Dr. Rebecca Dekker – 00:01:00:
Hi, everyone. On today’s podcast, we’re going to talk with Mary Farrelly a certified NICU nurse and founder of The NICU Translator® about how doulas can support families as they navigate the NICU. Welcome to the Evidence Based Birth® Podcast. My name is Rebecca Dekker, and I’m a nurse with my PhD and the founder of Evidence Based Birth®. Join me each week as we work together to get evidence-based information into the hands of families and professionals around the world. As a reminder, this information is not medical advice. See ebbirth.com/disclaimer for more details. Hi, everyone the countdown is on. On Tuesday, April 29 we’re hosting a live 90-minute signature training and Q&A where we’re tackling one of the most controversial yet critical topics in newborn care, Vitamin K. If you’ve ever wondered about the research evidence on Vitamin K and how that stacks up against the myths and misinformation surrounding the subject, this is a training you need to attend. We’re bringing evidence-based facts to the conversation and giving you the space for you to ask your biggest questions. But, here’s the key. This April training is exclusive to Evidence Based Birth® pro members. Right now you can join the EBB pro membership for just $29 for your first month and lock in a special discounted rate if you decide to stay past your first month. Not only will you get access to this signature training on Vitamin K on April 29, but you’ll also unlock courses with up to 27 nursing contact hours, 18 contact hours that can be applied to the CPM and CNM credentials, doula mentorship calls, midwife mentorship calls, a library of printer friendly PDFs to share with your clients and a supportive community where you can ask questions from our research team. So, are you signed up yet? Go to ebbirth.com/membership to join today for only $29 and get your invite to our signature training on Vitamin K. I hope to see you on Tuesday, April 29 and as a head’s up if you miss the signature training or can’t make it our pro members always have access to the recordings.
Today, I’m so excited to welcome an expert guest to the EBB podcast. Mary Farrelly is a certified NICU nurse, a doula, nurse educator, and founder of The NICU Translator®. With more than a decade of experience as a level four neonatal intensive care unit nurse, Mary empowers families and professionals through evidence-based education, individualized doula support in the NICU, and special training programs for NICU-informed doulas. Passionate about reducing trauma and enhancing the NICU experience, Mary is dedicated to helping families and support professionals navigate the NICU journey with confidence and compassion. Mary, we’re so happy to have you here, welcome to the Evidence Based Birth® Podcast.
Mary Farrelly – 00:02:26:
Thank you. I’m so excited to be here.
Dr. Rebecca Dekker – 00:02:29:
So Mary, I was wondering if you could start off by sharing with us your journey to becoming a NICU nurse.
Mary Farrelly – 00:02:36:
Sure. So. Like lots of people, my journey to where I’m at was a little bit of a more of a winding path. Initially, I was an undergraduate as pre-law and I minored in Italian, which was like not something I use currently. But as I went through nursing school, I really, or not nursing school, as I went through my undergraduate degree, I realized that I had gotten bit really hard by the birth bug. And I was just really excited about the idea of becoming a nurse midwife. So I went back to nursing school as a second degree BSN student. With the intent of becoming a nurse midwife. And during that time is when I did my first doula training. So I became a professionally trained doula. And during nursing school, I served as a community doula with low income and teen moms. So that’s where I started my doula work. But then when I graduated, the only new graduate job they had at the time at the hospital I wanted to work at was in the NICU. And I was like, oh, I don’t know. I guess I’ll do it for a year and then maybe transfer to L&D and then go back and continue my nurse midwifery journey. But that was just about 12 years ago, actually, in next week when I started my NICU job. So I never looked back. Those little babies just wrapped me right around their fingers. And the impact of the NICU experience and the continuity of care and the relationships I can build with families has just been really my purpose. And these are my people. So it has been kind of a winding road. But looking back on it, I can see how I got where I was. But it was kind of a journey to get here.
Dr. Rebecca Dekker – 00:04:10:
Yeah, you didn’t expect that this is where you would end up. And how did you get bitten by the birth bug as a college student?
Mary Farrelly – 00:04:18:
So I actually think it goes way back. I used to be that kid that was like pretending to birth my friend’s babies as we played. And I would be like, you know, coaching them and patting their hair. And I just loved the idea of being that person for somebody in like a really vulnerable time. And so I’d always had it in the back of my mind, but never really thought that that was like, quote, like a good career, you know, like, I was like, I’ll be a lawyer, like, that sounds good on paper. But then when I really got I did an internship in a law firm, and I was like, I can’t sit behind a desk all day, I need to be like, boots on the ground with the people. And realized that during nursing school, like really spending some time volunteering in different organizations through, a group that was in and like working with pregnant women, I was like, okay, yeah, this is where I need to be. And I just kind of followed my gut. And, and it led me to where I am.
Dr. Rebecca Dekker – 00:05:14:
I’m always in awe of how someone can go straight from nursing school to being in the NICU, because it’s not like all nursing students have a NICU rotation. You know, they might get a chance to shadow in the NICU, or if they’re lucky, they might get selected to have a special training in the NICU. So what was that like for you as a new graduate nurse in the NICU?
