The program also works to connect mothers with addiction recovery programs, education, housing, and job opportunities. The program has expanded the follow-up care babies born with NAS receive after they are discharged from hospital.
West Virginia has continued to see a rise in babies born dependent on opioids.
To counter the problem, the West Virginia University Center for Excellence in Disabilities received $1.5 million from the US Department of Health and Human Services to implement services for mothers and babies facing opioid dependence. The money will extend the five-year-old program another three years.
The center works to reduce the number of babies born with neonatal abstinence syndrome (NAS) as well as aiding in the recovery for babies and mothers by connecting families with already existing resources that help in addiction recovery, health services, and social services using a patient navigator.
Program Director D. Lesley Cottrell says the patient navigator comes from the community and can relate to the lived experience of mothers and family members and can connect them with providers and resources in the area.
“They are key to connecting all the different providers across the different settings. If they notice that there’s a need, they can reach out to find a provider that provides that service,” Cottrell said.
The program introduces patient navigators at birth in the hospital.
“The patient navigator model works best when that patient navigator is employed within the birthing hospital for a couple of reasons,” Cottrell said. “So, they’re there at the birth of the infant. They can make those pivotal connections while mom and family are there. It happens before if there is a separation of mom and baby, for any reason. And they can be there to work with mom, and even the foster parent who might come into play.”
The program also works to connect mothers with addiction recovery programs, education, housing, and job opportunities. The program has expanded the follow-up care babies born with NAS receive after they are discharged from hospital.
“We really want to follow up and not just with our child health visits, but in other ways,” Cottrell said. “So, with occupational therapy, if that’s needed- with speech, if that’s needed- With nutrition. This follow-up clinic would bring in an interdisciplinary group of providers to work with the family and continue to connect them to the needs as the baby develops.”
Cottrell also said that the program does not just focus on one baby but stays in contact with mothers in between babies. It also stays in contact with mothers after they have stopped using substances in case of possible relapse.
Cottrell said that the center helps extend time periods in between giving birth again by aiding in family planning for mothers.
The program works with WVU’s Children’s Hospital, Preston Memorial’s Medication Assisted Treatment Program, Court Appointed Special Advocates Incorporated (CASAINC), WVU behavioral medicine, WVU Pediatrics, and the WVU School of Nursing as well as other national, state, and local programs.
Lily’s Place is a stand alone facility in Huntington where infants with neonatal abstinence syndrome, or NAS, can receive specialized treatment.
Lily’s Place is a stand alone facility in Huntington where infants with neonatal abstinence syndrome, or NAS, can receive specialized treatment.
The Huntington center has been awarded $514,150 per year for five years from the Substance Abuse and Mental Health Services Projects (SAMHSA) for a competitive project titled “Promoting Resiliency in Appalachian Families through Comprehensive Residential Treatment Services for Women with Substance Use Disorder that Have Children.”
Lily’s Place Executive Director Rebecca Crowder says with establishing residential services, the facility continues to build upon the original mission of serving infants with NAS by expanding services to the families of these children.
In 2020, the Family Center was opened to provide behavioral health and supportive services to adults. The Children’s Center, providing extended counseling and preventative services to siblings, clients 18 and younger, opened this past April.
“It’s very important to take care of these mamas and their families,” Crowder said. “But we also want to work with the kids at the same time to make sure that we break that generational cycle of addiction.”
Crowder said one of the holistic ways to help prevent NAS in the decades to come is to offer apartment living for women and their children seeking recovery services that will help these families become self-sustainable.
“They will also be able to have the access to the counseling, the case management, the peer support, as well as the Children’s Center will provide those extra behavioral health support to the children,” she said. “Support to help them cope with life situations including navigating the lifestyle of working with their parents during their journey to recovery.”
Crowder said the funding will specifically go to the project of the program that will happen at the residential facility.
“It does sound like a lot of money,” she said. “But it is a cost sharing grant, which means it is only covering a portion of the services we will be providing and the rest we have to cover ourselves.”
Since 2014, Lily’s Place has served more than 350 babies born with Neonatal Abstinence Syndrome. With Huntington having one of the highest opioid addiction rates in the country, organizers found the number of babies born with NAS increasing and knew there had to be a better way to care for them.
They discovered the bright lights, loud beeping equipment and busy atmosphere was the opposite of what babies with NAS need most. Lily’s Place offers private rooms with a quiet atmosphere and dim lighting, which are best for babies with NAS, who are sensitive to light and sound.
