S2E2 / Neonatal Abstinence Syndrome (NAS) / Chris Miller, Debbie Richmond, Lisa Carter

Is neonatal abstinence syndrome — babies whose mothers used opioids in pregnancy and who go into withdrawal after birth — is another form of intergenerational violence? And how can a community stop the cycle?

Note: This season of American Diagnosis was originally published under the title In Sickness & In Health. 

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Debbie Richmond: When I first started in investigating child abuse back in 1996 the neglect and abuse that we saw back then was more from parents’ alcohol abuse, parents who were alcoholics, and there was a lot of neglect involved.

Celine Gounder: This is Debbie Richmond. She started working for the Bristol Tennessee Police Department some 30 years ago… eventually making her way up to lieutenant in the detective division. Her goal was always to work with children and families. Policing has changed a lot since she first started.

Debbie Richmond: But now that has transitioned over the years that we’re seeing parents abuse of opioids, which is causing a lot of issues with raising your children. And it’s a driving force for neglect and for abuse. And we are, it’s almost an epidemic in this area with, especially young parents, being addicted to opioids.

And then the consequences from that and the fall out with the children.

Celine Gounder: Welcome back to “In Sickness and in Health.” I’m Dr. Celine Gounder. In this season, we’re tackling a subject that’s been making headlines for years now: the opioid overdose epidemic. Yes… it’s widely covered… but there are nuances… subtleties… to this health crisis that never really make the news.

Like so many other public health problems, opioid abuse has downstream consequences… the vicious cycle of social and economic effects… a chaotic lifestyle… isolation from friends and family… job loss. There are, of course, psychological and physical harms… infections… damage to vital organs… even death.

Opioid addiction is not… in the strictest sense of the word… contagious… or hereditary. But as opioid abuse has soared in the United States… there’s a population of incidental addicts that’s growing… babies born with addiction… often to mothers who had no idea they could pass their condition on to their children.

According to Debbie Richmond, this isn’t really anything new… it’s just a new symptom of an old problem.

Debbie Richmond: Yes. It’s a revolving door. Drugs, abuse, neglect of children is a revolving door. When I first became a police officer, I treated these… or I was involved with the mothers and fathers of children, and and their children may have been sexually abused may have been physically abused. A lot of neglect and I saw a lot of that. And most of that involved alcohol and some drugs.

Celine Gounder: Debbie Richmond sees a generational thread in babies born addicted… she’s able to trace that baby’s condition back not simply to the mother, but to the mother’s parents… and further.

Debbie Richmond: But now I’m seeing those children who were victims, they’re now adults, and they’re repeating the same process that their parents did. And if you think about it, we learn by what we see and what we’re taught. And if you’ve not been taught any different and that’s all you see, you don’t know that it’s wrong. You don’t know that it’s bad, or just how bad it is, and you don’t know what to do about it. If even if you did know that it was bad.

Celine Gounder: The parenting issue is two-fold… children are neglected or abused… and so think neglectful or abusive behaviors are a normal part of parenting. Children see their parents using drugs… and learn that’s a normal way of coping. Without a clear intervention, this pattern of intergenerational trauma repeats itself. When parents use drugs, Debbie says, they don’t just put their babies at risk for opioid addiction… they fail to respond to their child’s needs.

Debbie Richmond: So, if you’re a parent, the drugs may make you feel like you’re a good parent and that you’re being observant, and the drugs kind of trick you into thinking that, and you’re not alert … and I see a lot of babies come home from the hospital, and they’re very  very agitated because they are they are being weaned off of drugs, and they cry a lot. So I’ve seen babies smothered purposefully and also through neglect. … So I’ve investigated a lot and when I look back on them it’s very tragic and it makes me very sad.

Celine Gounder: People like Debbie… who investigate cases of child abuse and neglect… have been around for a long time. But what’s been missing, she says, is community engagement… an ongoing commitment to teach traumatized children and their parents a new normal… to help lead them out the revolving door.

But Debbie sees something different with this generation… something that may finally break this revolving door of addiction, abuse, neglect and trauma. A spike in babies born with opioid addiction has made the cycle more visible… and the community is waking up.

