Advocates For The Voiceless
A West Virginia community comes together to begin the long journey of healing for newborns suffering from drug withdrawal.
by Kendyll Van Zandt, Kiabeth Santos, and Joseph Salerno, M.S.
Life is a crazy journey. You never know where you’re going to end up, but you do your best to walk the right path and get yourself to a good place in life. You struggle. You lose, you win. You try to stay engaged and have a positive effect on your own outcome, to be present in your own journey. You do what you can.
It’s the beginning of our life that is the tricky part. That’s the part we have no control over. For some, that is unfortunately the worst part of all.
Just west of Charleston, West Virginia, on the south bank of the Ohio River, you’ll find a town called Huntington. There’s a place there where good people are trying to undo bad beginnings. It’s called Lily’s Place.
Lily’s Place (www.lilysplace.org) is a non-profit infant recovery center run by volunteers and supported by donations. National leaders in the care of newborn infants suffering from neonatal abstinence syndrome (NAS) and withdrawal symptoms of in utero drug exposure, Lily’s Place began welcoming NAS troubled infants into its care in 2014. “The community has rallied around these babies,” says neonatologist Dr. Sean Loudin, Medical Director of Lily’s Place, “So many people in the surrounding areas have shared their time and money to assist us with making our visions become reality.” The withdrawal symptoms of the babies at Lily’s Place are painful, and withdrawal can last 4-6 weeks or in some extreme cases as long as three months. Lily’s Place is a unique facility established to help infants struggle their way through a bad beginning with as much comfort and care as possible.
In early 2015, Kendyll Van Zandt and Kiabeth Santos, Development Managers at USDTL, received a phone call from Rhonda Edmunds, Director of Nursing for Lily’s Place. Rhonda talked about the overflow of NAS infants at Cabell Huntingon Hospital (CHH) in Cabell County, West Virginia, the need for creating a relaxed environment for babies suffering from drug withdrawal, and how Lily’s Place grew out of that need. She invited Kendyll and Kiabeth to Lily’s Place, where they could spend time touring the facility and volunteering as cuddlers. They took Rhonda up on her offer.
It’s March 16th, a Monday, just after the dinner hour for most families, and we’re driving down 7th Avenue in Huntington. The sun is almost gone for the day as we drive past Lily’s Place to get familiar with the area. The neighborhood is not glamorous. Despite what some are calling a revival in Huntington, this neighborhood, like the infants we will see tomorrow, is still showing signs of withdrawal from the decline of the steel industry in the 1970s and 80s. Several homes look shattered and abandoned, despite that they are still occupied. A food bank sits directly across from Lily’s Place, and a few doors down you’ll find a men’s shelter. It is very different from what I’m used to back home.
After our tour of the area, we stop at the local Kroger grocery store to pick up supplies for donation to Lily’s Place tomorrow: diapers, wipes, cleaning supplies, baby laundry detergent, paper towels, and folders to help with their record keeping. On our way to the hotel I’m feeling excitement about tomorrow, but I have so many questions going into this. I can’t help but wonder why mothers put their babies through this ordeal. Why don’t’ they seek help earlier and spare their children the pain? I fall asleep that night with the questions still rolling through my head.
West Virginia itself has the highest rate of death from drug overdose of all 50 states.1 A continuing rise in heroin use is a particular concern, with an increase of more than 700% in heroin overdose deaths between 2001 and 2012.2 A 2009 West Virginia study of 8 hospitals found a 19.2% incidence of in utero drug and/or alcohol exposure.3 For Cabell County and CHH the rising drug epidemic, and especially the increased use and abuse of opiate and opioid drugs, has a severe impact. The national incidence of NAS babies more than quadrupled between 2000 and 2012, rising from approximately 1.2 to 5.8 episodes of NAS per 1000 births. By contrast, CHH has seen the incidence of NAS increase from 10 babies per 1000 births in 2003 up to 110 out of every 1000 in 2013.4 The Neonatal Intensive Care Unit of CHH is overburdened and overflowing. Time and care that doctors can provide to each suffering infant is reduced with each newly occupied crib in the unit. Lily’s Place was born out of that need.
Lily’s place is modeled after the Neonatal Therapeutic Unit (NTU) at CHH, which has a very successful track record of caring for NAS infants. “Providing quality care which utilizes the same treatment protocol, most of the same physicians, and well trained nursing care is the backbone to our success,” says Dr. Loudin, “Utilizing a neonatal abstinence center like Lily’s Place and considering them as a unique type of healthcare facility will allow a continuation of care from the inpatient hospital setting to this outpatient setting without altering care.”
Morning has come, March 17th has dawned, and the day is finally here. After patient waiting and copious planning we are ready for this experience. We are excited! When we get to Lily’s place, we meet up with Rhonda Edmunds and Sara Murray, a neonatal intensive care nurse of 25 years, NTU Clinical Coordinator at CHH, and a member of the Board of Directors for Lily’s Place. Our tour begins, and excitement gives way to speechless heartbreak when we see the babies. These cribs are full, and each child is here because they are hurting, their systems desperate for a place of quiet and comfort to see them through the pain. This is their start in life.