The new residential treatment center is expected to begin serving families by the beginning of 2024.
West Virginia lays claim to Lily’s Place, the nation’s first medical center specifically created for infants born from addicted parents. The Huntington facility is now expanding their services to support these growing infants’ siblings and families.
West Virginia lays claim to Lily’s Place, the nation’s first medical center specifically created for infants born from addicted parents. The Huntington facility is now expanding their services to support these growing infants’ siblings and families.
Since 2014, Lily’s Place has served more than 350 babies born with Neonatal Abstinence Syndrome (NAS). With Huntington having one of the highest opioid addiction rates in the country, organizers found the number of babies born with NAS increasing and knew there had to be a better way to care for them.
They discovered the bright lights, loud beeping equipment and busy atmosphere was the opposite of what babies with NAS need most. Lily’s Place offers private rooms with a quiet atmosphere and dim lighting, which are best for babies with NAS, who are sensitive to light and sound.
Executive Director Rebecca Crowder said the new Children’s Center will provide extended counseling and prevention services to siblings, clients 18 and younger, while still supporting the family unit.
”We were getting so many child referrals that we realized that we needed to give them a safe environment of their own,” Crowder said. “A place where they were comfortable to come in and wait for their appointments, and just be around other youth. We offer counseling and case management for the families to help children deal with the social emotional issues they may be having, and self-regulation.”
Crowder said the new Children’s Center expands on the peer support and case management needed to resolve the societal issues today’s kids face.
“During COVID-19, we found a lot of kids were having issues with depression and anxiety,” she said. “With that came concerns about how they had increased suicidal ideation. It’s not just about dealing with the drugs that are already there, it’s helping them deal with the life issues that they’re facing and learning to cope so they don’t turn to drugs in the future.”
U.S. Sen. Shelley Moore Capito, R-W.Va., was at the ribbon cutting. She said the addition to the facility was made possible through securing a $1.6 million Congressionally Directed Spending (CDS) request that included funding for the project.
Capito said Lily’s Place hasn’t just helped hundreds of NAS babies survive, but set a template of medical help being developed in communities nationwide.
“They are saying this works in my neighborhood, this works in my state,” she said. “This works for the great advocates to try to fight a very, very difficult issue.”
Capito said developing the Children’s Center sets a new template, having raised a teenage daughter herself.
“It’s not easy to be a 13-year-old girl, and it’s getting harder with all the social media and everything,” Capito said. “To have all of the disruptions and unbelievable trauma in your life that piles on when somebody is affected with addiction just makes it so much harder. So, to have that ability for them to come in to meet you all, to receive services, both individually or as a whole, or with their parents or with their family is just so incredible.”
Crowder said even with the new Children’s Center, it always comes back to the babies.
“We’re also trying to see a future where we no longer need to care for babies,” Crowder said. “When there are no more babies born prenatally exposed. However, with that you can’t miss the prevention piece and caring for the siblings and the families.”
Click here for more information on Lily’s Place and its services.
Health officials said the rate of babies born dependent on drugs has increased dramatically in West Virginia during the past five years.
In releasing county-level data for about half the state Wednesday, the Department of Health and Human Resources said in a news release that the statewide rate for neonatal abstinence syndrome, or NAS, was 50.6 per 1,000 live births last year.
NAS is a withdrawal syndrome that occurs after prenatal exposure to drugs is discontinued suddenly at birth. Infants with NAS often require longer hospital stays to monitor and treat withdrawal symptoms such as tremors, feeding difficulties, excessive crying, and sensitivity to stimuli.
According to the Centers for Disease Control and Prevention, West Virginia had the nation’s highest rate of babies born dependent on drugs at 33.4 per 1,000 hospital births in 2013, compared with the national average of 5.8.
The state data show Lincoln County had the highest rate last year at 106.6 per 1,000 births. Marshall County was next at 102.1.
Two counties (Pleasants and Pendleton) had no infants with NAS; all other counties had at least one documented case. As more years of data are collected, data will become available for all counties. The NAS data are now posted online at www.dhhr.wv.gov/bph.
“West Virginia is one of a few states that collects NAS surveillance data and is serving as a model for other states across the nation,” Dr. Rahul Gupta, State Health Officer and Commissioner of DHHR’s Bureau for Public Health, said in the release. “By releasing county data, we will be able to understand the impact of NAS at the local level and establish baseline data for program planning and management.”