Mary Farrelly – 00:05:35:
It’s intimidating, as you said, like I, in nursing school, I spent maybe four hours shadowing. Fortunately, in nursing school, I also worked as a care partner in labor and delivery. So I did get to take some families to and from the NICU. And I was at some NICU deliveries, but as like a, you know, like an undergraduate baby nurse. And I found it just like, I remember watching those NICU nurses walk in and just take charge and take care of this incredibly fragile baby and be like, wow, they’re so cool. But as a new nurse, it is really humbling to realize how much influence you have on such a tiny life and a patient who doesn’t have a voice either. You know, they can’t tell you what’s hurting. They can’t say, help me. You have to be that person to really advocate for them and be their voice within the medical model of care. So there was a steep learning curve, though. There’s so much just content and knowledge. Basically, everything you learn in nursing school is wrong with babies or it’s the opposite. Not everything, but vital signs and disease processes and how their body parts work. So I was fortunate to be in a hospital that had like a pretty rigorous new grad program. And so I got that education that I needed to really have a solid foundation. But I remember showing up to work every day being like, oh, my gosh, like, are you sure? Is this OK? But NICU nursing is tends to be like a pretty strong support system. And we’re always team baby first. So no one is going to let anything fall through the cracks or anything. We’re here just to support each other.
Dr. Rebecca Dekker – 00:07:16:
Yeah. Were there any families in particular that impacted you as a new nurse?
Mary Farrelly – 00:07:21:
Yeah. I was thinking about these stories and kind of reflecting back because some of these early babies that I took care of are now in middle school, which is wild to think about too. But there was one family in particular and their baby was born, I think like 24 and two and was very, very small, less than a pound at birth. And the dad-
Dr. Rebecca Dekker – 00:07:44:
Born at 24 weeks, which is like what, like the sixth month of pregnancy or so?
Mary Farrelly – 00:07:50:
Roughly, yes.
Dr. Rebecca Dekker – 00:07:51:
Yeah.
Mary Farrelly – 00:07:51:
Yeah. So very, very, very small, very fragile, very high needs, high intensity, needing that intensive care. And the dad came in and we always encouraged families, even from the beginning, to bond with their baby with touch and participating in their cares. And he was just like, I cannot touch. I’m going to hurt my baby. And like having this big, just fear block of intimidating by just the medical equipment and everything going on and just this fear of hurting their child. And he was adamant. He’s like, nope, I’m not going to do it. But I had primaried this family, which is a cool model of care that is you kind of unique to the NICU where they’ll assign the same nurse. If you kind of vibe with the family and it’s a mutual decision, you’ll be able to be that baby’s nurse every shift that we’re there. So you can really follow that baby’s journey. Because if you’re born at 24 weeks, you’re going to be in the NICU for months at a minimum, sometimes up to a year or longer. So I remember he came in one day. It was maybe like six weeks later and he was just like kind of like hovering at the isolate. And I was like, are you ready to touch him? And he’s like, no. I was like, you can do it. And so we really just bonded together and got his hands in there. And his face was just like lit up, just changing his baby’s diaper for the first time. And then looking back on it, that same dad now sits on the hospital’s family advisory committee and is there to support new dads and new parents through the same experience because he lived it so deeply. So it’s this full circle moment. And I realized the power of empowering parents in taking care of their babies and that the whole point of the NICU is not for me to take care of them. It’s to have the family take ownership of their parent role and prepare for life after NICU, even in those early hours and early days at the bedside where you’re like, okay, there’s a long journey ahead of me. But the power of the family is still the most important piece of the NICU experience.
Dr. Rebecca Dekker – 00:09:56:
In talking about education, advocacy. What role does emotional support, social support, informational support play when you’re caring for NICU families as a nurse?
Mary Farrelly – 00:10:08:
It is a huge piece of the work that we do or the goal of the work that we do because in the NICU, your patient is the baby. But your secondary patient is the family. And so, ideally, we’re able to really have those moments of connection and education and empowering and really also offer that active listening to help manage some of the emotional burden of being in the NICU. The tricky piece comes in,in two layers. One is that NICU nurses, typically we have really intense and really excellent training on the medical care of these fragile infants, but we don’t have the specialized typical like postpartum knowledge for caring for a postpartum family. A lot of it’s like learning on the job and kind of through experience and hearing from what different families need. And then at the end of the day, we are still first and foremost, the baby’s primary caregiver and the focus is on the health and wellness of the baby. So if a family, if a baby is having intense medical needs, we’re always going to have to prioritize those over the emotional and support needs of the family. And sometimes with different staffing issues and acuity, it can kind of fall through the cracks, which is a gap that I have always seen in my NICU stay. Knowing how I want to show up for families, knowing the right thing to do, but just not always having the time or the resources to do it in a way that I know it needs to happen, which is kind of how I like to pull in this idea of having doulas or other support professionals who can understand the NICU experience with evidence-based knowledge and trauma-informed support so they can also show up for that emotional and postpartum physical needs also of the family so that there isn’t this huge gap in care that we often see at the bedside.
Dr. Rebecca Dekker – 00:12:01:
Yeah, that makes sense. And you mentioned two major factors that make it difficult for you to, you know, really provide emotional support for the whole family. One was acuity, which, you know, some of our listeners might not know what that term means. So could you kind of… tell us in lay people terms what that is? And also, you know, how does that relate to gestational age? Like what role does gestational age play in the NICU journey?
