Inside the NICU, Part 2
This podcast addresses life in the NICU and the support that families receive during this time.
Transcript
Erika Ferraco, Executive Director, Fetal Health Foundation: Hello and welcome back to the Fetal Health Foundation’s podcast, More Than Nine: Real Talk on Life Before, Within and Beyond the Womb. We are here to tell the real stories of pregnancy, but not just pregnancy. As we think of this typical nine months, we are here to explore the full arc of pregnancy and parenthood.
Everything from free conception planning to complex fetal diagnoses, grief advocacy, and beyond. We aim to have real conversations with parents, with healthcare providers, and with change makers who are helping us tell these stories that. Have often gone untold with these quiet triumphs and hard truths.
This is a space for honesty, for courage, and for connection. We want to celebrate the highs. We want to honor the lows, and we want to hold space for every part of the pregnancy journey. Because pregnancy does not begin at conception nor end at birth. It is truly more than this typical nine months that we think of.
If you joined us for episode one, you heard some amazing background about the NICU. What is the NICU? What does it even stand for, this neonatal intensive care unit? What happens in there? Dr. Celeste Poe is here with us again today to take it a step further into what Stanford is offering their NICU patients and, learning what they offer.
They have one-on-one counseling, group support, post discharge care, and how it’s built to meet families where they are. Because not everyone comes into the NICU in the same place. Not everyone is dealing with the same thing with their baby, and not everyone goes home to the same situation.
Whether you’re a provider, a parent, or just someone who cares about supporting families, this is an inside look at what true holistic NICU mental wellness looks like.
Dr. Poe, thank you so much for joining us again.
Dr. Celeste Poe, Director of NICU Mental Health Program, Stanford Children’s: Thanks for having me again.
Erika: Dr. Poe is the medical director of this program at Stanford, and I’d like to start there if we could, just talking a little bit about how did this program get started. In the last episode, we talked about the fact that mental health in the NICU hadn’t been really thought about. So what was the catalyst or maybe the “aha” moment that sparked this idea and led you to developing this program?
Dr. Poe: Yeah, such a great question. I think that, in honor of NICU awareness month, I think really noting that, we really don’t see a lot of NICU psychologists in the vast majority of hospitals. And so, most NICUs, if there is mental health support for parents, it’s being staffed likely by a larger hospital team that sees children and families throughout the hospital. So it’s not necessarily people who specialize in this population but typically called a consultation liaison team in the hospital who provides those mental health services for families.
That was the case at Stanford. So Dr. Richard Shaw, who is a psychiatrist, at Stanford, was the head of our consultation liaison team. And so their team would consult for family support in the NICU. And I think in that process he really developed a personal interest in supporting this population.
And so, although that team, again supported families all across the hospital with all different sorts of medical conditions, he really developed a research program. And eventually, there was a postdoctoral fellowship established at Stanford where psychology trainees could come in and get experience working with this population.
But it still, you know, wasn’t the program that it is today, because the funding wasn’t there. The personnel weren’t there. But I think with Dr. Richard Shaw’s advocacy and partnership with many of the neonatologists in our unit, together, they really advocated for funding. And so when I started about three years ago, I was the first in my position to be based in the NICU.
Which I think made a world of difference because it meant that we could really focus on the services there. But I think there were a lot of people who saw the need in this population and really. I benefited from all of their advocacy to be able to create a position like this at our hospital.
Erika: That’s fantastic. So can you walk us through then, like what are the core services that the program does offer?
Dr. Poe: Yeah, absolutely. We are one part of the larger Johnson Center, which is the services that supports pregnancy and postpartum at Stanford. So that includes general OB, it includes antepartum, it includes the fetal center.
We are a part of that. And the nice thing is that we work pretty closely with the providers across those spaces to try to provide a continuity of care. So when we start, we specifically try to start with families who need to be an antepartum, meaning that they were hospitalized prior to giving birth, either because of a medical condition for the mom or birthing parent or a fetal diagnosis or some reason that it is not safe for them to not be in the hospital before giving birth. So when we are able to start, then we can process what it’s like to have to be hospitalized, process, what the birth experience might be like.
And then once the baby’s born, if the baby’s in the NICU, we continue to follow them in the NICU providing support. Then when it’s time to go home, we’re able to provide, some bridge therapy, until they need long-term support, if they need long-term support, and we get them connected to that long-term support.
