Countermeasures Season 2 Episode 2 Podcast Transcript: Compassionate Care for New Mothers
[00:00:01] Nikole The guilt and shame that comes with the other children not being present and say, you have a newborn. It’s tremendously difficult to watch the women go through. But having someone who could share those same emotions and not be judged like it’s just like the peer support, you know, having someone who’s going through or been through what you’re going through at the current moment just makes you not feel alone. You have, you know, you can share that without being judged. I think judgments, the big piece in this with the stigma of “I can’t believe she got sober for this kid, you know, or didn’t get sober for those children.” It’s hard. It’s really, really hard to say I am alone. I wasn’t the best mom with these previous children, but I’m doing the best I can for this new baby. But I’m still working on reunification with those children.
[00:00:50] Narrator This is Countermeasures, brought to you by Emergent, maker of NARCAN® Nasal Spray. Join us as we explore the shifting, complex world of the opioid crisis. Today, opioid overdose is a leading cause of accidental death. With so many families, loved ones, and friends behind these lives lost. This season, we’ll continue to explore some of the communities hit the hardest by the crisis. From prisons and construction sites to schools and elderly care. We will hear from changemakers offering a new way forward. For pregnant women and mothers who struggle with opioid dependency, caring for themselves and their children can be difficult. Access to compassionate and trauma informed care, basic services and support in their recovery can be difficult to find. Additionally, the guilt and stigma of opioid dependency can prevent them from seeking out and getting treatment for them and their children. Babies who are exposed to opioids in utero have unique needs and need unique support. Thankfully, there are organizations across the country that are helping mothers and children be successful, keeping more families together and setting them up for success. Tara Sundem is the co-founder and executive director of Hushabye Nursery in Phoenix, Arizona. Tara is a neonatal nurse practitioner with over 30 years of experience in the NICU. In 2015, she began to see a rise in babies coming to neonatal intensive care units that had been exposed to opiates. She learned that the hospital environment was not conducive to helping the babies through withdrawal. So she and her co-founder decided to start Hushabye.
[00:02:36] Tara We opened our doors. We have a 12 bed unit here in Arizona where we can have Mom, baby, daddy stay in one room while baby goes through that acute withdrawal process, all while providing services for mom and dad to get them well. We started a program called the HOPPE program, which is Hushabye’s Opioid Pregnancy Preparation and Empowerment Program (HOPPE). But essentially what it means is this you teach families what to expect, how to care for their baby. You give them all of this education which leads them to go, “I really am a good mom. I am a good dad.” They’re empowered and they know how to advocate for their little ones so that the little ones get the care that you and I would expect our babies to get. We are working today with 136 pregnant women that are struggling with substance use or have been prescribed medications for opiate use disorder, and our goal is, number one, healthy mom, healthy dad, healthy baby. And as long as it’s safe, keeping moms and babies unified, that is our ultimate goal. And, then looking at those families, helping them make sure that housing, food, transportation, that they have all of those barriers figured out and addressed so that they are able to take their babies home. We’ve served almost 800 babies today.
[00:04:23] Narrator Babies exposed to opioids in the womb are born with neonatal abstinence syndrome. These babies need unique care which Hushabye provides, alongside help for their mothers.