According to the release, the data, compiled by DHHR’s Bureau for Public Health, Office of Maternal Child and Family Health (OMFCH), with support from West Virginia University’s Department of Pediatrics Birth Score Office, provide insight to both state and county level data for NAS for 27 counties. The remaining county-level data were suppressed because of low occurrence of NAS and the need to protect confidentiality for those infants and their families. This is the first time county level data has been shared with local communities.
A new federal study, called “Federal Action Needed to Address Neonatal Abstinence Syndrome,”recommends educating both health care providers and pregnant women on screening and prenatal care to address drug addiction and withdrawal in newborns.
West Virginia Rep. Evan Jenkins and Sen. Shelley Moore Capito say it’s the first federal study on neonatal abstinence syndrome to examine the best practices and approaches to treating infants exposed to opioids during pregnancy.
The study recommends using nonpharmacologic treatment for infants, or a type of care that does not use medications, for babies who suffer from opioid withdrawal. One suggestion is to allow mothers to spend as much time as possible with their newborn, preferably in a room without bright lights, to calm them.
According to the study, the most frequently cited challenges included the maternal use of multiple drugs—or polysubstance use—as it can exacerbate NAS symptoms.The Government Accountability Office study also recommends addressing the stigma faced by pregnant women who use opioids that keeps them from getting treatment.
She asked to not be identified. And it’s understandable given the stigma attached to addiction. For this story, we’ll call her “Mary.”
Mary lives in eastern Kentucky and has struggled with an addiction that began with painkillers and progressed to heroin.
“As soon as I opened my eyes, I had to get it,” Mary said. “And even when I did get it, then I had to think of the next way that I was going to get.”
Mary was using when she learned she was pregnant with her first child. She sought treatment but the disease had a tight grip on her.
The child was born dependent on opioids and went through the pains of withdrawal shortly after delivery.
“To see that little boy go through that stuff, you’d think that I would, like, change my life around immediately but I didn’t,” Mary said. “I didn’t want to believe it. I was in complete denial that because of my choices, it was my fault that he was going through that.”
Mary sought treatment but relapsed. Then she learned she was going to have a second child.
Startling Statistics
The number of babies born suffering from neonatal abstinence syndrome — the medical term for being born dependent on a drug — is on the rise.
A study published in the Journal of the American Medical Association-Pediatrics found “incidence rates for neonatal abstinence syndrome and maternal opioid use increased nearly 5-fold in the United States between 2000 and 2012,” and appears to be most pronounced in rural areas.
In the Ohio Valley the statistics are startling. Ohio and Kentucky both have rates well above the national average. In West Virginia the most recent data show that for every thousand live births there are fifty drug-affected newborns, the highest such rate in the nation.
Health care workers across the region are responding, finding new ways to treat both babies and mothers.
‘Get Addicted to Motherhood’
Nationwide Children’s Hospital in Columbus treats babies transferred from other hospitals when the symptoms are at their most severe…excessive crying, unable to self-console, unable to eat appropriately, all the way up to seizure activity.
“Based on each symptom and the severity of it, that baby is assessed a number,” Neonatal Intensive Care Unit’s Administrative Clinical Leader Amy Thomas said. “If that number reaches a certain level, then that tells us we have to treat that baby.”
Credit Courtesy Nationwide Children’s Hospital
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Some drug-affected babies are treated here at the Neonatal Intensive Care Unit at Nationwide Children’s Hospital.
The staff has been developing the treatment plan since 2013. This was around the time when staff noticed a correlation between increasing length of stay and drug-affected babies.
Treatment begins with non-pharmacological methods like cuddling and music therapy.
But if the withdrawal cannot be managed, morphine is administered. As the baby shows signs of improvement, the dosage is decreased until they are no longer dependent.
Educating the parents on how to care for the baby through methods like skin-to-skin comforting and breastfeeding is also important. And Thomas said treating mothers and fathers as parents, rather than as addicts, can have an impact on the baby’s life.
“I have that window of opportunity there to get her to fall in love with her baby, get her addicted to motherhood,” Thomas said.
Credit Aaron Payne / Ohio Valley ReSource
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Ohio Valley ReSource
Amy Thomas, R.N., is the NICU administrative clinical leader at Nationwide Children’s Hospital in Columbus, Ohio.