The human brain produces naturally occurring opiate substances – for example endorphins and enkephalins – which have a complex interplay with the neural pathways of the brain. Naturally occurring opiates play critical roles in brain development early in life. Adding external opiates and opioids – such as heroin, buprenorphine, or oxycodone – to the developing fetal brain causes changes in the natural opiate processes. Tolerance and dependence can occur, resulting in the drug withdrawal that occurs when the baby is born and the supply of external drug is removed. This occurs for other substances as well, including nicotine and alcohol.
We’ve started out our visit with a tour of the facility graciously given by Rhonda, along with a little information about what Lily’s place does. The rooms are beautiful. They’ve done a great job giving the exterior of the building as inviting of a look as one can get with a concrete and brick building, but it still hides a very warm, delicate interior designed to bring comfort. The rooms are calming, with soft colors and soft pillows and stuffed monkeys in comfy rocking chairs. These are the babys’ rooms moms dream of bringing their children home to. That’s what it is all about here: comforting babies in pain.
Lily’s place isn’t just about the babies, however, and we see rooms for mom and baby to share near the end of an infant’s treatment, once the withdrawal subsides. Mommy and baby share these rooms for up to 48 hours before leaving the facility, while mom receives supervised, hands-on training on how to care for her high needs infant. An unfortunate reality is that neonatal abstinence syndrome is an ongoing issue that these kids and their families are going to be dealing with for the rest of their lives. The care and comfort from Lily’s Place is definitely a better start than many other NAS babies get, though.
Babies suffering from withdrawal are typically jittery and hypertonic, a fancy way of saying they cry long, loudly, and with a very high pitch. They are also hypersensitive to external stimuli, such as bright lights and loud noises. Drugs in a baby’s system may act to depress the neural transmitters they bind to, resulting in overcompensation by other systems in the brain. Once the supply of drug is ended, the suppressive effect of the substance is gone, and an infant’s brain is flooded with norepinephrine as a response. This is what causes the jitteriness and other signs of NAS. Hypersensitivity results from the overcompensation of the various neural systems that now have no drug to bind up neural transmitters. It takes time for these systems to come back down to a normal level where an infant can once again tolerate typical external stimuli.
It’s time to meet the babies. I’m all nerves. We have to wash up first, so I head into the bathroom and get cleaned up. After I throw my paper towels away, a young lady tells me I’ve accidentally thrown them in the bin for dirty smocks. She’s dressed casually in jeans and a long-sleeved shirt, and clutching a bottle of Mountain Dew as if it’s holy water (Sara Murray refers to Mountain Dew as the state drink of West Virginia). I realize this is not a Lily’s Place staff member, but one of the young moms whose baby is being cared for, and now there is a sudden tension in me. She’s been nothing but pleasant and helpful to me, but all I can think in my head is, “How could you? How could you do that to your baby?” I pick my paper towels out of the bin, put them in the garbage can, and leave quickly.
Soon after, I’m in one of the care rooms holding baby Lucy. She’s beautiful. She looks like many other babies you would see, but she doesn’t act like one. She is inconsolable, her cry sounding more like a wail of pain than a typical baby’s cry, and I can tell her stomach hurts. I’m nervous and tentative while rocking her. I don’t have children, or nieces and nephews, and the last time I briefly held a normal newborn was more than two years ago. Lucy’s crying was so persistent, and I think, ‘Well this just reaffirms that I am no good with kids.’ But, really, no one could have done any better in this situation. I hold Lucy in the rocking chair, a regular chair, standing up, sitting down with her head on my knees while moving her legs back and forth towards her stomach, scrunching her up into a little ball with her legs and feet towards her stomach, but nothing seems to ease her pain for longer than a few minutes. I’m told Lucy has been crying the whole night with occasional moments of peacefulness.
Later, I’m sitting with Lucy, Rhonda Edmunds, and Sara Murray in the room. Lucy has stopped crying, and there are several minutes of peacefulness. We talk about patience. I say to Rhonda, “I’m a normal person, not having to deal with any sort of addiction, and I’m not always necessarily patient with kids that constantly cry. I cannot imagine these babies going home to a family addicted to drugs, in an altered state of mind, and having to be patient with a newborn who is always crying.” Rhonda looks at me and nods in agreement. “That is very likely the outcome that many of these newborns will face,” she says.