[00:04:35] Tara So neonatal abstinence syndrome or neonatal opioid withdrawal syndrome. So it’s NAS or NOWS. NAS means exposed to an opiate and any other substance. NOWS means only exposed to an opiate. But what it is, is it’s a constellation of symptoms that a baby has from or, or exhibits from opiate exposure while pregnant. Baby comes out usually within 24 hours, they start feeling it just like an adult. I had one mom explain to me a withdrawal as being worse than a migraine times 100. And when she said that, I was like that is exactly what we see with babies vomiting, diarrhea, inability to sleep, irritability, fever, sweats, chills. They cry. They’re inconsolable. And it’s that constellation of symptoms gives them the diagnosis of any type of withdrawal. So our typical stay at Hushabye for a baby is, our goal is mom delivers in the hospital at 24 hours they do some testing that they have to do at the hospital. And then at about 26 to 28 hours, babies transfer to us along with Mom and Dad. We send an ambulance to pick up Mom. And it’s not urgent, but the ambulance picks them up, mom or dad, one can travel with the baby to Hushabye. We can get an Uber or medical transport for the significant other to be able to come and meet family or meet baby at Hushabye also. Baby comes in. Usually the baby that that we see initially is struggling. Having a really hard time screaming, irritable, frantic, can’t figure out how to eat and literally within 30 minutes quiet dark environment. We can shut the lights off and we have 1 to 1 caregivers. Meaning when Mom and Dad come in, they’re anxious from what had happened at the hospital. They’re exhausted. They haven’t showered. They haven’t eaten because they just haven’t been treated great. We’re like, get in the shower, get some clean clothes. Let’s get you some food. We have someone right here that’s going to hold your baby.That’s how we’re different at Hushabye then what the hospital is. The hospital, we just don’t have the hands. My peers do really good work with babies that are this big, or babies with heart issues, breathing issues, babies that are withdrawing need a different environment. And that is nonjudgmental, barrier free, trauma informed environment, which means that we’re looking at the whole entire, family system as the patients, not just the baby, because what we find is if we can de-escalate a mom and dad and we can get their energy being calm. I can put a baby that’s frantic into mommy’s arms, and that little one just melts and it’s like, oh, I’m back inside. This is the best thing. But we literally need to get mom and dad in the doors. Help them just take a few breaths, get them some food, get them a nap, have them meet with their peer support or their therapists to go, you know, that was really hard. I’m here. Thank goodness I’m here. And then we start doing more and more education with family or reinforcing what they learn prenatally. This soothing secrets, which are seven different techniques. You hold them sideline, you do a shush noise, which is mimicking mommy’s heartbeat, making sure that they can suck on a pacifier. We go through all of those things. What we found is this- if we can get a baby to us within 24 hours, our average length of stay is eight days. Eight days. They’re able to get out of here, and we look to make sure that they are not being brought back into the hospitals, and they aren’t. What we’re able to do is make that baby’s baseline, that entire family’s baseline of calmness or anxiety is low. They’re very, I wouldn’t say they’re relaxed because I think they’re still anxious, but compared to where they are in the neonatal intensive care unit, the reason you see a difference is the environment for some.
[00:09:29] Narrator Justin Phillips is the CEO and founder of Overdose Lifeline. Along with a wide variety of other programs to fill the gaps in treatment for opioid and substance use disorder. Overdose Lifeline recently opened Heart Rock Justus Family Recovery Center, a recovery home where women and children under the age of two can stay for up to 18 months.
[00:09:51] Justin So at Heart Rock Justus Family Recovery Center, it’s really about recovery, supportive housing first and foremost. So we take women who are referred to us by the court or a treatment center. You have to have gone through some type of detoxification before you can come to us. We layer that recovery foundation with supports for pregnancy and all the unintended consequences that come with pregnancy and recovery that maybe are unrecognized at first. So, for example, perhaps you had children that you lost due to your substance use disorder. Perhaps you chose to give up your children due to substance use disorder. There’s a lot of trauma, and pregnancy comes with its own complications without adding on the layer of early recovery. So we involve occupational therapy, and we look at perinatal depression, and we really wrap the women around additional supports that are required for good maternal health care, in addition to recovery support.
[00:11:00] Narrator Tara and Justin both emphasized that women generally, but especially mothers, are an underserved group that faced their own set of challenges. Some of the mothers coming into these programs have little or no experience caring for an infant. Navigating early motherhood alongside an opioid dependency or recovery journey can feel overwhelming and isolating.