Lisa Carter: I remember, when I started to work in the NICU, you know, we would see just a couple of babies who had withdrawal symptoms or, you know, were experiencing neonatal abstinence syndrome, and it, it wasn’t an everyday occurrence for sure.

Celine Gounder: This is Lisa Carter. She’s the CEO of Niswonger Children’s Hospital in Johnson City, Tennessee… about 25 miles from where Lieutenant Debbie Richmond is based.

Lisa Carter: And then over time it was like, wow, the number of these babies are increasing. And then, you know, I stepped out of a staff nurse role and obviously got involved in hospital administration, and we started pulling numbers and really looking at data and we really started seeing, you know, the number of babies in our NICU increase. We started seeing a lot of different types of parents’ needs coming into the unit.

Lisa Carter: About 8 years ago, Lisa Carter noticed a new trend. She’d been promoted from staff nurse into hospital administration. Census data and other studies told her to expect a lower birth rate… so less of a need for neonatal hospital services. But that’s not what happened. The numbers of newborns needing a neonatal intensive care unit were going up. This was the beginning of a spike in NAS, or neonatal abstinence syndrome.

Lisa Carter: And what we found was that really the care within the unit was really not adequate for any of the babies because you would have a baby actively withdrawing beside of a micro preemie, or in his proximity, and the noise levels were through the roof.

Celine Gounder: The hospital had to hire a lot more staff… and open a separate neonatal intensive care unit for babies in withdrawal. Other neonatal intensive care units often welcome volunteers to lend a hand… to help comfort premies and other sick newborns… but babies with neonatal abstinence syndrome… were more than their volunteers could handle.

Lisa Carter: We have a lot of people who want to volunteer within the unit and help the babies. And they really think they’re coming in to care for a normal newborn, and really it’s a different picture, because they’re very very difficult to console. Just because of the continued crying. And it’s very loud, very shrill. Also very much hypertonic. Their muscles are very sensitive, reflexes are sensitive, you know, just the normal reflexes you see in a newborn are extremely hyperactive. Anything from a suck reflex to just normal head control. I mean, you can honestly hold the whole baby up and their backs are so stiff and their heads are so stiff. You don’t see the normal head lag like you would you would with a normal baby, just because their their reflexes are so hyper.

Celine Gounder: Babies born addicted to opioids have withdrawal symptoms analogous to those of an adult… everything from yawning, sneezing and sweating… to fevers, vomiting, diarrhea, weight loss  and seizures. They’re in pain… and cry inconsolably. It’s difficult to hear of something like this happening to an infant… leagues more difficult to witness… and that, Lisa says, can be a major problem for the women who bring these children into the world.

Lisa Carter: …we actually did a research study with some of the nurses’ perceptions and, you know, unfortunately what we find, often… is that people see the babies as a victim, and they want to blame the moms. And we’ve recognized that we’ve really had to do a lot of education about the physiology of addiction really what happens to the brain when you are addicted to these substances, to really provide that compassionate care to both the baby and the family. Because we really do want to provide compassionate care to that mom as well as the baby because, you know, she’s struggling with whatever issue within her own life.

Celine Gounder: These discussions reveal much about how we think and feel about drug users. When it’s just their own health that’s at stake, we have an easier time acknowledging their life struggles and mustering empathy for them. But we feel differently when a newborn’s involved… about a baby’s innocence and a mother’s culpability… of suffering caused by someone else. And while no mother chooses to have a child with neonatal abstinence syndrome, we find ourselves feeling she should have known better.

But how, exactly, to educate people about neonatal abstinence syndrome, to stop this from happening, remains in question. Because it’s a huge issue in the country right now: between 2000 and 2012, rates of neonatal abstinence syndrome in the United States increased by a factor of five. In Tennessee between 2000 and 2007, over a third of pregnant women on Medicaid were prescribed opioids at some point during pregnancy. They didn’t use these drugs illegally. They used them under the supervision of a doctor.

Ashlie Harrod: My name is Ashlie Harrod and I am the NAS nurse educator in my county for the Sullivan County Health Department.