Mary Farrelly – 00:12:25:
Sure. So one of the common myths that I hear, even from new nurses that come into the NICU, is that the NICU is more like sunshine and rainbows. It’s like cuddling babies and snuggling them. And there are different levels of care of the NICU, which is something that also is not super common knowledge. There’s a level one, two, three, and four levels of care. So a level one or level two NICU is going to be more of that special care nursery where they’re just kind of babies that are learning how to feed, maybe need some temperature support. But they’re not particularly critically ill. They just need time and support to kind of get to that next level. Level three NICUs have the capacity of taking care of almost every type of patient of newborn that comes in that needs extra medical support or monitoring. But level four is the top level of care. So these tend to be regional medical facilities or children’s hospitals. And we get very critically ill infants. People forget that NICU stands for neonatal intensive care unit. And a lot of these babies, especially as you mentioned, those younger preemies, so those babies born at a younger gestational age, need a lot of one-on-one. Individualized care and medical support to get them to that point where they can be discharged or in that what we call feeder grower category where they’re really just practicing skills before they can be discharged to home. But acuity by definition means how basically how sick or how high needs medical needs that particular patient or the unit in general can have. So if we have a lot of sick babies with a lot of sick needs at one time, the emotional and the physical support of the care team is going to be prioritized on them for that time being until they can be stabilized. And then there’s more room and more breathing room for offering different types of support for other families.
Dr. Rebecca Dekker – 00:14:20:
And so like intense medical needs might include like different breathing support.
Mary Farrelly – 00:14:26:
Yeah.
Dr. Rebecca Dekker – 00:14:27:
Tubes coming in and out of the baby’s body. Like, like what all is going on with such a tiny.
Mary Farrelly – 00:14:32:
Sure. So the other thing to think about when we’re thinking about the NICU is another myth sometimes is that all the NICU is preemies. And it is not. About 65-60% of NICU patients are premature, so born less than 36-ish weeks. The new standard of care for most level 4 NICUs is to resuscitate or offer resuscitation as low as 22 weeks gestational age, which is a very, very medically fragile, very small infant.
Dr. Rebecca Dekker – 00:15:02:
And that pretty much can only happen at those level four.
Mary Farrelly – 00:15:05:
Typically, yes. If you are a person who’s being faced with this decision, you want to make sure that you’re at a facility, if this is an option that you want, that offers that or has the capacity to offer that type of really individualized care. We call those babies, those 22, 23 week patients, nanopremies. So like one step below a micropremie. And they have their whole, a whole nother list of needs. But when you have, and then the other half are term infants who also need support transitioning or have congenital differences or infections or other things going on. But the general clinical picture. For most babies in the NICU, one of the main reasons why they’re there, whether they’re term or preemie, is having a hard time breathing. So that’s respiratory distress syndrome. And those babies will need different types of breathing support depending on how severe their respiratory distress is. So they might need a breathing tube, which is being intubated, having a tube that goes down in their trachea and sits right above their lungs and gives them direct breath. Sometimes they might need CPAP, which is kind of like the same thing that grandpa might have, but a little bit different, offering pressure and oxygen. Other times we wean them down to more of like a high flow nasal cannula. So just two little prongs in their nose, but it’s offering support until either their lungs heal if they’re a term infant, or they just get big enough and strong enough to breathe on their own if they’re a preemie. And then the other big barrier oftentimes is feeding support. So a baby that’s born premature or even a term infant in utero, those systems are just kind of on cruise control. Like they’re growing physically, but the placenta and the maternal blood supply is doing all the work really. So the lungs aren’t breathing. The GI system isn’t digesting. The heart’s beating, but it’s not really focused on maintaining its own blood pressure. And then when the baby’s born and cut off, it’s like all systems go. So a premature infant really needs support and allowing their body systems to really catch up. And you get to witness the same growth and development that would be happening inside a belly outside in the NICU. So they’re going to need typically a feeding tube, a lot of IV support to give them nutrition as a bridge. Every baby will have leads on them that are monitoring their heart rate and their oxygen. Preemies are especially notorious for holding their breath. So we are always watching for that. And then depending on other things, they might have other equipment and stickers on. But it tends to be kind of like a… a louder, more intense environment because of all this specialized equipment that these babies need to continue to grow and develop.
Dr. Rebecca Dekker – 00:17:38:
Yeah, I can see how that would be overwhelming for a parent.
Mary Farrelly – 00:17:42:
Yes. And all the, if you’ve ever been in the NICU, there’s a lot of alarming and they all sound like an emergency. And until you know to differentiate, well, that’s, you know, that’s just the bed saying the tent probe came off versus like, this is an actual, like nurses come to the bedside now. It can be so scary for a family to hear all those noises and be like, okay, what’s going on? What’s this one mean? What’s this one mean? So it is really, it’s over-stimulating environment. We try to mitigate it as much as possible, especially for the babies, because we’re trying to recreate kind of an in utero environment that promotes neurodevelopment and, um, gross motor development and bone growth and all those good things that would be happening inside the uterus, but the nature of it is that they’re still in an intensive care medical setting. So it’s still an overstimulating space at times.
Dr. Rebecca Dekker – 00:18:35:
Again, kind of underscores the importance that you mentioned earlier of emotional informational support for families and kind of those needs there. One other thing you mentioned that kind of stuck out at me is you said the words like staffing shortage. So can you talk a little bit like are staffing shortages occurring in NICUs and what impact do they have on families and patients?
