And in the second episode, we talked about what Stanford is doing to support those families while they’re there and beyond. And today what we’re going to talk with Dr. Poe about the impact this program is having and has had on families. I’d like to mention that this is NICU Awareness Month in September. And, we’ve talked a little bit about why this topic is meaningful because of that. But, there are so many parents when you look at the statistics about the number of premature babies and parents that go through the NICU, so many families are dealing with this.
Erika Wolf-Ferraco, Executive Director, Fetal Health Foundation: Hello everybody and welcome back to more than Nine Real Talk on Life before, within and beyond the womb. In this podcast for the Fetal Health Foundation, we are talking about the whole story of pregnancy that extends beyond the typical nine months that we think about. What we aim to do in this podcast is talk about that full arc of pregnancy and parenthood.
Everything from preconception planning to complex fetal diagnoses, to grief advocacy and beyond. We want to have real raw conversations with parents, with healthcare providers, and with change makers to help us tell these sometimes untold stories that can involve hard truths and often quiet triumph. This is a place for honesty, for courage, and for connection.
We aim to celebrate the highs, to honor the lows, and to really hold space for the entire journey no matter what that involves, because the path to parenthood does not begin at conception and it doesn’t end at birth. It is truly more than nine months. We are joined again today by Dr. Celeste Poe. She is the director of Stanford’s NICU Mental Health Program.
Dr. Poe, thank you so much for being here today.
Dr. Poe, Director of Stanford’s NICU Mental Health Program: Of course
Erika: We have been talking about the NICU and in our first episode we gave some basics around what is the NICU, what is done in there, why do parents have special mental health needs while they’re there, what do they come into the NICU with, and what do they leave the NICU with?
And in the second episode, we talked about what Stanford is doing to support those families while they’re there and beyond. And today what we’re going to talk with Dr. Poe about the impact this program is having and has had on families. I’d like to mention that this is NICU Awareness Month in September. And, we’ve talked a little bit about why this topic is meaningful because of that. But, there are so many parents when you look at the statistics about the number of premature babies and parents that go through the NICU, so many families are dealing with this.
Dr. Poe, can you tell me how families have described their experience with your program at Stanford?
Dr. Poe: Yeah, I think that it’s really a privilege to be able to hold space for families in such a medical focused environment. And I think families experience that safety and that sense of continuity, of “you walked through this journey with us” and in a way that I think they really value that. We actually just recently had our NICU graduate reunion that happens every year this past Sunday. And to see families coming back after many, many years, they come every year, show gratitude and have that sense of community, but it was nice to see many families and to be able to hear the impact of what it was like to have a mental health provider walking alongside them during their journey.
Erika: Can you tell me if there’s a story that you know about a testimonial maybe from a family that benefited? What do families say about their experience with the program?
Dr. Poe: Yeah, there was a family that we worked with right after the baby was born two years ago. She just turned two and it was couples therapy that I was providing to this couple. And they were very interested in general about pursuing psychological support because they were new parents and that was always something that they were anticipating, but they didn’t anticipate a fetal diagnosis.
And then more things that came up after the baby was born, including the need for heart surgery. And so when that was happening, I worked with them very closely and this was such a great example of the collaborative care where they were able to share with me what they felt like they needed. So we worked as a couple, but I also worked with them individually and it was touch and go.
It is depending on what they needed week to week and I think that allowed them to do a lot of deep reflection as new parents and understanding how they were processing the grief that we’ve talked about, but also I was able to work with them for about six months after discharge and navigating the child’s ongoing feeding issues, which was a new stressor for them.
And so I think they were interviewed to share about their NICU experience, and they talked about the level of support and how it changed with their needs over time and how meaningful that was for them, and I think for them as a family to be able to connect as a couple and talking about their different coping styles and how I was able to support them with navigating that and remaining a team during this difficult experience.
And again, with the feeding issues, that was a whole different challenge for them outside of the hospital, but now she is G-Tube free and she’s eating well. And I think when they look back on it, because she just turned two, they were able to share with me at this event as well how helpful it was and how amazing it is for them to now look back on their experience in a way that feels a little positive, which during the time that was hard to do. But I think being able to have that continuity of care provided that for them.
Erika: That’s awesome. So how does this emotional support affect family dynamics and relationships long term?
Yeah, that’s such a great question. I think there’s a lot of different ways it does because there’s so many different people in the family, right? So we talked a little bit about attachment and bonding in the NICU in the first episode. And so for a parent who is really struggling with their mental health, that might impact their relationship with the child over time.
So that can be difficulty feeling close and feeling bonded because of all the things happening internally. But it could also be that overprotective parenting we talked about. So over time you could develop this anxious relationship with your child that can be detrimental to the child’s development.
But we also see difficulty sometimes with siblings. Older siblings who are noticing all of this time and preoccupation going into the child who has complex medical needs might feel left out. There might be some resentment, there’s some confusion, and that can impact the sibling’s relationship with the parents, but also their relationship with their sibling over time.
So I think that’s something to think about. And then, like we just discussed, the relationship with the couple can be really strained, both in the NICU and afterward. Because of all the things that we’ve discussed with grief that’s ongoing, the anxiety, the traumatic stress, and you’re two different people, so you’re likely to be coping with it differently, and it can feel like either you’re doing it wrong or your partner’s doing it wrong or something is not quite aligned and without having an objective, knowledgeable third party to walk you through that and have strategies for navigating that, sometimes it can lead to separation or divorce is sometimes what we see. There are, there are times when couples describe feeling closer after the NICU experience as well. So I don’t wanna say that it’s just something that is negative for the relationship, but it can place a lot of strain.