Celine Gounder: The Tennessee county where Ashlie works, Sullivan, is just up the road from Niswonger Children’s Hospital in northeastern Tennessee. This part of the state has one of the highest rates of neonatal abstinence syndrome in the country. Ashlie’s job is to spread the word about neonatal abstinence syndrome… by talking to women, learning what they don’t know… and educating them about their bodies and their choices.

Ashlie Harrod: What I do, is I go to the medication assisted treatment facilities, the facilities that prescribe Suboxone and Subutex. I go there. I go to our county jail. I go to halfway houses girls’ homes. Pretty much anywhere I can get my foot in the door. And I teach about birth control. I educate people on, you know, NAS, in our area because there’s not a lot of awareness in our area.

Celine Gounder: The problem, Ashlie says, isn’t simply that addicted mothers carry their babies to term without realizing that their addiction is affecting the fetus… it’s that so many of these mothers never intended to have a child in the first place.

Ashlie Harrod: So with this, I will say, in the United States as a whole, 50 percent, nearly 50 percent of pregnancies, are unintended. But when you look at women who are on opiates then that percentage jumps to 86 percent. So we have a high percentage of women that… it’s unintended pregnancy.

Celine Gounder: So you’ve got a high percentage of women using opioids who are becoming pregnant… women for whom having a child isn’t a consideration… until they’re already pregnant. But, as Ashlie has seen, this is less a matter of negligence or apathy than it is one of ignorance.

Ashlie Harrod: Birth control is not common sense. It’s not a common sense thing. So the biggest thing with some, contraception is the lack of knowledge. And you know like I said there’s been a study that was done and it proves people just they’re unaware.

Celine Gounder: The study that Ashlie is referring to… in Knoxville, TN… the Health Department surveyed nearly 300 women at opioid addiction treatment clinics… about contraception. Essentially, it was a pop quiz on preventing pregnancy… true/false questions… and they got only 23-percent of them right. 80-percent of the women had had at least one unplanned pregnancy.

Ashlie’s job is to teach these women about everything from abstinence… to the Pill, Depo   and IUDs… to vasectomies. She teaches teenagers… women who’re already mothers… and women who’re using drugs or are in recovery. She teaches them that they don’t have to get pregnant if they’re aren’t ready and don’t want to.

Ashlie Harrod: You know we’re not we’re not trying to push it on just the people that are using a substance. Of course the people that are using substances… it can lead to NAS. So of course, you know, we want to make sure that they know, hey, you know, you don’t want to get pregnant, you are, you know, part of recovery, you’re in a clinic, you’re getting counseling and therapy. If a child is not something you want right now, you can prevent it. It’s preventable.

Celine Gounder: And for some of those mothers who do give birth to a baby with neonatal abstinence syndrome, Ashlie says, it can be a shock.

Ashlie Harrod: I hear females that are very tearful, and they say, you know, when I was on you know an opiate, I wasn’t told that my baby could possibly be born with a diagnosis of NAS. I’ve never met a mom out in the community that said you know I hate my child, I hope they have NAS. I’ve never met a mom like that ever.

Celine Gounder: Ashlie says it’s important to hammer home exactly what the symptoms of neonatal abstinence syndrome are… because… no matter how hard she works to prevent unplanned pregnancies… some women will get pregnant unintentionally… at the wrong time… including women who’re using opioids… and those babies need the right kind of care.

Ashlie Harrod: So the symptoms, they do vary. They’re scored on a Finnigan scale. And the symptom… There’s there’s quite a long list of symptoms. But we’re seeing the high pitched crying. They’re inconsolable. Feeding doesn’t help. Changing doesn’t help. Swaddling. You know, you just can’t stop the crying. They are experiencing tremors. Some of them you know they’ll yawn, they’ll sneeze you know repeatedly. Vomiting. Diarrhea. Sometimes they have places on their skin that kind of… they kind of, they molt almost.

