If you ask state departments, “Are there standards of care that allfacilities treating opioid-dependent pregnant women have to follow?” The short answer is, “No, there are not exact protocols on how to do that,” said Dr. Connie White, deputy commissioner for the Kentucky Department of Public Health.
“Like anyone that you treat with a substance use disorder, it’s very individualized.”
Part of the challenge with having exact protocols for pregnant and parenting women is that women in this stage of life have unique needs that are often complex.
“The challenges have more to do with barriers to care, such as access to those services – including where treatment facilities are located or are not located – as well as other factors related to the population, such as childcare and transportation,” said Janine Breyel, director of the substance use and pregnancy initiatives through the West Virginia Perinatal Partnership.
“In terms of the care itself, it’s fairly straightforward to get a woman on either methadone or buprenorphine, and then manage her prescription, her medication, throughout her pregnancy,” said Breyel.
The current federal standards for caring for opioid-dependent pregnant women call for using medication-assisted treatment as the standard of care. Yet many providers balk at prescribing the medication used to treat opioid use disorders to pregnant women.
“The medical community is sometimes a little frightened of pregnant women and the behavioral health community is no different,” said White. “You’re taking care of two patients at the same time instead of one, and so people have to have certain services in place in order to assist these women. So we are slowly but surely increasing that capacity across our state.”
White said Kentucky has about 17 treatment facilities that will accept pregnant women who are opioid dependent and are working with other facilities to expand beds for that population.
But 17 facilities sprinkled through120 counties in Kentucky means that not many localities offer services to opioid-dependent pregnant women. So some obstetricians and general practitioners have started offering medication-assisted treatment to their patients. But even that requires extra education and support.
“As a retired physician, I can say that sometimes the stigmatization is not out in the community as much as it can be in the medical and the healthcare system,” said White. “So trying to educate people [on] the importance of understanding that this is a chronic relapsing disease and that it is our role to help these women do as much harm reduction as possible and teach them parenting skills that many of them didn’t even experience as children – because traumatic childhood is a common theme among people who are suffering from substance use disorder.”
Meanwhile Virginia, which hasn’t been hit quite as hard by the opioid epidemic as West Virginia and Kentucky, recently began working on services for pregnant women and families impacted by opioid use. The Virginia Department of Health said they’ve had three meetings with over 100 stakeholders, partners and families and are hoping to develop a statewide network so they know what resources they have, who offers them, and where to refer women who need them.
“Essentially we want no wrong door so no matter what door they come in, if this is identified as a need for the family, that it seamless and can happen,” explained Shannon Pursell, Maternal and Infant Health Coordinator for the Virginia Department of Health. “So adequate screening, then diagnosis, referrals, treatment, etc.”
Both Kentucky and West Virginia have their own version of this network. But growing it so there are adequate resources available for those who need them is an ongoing challenge.
This story is part of a project called “Born Exposed.” It’s a collaboration between WVPB, 100 Days in Appalachia and the Ohio Valley ReSource.
Appalachia Health News is a project of West Virginia Public Broadcasting, with support from Marshall Health and Charleston Area Medical Center.
A Charleston-based law firm has filed a class action suit against 21 medical companies, including the opioid manufacturer Purdue Pharma to sue for damages incurred by prenatal exposure to opioids
The suit was filed this week by the firm Thompson and Barney. Kevin Thompson said the intent is to create a fund for babies born with neonatal abstinence syndrome, meaning infants born dependent to opioids.
“In this case the equitable relief would be a medical monitoring fund,” Thompson said.
Thompson said a medical monitoring fund would allow for children to be tested for possible neurological, developmental and behavioral disorders and would fund treatment should it be needed. Rather than placing the burden on families and insurance companies, he said, manufacturers and distributors need to foot the bill.
“From a nationwide basis they have some statutory duties to watch the market and see when there is unusual activity going on,” Thompson said. “The million and millions and millions of pills that went into tiny Kermit and Williamson – the distributers should have stopped it, they should have investigated it, they shouldn’t have just smiled and sent more pills and made money.”
The suit would also create a damages fund that would be released to the children when they turned 18. That money could be used for education, transportation or further medical care as needed.
Appalachia Health News is a project of West Virginia Public Broadcasting, with support from the Marshall Health, Charleston Area Medical Center and WVU Medicine.