Mary Farrelly – 00:18:57:
Yeah. So I’ve, as I said, I’ve been a nurse for over a decade. And nursing through the pandemic was a really intense experience, even especially sometimes in the NICU because of visitation restrictions and a lot of unknowns that we were dealing with, with how this was going to impact babies and pregnant people and all the different layers of that. So we created this kind of turmoil within staffing where a lot of nurses felt like they were not being supported by the healthcare system or compensated appropriately. So then a lot of nurses turned to travel nursing, which has created just a very different environment for what bedside nursing looks like compared to what it was pre-pandemic. And how that’s kind of, when I’m seeing it really manifest as, is still a lot of turnover and also having… I don’t have the exact data to support this, but I feel like we’re having sicker patients too. Like we’re having a higher level of acuity. And potentially lower ratios of staff to be able to support them. So we can just feel different than it was before. And I do feel like it’s improving. The healthcare systems tend to be a lot more recognizing of the vital role that bedside nurses play in delivering and allowing for healthcare outcomes that are positive and good for their statistics and all the things that metrics that the executive suite might care about. But the reality of bedside nursing is that there are days where we are short staffed or the staff that we have is maybe not as highly specialized in NICU nursing. And so we have to get a little creative with how we move assignments around and shuffle babies to different maybe parts of the hospital. So it doesn’t always feel good to be on the other side of that. Both as a nurse, it doesn’t feel good. Because you know what you want to be doing and you know your ideal day and what that looks like. And also for families, because it can feel hard to build those relationships with nurses and feel like this sense of stability and trust with the medical team. So it is evolving, but it is still, it’s the current reality, especially in the US of what bedside nursing and healthcare looks like today.
Dr. Rebecca Dekker – 00:21:22:
Right. I can see how, like communication skills, advocacy skills, and having support from someone like a doula or somebody else who could help you navigate, that would be even more beneficial with staffing shortages.
Mary Farrelly – 00:21:34:
For sure. Especially since unlike a nurse or even a doctor, you are choosing your doula. Like you are picking that person. You’re making that connection and you’re having this like mutual agreement. Like I’m here for you. I’m here for your baby. I’m not here for whatever health system or bound to the charting team or whatever it is that a medical professional still has to be beholden to, I guess. So it’s a very special relationship. And there’s that continuity of care that doesn’t exist as the same way with the bedside nursing or the other medical professionals.
Dr. Rebecca Dekker – 00:22:13:
If there’s shortages, yeah. And you painted this picture in the beginning of the primary nurse and how you bond with your baby’s nurses. And then we have this other side of the coin with shortages and travel nurses and not really knowing from day to day who’s going to be with your baby and can you trust them. And then the doula role, which I want to get back to in a minute because I think a lot of people are confused how the doula might be able to help in the NICU. But before we get to that. I want to know what is the number one question that families ask their NICU nurse?
Mary Farrelly – 00:22:48:
That’s a great one. Then hands down, the number one question I get, even from the second that a baby is admitted, is when can my baby come home? They want to know, like, how long are we here? What is this going to look like? Where’s the light at the end of the tunnel? And that’s a really hard question to answer, especially in those early days. We can give an estimate based on, you know, what the baby’s clinical picture looks like and their gestational age. But… every baby is so unique and some babies might be out weeks before our guests and others might need a longer time to adjust and have those skills to be able to survive and thrive at home. But the average is if you have a preemie is we estimate that your baby will likely be discharged around their due date. And then the things that they need to do to discharge are pretty universal. So they need to be able to breathe either on their own or with a type of respiratory support that can be used at home. They need to be able to stay warm without the use of an incubator or isolate or radiant warmer. They need to be able to stay, maintain their own temperature, and they need to have a safe feeding plan. So for many babies, that looks like breastfeeding, bottle feeding, but some babies need to go home with some type of feeding tube support as well. So those are the three universal things that every NICU baby needs to have a plan for in order to be able to be safe to go home.
Dr. Rebecca Dekker – 00:24:13:
Does it sometimes feel to parents like it’s taking longer than it should?
Mary Farrelly – 00:24:17:
Yes.
Dr. Rebecca Dekker – 00:24:18:
To get discharged?
Mary Farrelly – 00:24:19:
100%. The hardest piece of the NICU puzzle for most babies is feeding. Because you’re through this high acuity stage, the baby’s no longer has, a lot of those tubes are no longer there. But they are having maybe taking a longer time learning how to eat by breast or bottle. And there’s no course you can sit down and baby be like, let’s sit down today and we’re going to learn how to bottle feed. If there was, it would be great. But we have to follow that baby’s lead and those cues and their emotional and their developmental readiness and their respiratory readiness. And it can feel painful for families because you just want to be like, just take the bottle. Let’s breastfeed. Let’s do this. Let’s get out the door. And there’s no… babies are on their own timeline. And it can feel very, very… Those last days can feel really, really slow. But then all of a sudden, it tends to happen quickly. After like a week or weeks of these like progressive feeds, all of a sudden, they’re taking all their bottles. And you’re like, you’re going home tomorrow. And you’re like, what? I’m not ready. And you’re like, well, we kind of are. But it can feel that way oftentimes. It’s this like slow, slow, slow, slow, slow. And then in an instant, you’re done with your NICU journey. On paper, you know, the actual physical NICU journey, the lived reality of your NICU journey tends to extend well beyond discharge. But it can be like a pretty quick turnaround a lot of the times for families.
Dr. Rebecca Dekker – 00:25:51:
Yeah. So after wanting so badly to take your baby home, then all of a sudden, what are sometimes these families facing at home with their NICU graduate baby?