Her name is Ellie, and she is precious. She is eight weeks old, beautiful, and with cheeks that beg to be squeezed. But, right now her defining trait is pain. Ellie is crying, and this is not a normal cry. I’m a parent, and I know my cries: the I’m hungry cry, the change my diaper cry, the I’m just generally feeling under the weather cry. This is none of those. It’s a cry of pain and a cry for help. She suddenly spits out a white liquid that the nurse tells me is due to the acidic feeling in her stomach. NAS babies experience gastrointestinal problems, causing stomach cramping. As I hold her and try to console her, the nurse coaches me to hold Ellie in a ‘C’ shape. Holding her feet up puts pressure toward her stomach and helps soothe the cramping. She’s been living with these horrible symptoms for eight weeks, the very first of her new life. I just want to heal her.
Ellie is bundled tightly in a blanket, like a burrito, with hands covered. She’s pretty strong though, and her hands come right out and up to her mouth, where she begins to suck really hard on them. This is a common behavior for NAS babies. Pacifiers help, but only for short moments. Miraculously, she falls asleep in my arms after several minutes, and I see her smile. My feelings and thoughts are difficult to work through. I say a prayer for Ellie and the rest of the babies here and future babies that will unfortunately sleep in these cribs.I hope there is a bright path ahead for Ellie. I am truly humbled by this experience.
Lily’s Place is not only about treating infant withdrawal. Their commitment to the treatment of NAS addresses the larger issues of parental addiction and economic disparity. Mothers are offered help to find the resources they need including substance abuse treatment, counseling, smoking cessation services, education and employment training, food and nutrition counseling, and many other outlets to help improve the fortunes of both mother and baby. The mission statement of Lily’s Place encompasses their holistic approach to addressing the burdens of NAS:
“Lily’s Place provides behavioral health to infants suffering from prenatal drug exposure and offers education and support services to families and communities to help recognize and manage the needs of substance abused babies. In its efforts to provide immediate, short-term care for these infants, Lily’s Place provides non-judgmental support for mothers, offers counseling and support for families, all at a savings to the taxpayers of West Virginia.”
“With so many people focused on the cost burden of NAS to the healthcare community,” says Dr. Loudin, “we hope that Lily’s Place can show how the system of care can be both of good quality and economically beneficial.”
The stories we hear about the mothers of these children are truly heartbreaking. One of them, a 20 year old first time mother, was taught to shoot up heroin at age 13 by her mother, who in turn learned it from her own mother. We see her briefly and she smiles at us, only 2 teeth remaining in what might once have been a bright smile of innocence. She only made it through 8th grade. Now she is being offered help to remain in a recovery center in TN and have her baby transferred with her after treatment at Lily’s Place. Will she sign the waiver to go to the recovery center? We do not know. It’s an unknown at the beginning of her baby’s life, which has become despairingly more common in West Virginia.
I can’t help but ask the question over and over in my head: how can a mom expose their baby to drugs in the womb? The reality is that many women are not in full control of their life. Addiction is a disease, and addicts need help. This young girl has not known a drug free life since she was 13. She was young, trusting her mother, and thought mom knew best. That innocent trust led to addiction. Now it hits me: what I do for living, what I am part of, is about advocating for the future, for babies and mothers. It’s not about being the mommy police. It’s about partnering with good organizations like Cabell Huntington Hospital and Lily’s Place to address the whole problem. We can’t know what has occurred in a person’s life to lead them to addiction. They just simply need help. That’s what our work is about – the beginning of help.
What is the biggest lesson I’ll take home from visiting Lily’s Place? Don’t judge. I instantly judged that young mother I had met in the bathroom. Now, I take a step back and realize that this young girl, 20 years old, needs a support system. She needs a group of people to show her the right path, because she was not steered in the right direction during her formative years. We spend a lot of time talking about the babies who are addicted and dealing with withdrawal during their first few weeks of life, but we need to remember that these newborns are a result of young women out there who need help and didn’t get it in time. To fix a problem, you need to start at the source. For these newborns to have the best possible chance at starting a healthy life, we need to make sure that we make efforts to help from the very beginning. For mothers who struggle with addiction during their pregnancy, and their newborns who need extra care right from the start, I am glad there is Lily’s Place to provide support and get these families on a healthy path to a long and happy life.
1. Prescription Drug Abuse: Strategies to Stop the Epidemic. Retrieved from: http://healthyamericans.org/reports/drugabuse2013/
2. West Virginia Fighting a War Against Heroin Addiction, Overdose Deaths. Retrieved from: http://wvpublic.org/post/west-virginia-fighting-war-against-heroin-addiction-overdose-deaths
3. Stitely, M.L., Calhoun, B., Maxwell, S., Nerhood, R., and Chaffinn D. (2009). Prevalence of drug use in pregnant West Virginia patients. West Virginia Medical Journal. 106(4 Spec No), 48-52.
4. Sean Loudin, MD. (2015). The Impact of Neonatal Abstinence Syndrome on One West Virginia Community. Retrived from: http://www.slideshare.net/USDTL/the-impact-of-neonatal-abstinence-syndrome-on-one-west-virginia-community