHHR in West Virginia. “The ultimate way to help is actually get the mother the help while she's pregnant.”

The symptoms of NAS can be as mild as a stuffy nose and irritability or as severe as poor feeding, fevers and tremors, according to doctors who treat NAS babies. The medical community has started to research the potential long-term effects of NAS. In 2018, the CDC published a study reporting that children born with NAS are more likely to develop learning disabilities. 

Neonatologist Stefan Maxwell, the medical director of the NICU at the Charleston Area Medical Center Women and Children’s Hospital, said that in 2006, he and fellow doctors had to turn away sick infants transferring from other hospitals because many of the beds in the NICU were taken by babies exposed to opioids. That year, the CDC recorded that the prescribing rate for opioids in West Virginia was 130 per 100 people, compared to the national average of 72.4 per 100 people. 

In 2009, Maxwell and his colleagues started testing umbilical cords for drug exposure and found that one in five of the 759 babies tested had been subjected to substances, including opioids, during pregnancy, according to the West Virginia State Medical Association.

Maxwell said he decided it was critical to reach women early in their pregnancies. Both Maxwell and Gupta played a role in creating the Drug Free Moms and Babies Project, which provides treatment and counseling to pregnant women. The program began with four pilot locations and has since expanded to more than 10 sites. 

In 2017, Gupta also pushed to direct federal Medicaid funding to cover nursing services, counseling and case management for pregnant women.

In 2014, the nonprofit Lily's Place opened in Huntington as the nation’s first neonatal abstinence syndrome center, providing therapeutic and pharmacological care for babies after they leave the hospital. Parents and guardians are supported by an in-house social worker and peer recovery coach. 

Joy Stowers, of Hamlin, WV, brought her granddaughter to Lily's Place after the baby was diagnosed with NAS. 

Joy Stowers Joy Stowers sought help from Lily’s Place in Huntington, WV, when her granddaughter was diagnosed with neonatal abstinence syndrome.

Stowers’ granddaughter was given methadone in the hospital to slowly wean her off the opioids in her system. She continued the treatment when she was moved to Lily's Place. 

“The fact that the staff here is so accommodating…it just makes you feel at home,” said Stowers. “It's almost like you're walking into a family.”

Doctors say that providing care to mothers is just as critical as treating babies.

“I think as a society, we have thought about the baby primarily, and it's just and right to do that,” said Gupta. “But in the process somewhere we've forgotten about the mom that also is there.” 

NICU Family Support Program Coordinator Lisa Creel provides classes at CAMC Women and Children’s Hospital, focusing on such things as infant nutrition.

“In my experience, this is one of the most valuable components to success – the feeling of not being alone, the feeling of community within the walls of the NICU, the shared experience which brings them together,” said Creel. “Seeing parents share and learn from each other brings a feeling of hope.” 

Advocates for women and children say far more needs to be done.

Booth Goodwin, former U.S. Attorney for the Southern District of West Virginia, last year partnered with other law firms to sue pharmaceutical companies on behalf of families whose children have been diagnosed with neonatal abstinence syndrome. So far, the firms have received more than 200 inquiries from parents, foster parents and grandparents.

In October 2018, Goodwin filed his first lawsuit on behalf of grandparents Andrew and Beverly Riling and their 11-year-old granddaughter, who was exposed to OxyContin and other drugs, according to the civil complaint.

The Rilings, who are now the adoptive parents of their granddaughter, are suing opioid manufacturers and distributors. The case was originally filed in U.S. District Court for the Southern District of West Virginia, but was included four months later in the multidistrict litigation in Cleveland, Ohio, where more than 1,500 cases involving Big Pharma across the country have been consolidated. 

“We've lost a generation of folks to addiction,” said Goodwin, whose wife, Amy, is the mayor of Charleston. “If we're not very very careful and if we don't provide for the children of that generation in a substantial way, then we're going to lose yet another generation and the cycle will continue.”

Others on the front lines of the opioid epidemic have decided to make an impact from home. After spending everyday treating babies with NAS, nurse Bucklen said she plans on becoming a foster parent and has begun renovating her home with her two daughters and husband to accommodate at least six children with special needs, including those with NAS. 

“The majority of the kids are not going to get their second chance,” said Bucklen. “I feel like that's what my calling is, and my husband agrees. They really are amazing little fighters.”