By Vicki Smith
Donations come every day, and more than 250 “cuddlers” have volunteered to comfort newborn babies enduring the torment of drug withdrawal when a unique treatment center opens this fall in southern West Virginia.
Privately operated and financially independent, Lily’s Place in Huntington will carefully wean infants off opiates and other drugs under medical supervision — but outside a neonatal intensive care. And while it’s partially modeled after a decades-old Washington state program, Lily’s Place aims to go a step further, working with addicted mothers in hopes of sending infants home to safe environments.
“You can’t fix the baby,” says clinical adviser Sara Murray, “without fixing the family.”
But generosity and good intentions don’t always pay the bills, and the founder of the Pediatric Interim Care Center, a partially state-funded program in Kent, Wash., worries whether Lily’s Place will find the stable source of money it needs.
“It’s very hard to set up a program like mine. I’ve been to so many states, and they have not been able to put it together,” says Barbara Drennen, whose facility was born of the 1980s “crack baby” epidemic and needs up to $1.6 million a year to operate.
“If you don’t have continuous funding — and that’s a battle every year — you absolutely can’t do it,” Drennen says. “You can get the clothes. You can get the donations. But that is not going to keep you going. You need big money to do that.”
The co-founders of Lily’s Place believe that between Medicaid and foster care reimbursements, and eventually billing private insurers, their plan will work. It has to, they say. The need is too great.
At Cabell-Huntington Hospital, one in 13 babies is born to a drug-addicted mother. Some days, they fill 70 percent of the neonatal intensive care unit, or NICU. That takes resources from other critically ill babies.
Murray, a registered nurse at Cabell-Huntington, says 28 percent of the babies born there test positive for opiate exposure. That’s more than double the national average, Murray says, but it’s likely higher because not every baby is tested.
Murray has worked with Mary Brown, a hospital volunteer, to turn a donated medical office building into a 17-room haven for as many as 31 infants at a time. Lily’s Place will ease the pressure on NICUs at Cabell Huntington and other hospitals, while ensuring babies still get medical care from a team of 29 nurses and a supervising medical director. Should an emergency arise, Cabell Huntington is just six blocks away.
Churches have donated bedding and diapers. Donors have provided everything from beds and rocking chairs to flooring and decorating services. Others provided materials at deep discounts, and recovering male addicts from The Healing Place have labored on renovations for free.
“Of course we have concerns” about long-term funding, Murray says. “Anybody that’s going to take on an endeavor like that will have concerns. But I really think it’s going to be OK. I absolutely believe the community will step up and stay involved.”
Brown, a housewife and mother of three sons, says she has “no expertise in anything, except when I ask people for things, they generally will find a way to do it.”
She works 50 hours a week on Lily’s Place, collaborating with the state Department of Health and Human Resources on licensing and reimbursement issues, writing grant requests and finding contractors.
Brown hopes to persuade the manufacturers of the prescription drugs fueling West Virginia’s epidemic to fund her program, but she knows that’s a long shot: She got her first rejection letter from a major pharmaceutical company last week.
Treating drug-exposed newborns outside a NICU is “a thinking-outside-the-box kind of thing,” Brown says. Most are either treated in hospitals or missed entirely, sent home with mothers whose addictions go unnoticed.
But creative thinking is necessary “because our problem is worse than anywhere else,” Brown says. “One in 13? Those numbers are crazy.”
A study last year found that the number of U.S. babies born with signs of opiate drug withdrawal has tripled in a decade because of a surge in abuse of both legal and illegal narcotics. The problem is especially prevalent in West Virginia, Maine, Florida and parts of the Midwest.
The study, published in the Journal of the American Medical Association, was the first of its kind. Weaning babies off the drugs can take weeks or months, and the study found that the cost to hospitals more than tripled from $190 million in 2000 to $720 million in 2009.
Wolfson Children’s Hospital in Jacksonville, Fla., says the number of babies born in withdrawal there has increased tenfold over eight years. Two neonatologists there are testing acupuncture as a supplemental treatment, though they say it’s too soon to report results.
Drennen, who once cared for babies in her home, says the drug scene has shifted in Washington state. The prescription epidemic trickled off as heroin became cheaper — about $10 per dose versus $80.
But she says there’s no doubt it’s cheaper to treat babies in a non-hospital setting: NICU treatment of drug-exposed babies costs $3,700 a day in Washington, while her facility costs the state health care agency just $13 a day.
And while the Legislature once funded her operation at 100 percent, Drennen says, it’s now about 45 percent. The rest of her budget comes from donations, so she understands the fight her friends at Lily’s Place face.
Brown says Lily’s Place has a cooperative relationship with the state that will be critical to its success. Her education center will work with the state-run Birth to Three program, mental health agencies, church groups and others to heal damaged families.
Lily’s Place will also have a diaper distribution center, so staff will see the babies regularly for their first few years. And there’s a food pantry across the street to help families who are hungry.
Instead of worrying, Brown looks to Scripture for reassurance the money will come.
“God,” she says, “takes care of the lilies of the field.”