But as you noted, the actual services look a lot of different ways. So, sometimes for families it can just be what we consider consultation, meaning that there’s maybe one thing that they’re struggling with, maybe it’s breastfeeding or something that, they don’t necessarily feel like they need ongoing support with.
But we might stop in and get them connected to any other resources that they might need. But the majority of what we do is therapy. We’re able to provide individual therapy if either the mother or birthing parent or the father or non-birthing parent is interested in working with us.
We can work with them individually. We can also work with the couple together. We can also provide support to siblings, and we can do all of those things so a family doesn’t have to choose, one way or another. There’s many times when we’ve worked with a couple, and then we’ve also worked with both parents individually because they also wanted that individual space.
It’s really a collaborative approach to discussing it with the family and what they feel like they need at the time. And then, the last piece is our group therapy program, where we provide a psychoeducational group too. Families in the NICU and our step-down unit, the intermediate care nursery.
If your baby is there, or even if they graduated and have gone home, you’re able to still attend that group and get that sort of community support.
Erika: That’s great. I’m sure that’s so valuable to people just to feel like they’re not alone. Tell me how it all gets started. Let’s say I’m a patient in the NICU and I’m there, do I have to ask or is someone looking out for this?How do you meet a patient where they are when they’re coming into the NICU?
Dr. Poe: That’s such a great question. It really helps that all of our providers and everyone who’s supporting families in the NICU knows about our program. So we get referrals a lot of different ways.
The way that we get it most often is through our social workers. We have incredible NICU social workers, at Stanford. And every family, upon a baby’s admission, gets assigned a social worker, and the social worker shares with that family that we have this service. That is meant to support families along their journey.
We really normalize it. Many, many parents speak with our NICU psychologist. You can opt in at any point. You can also opt out. It’s not mandatory. And so a lot of times, families right then and there will say, “Yes, that sounds like a great idea.” Sometimes families are there for months and they thought they were doing okay and then they get bad news or something just is not working for them and then they opt in a little bit later.
But that is probably typically what happens early on in the journey. but we also get referrals from other providers. So it could be a bedside nurse that is noticing a family is struggling. It could be a resident who was talking with a family and shared about our program or any other of the providers, physical therapists.
We get, [referrals from] our physical therapists a lot and our child life specialists. It really helps that it can come from anyone because there’s a lot of people supporting these families. So they’re really aware of our program and often we’ll share that with families. And so, thinking about how many different kinds of healthcare providers there really are involved.
Erika: How does this fit in with this medical team’s workflow?
Dr. Poe: Yeah, that’s a great question. I think that it really is an interdisciplinary approach to care, and so all of the providers really try to work with the medical team to understand what the family’s needs are from a whole family perspective and not just the baby.
We have weekly rounds where we talk about how the babies are doing, but also their psychosocial needs and how the parents are coping and if there’s any additional resources that they might need. Sometimes we join the medical team for walking rounds, so we’re able to hear some of the medical updates in real time.
We’re able to see how parents are responding to some of those updates in real time. And then we certainly document with keeping parents privacy in mind. We document some of the progress being made so that the medical team can also stay updated on how a parent is doing so that they can then make sure that their care is really specific to what that family needs.
Erika: You mentioned, the social workers and that you have therapy. Can you talk to me a little bit more about what kinds of mental health professionals or specialists are involved or could get involved?
Dr. Poe: Yeah, that’s such a great question. because I think sometimes the way we think about mental health is very, specific, or we think about a therapist, right? We think about someone “doing” therapy. But in the NICU, especially from this whole family perspective, there’s a lot of different ways to support that family’s mental health. So sometimes when I think about the psychosocial team and who’s supporting these families, I even think about, like I said, the child life specialist who is really helping that family adjust to the medical setting and medical interventions. They’re supporting siblings very closely. We have a music therapist that’s helping both the parent and the infants, you know, with regulation in that setting. We have chaplains who work with families around spirituality and any sort of existential things that might be coming up during that time. The social workers. And I think in general, our bedside nurses are just incredible. They’re there with the families in it and they certainly in their own right provide a lot of emotional support to families as well.
Erika: Are there any kinds of special techniques that you can talk to us about? I don’t know if there’s visualization, mindfulness, that sort of thing to give us sort of some concrete ideas of what you’re helping, how you’re helping the patient?