West Virginia will be the first state in the nation to allow Medicaid to fund treatment for newborns exposed to opioids in the womb.
When their exposure to opioids ends at birth, infants with Neonatal Abstinence Syndrome experience withdrawal symptoms. They include tremors, vomiting, seizures, excessive crying and sensitivity to loud noises, lights and colors. Infants are weaned from opioid dependence by using small doses of morphine or methadone.
Lily’s Place in Huntington will be the first Neonatal Abstinence Syndrome Treatment Center. While Lily’s Place already offers such treatment, the new designation will permit eligible families to use Medicaid. The federal Centers for Medicare and Medicaid Services gave the state Department of Health and Human Services approval late last week.
Appalachia Health News is a project of West Virginia Public Broadcasting, with support from the Marshall Health, Charleston Area Medical Center and WVU Medicine.
U.S. Congressman Evan Jenkins visited Thomas Memorial Hospital in South Charleston today to hold a roundtable with local experts about how best to address addiction and neonatal abstinence syndrome.
The roundtable was attended by about 20 health workers and community members, most of whom deal with addiction, including neonatal abstinence syndrome on an almost daily basis.
“The disease, yes disease of addiction is our most challenging public health and safety issue of our time,” Jenkins said during an opening statement.
Jenkins said roundtables like this one help him identify the most pressing needs and challenges facing people who are actively dealing with the crisis.
“All of us see some patients with opioid addiction,” said obstetrician Bassam Shamma during the meeting.
“I mean it’s definitely getting worse, hepatitis C is getting really bad in this state,” he said. “I mean we’re screening everybody, all the OBs are screening everybody and we have new diagnosis on an almost monthly basis.”
Shamma said one thing that hospitals and doctors need is better reimbursements so they can take care of the patients that need medication assisted treatment and other resources that can be expensive to provide.
But it’s not just hospitals and doctors that are struggling.
Monica Mason is the Director of Community Paramedic for the Kanawha County Ambulance Authority. She said now, 75 percent of their medication budget, or around 60,000, goes to buying the overdose reversal drug Narcan.
She said the issue is not just the financial burden, but that sometimes it can be hard to actually access a big enough supply for the demand.
After the roundtable Jenkins told reporters he’s committed to developing health policy that will take concerns brought by Mason and Shamma into account.
Appalachia Health News is a project of West Virginia Public Broadcasting, with support from the Benedum Foundation, Charleston Area Medical Center and WVU Medicine.
A young mom – we’ll call her Patient A – is sitting on a couch holding her infant son at Karen’s Place, the newest in-patient treatment program for pregnant women in Louisa, Kentucky.
She smiles down at the healthy infant in her arms, then begins to talk about her older son – now 2½.
“He was actually born addicted,” she said.
“I could not, I could not quit when I was pregnant with him, as much as I wanted to, as much my mind told me every single day that I could,” she said.
“I was just under the grips of this disease, and there was no way I could. And he had to stay in the hospital for almost three months. He’s happy and healthy now.”
If someone addicted to opioids wants to overcome that addiction, there are generally two approaches to initial treatment: (1) medically supervised “cold-turkey,” so to speak; (2) or medication-assisted tapering. The latter involves getting the patient off their drug of choice and into a methadone or Suboxone program, which allows them to avoid the worst of the withdrawal symptoms while their dose is lessened over time.
But things get a little tricky when it’s a pregnant woman who is seeking treatment.
Detoxing While Pregnant
“When patients undergo detoxification or complete withdrawal – even just a supervised withdrawal – the risk, probably the greatest risk, the most common risk, is that of relapse,” said Maria Mascola, a nationally recognized high-risk obstetrician based in Wisconsin. And relapse carries a higher risk of overdose.
“The balance of the evidence strongly supports the opioid-assisted treatment during pregnancy for the stability it offers,” Mascola said.
But if a woman participates in an opioid replacement therapy program while pregnant, even though she isn’t “using” illegally anymore, her baby will likely be born with symptoms of Neonatal Abstinence Syndrome. This means the babies will go through withdrawal.
And “we know it is better for babies to be born drug free,” according to Kim Miller – director of corporate development for Prestera Center in Huntington. Prestera runs both an in-patient and out-patient treatment program for addicted mothers and pregnant women.
