“One of the problems you’ll see in West Virginia is the long history of generational addiction. There are children who are growing up seeing their parents addicted and they become addicts themselves,” she said. “By us adding in that family part to where we’re really healing the family as well, we’re breaking that cycle of generational addiction. We’re able to make sure that baby is going home to a family that is in recovery themselves.”
The frequency of drug-exposed infants admitted to 299 of the nation's neonatal intensive care units with Neonatal Abstinence Syndrome (NAS) rose nearly four-fold between 2004 and 2013, according to a study published in May by the New England Journal of Medicine. The national study of clinical centers determined cases climbed from seven per 1,000 admission to 27 per 1,000 during the span. By comparison, in 2014, Cabell Huntington Hospital in Huntington recorded a staggering 139 cases per 1,000 admissions, Crowder said.
Rhonda Edmunds, director of nursing at Lily’s Place, said the Huntington numbers appear on the high end because every pregnant woman is screened for drugs at the local hospital. The national numbers might be higher — and outcomes for babies better — if every hospital were as diligent as Cabell Huntington in drug testing mothers, she said.
“My fear is many of these babies go undetected. They go home and they go through this withdrawal process without any help, without any of the therapeutic handling techniques, without medication to help them,” Edmunds said. “I just think that is so unfair to expect these babies to have to withstand that.”
A new model
Lily’s Place, which has 17 nurseries, provided the model for a similar facility expected to open this summer in Kettering. Construction at Brigid’s Path, at 3601 South Dixie Drive, could begin as early as next month, according to Jill Kingston and Deanna Murphy, co-executive directors. Plans for Brigid’s Path include 24 homelike nurseries.
Kingston and Murphy made their first trip to Lily’s Place in spring of 2014, several months before it officially opened that October. The former Dayton-area school teachers recognized the Miami Valley had a similar need.
In 2014, 216 infants were diagnosed with neonatal abstinence syndrome in hospitals in Butler, Champaign, Clark, Darke, Greene, Montgomery, Preble and Shelby counties, according to the Greater Dayton Area Hospital Association.
Back in Dayton after visiting Lily’s Place, “we started reaching out to the community and they started reaching back,” Kingston said.
In Huntington, the community there responded to the crisis, donating blankets, stuffed animals, and diapers. Individuals and organizations sponsored entire rooms and outfitted the nurseries with cribs, rockers and rugs.
Misty Musser was one of the first volunteers at Lily’s Place, working five days a week sometimes up to 10 hours a day cleaning and painting the interior of the donated former medical building on Seventh Avenue. She helped with one of the initial fund raisers that netted $7,000 in two days. She became the first hired employee. Now a secretary, she says she’d work there for free if they stopped paying her.
“You can come out the other side”
After learning what the infants and their mothers go through at Lily’s Place, Musser, 56, came to the realization her own first child, a daughter, probably suffered from NAS. But 35 years ago a pediatrician diagnosed it as colic, not a potentially more severe condition brought about by her own use of LSD, marijuana, pain pills and alcohol.
“I think it’s helpful that I’m at where I am today and I share that story – not with all of the mothers – but with certain ones, to let them know that there is a light at the end of the tunnel,” said Musser who has been clean 32 years. “You can come out the other side. It doesn’t matter what color you are, how much money you have or anything else.”
Two of her children continue a struggle with drugs and many others she knows don’t understand why Lily’s Place is needed, Musser said.
“It’s like having cancer centers. You don’t want to have to have one, but we have to meet the needs of whatever health issues are current,” she said.
Babies suffering from withdrawal often cry inconsolably and have uncontrollable tremors, feeding difficulties, abdominal cramping and sweating,” said Edmunds, who was one of the chief drivers of Lily’s Place along with Sara Murray, also a neonatal intensive care nurse and the board president.
Edmunds said the infants typically spend a week at the hospital before they can be transferred to Lily’s Place, which is more conducive to a NAS baby’s sensory needs, Edmunds said.
“It’s not that we’re better than the hospital in any way, we’re just different because we have the ability to offer the lower-stimulation environment,” she said. “Mostly what is different at Lily’s Place is our environment. It’s much quieter here. We’re able to control things a little better than in a hospital setting. We can have the private room. The lighting, the noise level is a lot less than at the hospital.”
The nuseries are painted in soft, muted colors: pastels of blues, yellows and browns.
What sets apart Lily’s Place is a dedicated social worker who stays involved with parents and works with the families. Sometimes in hospital settings, caseloads on social workers can get enormous and people are spread thin, Edmunds said.
Lawmakers taking action
Facilities like Lily’s Place and Brigid’s Path may ultimately find it easier to operate wraparound services for babies and their parents due to legislation like the Cradle Act, sponsored and championed by U.S. Rep. Evan Jenkins, R-W.Va., who represents Huntington. Last month, President Barack Obama signed the Senate version, the Protecting Our Infants Act. The legislation received broad bi-partisan support including the sponsorship of both Ohio senators.
Crowder said it costs about $600 a day to care for each baby and it’s been a long process negotiating reimbursements with managed care companies, which now covers about 60 percent of the organization’s costs. The funding gap is filled by individual donors and community foundations and relies on donations for nearly all of the day-to-day supplies needed to take care of the babies. Lily’s Place receives no state nor federal grants.
The center took in its 74th baby last week. Lily’s place has sent 67 “graduates” home, each with a full-size diploma inscribed: “We love you sweet baby. We always consider you part of Lily’s Place family. Wherever you go, whatever you do, our love will follow you.”