PATHways: A Journey of Healing and Hope

It always starts with pain. Sometimes it’s physical pain— the kind that stabs and keeps you awake despite your exhaustion. Sometimes it’s emotional pain— the kind of that is so crushing that you try to drown it out any way you can. Sometimes it’s the pain of a broken spirit. Whatever the cause, opioid addiction is a national crisis and Kentucky is on the front lines. According to the Substance Abuse and Mental Health Services Administration, there were 2.5 million people age 12 and older in the United States meeting the criteria for opioid abuse or dependence in 2014. Opioid addiction affects all populations—it is immune to socioeconomic status, moves quickly and can take over a person’s life within a very short time. It hits women especially hard and can lead to unplanned pregnancies—a potential crisis during which infants can undergo opioid withdrawal as their first experience in this world. In 2000, the Kentucky Injury Prevention Research Center reported 19 cases of neonatal abstinence syndrome (NAS) in the Commonwealth. Babies born with NAS often cry obsessively, sweat profusely and shake uncontrollably while undergoing detoxification in the Neonatal Intensive Care Unit (NICU). This tragic condition has increased at an alarming rate and, in 2014, 1,060 babies in Kentucky were born with NAS— a terrible statistic provoking many to harshly judge their opioiddependent mothers. But each one of us is more than the worst thing we’ve ever done.

When Megan was 18, she got pregnant. She later miscarried and secretly blamed herself for losing the pregnancy. To help with the cramping following her miscarriage, she was prescribed Percocet—an opioid painkiller. She said the mental pain was worse than the physical pain, but the prescription allowed her to feel physically and emotionally “normal,” for a little while at least. The price for those moments of normalcy was astronomical. Megan spent the next 10 years struggling with an addiction that slowly and methodically destroyed her life.

During this time, Megan was in and out of 28-day programs and spent time in jail and prison. However, she was sober when she got pregnant with and gave birth to her first child, who was in and out of her life in the years that followed. She hated herself for using, hated herself for not being a good mother and most everyone she encountered reflected that hatred and condemnation back onto her. When she found herself pregnant again—this time as an active user— she sought an abortion. “I always said I would never bring another child into this world,” she said. “I didn’t want to traumatize another child in their younger years like I had already done to my son.” Still, a doctor talked her into considering adoption and referred her to PATHways (Perinatal Assistance and Treatment Home)— a voluntary comprehensive substance abuse and group prenatal program at the UK Polk-Dalton Clinic established in 2014. Megan called and set up an appointment, though she was still undecided about whether she should terminate the pregnancy.

PATHways addresses the emotional needs of expectant mothers within a group model with peer-support, life skills training and by building trust with women who may have never had someone truly care about them in their lives. Many have staggering histories of childhood trauma—some have witnessed parents being murdered, others are survivors of sexual assault and many of them have parents who suffer from substance use disorders and passed the familial disease to them. PATHways schedules prenatal appointments, empowering them to take an active role in their own pregnancy, participate in group counseling and develop relationships with peers and care providers. The development of PATHways was an unexpected outcome of research toward preventing preterm birth.

UK College of Nursing Associate Professor and Assistant Dean of Research Kristin Ashford, PhD, WHNP-BC, FAAN, who has spent her research career looking for ways to prevent preterm birth, discovered a new trend in group prenatal care that decreased the risk of preterm birth. Dr. Ashford, in collaboration with John O’Brien, MD, division director of the UK Department of Maternal Fetal Medicine within the Department of Obstetrics and Gynecology, was awarded a Health Care Innovation Award grant from the Centers for Medicare & Medicaid Services to research this prenatal group model further— this time matching women by due date and high-risk categories for preterm birth, such as diabetes, psychosocial stressors and tobacco users. She asked Nancy Jennings, BSN, RN, PATHways perinatal recovery facilitator at UK HealthCare® (UKHC), to head the tobacco user group.

Jennings suspected that in addition to tobacco users, there might be a few women with other substance abuse issues like marijuana. “Boy were we wrong!” recalls Jennings. “We ultimately found out we were having a huge opioid crisis in our state and that we couldn’t address this in the traditional group prenatal format because so many other services and support were needed.” Dr. Ashford gave Jennings the ability to modify the original grant into a substance abuse group. They quickly gathered an interdisciplinary team to wrap additional care around these women. Under the leadership of Agatha Critchfield, MD, Maternal Fetal Medicine physician with the Department of Obstetrics and Gynecology at UK HealthCare Women’s Health, the team included a peer-support specialist, social worker, childbirth educator, smoking cessation counselor, psychiatrist, addiction medicine specialist, neonatologist and NICU physician. When needed, women were referred to the Child Advocacy Today (CAT) Service legal clinic. “Once we pulled the team together, we provided prenatal education and tried to focus first on their pregnancies,” says Jennings. “We work really hard to treat them as a pregnant woman first. And then try to manage the other parts of their lives related to their substance abuse disorders.”