Mary Farrelly – 00:26:02:
Yeah. I was also thinking of a story. I remember as a newer nurse, I got a report and was like, okay, we’re going to discharge this baby home. And I went through my new nurse discharge checklist. And I was like, we did this and we did this and we did this. And we did our final sign-off. And the mom was just sitting there with their baby. And I was like, you can go. And she’s like, I can’t go. And I was like, no, you can. We signed the paperwork. She’s like, no, I can’t leave. I don’t know what to do at home. I’m really scared. Because you go from 24-7 nursing care, continuous monitoring. If you have a question, you can literally turn to your side and ask it. To being back to being in charge and being your baby’s advocate. And there are a ton of support resources on the outside, but it’s a little bit trickier to navigate them and find the right ones and find your path. So that was really eye-opening for me too and was a really formative part about why I do the work that I do. But typically after NICU, especially if your baby was there for more than a few hours. You’re going to be seeing a lot of different professionals on medical appointments. You’re going to have a pediatrician, maybe some specialists. Maybe you’re in a NICU follow-up clinic, developmental. You’re still seeing PT and OT. There’s a lot of appointments and a lot of time management. There’s also still a lot of anxiety typically about making sure a lot of times it’s around feeding or growth, nutrition, meeting milestones. Not quite. Making sure that also the anxiety of potentially having to go back to the hospital and avoiding that at all costs. So making sure like a lot of families are really concerned about germ exposure and illness. And so it’s just, it’s exciting and joyous and people are just thrilled to get out the door. But as you said, a lot of times I’ll have families that come home and even within a few hours, like, okay, like this is different. This is very different. And it’s like a new chapter and there’s not a whole, there’s not currently a really good bridge between the actual physical NICU and home. A lot of times families are turned over basically to being supported by their pediatrician and outpatient teams. So you can’t really go back. To the NICU.
Dr. Rebecca Dekker – 00:28:21:
In the US, we don’t really have like, home visits often?
Mary Farrelly – 00:28:25:
It depends, if you have a baby going home on medical equipment, they’re likely going to qualify for home health visits.
Dr. Rebecca Dekker – 00:28:33:
Okay.
Mary Farrelly – 00:28:33:
Um, it is also still tricky, like working with families that are discharged. If you live in certain pockets of the United States, maybe more rural, especially there are, sometimes you might qualify for home health nurses, nursing, but you may not have any home health nurses, pediatric home health nurses in your area that can deliver the care. So I’ve seen that quite a bit where I live where yes, you qualify, but there’s no one to come do it. And then some NICUs are better at offering like really good bridge to home. Like you’ll have like a nurse come back in for a week or two or do discharge visits, but it really varies on who qualifies for that. So I often see those like middle of the road NICU families that maybe didn’t have a super high acuity NICU stay, but it still disrupts your postpartum experience and your journey to parenting. Even if you’re there for four hours, it just feels totally different. And it frames your journey into postpartum parenting very differently. So those families typically don’t qualify for those same type of resources. But they still have this unique story and a baby with slightly unique needs that can feel really isolating and overwhelming to navigate as well.
Dr. Rebecca Dekker – 00:29:42:
Yeah, that makes sense. And you mentioned postpartum a couple times and like the physical and emotional recovery, the mental health, you know, concerns that may ramp up postpartum. It’s all a lot. And then if you had a medically complicated birth, you know, or any trauma that you’re dealing with, it seems like so much. Do you ever see parents like, just thrive through this? Or do they all seem to have like, kind of an underlying level of anxiety?
Mary Farrelly – 00:30:11:
It depends. It depends on you. Some of it is, there’s a lot of different factors. Some is a person’s personality. Some people just see a crisis and they’re like, okay, let’s do this. So those parents tend to, on paper, like really do well during a NICU experience. They come up with a plan. They are there. They kind of understand like how it takes to support themselves. And they’re in that like boss mode. Yeah. Those are the families I typically see though. They sometimes, once things settle down in their home, maybe it’s like a month, two, maybe even a year later, then it kind of starts flooding back. And they’re like, okay, I still think I need to unpack some of this and process it. Like this was still really intense and hard. So denying the fact that it’s an emotional experience without giving yourself an outlet to release those thoughts and feelings.
Dr. Rebecca Dekker – 00:31:06:
Just kind of like bottling it all up.
Mary Farrelly – 00:31:08:
And it’ll come out eventually, no matter what. So I kind of say to families, like you can have, the other piece of it is if you have a really strong support system. Where you have people who are supporting you in ways that are truly meaningful, not like, you know, I’m here to visit you and can I hold your baby more of like, okay, like, let me help you run life. Let me stock your freezer. Let me clean your house. Let me pick up your kids from school. Um, let me be that open ear to talk to. Like you can say all those ugly things that are in your head. You can be really angry and nasty to me. I don’t care. Like I’m here for you. Those families tend to get through, like they’re, they’re going through it as they go through it. So I say to families, like, even if you have the best support system and great follow-up care, like, the actual fact of the NICU always is going to kind of suck. You know, like, you’re still physically separated from your baby and they’re struggling. So that, there’s no erasing that from the NICU experience. But what we can do is hopefully through trauma-informed care and emotional support and physical care so the family can heal, it’s going to feel less traumatic. Dramatic. It’s still going to be hard, but ideally it’s not going to have those lingering trauma because the statistics show that about 40% of NICU families currently in the current model of NICU care and follow-up have clinical PTSD after a NICU stay. And about, only about 20% of those have symptoms in the NICU. Most of those symptoms show up after discharge. And I think that’s probably deeply underreported. And then the stats around perinatal, other perinatal mental health issues. So, like, postpartum depression, anxiety, we see a lot of postpartum OCD in NICU families, too. The estimated amount is about 70% of NICU families experience some type of perinatal mental health crisis during or after the NICU stay.
Dr. Rebecca Dekker – 00:33:02:
And it can be with either parent.
Mary Farrelly – 00:33:04:
Either parent, yes, for sure. I mean, the partner’s experience during a NICU stay is really under-supported as well, too, because their own, the birthing person, they’re going through so many hormonal and physical changes. The emphasis tends to be on them in NICU visitation, especially if they’re supporting breastfeeding or other things like that. And then the partner, often, if you were, if it, a lot of NICU births, as you mentioned, tend to be not necessarily traumatic, although some of them are, but they tend to be more dramatic. Like, it’s like, okay, like, the baby’s coming early. Or we had this ideal pregnancy and this ideal birth, and now the baby’s having a hard time breathing. So the partner has this, like, bird’s eye view, and they’re watching it all from almost a corner. And there’s no one there, really, who’s like… There for them and they feel like they need to be the support person for their partner.