[00:11:21] Tara And so we have the HOPPE program, which provides education to families to ensure that they know how to get their babies through the withdrawal process. How do you help them soothe? Teaching them how to feed. Helping them know how to change a diaper. Which you kind of go, that’s a no brainer. But if you’ve never been taught, you’ve never babysat, you’ve never cared for anyone, you don’t know. Our families are very much those that are stigmatized and judged. And so in the hospital, when you’ve been judged going through labor, you definitely don’t want to ask that same person to go, ‘Can you teach me how to put a diaper on?’ You feel embarrassed, ashamed that you don’t even know that because you already have felt bad, because you have not been treated the greatest. And what we do is make sure that they know what to do. They know the signs and symptoms of withdrawal with their baby. They know what they’re looking for, and they can go into the hospital into that delivery knowing what to expect, knowing what their rights are, knowing what it’s going to look like if they have a C-section, and pain management. That is one program that we have. And then we do triple P parenting, which is an eight week, I think it’s eight weeks, maybe 12 weeks parenting class that I personally wish I would have had. They learn, you know, what are their beliefs and parenting and how they were raised and how to make it that, you know, why do we not spank anymore? What is that, and why was that acceptable at one time? Why is it not? What does it do in the brain development? But it goes through all of those things.
[00:13:10] Justin So at Heart Rock, we try to focus on all the elements of recovery and not just abstinence or harm reduction as it relates to drug use, but also good nutrition and how to have good nutrition, good self-care and exercise and and focus on, for example, those modalities that we know are beneficial to include meditation and yoga. And again, the perinatal supports that we provide, and the help through occupational therapy with parenting, there are very few houses like Heart Rock that allow women to come to recovery, supportive housing with their children, that also provide the additional supports that we provide. Because it’s challenging, but women have to choose between their children and their recovery often. And we know that recovery supportive housing is part of the best practice in the continuum of care of long term recovery. Some of the services that we provide and the supports that we provide, are really about the women’s place in the world, potentially alone in this pregnancy. So we provide doula services so the women don’t have to go to their delivery alone, because you often need an advocate in your delivery. And in substance use, we burn a lot of bridges, and we potentially have lost connection to family that would normally serve those roles without substance use disorder. We provide support when the women have involvement with court, you know, so we go with them to court. We serve as advocates for them in court as well as for the children. When the Department of Children, Child Services involved, we then support advocacy around that as well.
[00:15:02] Narrator Nikole Young is a director at Heart Rock Justus Family Recovery Center. This issue is particularly important to her as she’s been there herself. Nikole has recently reached five years of sobriety.
[00:15:15] Nikole So a little bit about my story is that back in 2010, I went to a detox center at a hospital. I was detoxing pretty bad. All the symptoms, I didn’t feel well. And I had a nurse come to me who had no experience in recovery. Substance use was not her story, nor was she affected by it immediately. Who kind of got the textbook advice for me, you know, asking me those questions, “well, how does this make you feel?” She didn’t understand the process of what my brain goes through, when I put a substance in my body. So that kind of shut me down, it closes me out with people who don’t know what I go through or understand how my brain works. So I eventually relapsed. I mean, that’s just my story. When I went to a recovery house, in 2019, I had a staff member approach me and introduced me to the 12 steps. She had been what I’d been through. So she had depth and weight that could kind of catch me and say, hey, she’s got what I got. It gave me hope because she had beat this. She had fought hard enough to get where she’s at. She shared how she got there. And it’s that peer support that lets you know you’re not alone, you know, and you see other people and you have this community in this fellowship that have been through what you’ve been through. You know, our stories are a little different, but they’re exactly the same, if that makes sense. It allows you to connect on a level that no other person can connect with you on. And it’s so important just to have people say, “I’ve been there, you know, this is how I overcame that. I’ve been there, I’ve done that.” And that’s what I see a lot in the recovery house. In our house at Heart Rock is a lot of women say, “I don’t have my other kids, and I just delivered this baby, and I have all this