The hospital has seen its admission numbers for drug-affected babies go down as birth hospitals have improved their ability to provide care.
Improved quality of care has also decreased the length of stay for the young patients, which can also help cut costs. The Ohio Mental Health and Addiction Services found in a 2014 study that each drug-dependent newborn can cost the healthcare system $56,000 or more, and most of the patients were on Medicaid.
Lily’s Place in West Virginia
A unique facility in Huntington, West Virginia, aims to reduce the burden on hospitals.
At Lily’s Place, babies are cared for in individual nurseries where the lights are low and noise is kept to a minimum.
“These babies are born very easily overstimulated,” said Rhonda Edmunds, the director of nursing. “We feel a quieter, more homelike environment is the environment that they need.”
Credit Aaron Payne / Ohio Valley ReSource
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Ohio Valley ReSource
Rhonda Edmunds directs nursing at Lily’s Place in Huntington, W.Va.
A staff of registered nurses provides another option of care for drug-affected babies outside of hospitals.
The facility is one of only two of its kind currently operating in the U.S. and it wasn’t easy to get started.
“The state allowed us to be part of a pilot program but all the babies had to be in state custody for that, which was a hinderance to getting babies over here,” Edmunds said. “But we don’t have to do that anymore.”
Since it opened in 2014, Lily’s place has been working to help other facilities get started and get through the red tape.
Credit Aaron Payne / Ohio Valley ReSource
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Ohio Valley ReSource
A nursery where drug-affected babies are treated at Lily’s Place in Huntington, W.Va.
The group published a book in 2015 on how to start a neonatal withdrawal clinic and is updating it to reflect changes in federal regulations that came with the passage of the Comprehensive Addiction Recovery Act last year.
MOMS in Ohio
Treatment for pregnant women, meanwhile, can be difficult to come by in the Ohio Valley. The ReSource analyzed data from the Substance Abuse and Mental Health Services Administration on treatment centers across all three states and found only a quarter of those centers accepts pregnant women.
A group of organizations in Athens County, Ohio, took a collaborative approach in addressing this issue.
“I could see there was some burnout in my providers because these patients had so many other issues, social issues that we didn’t even know how to address,” Practice Manager Pam Born said.
So she reached out to the nearby Health Recovery Services organization in hopes of getting these mothers treatment.
The collaboration was so successful, they looked for other resources.
“As we identified a new problem, we would identify who in the community could meet that problem,” Born said.
Soon they were offering housing, childcare, and other services for the whole family.
Interest from lawmakers led to the creation of the Maternal Opiate Medical Support (MOMS) project. Athens County and three other areas are provided funding to assist the programs in the hopes that others would follow.
Born said collaborations can form in any community and take many forms depending on a community’s unique needs.
In Athens County, Born would like to work toward offering residential treatment for pregnant women and mothers in their program, which is difficult to find throughout the region.
Addiction Recovery Care –with treatment centers throughout mostly rural Kentucky– operates the new facility offering a balance of medical treatment, counseling, and a faith-based element.
“There are no centers doing what we’re doing in this part of Central Appalachia,” CEO Tim Robinson said. “And we felt we had the infrastructure and resources to do it.”
Credit Aaron Payne / Ohio Valley ReSource
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Ohio Valley ReSource
One of the bedrooms for clients who stay at Karen’s Place Maternity Center in Louisa, Ky.
The 16-bed facility at Karen’s Place is a refurbished home in a secluded area, with 24/7 staff support and amenities for both mother and baby.
By focusing on the moms, Robinson said they are investing in the family as a whole.
“We’re not going to have true compassion for the babies until we have true compassion for the moms,” he said.
Mary’s Recovery
Karen’s Place in Louisa is where I met “Mary,” the mother of two whose first child was born drug-dependent. Mary is now in recovery. She was the first woman to come live at Karen’s Place before it was opened to the public in late January.
She sought treatment again after the birth of her first child and was able to get clean for a while. However, she relapsed around the time she found out she was pregnant again.
Mary was determined to give this baby a healthy start. She reached sobriety in October and her second child was born about a month ago with no signs of being affected by opioids.
“It’s been amazing,” she said. “He’s healthy, happy. He’s a calm little guy.”
Living at the maternity center has allowed Mary to focus on her continued recovery, motherhood and her faith. She aspires to further her education and someday help other mothers suffering with addiction.
“I’ve always encouraged people, if they’re still breathing, there’s still hope,” she said.
