BABY STEPS Heal the child, save the mother: Two centers of hope open for opioid-exposed babies

She's only been in the world two weeks, but Laynee Conway already has a whole team supporting her.

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Her mom, Nicole Conway, has been down this road before. This time, it’s easier because of the love and support she and her daughter are getting.

Nicole was never “into the heroin scene” in Huntington, West Virginia, she says, but she was using opioids when her twin girls were born five years ago. Watching them go through a painful, month-long methadone withdrawal process in the hospital was more than enough to push her to end her addiction. But she still spent two years of bouncing back and forth between recovery and relapse before truly finding her footing. At one point, she even gave up her daughters, placing them with a family member while she got help.

“I was in no shape to take care of them. I knew this. I knew I had to get myself help,” Nicole says. “They deserved better than what I could give them at the time. And I worked my butt off to get them back.”

She eventually found programs that work for her, a kind man who loves her and her girls, and medical help to ease off drugs under doctors' care. She and her partner even talked about having more kids — once she was completely off the prescription maintenance drugs.

“But it didn’t work out that way for us.”

Nicole became pregnant with Laynee before completing her programs. “I did the next best thing,” she says.

The next generation of the opioid crisis is already here, and they are helpless.

Laynee has been at Lily’s Place for a week. It’s one of only two specialized clinics in the United States for treating opioid-exposed newborns. These centers are becoming a rallying point for families and communities to give these babies and their moms the help they need: a judgement-free safe haven where they can get well.

A safe space, for mother and child

The first foster baby handed to Jill Kingston was a preemie, weighing in around 3-and-a-half pounds. When he wouldn’t stop screaming under bright lights and no amount of snuggling could soothe him, the mother of three knew something wasn’t right.

In addition to being out in the world a bit too early, the infant was also in opioid withdrawal — so were the next two babies Jill fostered.

After three biological kids, Jill and Nick Kingston had the usual baby-soothing moves down. But "normal" baby moves don't work with infants in withdrawal. Bouncing and back-patting make them more uncomfortable. Babies suffering from neonatal abstinence syndrome (NAS) have a lot of sensory issues, especially with sound, so even a little lullaby can be too much. Feedings need to come in smaller amounts, and the babies often vomit up most of what they eat, anyway.

These challenges weren’t covered in the 40 hours of training the Kingstons went through to become foster parents in suburban Dayton, Ohio. “There was no topic on neonatal abstinence syndrome or anything about kids withdrawing,” Nick said. They knew they needed help.

The Kingstons were more or less on their own, with most of their help coming from "Dr. Google." But sometimes, if you search and pray, you find what you need. That's how Jill found Lily's Place in Huntington, West Virginia. It was about to open its doors as the first independent NAS clinic in the United States.

In most hospitals, babies exposed to opioids in utero typically end up in the neonatal intensive care unit (NICU). NICUs are for critically ill infants, though, and the bright lights and beeping monitors are stressful for babies with NAS. At Lily's Place, the lights are low, and the hallways are silent. Every baby gets their own room, and parents can visit as much as they want, learning to care for their babies with therapeutic handling, tight swaddling and more. There's even a "rooming-in" room, where one parent can spend the night alone together with the baby. Nurses are right on the other side of the door, providing a low-pressure way to ease into being home alone with a newborn, especially when the baby may still be suffering some withdrawal symptoms.

The parents get help at Lily's Place, too. Social worker Angela Davis connects moms with recovery programs, grandparents with support groups, parents with jobs, families with housing options and more. Angela regularly texts moms to remind them they are loved. It all helps keep the families together and promotes bonding with the new babies.

“If I don’t get the mother healthy and get the household healthy, a healthy baby in an unhealthy household is not a good fit,” Angela says. Helping the entire family out of the darkness of addiction also helps break the cycle of generational drug abuse. It’s one step farther down the road of lifting up that family and the entire community.

Called to do more

Having one drug-exposed foster baby after another come to her in pain from the hospital was heartbreaking, Jill says. Even worse was seeing families torn apart to help the infants get well and into safe homes, not always with their mothers.

Jill had felt called to become a foster parent. Now, after seeing Lily’s Place, Jill felt called to do something more.

“This whole thing has been faith-based,” Jill says, “being called and led to keep going.”