Dr. Poe: Yeah. I tend to think of four major categories when I think about the most broad level of intervention that we’re providing families. So a lot of it is based in Dr. Richard Shaw’s work. He developed one of the first and only evidence-based interventions for supporting families during this time. And it’s based in an informed cognitive behavioral therapy model. The curriculum that he developed is a six-session curriculum, but we often see families for much longer than that. So we sort of pull from that as needed and depending on what’s appropriate. That’s a lot of thinking about the trauma of this situation and helping families navigate the symptoms that are coming up for them and that comes a lot of different ways.
I think the first way that is helpful for all NICU families is just providing what we call psychoeducation about the experience. We talked about that in the previous episode around that, anticipatory guidance, what they might expect both for their journey, but also emotionally what other parents say, what other parents have experienced, because it can feel like a very lonely experience and you can also feel really disoriented with the way that you.
Feeling this might be the first time where you’re feeling really depressed. It might be the first time where your anxiety has been this bad, and so really normalizing that and giving some language to that. Talking about traumatic stress symptoms in the NICU and what that looks like. I think that education piece is really, really helpful and validating their experience that you’re not doing anything wrong.
This is a normal human reaction to this really abnormal situation that you’re in. So that’s a big piece of it. And then the coping skills, which sounds like a little bit of what you were asking about. There’s a lot of different strategies that we can talk with families about with navigating the environment.
And some are just about how to talk with the medical team, how to spend your time at bedside, how to come up with a routine that works for your family, where you’re getting enough rest, where you’re able to pump if you need to pump, where you’re eating regularly. but there are other things like mindfulness exercises, teaching, cognitive behavioral skills to help manage some of the negative thinking or the worries that are coming up, how to handle uncertainty. And then I think the final two categories, include how to navigate all of this. Utilizing your social support system effectively. So it’s not enough to just have a big support system when you’re in the NICU. Oftentimes as well-meaning as your family and friends and coworkers are they, they may not always understand what you need in any given period of time, and.
Sometimes that takes knowing how to set boundaries or what language to use when you want to share updates or if you don’t want to share updates. And so navigating that I think is important because when families don’t feel like they have the skills for that, what they might do is just isolate. They might not talk to anybody, and we don’t want them to have to journey through this experience on their own.
The final thing is helping get them connected to resources. So making sure that they have support outside of the hospital when the baby’s discharging, or if there’s a particular group or something, an organization or website, depending on a certain condition that their baby has.
Just helping them understand all of the resources available to them, that’s great.
Erika: Do you ask for feedback from the families and maybe use any of that to see what they are finding most useful and improving and developing the program based on what they’re telling you?
Dr. Poe: The way that we get feedback is not in any formal way, but certainly because we’re in this ongoing phase of program development and expanding our program, we have the opportunity to try different things and see how families feel about it. So oftentimes, discussing what was it like for us to be able to start with you and antepartum and follow you throughout the journey?
And how many sessions do you feel like you need post discharge? It’s very much a collaborative process where I think we get to learn how nuanced and unique each family’s needs are.
But also what seems to be working well and what seems to maybe need some changes we also have a NICU family advisory Council at Stanford where we’re able to talk to them about what they would’ve found helpful and that helps us to refine our program over time as well.
Erika: You know, something that just occurred to me that I didn’t ask at the beginning, and it seems like now this is a fully fledged program, but when did it all start?
Dr. Poe: That’s such a great question. So I think in the way that it is now, it started in 2022, so my role started at the very end of 2022. But like I mentioned, there were psychology postdoctoral fellows who were seeing families, for maybe eight years before I got here. But even then, I think a trainee can only do so much. It’s a lot of responsibility growing a program for a trainee. And so, the way that we’ve been able to really pour into this program, I think it’s been happening for the past three years.
Erika: Okay, great. I’m wondering a little bit about have you had other hospitals and other centers reach out to you that are trying to maybe model after what Stanford is doing?
Dr. Poe: Yeah, absolutely. And I will say this is very common for a lot of NICU psychologists, where you get people reaching out to us. It’s not just at Stanford, but certainly we have had people all across the us reach out to us to ask us about programming.
Particularly for people who are starting off, it’s hard to know where to start with programming because the NICU is also such a unique space that there’s a lot of things to take into consideration, and I think being able to talk with someone about how to get that started has been helpful. So we certainly are very happy to meet with programs one-on-one too, to talk about that. But also the National Network of NICU psychologists is the one sort of organization that brings NICU psychologists together in that way. And that program also serves as a great avenue for people who have questions about getting this sort of programming started. And for psychologists who are just starting off in the NICU and just want to learn about how they can best do the work. It’s a great resource.