“So even if a pregnant mom was addicted to drugs and had the disease of addiction earlier on in the pregnancy, if she can deliver a drug-free baby, she saves the baby from medical interventions,” Miller said. “She saves herself and she saves society – it’s expensive to put babies in neonatal intensive care units, especially for a problem that is preventable.”
The national average hospital charge for a baby being treated for Neonatal Abstinence Syndrome is about $93,000, according to the Centers for Disease Control and Prevention. The average cost of a woman going through Prestera’s in-patient treatment program? About $14,600 for an average stay of about 6 months.
But getting women off drugs before the birth of their child isn’t always easy – or advisable.
Cabell-Huntington Hospital
David Chaffin is a high-risk obstetrician in Huntington who runs a maternal addiction recovery center.
Chaffin said for women “appropriately” willing and ready – that is, highly self-motivated – tapering doses can allow a mother to be off drugs completely by the time her child is born.
“This is not a in-patient 72-hour detox program,” he said. “That stress – that is, just going cold turkey – problem does carry some fetal risk, but the slower detoxification programs are safe to use.”
He emphasized that in his opinion, requiring detox through a court order or obstetrician encouragement is dangerous, because if the mom isn’t invested in her own recovery, the risk of relapse is really high.
“If 70 percent are relapsing, that means rather than being in a stable program they are using drugs off the street, with all the attendant infection risks, the attendant risk of overdose,” he said.
To prevent relapse, not only do mothers need to be ready to get clean, but centers like Prestera and Karen's Place that include long-term intensive counseling and support services are vital for success. – David Chaffin
Appalachia has been hit hard by the opioid crisis. At Cabell-Huntington Hospital where Chaffin works, 140 out of 1,000 births are babies with Neonatal Abstinence Syndrome. Nationwide the number is about 6 per 1,000 births.
So centers are coming up with a variety of ways to treat these patients. One doing things a little bit differently is Crosswinds outside Lewisburg.
Crosswinds
“Mostly in the first trimester we’re looking to detox completely off…with detox we’re going to zero,” Crosswinds medical director Dr. Noel Jewell said. “So when they leave, they’re not on any other medications other than prenatal vitamins or any other medications their OB would like them on.”
Jewell does use buprenorphine to ease the symptoms of withdrawal. But unlike Chaffin’s center, where a detox tapering can take 10 to 12 weeks, Jewell’s center does it in 5 to 7 days. Then the patients are monitored for a minimum of 72 hours (with an average total stay of 10 to 15 days) and released back to the care of an obstetrician.
“I will admit that our first priority is trying to have a baby delivered without Neonatal Abstinence Syndrome…but after that, they’re scattered across the state. We’re trying to collect some data now to see if they followed up with someone. Did they go back on methadone or Suboxone?”
As far as Jewell can determine, his center has been successful in reducing the number of addicted newborns – at least on the local level, where his group has strong OB-GYN support.
However, he said relapse is definitely a concern. Detox is only the first part, then ideally comes counseling, but this isn’t always readily available.
In 2012, the American College of Obstetricians and Gynecologists (ACOG) came out with a committee opinion on opioid abuse, dependence and addiction in pregnancy. Their conclusion? Opioid maintenance therapy is the best practice.
Jewell acknowledges that Crosswinds treatment protocols differ from what ACOG recommends. But, he said, there isn’t a lot of definite data one way or another. For one thing, some of the studies ACOG referenced in their 2012 recommendations lack currency, dating back to the 1980s.
Maria Mascola – the obstetrician in Wisconsin – is part of the current ACOG committee reviewing the 2012 guidelines to see if they need to be updated. For her, opioid replacement therapy for the entirety of the pregnancy is still the best practice. But she added that she hopes practitioners of alternative approaches, like Chaffin and Jewell, will publish their findings. Because this problem isn’t going away anytime soon, and more research and data help everyone determine what works well and what doesn’t.
Editor’s note:This story and its headline have been updated to include more accurate language and characterization of pregnant mothers who are in treatment for drug addiction.
Appalachia Health News is a project of West Virginia Public Broadcasting, with support from the Benedum Foundation, Charleston Area Medical Center and WVU Medicine.
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.