Jill began building Brigid’s Path in Kettering, Ohio, to help hold families together by caring for babies and helping parents cope with substance abuse. Brigid Path’s doors opened in November.

Babies going through medical withdrawal in Ohio hospitals usually stay there for 18 to 20 days. Now NAS babies in the Dayton area have the option of individualized treatment at Brigid’s Path as soon as they are medically stable. Parents do not lose custody of their children while they are in the hospital and do not have to give up custody if they choose to come to Brigid’s Path.

That was a big goal for the center: keeping families together. Many NAS newborns wind up wards of the state because of their parents' addiction struggles.

At Lily’s Place, parents also keep custody of their babies. Each child gets its own nursery, tailored to exactly what’s needed at any time – a far less stressful environment than in the local hospital’s specialized Neonatal Therapeutic Unit, where babies are often three or four to a room. Nurse-to-patient ratios at Lily’s Place are very low by design, too.

Nicole spends hours with Laynee at Lily’s Place every day, in between handling her twins at home and her own recovery process. “She’s done better over here than she did at the hospital,” Nicole says. “I’m not knocking the hospital, because they’re wonderful over there, too. The whole environment over here is different.”

In the quiet, with her own room, Laynee has “progressed amazingly,” Nicole says, “like she’s running a race.”

That's the kind of story that led mental health counselor Kim Kleinhans from working in public services to being the family advocacy director at Brigid's Path. "I think we're all kind of just hurt little boys and girls inside, in different ways. And I know people can grow and learn and change, and that's hopeful for me," she says. "If I can be an agent for that and support somebody in that, that's hopeful."

Read more about Kim: How hope spreads, even in the center of the opioid crisis

Her hope ripples through the Brigid's Path family of staff and volunteers. Lifting the sadness of women who bring their babies to Brigid's Path is a hopeful prospect, not a burden, says Cindy Henderson, nursing manager at Brigid's Path.

Cindy came to the NAS clinic after a nursing and administration career in hospice and end-of-life care. It was a privilege to be with the dying and now it will be a privilege to be beside a new mom and a new life, helping both onto a meaningful and clear path to the future, she says.

“You have to be comfortable with life from birth to death. I have my faith that keeps me comfortable with all of that,” she said. Cindy counts on her faith and experience to buoy the staff and volunteers, too.

“When I was a nurse manager and clinical director for hospice, my nurses kind of became my patients,” she says. “So here as the nurse manager, I’m going to be supportive to my nurses and the volunteers here who need that encouragement to go on and kind of debrief after a difficult situation.”

While it won’t be an easy place, Cindy says, Brigid’s Path “will be a joyful place.”

Read more about Cindy: She’s got faith to heal those sick in soul when opioid babies wail

A struggle – and a stigma

Lily’s Place has helped more than 200 babies and new moms caught in the quicksand of opioid addiction since 2014. And they do it free of charge in a town at the epicenter of the national opioid crisis.

Huntington, West Virginia, was once defined by prosperity, progress and the American railroad industry. Now the town may be best known for a 53-hour period in August 2016 that headlined the nation’s rolling catastrophe of addiction.

Cabell-Huntington Hospital's emergency room saw 14 overdoses in five hours, 20 for one entire day. Six cases required more than one dose of the opioid antidote naloxone, a sign that an extremely potent opioid was at work. The event made national headlines and sparked public health and safety investigations by the CDC.

Media types who parachute in to tell tales of heroin and hand-wringing are no surprise to locals anymore. But stick around and get to know some people, and you’ll hear their adamant determination: “There’s more to Huntington than heroin.”

The people of Huntington are working to pull their river town back from that brink, opening businesses downtown and in Pullman Square, donating to local causes, praying with strangers in the McDonald’s parking lot or just going about their lives. They refuse to surrender their town to drug dealers and addicts. But sometimes that dogged determination can backfire on those who need help the most.

Even when you're pointed in the right direction, the road back from addiction is long and difficult. While most people in Huntington are only two or three degrees of separation from overdose and addiction, those who struggle with addiction themselves also bear judgment from an entire community. That stigma lands doubly on pregnant women.

ExploreClick here for more on the special series -- Baby Steps: The littlest victims of the opioid crisis

A woman may be able to keep her addiction a secret from family and friends. She can even make excuses for why her baby had to stay in the hospital. But if she brings her baby to Lily’s Place, everyone knows why.