Dr. Rebecca Dekker – 00:34:02:
Right.
Mary Farrelly – 00:34:02:
And they don’t really have permission, yeah, to feel so they also often have lingering mental health, symptoms. That follow families long after discharge.
Dr. Rebecca Dekker – 00:34:14:
Yeah. Thank you for sharing that. Very eyeopening. When we’ve been talking about doulas and support, and you mentioned a couple times that doulas can help bridge that gap. Can you tell us, like, what does it mean to be a NICU-informed doula? And the typical doula, you know, may provide pregnancy, birth support, a little bit of postpartum support. We have full-spectrum doulas who do a lot more with that, with the lifespan. How can doulas be helpful in the NICU? Like, what does that mean to even have a doula with you? Or supporting you by text or something as you’re in the NICU?
Mary Farrelly – 00:34:53:
Yeah, there’s so many ways to be a NICU-informed doula. My own definition of this is that you have the understanding of what a lived NICU experience looks like, including some of the evidence-based guidance to create empowered and informed decision-making for families, just like a doula would do during a birth experience, maybe advocating for choices around pain control methods or where you’re going to deliver or… you know, what is the immediate postpartum experience look like? We rarely, if ever, March of Dimes did a study and about only about 10% of childbirth or prenatal prep classes even mentioned the NICU at all. But it’s one in 10 babies born in the United States have a NICU stay. So if you have a prenatal prep class with 20 people in it, statistically, two of them are going to have a NICU experience. So I like to like wind the tape all the way back to those prenatal birth planning sessions if you are a birth doula, where you bring a little just a drop of the NICU into a discussion. Both to destigmatize it. So if your doula says like, this is a possibility from a place of empowered decision-making, not from fear, not from fear mongering, not from creating anxiety and saying like, just like we’re going to plan for potentially like other contingencies and making sure that we’re still able to have informed decision-making that makes sense for my family. Let’s talk through a few questions about how that might look in the NICU. And I have a free birth plan template to have those discussions because I just want it out there. Because what I see as a NICU nurse is families coming in and be like, no one talked about the NICU. I never knew this was a possibility. So therefore I must be a failure. Like I did something wrong to cause this NICU experience when we know that a lot of times babies just have a hard time transitioning to life in the real world and they need additional support. So my goal with some of the birth planning prep is just to destigmatize it and allow families to have those thoughtful thoughts decision making. I call it like my fire drill model. So with my own birth doula clients, I’ll say like, I have a five-year-old, she goes to school, she has fire drills regularly. And it doesn’t mean she’s manifesting a fire. It just means that if they do have a fire, she has a plan in place and everyone’s going to feel more safe and more in control. So just like that with prenatal prep, we’re going to talk about it once, we’re going to do it as a just in case, and then we’re going to pack it away and we hope we never need it. But it doesn’t mean we’re bringing it upon us and we can just kind of almost feel more empowered by having that conversation. If your client does have a NICU experience, I love to have doulas be able to feel confident in the care that they can support those families. So what I hear a lot from doulas, also from families I work with that have had doulas, it’s like, okay, I went to the NICU or I went preterm and my doula’s like, I don’t feel confident in what to say. I don’t want to say the wrong thing. I don’t know how to show up. I don’t know how to pivot my care in a way that is still meaningful to you. And so they just back away.
Dr. Rebecca Dekker – 00:37:55:
I wonder too if sometimes the doula almost feels like they themselves, like it wasn’t the perfect birth experience because it ended in a NICU visit. And so they feel maybe a sense of the stigma attached to that as well.
Mary Farrelly – 00:38:11:
For sure. I think that we’ve done so much good in the past decade plus of creating empowered birth stories and connecting, like having families see what’s possible with a low intervention birth, which I think does so much good when it is what your birth looks like. But when your lived reality doesn’t match what you were, quote, promised, it can create this even more intense disconnect and feelings of shame and guilt and compound those mental health long-term issues. Because again, it just totaled the disconnect so far. And there’s so much grief about what they didn’t get to have, which is appropriate. There’s grief. There’s often a lot of anger also in a NICU experience. But I think that doulas have such a potential role for reframing things for families and for themselves. So that it doesn’t continue to have this stigma and this long-term inner narrative that a NICU family tends to build up in their head and spiral and circle and then maybe feel like they can’t even say those things out loud because another thing I hear from families is that a lot of times the worst thing you can say to a NICU family is an at least statement. So at least your baby’s in a level four NICU. At least you can go home at night and sleep. At least, blah, blah, blah, blah, blah. Because a family just wants permission to vent and to be sad, but also grateful and joyful. Like they can say the at least statement themselves. But if someone else says it to them, it can feel really dismissive.
Dr. Rebecca Dekker – 00:39:52:
It’s like minimizes their experience. So what are a few things, say you’re a birth doula and you’re… you know, the baby is admitted to the NICU after the birth, what are some things they could say to their client just right off the bat?
Mary Farrelly – 00:40:08:
I think one of the most powerful things that you can say is like, I’ve got you. Like, we’re going to get through this together. I understand the NICU experience. Ideally, a doula will have some flavor of what that local NICU looks like, maybe visitation policies, breastfeeding policies. If the family’s intent is to breastfeed, it’s going to look very different in the NICU because most of the time, babies cannot go to breast immediately.