The treatment starts as soon as they call in to set up an appointment. Whether they are referred by outlying obstetrician offices, by the ER during active withdrawal or by word of mouth, Linda Berry, BSN, RN, OBRN-lead and PATHways nurse coordinator is the first person expectant mothers talk to when entering the program. “The first thing I do is thank them for having the courage to call,” says Berry. “Many of these women have been turned away from health care for many years. Every place they’ve gone has been punitive; they’ll go to jail or get ‘fired’ from their OB practice for using. Until proven otherwise, my assumption is the majority of these women are actively using. Even if they already have children, they probably have not had quality prenatal care, they’ve most likely never had child birth education, they’ve never had anybody treat them with respect or someone with whom to celebrate their pregnancy.”

As a certified Kentucky peersupport specialist, Sarah Bell is in recovery herself and for four years worked at UK Good Samaritan Hospital, where she observed the ever-increasing need for programs that combined prenatal care with substance abuse recovery. “There were only two or three treatment centers offering recovery for these patients,” says Bell. “Many pregnant women detoxed at the hospital but then were sent back into the world with no place to go—no treatment centers, no medication-assisted treatment. The vast majority would use again, and they would come back and deliver in active addiction, which is really difficult for everyone to see.”

In a similar way that depressed people take antidepressants and diabetics take insulin, opioid abuse disorder patients are now being prescribed a therapeutic dose of opioids to prevent them from going into full blown withdrawal—called medication-assisted treatment (MAT). PATHways has partnered with UKHC physicians who have qualified for special training and certification from the Center for Substance Abuse Treatment to prescribe buprenorphine for mothers who need to make MAT part of their recovery. Many providers are learning that an abstinence-based model is not ideal when it comes to opioiduse disorders. “It’s cruel to make abstinence the expectation,” says Bell. “If you can use medication to keep someone functioning—to keep them alive— it is worth it. Medication-assisted treatment keeps the women coming back and helps us provide a more comfortable environment. Our patients never worry a police officer will show up and arrest them because they are asking for help.” Megan said taking opioids therapeutically was a huge mental hurdle for her to get over. She felt that she couldn’t say she was “sober” since she was taking a substance. It felt like a crutch. But as time went by, she found the medication to be a helpful tool in working toward her recovery.

In addition to MAT, the PATHways team wraps layers of services around their patients to help them take steps on the road to recovery. They address their physical needs with MAT, setting up appointments for dental care and even providing substantial “snacks” at group appointments that are often meals for patients who are sometimes malnourished. PATHways care also provides a new sense of comfort for patients. Jennings describes one woman in the PATHways program who suffered a chronic ear infection for years that had never been properly treated. One night, the pain was so great she called 911 to be taken to the hospital, as her mother wouldn’t take her to the doctor. Years later, after receiving proper care through the PATHways program, she told Jennings, “No one has ever cared about my ear being infected before.”

Opioid-dependent women often find themselves in abusive relationships. “Is there any better victim for domestic violence offenders than someone who is addicted to drugs?” says Karen Bassetti, PATHways social work case manager, UKHC. “Our mothers are often financially and emotionally dependent on the men in their lives. They have a very low sense of self-worth, and we see many of them in domestic violence relationships.” Domestic violence is one of many hurdles PATHways participants often face. Many battle co-diagnosis with mental health conditions like depression or bipolar disorder. They often struggle to find transportation to their appointments—most have between a one- and two-hour commute to get to Lexington and don’t have access to well-maintained cars filled with gas. Many are crushed with shame and guilt for losing custody of other children due to their opioid addiction. Most have family members who don’t understand why they just can’t quit. “Not only do these patients use drugs as their coping mechanism, it’s also a very complex disease that affects both the brain and body,” says Dr. Ashford. “A common feature of opioid-use disorder is losing the ability to control your actions and continuing to use despite knowing the serious consequences.” PATHways supports these women even in their darkest days.

“One of the things I love about this program is that it is uplifting,” says Bassetti. “Even when our moms relapse, we are still there to help her figure out what happened, why she relapsed. We’re there to support our moms through their greatest days— because they really do have great days—and their darkest days. We are there as their solid support system, no matter what.” “I got into some truly uplifting relationships with a few women there: Diana, Sarah, Nancy,” said Megan, who, as the months passed, decided to work toward keeping her baby rather than giving him up for adoption. “I just began to want to live life and do something different. I didn’t want to be alone for the rest of my life. When I was using, even though I was surrounded by people, I was lonely.” Building trust and feeling that unconditional support takes time but is crucial as delivery approaches. PATHways works with women to paint a realistic picture of what to expect at delivery. All PATHways patients know they will receive a visit from the Kentucky Department for Community Based Services after delivery and there is a possibility their baby will be placed in foster care. Mothers on MAT will have babies that may go through withdrawal after delivery though the severity is unknown; the medication is metabolized differently in every patient and even twins have different substance levels in postbirth tests. PATHways works to empower mothers with tools both to decrease the chances of treatable withdrawal as well as to comfort their babies if they are treated for withdrawal—all while dealing with their own physical and emotional fallout after delivery.