Nicole was working hard to get clean while pregnant with Laynee. She was under a doctor’s care, taking legally prescribed drugs to wean her off opioids. Yet she knew Laynee was still going to go through withdrawal after she was born. And people were still going to judge.

“People don’t understand. They’re not educated. That is what a lot of people lack. It’s not that they’re all mean about it, they just don’t know,” Nicole says. “Everybody’s got questions … they assume things because of my past.”

Judgment from family, friends and even total strangers can deal just as much hurt as the drugs themselves, says social worker Angela. “We have to get past the stigma of hating the moms.” Angela spends her days caring for the mothers of Lily’s Place, filling out WIC paperwork, tracking down housing and helping parents find jobs.

“Women don’t plan on getting pregnant addicted to drugs,” Angela says. Mothers like Nicole are choosing life over abortion and asking for help over pride, she points out, all for the love of their children.

Read more about Angela: One woman fights for opioid moms with all the love she’s got

“They love their babies more than they love anything in this world,” she says. “And nobody knows how much they love their babies. That’s what people don’t get. Nobody gets it.”

Nicole knows her struggle hasn’t ended. “I’ve got three wonderful children that keep me motivated every day and a loving partner that has my back,” she says. “I’ve also had two loving children and a great support system as a family and still fell right back into it.”

There is no shame in asking for help, though Nicole says it took years to accept that truth herself. Struggling or even relapsing isn’t failure, she says, but not asking for help is.

The price of spreading hope

Getting drug-exposed babies and their families healthy aren’t the only challenges places like Lily’s Place and Brigid’s Path have ahead of them.

The country's only two private NAS centers may be located in statistical hot spots, but the opioid crisis and babies like these aren't unique to West Virginia or Ohio. Lily's Place has built a model for NAS newborn care that can be copied elsewhere, and Executive Director Rebecca Crowder is ready to spread the word.

Rebecca has a replication plan to guide other organizations in building their own NAS care centers. It’s a series of guidebooks on how to open a center, starting with getting a 501(c)3 non-profit up and running, how to put together a board of directors and more, down to day-to-day operation and job descriptions. So far, Rebecca says she’s fielded early interest from California, Arizona, Alabama and other states.

One of the few things not included in the replication plan, however, is the financial piece of the puzzle. Funding varies from state to state. “It’s going to be different for everyone,” she says.

Jill Kingston took concepts and practices from Lily’s Place to build Brigid’s Path over a three-year period. Yet even with the doors open, funding remains a major challenge. Her suburban Dayton NAS clinic is licensed to care for up to 24 babies at a time but can only afford to take on four babies, Jill says. “That’s all we have the funding for right now.”

“It totally depends on donations,” Jill says. The money coming in determines how many babies Brigid’s Path can help. “We’re going to have to be turning away families because we don’t have the funding.”

Why the need for NAS centers? For drug-exposed infants, intensive care is too intense

The goal through the end of 2017 is to raise another $130,000. “Then we’ll be able to open another pod for four more cribs.”

Babies stay at Brigid’s Path as long as they need to. Follow-ups and support for mothers are promised essentially indefinitely. It all comes at no cost to the families, but the money has to come from somewhere.

For now, it comes from Dayton and the surrounding communities of southwest Ohio, which poured more than $3 million into Brigid’s Path just to get the doors open. Mountains of donations, from diapers to hand-crocheted blankets to formula, keep daily operations going.

It’s a precarious solution. To make it a sustainable one, state regulations and federal law have to change.

A state-sponsored solution in danger of falling short

One of the funding hangups literally requires an act of Congress to fix it. As the problem of NAS and the solution of NAS clinics are both relatively new, there is no mention of these facilities in current law and no Medicaid code to provide a way to pay the facilities, even once they are licensed.

The Caring Recovery for Infants and Babies (CRIB) Act would recognize residential pediatric recovery facilities like Lily's Place and Brigid's Path as providers under Medicaid, allowing them to bill Medicaid for the services they offer. The bipartisan bill doesn't cost additional money, but it allows babies to receive quality care in the best setting, according to co-sponsor Sen. Sherrod Brown's (D-Ohio) office. The bill has been waiting for a Senate financial committee to take action since May.

The state of Ohio could grant a Medicaid waiver in the meantime, but that solution is tangled in bureaucracy, too.