They, some of them, if it’s severe enough, they can have seizures. Lights and loud noises — that’s one of the biggest things that I teach parents, especially taking a child that’s been diagnosed with NAS home. You know lights and loud noises need to be kept at a minimum. They have excessive sucking. So it’s like that that sucking reflex is never fulfilled. Some of them, you know, they’ll have fever or, you know, rapid breathing. Their noses are really stuffy. Sleeping problems. Slow weight gain, of course, especially if they’re having some you know vomiting and diarrhea. Sweating. The withdrawal symptoms of someone coming off a substance, an adult, that’s what we’re seeing in our babies.

Celine Gounder: Imagine bringing your baby home from the hospital… and witnessing these violent symptoms of withdrawal. It’s a tremendous burden to bear… to feel you did this. Ashlie says she hears stories from parents who’re in denial… who don’t realize their baby’s in withdrawal… even after they’ve spent time in the neonatal intensive care unit… and a doctor’s diagnosed neonatal abstinence syndrome.

Ashlie Harrod: …because I do ask these parents well, how are they doing now? And I always get well, he’s fine, she’s fine, she’s fine, he’s fine. You know they’re fine. … I get stories of, no they didn’t withdraw. They just, you know, they were just shaken a little bit or they were just sneezing so often.

Celine Gounder: Ashlie doesn’t blame these parents…  sometimes, she says, it’s as simple as their not knowing the symptoms of withdrawal…  and even if they are in denial, she doesn’t feel that it’s her job to pass judgement. Judgement just makes it harder to get the parents and their babies the help they need.

Ashlie Harrod: That’s not why I go and do what I do and talk about things. I just want them to know if they need any type of assistance, whether it’s contraception, help with, you know, baby things, help with housing, help with food pantries, anything like that. That’s why I am, I’m there.

Celine Gounder: Ashlie has a teenage daughter… and she admits that she’d rather her daughter wait until marriage to have sex. And… like any other parent… she’d prefer for her daughter to never take drugs. But she’s seen that wishful thinking fails all too often… so she takes a different approach.

Ashlie Harrod: And this is my own personal philosophy: is when you are quiet about a situation, the situation is not gonna go away. So with my daughter, I continually — I talk to her. I talk to her about the drugs in this area. I talk to her about NAS. I talk to her about birth control. I’ve told her several times, you know, if and when that time comes that she wants to be sexually active, if she is uncomfortable with coming to me, go to one of my friends, I’m OK with that. And that is just one of the things, that, you know, that I’ve been asked several times about well, you don’t teach abstinence? Of course I do. And I say, however, have you ever ran across a 15 year-old male that says, oh, I don’t have a condom, I’m not gonna do this. No you don’t. It just does not happen. The reality, I would love for my daughter — every parent wants this — you know, wait till they get married to do things, stay away from drugs. You know, all those aspects of life, but in reality, I can tell you, it’s not happening. Teenagers are having sex. Everybody’s having sex. There are a lot of people using drugs. So I think the most important thing is that open line of communication.

Celine Gounder: Ashley wants to help women plan when they get pregnant… to help parents struggling with addiction… to make sure babies with neonatal abstinence syndrome get the care they need… But she knows they won’t listen or accept that help if she judges or blames. Would you accept help from someone who looked down on you? …And the help that’s offered? …it needs to fit with the everyday reality of how people live… not with how we wish things were.

Education’s clearly an important piece of the puzzle. And there’s clearly a role for experts and professionals… but this is one of those problems where it really does take a village.

Chris Miller: You know the most difficult part of it was after being in the NICU with him and just you know any with having a lot of tremors, and not necessarily seizures but my wife kind of called them convulsions or seizures. I mean, you know, I don’t think they were overly violent but he was, his poor little back was just bleeding from where he was kind of bouncing on the pallet, and they tried to pad it. We thought he’d been injured somehow during the delivery but it was just really from the withdrawal.

Celine Gounder: This is Chris Miller. He’s talking about his adopted son Levi, who was born with neonatal abstinence syndrome. Chris and his wife already had three children of their own when they decided to adopt Levi. They felt that still had so much more to give… and affirmed in questionnaire after questionnaire that they would accept any child… no matter the special needs or challenges.