Dr. Rebecca Dekker – 00:40:36:
They can’t do like exclusive.
Mary Farrelly – 00:40:37:
Well, they can potentially have an exclusive breast milk diet, but if they’re having respiratory distress, they cannot physically go to breast. So a big thing that a doula can do is to facilitate pumping within those first hour of delivery because oftentimes in the chaotic delivery, a NICU delivery. That’s the intent of like a nurse or the midwife, but it’s often lost.
Dr. Rebecca Dekker – 00:41:01:
Yeah, I had a client once who that happened to and baby was born a little early due to preeclampsia and she was just recovering in like, you know, postpartum alone and nobody offered to help her. None of the nurses offered to help her pump. And so as her kind of support person, I was like, let’s do it. We need to start pumping, you know?
Mary Farrelly – 00:41:24:
Yes. And to help if you understand also what that pumping journey might look like and what the transition to breastfeeding might look like, you can help that family like get mentally prepared for it.
Dr. Rebecca Dekker – 00:41:39:
Right.
Mary Farrelly – 00:41:39:
For feel really confident in their pumping skills, and then also really helping to facilitate that postpartum experience, because you know especially this is also living, not just for birth doulas, but then there’s the postpartum doula experience too or full spectrum. Where our ideal is like that first 40 days postpartum, where they’re resting, and they’re getting nutrition, and they’re bonding with their baby, and they’re skin to skin, and all those amazing things that we know benefit the couplet, you don’t really get that in the NICU because there’s this physical separation. Sometimes you’re in an entirely different facility than your baby. So trying to recreate those moments, even if they’re snippets for a family, can be so impactful, like offering a really calming postpartum. Like even just bringing a warm heating blanket and connecting them, like the feeling of having something warm on their chest, playing calming music, taking a picture of your baby, celebrating the joy. If they need to have a good cry and be angry, be there for that too. And then helping them create a plan for postpartum nutrition and healing, just even if it means like setting it in motion with a family member, because those periphery family members, like the grandparents and the aunties and the friends, they’re also scared by an NICU experience and don’t always know how to support or don’t want to say the wrong thing. So helping to kind of mobilize their also immediate support system in a way that is impactful. Can also decrease that burden for the family so they can just focus on their own physical healing and bonding with their baby through the NICU experience.
Dr. Rebecca Dekker – 00:43:22:
Yeah, and not have to worry from day to day about how they’re going to.
Mary Farrelly – 00:43:25:
How they’re going to feed themselves. Who’s going to walk the dog? What are we going to do with these, you know, medical bills that are going to start piling up? So there’s a lot of different resources for there’s one that I recently learned about called SupportNow. And it’s kind of like mixing meal trains and GoFundMe all into one place, but there’s also a spot where people can sign up for tasks. So a family could say, can you please put walking my dog on this list? And people can do that. So they can support them in different ways. And a doula being able to just set that up and then be like, okay, I’m here for you if you need me. And maybe a text message and also a text message with no expectations. Because a lot of times… NICU families feel really overwhelmed by having to update a lot of people. So just be like, I’m here for you. If you want to talk to me, I’m literally a phone call away. Do not feel pressure to respond to me. Like I’m calling to you. You don’t have to come to me unless you need to. So because a lot of times people get really hyper fixated on medical updates and how’s the baby doing. And that can be a lot for a parent to manage that as well, so.
Dr. Rebecca Dekker – 00:44:35:
I just feel like you dropped a wealth of knowledge on us. I’m trying to remember. It was like. Supportive language, helping with lactation, getting them set up with pumping or with lactation support, giving them information about the local NICU, getting the wheels in motion for them to get support with food, educating them on their postpartum journey, kind of prioritizing the postpartum healing and then bonding with their baby, whatever that looks like. And then not putting expectations on them.
Mary Farrelly – 00:45:09:
Yes. And also reminding them of their power. Because a lot of times in the NICU, the parental autonomy is kind of flipped. And the power goes to the NICU team. So it’s one of the only places where you have to ask permission to touch your own child. It’s a very skewed environment. And so as a doula, reminding them that all those things that you practiced and thought about during your childbirth prep, you can still do that in the NICU. And if the families that roll into the NICU and are like, thank you for your care. I am still the parent. They like the vibe of the environment change shifts entirely. And it’s really beautiful to witness families that see it as more of a collaborative role with the medical team, but knowing that they are still the expert in their in their baby, they might not know the they might not be an expert in CPAP or respiratory distress, but they’re still an expert in their baby and what works best for their family. So giving them their voice back.
Dr. Rebecca Dekker – 00:46:06:
Prioritizing their baby’s comfort, too, you know, being the ones to make sure that their pain is being managed when there’s any painful medical interventions. I mean, obviously, that’s the nurse’s role, too. But as the parent, you can continue to advocate and collaborate those same advocacy skills, right? And communication and collaboration. Exactly. Another thing that you mentioned, prenatal education. It seems like learning about the NICU would be helpful for parents if they are at high risk of having a NICU stay. Can you talk a little bit about like resources you’ve prepared for parents who know they’re going to be facing a NICU stay or maybe they just had their baby and they’re trying to do a crash like education. What to expect.