Mothers are given education on infant massage, kangaroo care and breastfeeding in groups. Lori Shook, MD, professor of pediatrics at UK College of Medicine and neonatologist at Kentucky Children’s Hospital (KCH), also meets one on one with each mother to discuss what they can expect in their specific case. “When I meet with the moms before they deliver, I always tell them their babies will love them. They know their mother’s sound when they come out. They know their smell. They know their heartbeat. And the moms are who the babies want to be with,” says Dr. Shook. In 2011, Dr. Shook was part of a team at UKHC that developed a new NAS protocol that brought NAS infant NICU stays down from 29 days to 23 days. The new protocol is also for infants with neonatal opioid withdrawal syndrome, an opioid specific subset of NAS. For PATHways program participants who are able to provide parent care, the average length of stay for their babies is 5.8 days. “It’s really incredible. I think the most important thing that I’ve learned is that the presence of the mother is key to the baby’s health,” says Dr. Shook.

“We don’t see them!” says Lisa McGee, MSN, RN, neonatal clinical nurse specialist at KCH who works with nurses who have cared for an ever-increasing number of babies suffering with NAS. “PATHways babies are often born and, rather than coming to NICU, both mom and baby are put on the acute pediatric floor, where mom is able to stay in the baby’s room.” “This time together allows the new mother to comfort, feed and care for her baby in a calm and quiet space,” says Gwen Moreland, DNP, RN, NEBC, assistant chief nurse executive at KCH. “The goal is really to give the mother/baby couplet the best chance for a healthy start.”

Leading up to delivery, Megan says she was fearful of her baby going through withdrawal and how she would respond to it. “I was afraid of the guilt and shame. I didn’t know if I was mentally prepared for it when I went into labor. I was sober minded—my mind and my thoughts were clear— but I worried about the guilt.” Her daughter was born after a textbook labor and delivery. Both she and her baby’s father took turns holding their son skin-toskin to help soothe him through his mild withdrawal. When the baby wouldn’t latch, Megan faithfully pumped breast milk until her baby learned to latch on. And even when they had to leave the hospital before their baby was discharged, Megan and her partner tag teamed so they were with their baby around the clock until he was discharged five days after delivery. “It made me feel like I had a purpose, which was to make her feel OK,” says Megan of the time she spent in the hospital with her daughter. “I was really, really worried how people would judge me, and how they would look at me while being on medicine and being pregnant. I never once felt that there. If anything, I felt more support. I never felt judged.” Even in the best of circumstances, the “happily ever after” doesn’t start simply because mothers are allowed to take their babies home. Recovery for them is a life-long process, and there are many stressors following delivery that threaten a new mother’s sobriety. In addition to the hormone fluctuation and lack of sleep that new mother’s face, addiction recovery moms often have to find a new doctor to prescribe their therapeutic medications, they have to find a pediatrician for their baby, and, if they have custody of their baby, they are often worried that fighting with their parents or their baby’s father could be perceived as putting their child in jeopardy.

“Postpartum is a horrible time for relapse because of the psychosocial problems that can occur for these moms who had done so well for four to six months while in the program,” says Keisa FallinBennett, MD, MPH, UK Family and Community Medicine. She, along with Michael Kindred, MD, an addiction medicine specialist at UKHC, joined the PATHways team in 2016 to provide much needed postpartum comprehensive medical and substance abuse care. With Drs. Fallin-Bennett and Kindred now part of the team, PATHways is able to extend the lifespan of the program in an effort to prevent postpartum relapse. “There is a history of being reactive with this population,” says Bell. “Being proactive has never been on the radar. For PATHways to add that element is really critical, and it’s making a difference.” Going forward, Drs. Critchfield and Ashford hope to take the lessons learned from the brave women enrolled in PATHways and standardize a treatment program that can easily be expanded to other clinics. “We want to make treatment more geographically accessibly in both Lexington and other established health care locations in eastern Kentucky, which will allow us to reach more mothers and babies,” says Dr. Critchfield.

One night recently, Megan ran to the grocery for 20 minutes while her mother watched her infant daughter. She felt that awful, disconnected feeling when you leave your new baby for the first time—the feeling was terrible yet shocked her with joy. “I’ve never had these motherly instincts,” says Megan. “PATHways has brought incredible beauty to my life. I never wanted a family or to be clean. Now, I can get up and not have to go look for drugs. I can take care of my kids. My family trusts me again.” Megan said PATHways offered her a chance when no one else would, and she owes everything to the unconditional care and support of the PATHways team and to God. It’s changed her mind about who she is as a person and what she wants for her future. She’s proud that since starting the PATHways program, she has successfully stayed sober, which only adds to her confidence. “I am someone who deserves as much as the next person,” says Megan. “I’m a daughter, sister, girlfriend, friend and, most importantly, I am a mother of two very healthy, beautiful and fullof-life children. With that, I am going back to college to be a social worker. I want to dedicate my life to something I feel very strongly about and be a part of something as beautiful as PATHways. Hopefully one day I’ll give as much as they have given me.”