guilt and shame that comes with it. And why couldn’t I do this for my other children? But I can do it for this baby.” There’s a lot of women here with that story, and they can offer that support and say, you know, I go through it too. We offer our Making our Moms Stronger group, and we do that to allow the women to learn how to express some of those emotions, while parenting. It is not easy to get sober and learn how to parent again and learn how to parent sober. It is so difficult and hats off to these women. My daughter had to go to foster care so I could get better. So they’re doing some big things, learning how to do this together, but it helps them relieve some of those emotions and speak about it and share their fears and ask the questions they can do with each other and with the child advocate present. So they can get that, yeah, they can bounce off each other. “Does this work for you?” No. “Does that work for you?” No. Or this works for me, “that sounds great.” And then we allow the women the 24 /7 support. If I need a break, I’m exhausted. I don’t have to go use a substance to keep me up. I can go take a nap because staff has my back and they will watch the kids ,if need be. I don’t have daycare today, but I still need to work to provide. We can help you out with that. We have someone here who’s hired directly for babysitting, so she can help out. They just have to put their childcare requests in any other time, you’d have to stay home. You can’t if you don’t have childcare. We help with that. We want them to be successful. We want them to learn how to do this self-sustaining. But in the beginning, you need help. You need that support. And that’s why it’s so important.
[00:18:39] Narrator Peer support like that which Nikole and other members of the staff at Heart Rock can offer, is critical to these programs success. Tara shares Hushabye’s approach to peer support.
[00:18:51] Tara Peer supports are probably our magic bullet here at Hushabye. Having our moms, and we have two moms and a daddy, that have been through the entire program, be able to share their story, and help families understand, you know, “This is where I was at.” I mean, they’ll show pictures, they’ll show videos of their baby withdrawing. They will go through those times that they were still really struggling and very, very vulnerable, and being able to see what that does for someone that is struggling, it’s something that I can’t do. I have, you know, done very well in being able to help make an impact or a dent in many families’ lives with the opioid crisis. But my peer supports those with the lived experience. You just see families respond and cling on to them and they’re like, okay, you did it- how do I do it? We have one peer support that, she, over the years, tried to get well so many times. And with us she came to us five times. I think it was five times. We sent her to four different recovery centers. The fifth one was the first one she went to that she said it was awful and she ended up staying for a year, graduated from the program and doing great. But five times, five times she came back to her peer support and said, you know, this is why I didn’t do it, whatever. But she trusted her peer support. And every time she came back. Now, did she come back like that day and say, I left? No. But she came back in a couple weeks and said, “Okay, I really need help.” And every time the peer support and she was just like, okay, well let’s try this. And so peer supports, those with lived experiences, even those if you think of, not even in the recovery community. When I was raising my kids, of course, I latched on to friends that had kids because you could sit there and chit chat about, “Oh, you’re doing this,” “My kids doing this,” ” How did you get over that?” “I got over this way.” You’re supporting each other. And that is what those with lived experiences are doing, their lived experiences, our experiences with raising kids and parenting while struggling or going through their recovery journey. It’s really the same thing, just a little bit different. But it is the same thing. We need community and what we find and those that struggle with opiate use disorder or substance use disorder, any type of addiction, you isolate. And that is the thing that is just a deterrent to you being able to be successful in recovery. And I believe that the Hushabye program and our peer supports are able to build up that trust little by little. I always say get the families, get a little W, a little win and you get 3 or 4 little Ws, it’s that all of a sudden you have that big capitalized, capital W that big win and that big win, maybe we, you know, got you into detox or we send baby home with you or your DCFs case is closed. Nothing better than getting on one of our groups. We hold about 50, 50 to 60 groups a month, depending on the month. But getting in a group and just doing that celebration in the first five minutes of my case is closed. Here’s my letter. And, you know, and they’re holding it up virtually or they have it with us, with them and they’re showing us, does this really say that it’s close? And it’s like, “It does. You did all of this work.”