“There are people who have common sense and the belief and have been helping us,” Jill says, but even with lawyers, lobbyists and some lawmakers on their side, the wheels of government turn incredibly slowly.

While the federal spending aimed specifically at stopping the opioid crisis is increasing, those funds go to adult programs for addiction and mental health. Drug-exposed infants are not considered addicts and therefore are not eligible for programs getting that money. The distinction might sound small, but when it comes to money, it’s huge.

“Our babies are not addicted,” Jill says. “Our babies do not have a mental health diagnosis. We do not qualify for any of that money. It’s so frustrating.”

Montgomery County, Ohio, where Brigid’s Path is located, has seen a 38-percent increase in NAS births since 2012. The average hospital stay for drug-exposed babies there is 21 days at a cost of more than $90,000 per stay. In 2014, the state spent more than $19.5 million helping NAS babies, 96 percent of which were Medicaid eligible.

Jill says the specialized care at Brigid’s Path drastically shortens an infant’s time in treatment and brings costs down to about $10,000 to $15,000 per child. Her clinic’s services to the families and unlimited follow-ups also mean better long-term outcomes, despite the much lower cost. The Ohio state budget included $500,000 in a community subsidy fund grant for Brigid’s Path to provide care as a pilot program, but even that money is being held up by bureaucracy.

Lily’s Place, on the other hand, enjoyed a great deal of support from the state government to get up and running, Rebecca says. West Virginia granted temporary, partial funding at first, but the success of the pilot program spurred lawmakers to draft rules and regulations for NAS centers from scratch.

Without the CRIB Act or other federal changes to make NAS centers eligible to receive Medicaid funds, it’s been up to the state of West Virginia and the local community to keep funds flowing. As Lily’s Place grows, licensing has shifted, and payment options have evolved, Rebecca says, giving the clinic the ability to draw up contracts with health insurance companies.

“We are able to bill for the babies being here through the managed care companies,” she says. “But our reimbursements are coming back to where we have about 60 percent of our budget covered through billing, and the other 40 percent has to come from fundraising and grant writing. So this is a challenge.”

Those deals are also exclusive to the state and its residents, leaving Lily’s Place only able to accept babies born to West Virginia residents. Ohio is right across the river, though, and as many as half the children born at Cabell-Huntington Hospital are children of Ohio residents. Lily’s Place must turn those babies away.

“A lot of times, we are the best option for that child and that family. And it’s heartbreaking to know that we can’t serve them because of money,” Rebecca says. “We have to tell them we’re sorry, but we can’t accept them because they’re not from West Virginia. We have no type of reimbursement for that.”

“This is a problem that probably a lot of states are facing, and that is why there have not been more facilities like ours opening.”

A network of support

While state and federal governments sort out funding, Lily’s Place and Brigid’s Path push forward. Both NAS clinics run as much on faith, hope, love and donations from their communities — which feel more like families than neighbors — as they do on funding.

This kind of help can’t be put on hold for bureaucracy.

“People still throw things my way. But I’ve got a good support system,” Nicole says on a visit to Laynee. “Her dad is an amazing, amazing man.” And even once Laynee comes home, the Lily’s Place staff is just a phone call away for help with anything.

“It’s a relief,” she says. The day will come, when she will tell all her girls how they got their start in the world and about her experiences. Once they get to a certain age, she says, “it’s important that they know that mom struggled too. And if they needed anything, they can always come to me.”

Even before the doors were officially opened, Brigid’s Path was sending out waves of hope into the community, energizing the conversation about what could be done here at home about the growing national drug problem. Conversations that started as fundraising talks have already spread awareness about the stigma that comes with addiction, Nick Kingston says.

The Kingston family is pretty inspirational itself: A family’s love shelters opioid-exposed babies — with room for moms, too

“People are a lot more aware today about the epidemic — specifically around newborns — than they were two years ago, just because of the exposure Brigid’s Path has had.”

Does that feel like real, tangible progress?

He shrugs, with a smile. “Baby steps,” he says.

About this story

Rare Heartland Editor Gayle S. Putrich and Video Producer Allie Caren traveled to Ohio and West Virginia to visit the only two neonatal abstinence syndrome clinics in the United States. They listened to those whose lives have been affected by the nationwide opioid epidemic and learned how families and communities are coming together to aid the most helpless victims of the crisis.

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