Chris Miller: It’s just something we felt very led to do. I’ve been asked a couple of times about different pieces of that, and I think what’s really interesting relative to the discussion that we’re having today is… you know, one of the first checklists so to speak that you go through when you go through your adoption process is what exposures are you willing to deal with in terms of drugs and alcohol specifically?

Celine Gounder: Chris and his wife had been considering adoption for a long time. For years, they’d been going on international medical mission trips, working in orphanages and sponsoring children through an organization called Compassion International… and they felt that it was time to bring that work one step further… into their home. So when they were asked if they were willing to adopt a child that some prospective parents wouldn’t… say a biracial child… or a child with the potential to be born with neonatal abstinence syndrome they prayed about it… their hearts told them this was something they had to do.

Chris Miller: But, yeah, it was just something that was very big on our heart. And it has been an absolutely amazing journey I can’t say enough about.

Celine Gounder: But still… meeting their son Levi for the first time… it was different than with their other kids.

Chris Miller: …you’re used to the feeding and sleeping the burping and changing diapers and that sort of thing. And that really wasn’t what was happening.

Celine Gounder: When they were matched with Levi’s mother and learned that she’d used opioids while pregnant with Levi, Chris and his wife Sabrina had some idea of what they’d be facing. But knowing about something and living through it aren’t the same thing.

Chris Miller: There was a lot of uncertainty. I work in the medical field, my wife’s a physician, so you know, you think you know these things, and then when you’re sitting there and it’s your child and he’s having these tremors and he’s not eating and these monitors and different things, I mean, it’s just such a helpless feeling.

Celine Gounder: Chris and Sabrina didn’t expect to meet Levi’s mother — she’d said that she didn’t want that contact… but then… after Levi was born… she asked to meet them. Chris described their conversation as brief. He bought her a soda. She shared a little bit about her life. Levi had siblings… six or seven of them… who she didn’t care for… and she’d been in prison during part of her pregnancy with Levi.

Chris Miller: It was a little difficult. You know looking at his mother and trying to feel like, OK, I need to love this person. I need to show her compassion because she’s been on this journey of her life and I don’t understand, you know, and it’s not my place to judge that. So how can I be part of her journey that maybe you know, somebody not judging her and not doing the sort of things, that make her feel better and might change the course of her life.

Celine Gounder: They haven’t seen Levi’s birth mother since. Chris wonders earnestly if meeting her son’s adoptive parents might have brought Levi’s mom some sense of acceptance too… but they haven’t had the time to dwell on it too long. They had to get to the task of raising a baby with neonatal abstinence syndrome… and that wasn’t straightforward.

Chris Miller: It’s so different to describe, you almost have to hear it, because you know, we have three biological children. I’m familiar with what the I’m hungry, I’ve got a dirty diaper, I’m uncomfortable, I need a nap cry sounds like. This is almost like a — It reminds me of when you’re in the pediatrician’s office and you’re getting shots, you know, that type of pain cry. You know it was very… And it was just relentless. I mean it was on and on and on and on.

But there was just not a soothing of it, which… I mean it would kind of make you cringe a little bit when you heard it because you could tell… just you knew audibly that the child was suffering, I guess, would be a good word. I hate to… That’s fair to say that they’re suffering with what they’re dealing with. It’s just unconsolable. That’s why there again I take my hat off to those nursing staff. They try to rock the babies and feed them and console them for something that’s really not consolable.

Celine Gounder: Eventually, Levi did start to gain weight. The tremors diminished and then stopped… he got to come home… but he was still different from Chris and Sabrina’s other children. At two years of age, he showed some speech and sensory issues… He’s engaged in head-banging… He’s needed physical therapy for legs that wouldn’t straighten out. Thanks to TEIS — that’s Tennessee Early Intervention Services — he has social workers and case managers… to help him and his family cope with the residual effects of the syndrome he was born with.

There’s still a lot we don’t know about the long-term effects of neonatal abstinence syndrome. And there are a lot of other social and environmental factors… including cycles of intergenerational trauma… at play… but Levi’s symptoms are considered to be part of the syndrome.