[00:23:05] Narrator Many of the women who use services like Hushabye Nursery or Heart Rock face barriers to care and access.
[00:23:11] Tara Yeah, the barriers that families encounter are enormous and they’re continuous. It can be anywhere from transportation. How do you get to the hospital having no phone? You know, insurance companies will say, well, we provide them with phones. Okay, but do you provide them with electricity to charge their phone? Do you provide them with the ability to go pick up the phone? Our insurance companies or Medicaid will pay for transportation to and from behavioral or medical appointments. But what’s interesting is our families, after they have their baby and the mom is discharged, baby is still in the hospital. Insurance will not pay for that mom to go visit that baby because the baby’s the client. It’s not the mom going to the hospital to get treatment. And so, many of our families get dinged by the hospital, by child welfare, saying “you didn’t visit your baby.” Okay, but they don’t have a car. They don’t have transportation, they don’t have electricity to charge their phone to be able to call, to get a ride. They don’t have jobs. All of those things. Stigma is a huge barrier to care. If you go somewhere and you don’t get treated well, why would you go back? And so I used to, when I was in the hospital, I didn’t understand opiate use disorder or substance use disorder and I can’t say I totally understand. I learn every single day, but when I really didn’t get it, I would be like “this mom only got one prenatal visit,” and now I know when I’ve talked to families, I’m like, what was the barrier to getting you to your visits? And they’re like, ” they were so not nice to me. I do want to go back.” And I’m like, so they went to one appointment, but they didn’t go back because who would want to go back and get treated poorly? Many of my families don’t understand that they have that option to switch providers, to switch hospitals. They just have no clue that it’s an option. And so Hushabyes able to help them, or direct them to certain providers or hospitals that have been noted to be very trauma informed and treated other families well. So we have a mommy and daddy recommended provider list. Mommy and daddy recommended hospitals. Depends day, time, what staff is on, how they’re going to get treated. But there are definitely ones that are, more compassionate and meet these families where they’re at.
[00:26:17] Narrator Nikole has experienced some of these barriers firsthand. Her daughter was not allowed to stay with her at the recovery house where she was detoxing.
[00:26:26] Nikole So when I went to detox, my daughter stayed back with her dad, who was currently in active addiction. She came for a visit with me, and she hadn’t eaten. There was no food in the house. There was no clothes in the house to start school the following day. So I ended up keeping her with me at the recovery house. They didn’t allow children, so she had to go to foster care. She stayed in foster care for a year. But the difference I see from that to what’s happening here is I transitioned from not being a full time mom to being a full time mom. So that was a huge transition. It was very difficult. Just to take all those responsibilities on at once. At Heart Rock, they allow you to have those responsibilities and work with someone to have support, to be able to do those things. Thank God I had a foundation to be able to do so, because it’s a hard transition. But I did get to reunify with my children. Some of the women here at Heart Rock, recently we had a woman come in, she was on supervised visitations with her son. Recently, her case was just closed, and our son lives with us. Another success story, same mom, four year old child was in the termination parental rights status. She’s went to work. She’s dug in. You know, she’s had some challenges along the way, but she didn’t give up. She has now been reversed to reunification with her daughter. So those are huge stories that you don’t hear a lot of because you can’t do it alone. I mean, it’s been proven. The 12 steps are evidence based.
[00:28:05] Narrator There is still a lot of stigma mothers with a history of opioid misuse face and seeking care.
[00:28:11] Nikole The stigma in health care is still very much real. Very much real. I recently had a resident who delivered and self disclosed when she got there and was red flagged. Immediately social work came in and she had over a year of recovery. So it is there. And you know, she was kind of treated differently. But here’s the odd thing. She was prescribed narcotics. And she had asked them not to prescribe anymore. She did have a C-section so some of it was warranted. But when she had asked them to not prescribe her anymore, they were reluctant to stop the medication. So it’s kind of a double edged sword there.