Erika: That’s great. I was curious if there’s anything, any kinds of challenges or maybe roadblocks you’ve come up against in getting this program [to happen.] I’m guessing maybe it wasn’t always seamless or that there were some challenges you had to overcome. Was there anything like that?
Dr. Poe: Yes. And there are many challenges depending on the hospital setting. So I can speak specifically for Stanford and maybe some that I feel like are probably more general or universal. The ones that I feel like are very universal is just how siloed are systems of care are for the perinatal population.
Let’s say you were getting support for fertility, then that shifts, once you have a baby, and then that shifts once the baby’s in the NICU. And so oftentimes it’s hard for everyone to be talking to everyone or for providers to be consistent across those different periods of time.
What that means is that a lot of times we’re unable to truly identify the needs in the way that we really need to and also provide the support to them in the way that we need to. So at Stanford we have tried to really be intentional about communicating across these different systems of care.
We’ve developed a monthly work group where all of the providers across these different systems are talking together and really trying to be more cohesive. I think that that was a major barrier. And another major barrier is just funding. I think as much as we see the need for this, there are a lot of providers in the NICU or non-mental health providers who truly recognize the need, but they don’t know where to start in terms of being able to hire and fund a psychologist or a therapist in the hospital setting. So we’ve been fortunate to be able to have access to donor funding and then to have our hospital then back it up and really be able to support the work that we’re doing. And then I think the other piece is just being able to provide that continuity of care.
I think it’s so challenging because the more you do that, the more it’s hard for you to also do the work in the NICU. So, we want to be able to follow families, but that also means then that that could potentially reduce our capacity for the families in the NICU. So I think just being thoughtful and creative about the way that we do that has been, an ongoing pro process.
Erika: I really love that because I think that when you said siloed care, that really just rang true for me. [The importance of] communication throughout these things, because we’re talking about a whole person or a whole family, and you don’t just move on from one thing to the next. These aren’t aisles of the grocery store, right? You are the same person experiencing all these things. And the more that the providers know when you go from one stage to the next, the better your care will be. The more you will feel like these people really get it and feel like you are cared for as a whole person and not just the affliction or whatever it is, like you mentioned, fertility and then, make perhaps a fetal diagnosis and then the NICU, all of these things are, this is still you, right? This is still this person going through this. And so I really love that there’s this, focus on the continuity of care.
Do you have any examples you can share of the support for a family? Generally, maybe a family that was struggling and how the care that they, they got in the program really helped them?
Dr. Poe: Yeah. Actually there’s a family I am working with now whose baby was recently discharged from the NICU, and I think it really illustrates the growth of our program. One thing was that this referral actually came from one of our mental health clinicians in our OB clinic. She was working with mom during her pregnancy. But then mom needed to be hospitalized, in antepartum for about six or seven weeks before the baby came. And so in the hospital setting, we are able to provide that support.
And so we really collaborated, myself and this other clinician, about how to not duplicate services, but really provide the family with more comprehensive support. So I provided couples therapy for this couple while they were in antepartum, really talking about the fear of giving birth and sort of what that experience would be like, as well as understanding a little bit of what the NICU experience might be like.
And then when we got to the NICU, it was a really challenging experience for them. There were a lot of ups and downs and really emotionally draining for mom. Dad had also was working at the time, and so balancing both of those things was really challenging. So I worked with the couple once or twice a week while the baby was in the hospital and they also came to our group.
They received a lot of different types of support, and then we were able to successfully discharge the baby and now they’re at home and they’re experiencing different challenges. How to set boundaries with family members and cousins who might be bringing home sicknesses and things like that.
So it’s been a really beautiful example of not only the continuity of care, but I think the collaborative nature of working with all of our providers throughout the program.
Erika: That’s fantastic. I really love, just everything that you’re saying here. I think it’s been so needed. So thank you so much for sharing this. It’s an incredible look inside the program at Stanford to see what it is offered, how it was built, and really why personalized support makes all the difference. So thank you so much for sharing this with us. Is there anything else that we didn’t chat about here?
We’re going to talk again in the third episode. But is there anything that you wanted to mention that we didn’t get a chance to talk about?
Dr. Poe: I don’t think so.
Erika: Okay. Well, in our next session we’re going to wrap up this series on NICU mental health. We hope that you will join us for this next session. Dr. Poe, thank you so much for being with us.
If you’ve enjoyed watching this episode, please subscribe and share with others so that it can be found. We’d love for people to learn more about the work that’s happening at Stanford and thank you so much for being with us. This is More Than Nine.