Chris Miller: And I think from the baby’s standpoint, NAS babies, there’s still a lot of stigma around people — I mean, that’s one of the things that I ask, was he OK is he… you know, obviously there’s varying degrees of impact from NAS and what that looks like for the child, but you know some folks believe that they’re special needs and they’re going to have ‘em — and sometimes that is the case — but there’s a pretty big spectrum of what that looks like for these kids.

Celine Gounder: Chris says they’ve been lucky with Levi… that he’s happy, loving, and making progress all the time. Chris believes that with the right structure, consistency and home environment… these kids can achieve stability. But Chris thinks there’s more to the story than rehabilitating these babies. He and his wife make a point of leaning hard into “hate the addiction, love the addict.”

Opioid addiction isn’t new to Chris. His brother struggled with it. A cousin recently died from an overdose. He sees people worthy of redemption… rather than addicts to reject or condemn.

He also believes there’s something unique about motherhood… it’s a moment of hope… a glimpse at a different life. He thinks that blame and persecution close these windows of opportunity… to turn one’s life around… while nurturing another.

Chris Miller: When I make you feel so guilty and ugly about who you’ve become, that you don’t think there’s any hope of redemption for your life, then good luck ever getting back on the right track. There again, as much as it was a discussion we had to have when we went to meet Levi’s mother, we really made a point to say we want to show her much love and compassion as we can in our conversation with her, because maybe that could be a turning point for her. And I’ve said this to other media folks I’ve talked to you. I do believe that for these mothers, a catalyst for them to change and something that can help them change the course of their life can be…

I just — I just really believe inherently there’s something about motherhood. Obviously, I have not experienced it, but I’ve seen my wife go through it, you know, good friends of ours, that there’s a switch that’s flipped with that. And I believe that if you can leverage that the right way, and obviously, maybe the child is not in a situation where they can go home with that mother from a hospital, but can that start them on the path to recovery? Right? Because I think we judge far far too often.

Celine Gounder: Chris acknowledges that babies with neonatal abstinence syndrome suffer real harm. But he doesn’t think that makes these mothers criminals. He doesn’t think it’s so black and white… He thinks that they, too, have suffered… and now bear the additional burden of knowing what they’ve done. He doesn’t see any point in adding to all that suffering.

Chris Miller: What I hear a lot when you hear people talk whether it’s illicit drugs or opioids is — How can a mother do that? They oughtta lock them up, they oughtta to do this and throw away the key that sort of thing, and that’s not an approach that is going to help us deal with this issue. I mean it is absolutely not. I don’t believe for a second that any of these mothers are sitting there at night injecting or snorting or whatever they’re doing, saying, you know what? I really want to harm my child today. They’re fighting a battle and they don’t have the support around ’em. And if they have more people that hate on them instead of love them, they’re never going to overcome that.

Celine Gounder: Even after watching his son experience the pain of opioid withdrawal and ongoing issues related to neonatal abstinence syndrome, Chris stands firmly behind Levi’s mother… he thinks she needs love and support, too.

The options for pregnant women with substance abuse are changing and improving. More responsible opioid prescribing and greater use of family planning services remain central to preventing neonatal abstinence syndrome. Women who abuse opioids need a lot help… access to treatment… and access to services… so they can be the moms their kids need.

There are resources and institutions specifically designed to help pregnant women in active addiction and babies born with neonatal abstinence syndrome.

Today’s episode of “In Sickness and in Health” was produced by Hannah McCarthy and me. Our theme music is by Allan Vest. You can learn more about this podcast and how to engage with us on social media at insicknessandinhealthpodcast.com, that’s insicknessandinhealthpodcast.com.

If you or a loved one needs help, you can reach out anonymously and confidentially to SAMHSA’s National Helpline at 1-800-662-HELP, that’s 800-662-4357. SAMHSA stands for Substance Abuse and Mental Health Services Administration. You can also find information online at www.findtreatment.samhsa.gov, that’s www.findtreatment.samhsa.gov.

I’m Dr. Celine Gounder. This is “In Sickness and in Health.”