[00:28:53] Justin There is plenty of stigma as it relates to being a woman with substance use disorder and being a mother, and especially being pregnant, because some of these women have only found recovery into their pregnancy. So perhaps they did use substances during their pregnancy, and/or they have previous instances of losing children to the Department of Child Services. So they’re flagged in that way within the healthcare system especially. So we work really hard, which is one of the reasons why we provide an advocate during those appointments and during those. Birth deliveries, because there’s a very large amount of stigma around someone who uses substances in 2024.
[00:29:39] Tara Do I feel that stigma is ongoing? I do. I think we’re getting better. I think at times you go, “Oh my gosh, this all went good. It’s working.” But do our families hit barriers over and over and over again? I have families that are not going to tell their kindergarten teacher that their baby was substance exposed. Even if it might help their little one. They know the implications of this teacher knowing that they struggled with substance use. That is just a ding and it’s just not going to be good. And so is it later on in life that they’re stigmatized? Yes. Medications for opiate use disorder are very stigmatized, even stigmatized in those that struggle with opioid use disorder, you see those individuals not being a support. But health care workers. Community members. We just don’t understand. And at times that I find that I’m like, “Oh I just said that. That didn’t come out right.” Or I said that and I didn’t know that it was me being judgy. And then when my families say, when you said that this made me feel this way, I’m like, I had no idea. Now, do they feel comfortable with me? They do, because they know that I’m like, I am learning and I need you to tell me if I say something wrong. And if there’s something that makes you go, “I don’t want to come back,” I need to know, because otherwise that’s a barrier that we will never, ever overcome. And they’re really good at going, “when you said this, this is how it made me feel.” But how do you build that trust? You build that trust by meeting where they’re at. And our community is not meeting those that struggle, where they’re at, always.
[00:31:55] Narrator: Once mothers and families leave these facilities hushabye and Heart Rock, along with their community partners, set them up for continued success.
[00:32:03] Tara Yeah, our community partners that we use are full range from housing, food, transportation, to employment. Helping someone, get their diploma. Helping them write a resumé. We’ve helped someone get a tire fixed because they just couldn’t get to their job. They didn’t have extra funding to be able to do that. We’ve helped get windows fixed in their house, because the Department of Child Safety said that it wasn’t safe unless the window was fixed using different community partners. Helping them fill out a one page application to get that $100 to be able to fix something, that it’s such a big barrier, that to me it would be here’s $100, fix it, get it done. To our families, they can’t, they don’t have the hundred dollars to fix it. Which means unfortunately, if they didn’t have Hushabye that baby would go to foster care because the window wasn’t fixed, and we’re able to do that. I would say on average when we meet a mom or dad, on average, the very first meeting, there’s 3 to 5 referrals to community partners, food, you know, you need rental assistance, you need electrical assistance, whatever that looks like. We partner with different food banks to make sure that our families have food while they’re here. We partner with the diaper bank to ensure that we have enough diapers on site for families and for the babies. We definitely have a niche, and we don’t need to overstep. We need to just stay and do what we do really well and use community partners for what they do so so well.
[00:34:10] Narrator Tara, Justin and Nikole all stressed that there is a lot of work that still needs to be done. Hushabye Nursery and Heart Rock Justus Family Recovery Center are among a small group of facilities that exist that keep families struggling with opioid dependency and babies together. Many women are still afraid of being stigmatized or mistreated by health care providers and face barriers to treatment. There needs to be more education for health care providers, families and the general public about the needs of mothers, babies and their support systems who have been affected by the opioid crisis. Thank you for listening to this episode of Countermeasures. To learn more about what Emergent is doing to help address public health challenges like the opioid crisis, visit emergent biosolutions.com. If this episode resonated with you, consider writing and reviewing countermeasures on your preferred podcast platform.