Mary Farrelly – 00:46:52:
There are, as you said, there are some families that know prenatally that they’re going to need the NICU, whether it’s a prenatal diagnosis on an ultrasound or maybe they’ve had preemies and they’re super high risk for another preterm delivery or other maternal health factors that might contribute to a NICU stay. I think the best thing that families can do, if you’re pretty sure it’s going to be part of your story, is asking for a NICU tour of the unit that your baby will be in. Most NICUs do offer this, especially post-COVID now. And you can have your provider help arrange that, or you can try calling the NICU yourself and saying, hey, I am going to deliver at XYZ weeks, or I think that this is going to happen. Is it okay if I come by and see it to ourselves? Sometimes. There’s so much fear of the unknown about a NICU, but if you’ve just seen it and you maybe even see a friendly face, you might know the help, the front desk worker, that alone can be like, okay, I’ve seen her and she’s seen me. And hearing the beeps and seeing the medical equipment. Can do a lot to just… decrease the power of education, I feel like is so amazing in decreasing those fears and the overwhelm of the experience if it does happen. I also created a resource called the NICU Toolkit, which is a on-demand online bundle as a NICU 101 video. So it’s like a 45 minute crash course in all things NICU. It has the birth plan template and how to use it. And then I have this whole bundle of handout and resources about breastfeeding and pumping and bonding and all those things. And it’s great just for if it’s your NICU family, like, okay, this is going to happen or I’m brand new. And I’m like, oh my gosh, I need to hone in on this. I want to build up my skills. Or if you’re a professional who just wants to have this resource for their families. And say, hey, like I have these handouts or I have these different resources.
Dr. Rebecca Dekker – 00:48:52:
And you’ll have that knowledge about some of the things to expect that you can then educate your clients with.
Mary Farrelly – 00:48:58:
Exactly.
Dr. Rebecca Dekker – 00:48:58:
Yeah.
Mary Farrelly – 00:48:59:
So that’s the starting place to go. And then if doulas and other support professionals want to go deeper, I offer virtual online live training to really go in deeper on these different skills. Day one is all about before NICU, during NICU, and what day of life of a NICU journey looks like for a family. And then after really focuses on that transition to home and the unique needs of the NICU baby. Because the thing that we sometimes also forget is the families are going through the NICU, but the babies are having their own lived experience in the NICU too. So they also have very unique needs that are different than the quote, well-baby trajectory that. Having a better understanding of those needs and those kind of nuances and differences, not just for preemies, but for any term infant also who had a NICU experience, it’s just different. So understanding those two can feel really empowering to be able to advocate for your baby, knowing the differences between a regular baby’s journey and someone who experienced the NICU.
Dr. Rebecca Dekker – 00:50:01:
Yeah, I always think of the little kid I knew who had spent the first couple months of his life in the NICU and his mom telling me how he could only fall asleep when there was noise.
Mary Farrelly – 00:50:11:
That is so common. There is a… YouTube video called, I think if you just Google NICU noises, and it’s just the sounds in the NICU, it has like 150,000 views or more, because it is not a lot of babies that becomes their lullaby. Like white noise.
Dr. Rebecca Dekker – 00:50:28:
Their white noise.
Mary Farrelly – 00:50:29:
Yeah. It’s their home environment noise. So going to a totally quiet room that’s pitch black is going to feel very, very different. And maybe that feels overstimulating. So kind of that is something we kind of talk about is like learning the nuances and how different stimulus feel for babies and how that might manifest and how they try to communicate with you.
Dr. Rebecca Dekker – 00:50:51:
Is it the painful things they experienced and how that might impact their future reactions.
Mary Farrelly – 00:50:56:
Yeah, it’s very… unique beginning. And so it’s helpful to have that information to be able to show up in a way that feels good for that family and the baby.
Dr. Rebecca Dekker – 00:51:08:
So Mary, where’s the best place for people to go if they want to find these resources or learn more about the work you’re doing?
Mary Farrelly – 00:51:14:
Sure. So I am on Instagram. That’s my favorite place to chat with people @thenicutranslator. Then all my resources are online at thenicutranslator.com. I have the courses, I have some free workshops, I have a blog, and my goal for 2025 is to start a podcast. So look for that there. So I’m hoping to have a lot of good like just NICU education and tidbits and bite-sized pieces for families and doulas and other professionals who just want some knowledge on the go.
Dr. Rebecca Dekker – 00:51:43:
And the birth plan worksheet for the NICU.
Mary Farrelly – 00:51:45:
The birth plan is on the website. Yep. And on my Instagram is a free download. And it’s just a PDF template. And it has the Canva link too. So if you want to edit it. Put it in your birth plans, use it, do whatever you need to. I just love the idea of having that out into the world and the impact of having an informed parent coming into the NICU stay and what that might do to change their whole NICU journey. It’s so exciting.
Dr. Rebecca Dekker – 00:52:08:
That’s incredible. Thank you, Mary, so much for your work and for all of the nuggets of wisdom you dropped with us here today.
Mary Farrelly – 00:52:15:
Thank you so much for having me and giving me the opportunity to talk about the NICU.
Dr. Rebecca Dekker – 00:52:19:
All right, everyone. Thanks for listening and we’ll see you next week. Bye. This podcast episode was brought to you by the Evidence Based Birth® childbirth class. This is Rebecca speaking. When I walked into the hospital to have my first baby, I had no idea what I was getting myself into. Since then, I’ve met countless parents who felt that they too were unprepared for the birth process and navigating the healthcare system. The next time I had a baby, I learned that in order to have the most empowering birth possible, I needed to learn the evidence on childbirth practices. We are now offering the Evidence Based Birth® Childbirth Class totally online. In your class, you will work with an instructor who will skillfully mentor you and your partner in evidence-based care, comfort measures, and advocacy so that you can both embrace your birth and parenting experiences with courage and confidence. Get empowered with an interactive online childbirth class you and your partner will love. Visit evidencebasedbirth.com/childbirth class to find your class now.