Erika: Can you tell a difference? I’m sure it’s difficult because every family is different and every circumstance is different, but maybe the families that you were dealing with before this program came into being, are there noticeable differences in these families before the program and now that the program exists?
Yeah, I think a, a lot of it is the role that parents step into. I know I’ve heard a lot of times that, especially for new parents, that transition into “I’m a mom now” can be hard in the NICU. I’ve heard parents even say signing consent forms that say, “Mother,” it feels weird to sign their name there because of all the barriers that we talked about in the first episode and, and asking questions or voicing concerns, all of those things over time.
It’s beautiful to see parents stepping into their role and feeling confident and knowing how to advocate for themselves and their baby, and feeling confident in how to care for the baby as well. Because in the beginning, especially when babies are critically ill, parents can feel like they’re so fragile.
“I don’t even want to hold them. I don’t know what to do here. I don’t know what my role is.”
And then to see them going home with the baby where they’re like, yeah, I got this and I’m excited to get my baby home. And lean into the experience that they first wanted for themselves.
Seeing their baby as a baby, seeing themselves as a mom and not a NICU baby, or a NICU mom. And being able to enjoy the typical joys of new parenthood. I think when you’re able to see a parent lean into that it’s usually a sign that some of their mental health symptoms have decreased.
Erika: That’s amazing. We’ve talked a lot about the parents, how they experienced this program, but have you received similar feedback from the NICU staff and other medical professionals at the hospital?
Dr. Poe: Yes, absolutely. I think that this is a common thing when you have a NICU psychologist available, because these providers who are supporting medically are also seeing the emotional strain on families, but they don’t have the capacity or skillset to really support them in the way that they always need.
And you can imagine what that is like for a provider when you don’t have anyone to refer them to or you don’t feel like there are resources available? There’s actually a lot of what we call moral injury, feeling like, “I see the need and yet I can’t do anything about it, and how that makes me feel about the care that I’m providing.”
And you take that home with you that strain of how hard this is. So knowing that there is someone that you can send them to and that you have sent them to, I think is really helpful. But it also, I think, helps with just the everyday care that they’re providing because when families are well taken care of, they’re able to engage with their medical professionals in an effective way, in a compassionate way. And so our care providers are feeling like they’re able to work with families so much more effectively. Then I think finally our providers can come to us to talk about difficult cases or difficult conversations, or when they feel lost with a parent or don’t understand how to support them, they can consult with us. So it’s a really important resource to have in NICU settings for the staff.
Erika: That’s fantastic. I was wondering though, are there any gaps that still exist, maybe at Stanford specifically? And then maybe if you could address that a little more broadly across the country, I’m positive that there are gaps throughout the rest of the country, but maybe start with Stanford specifically.
Dr. Poe: Yeah, so when you don’t have the personnel, it means that your capacity to do what has been recommended and guidelines related to NICU mental health is really limited. And so for us, it is myself full-time and the NICU as faculty, as well as a postdoctoral fellow. But we have just in the NICU and intermediate care nursery, we can go up to 72 beds.
And that doesn’t include antepartum, that doesn’t include follow up for families after they go home. And we’re really limited in our ability to universally meet with all families who have a baby admitted in the NICU. Ideally we could, we would at least meet with families once to provide a consultation.
And they know all families get this, maybe if there’s stigma or fear of being seen a certain way that we could really eliminate some of those barriers. And a major part of that, which is highly recommended, is parent mental health screening in the NICU. This is a major priority of ours is to be able to screen all families early on in the NICU stay and perhaps some at another time point if their baby’s there for a long period of time.
Because that way we are not subjectively deciding who needs support or not. If, if there’s a family who is maybe afraid to ask for help or seems to have it all taken care of on the surface,screening can allow us to make sure that there’s not families following through the gaps.
Similarly, I think for follow-up care at Stanford, with more capacity, we would be able to follow families for longer because we know in the postpartum period, there are different time points where postpartum depression and other difficulties can come up after we’ve already ended our services with them.
If you’re able to provide support longer, that would be more helpful. And I think that the gaps that are true at Stanford are true at other units as well, because a major factor is the capacity. If the funding is not there, if we’re not finding and hiring NICU psychologists, that means that even if you do have a NICU psychologist at your institution, they’re likely being pulled in a lot of different directions. Maybe they’re working in the fetal center and the NICU and the outpatient follow up program for NICU families, which limits the ability to do things like screening or follow families for a long period of time. And then I think the most obvious one is that we don’t have enough NICU psychologists.
In California, there’s so many NICUs and there’s just a handful of us at different institutions, so we definitely could use more NICU psychologists across the country and NICUs.
Erika: Is this a specialized area of study in medical schools?
Dr. Poe: Yes. Yeah, definitely perinatal mental health in general is a very specialized area of focus. I know in my graduate program there was one researcher who focused in this area, but that was out of a lot of different people doing research but most programs won’t have anyone doing this type of work. And then even more specialized is the NICU because it adds in that medical complexity, high risk population. It is a very nuanced level of support, which I think is also maybe why it’s hard to always find people with this expertise.
Erika: What kind of advice might you have for hospitals that are looking to start a program like this?
Dr. Poe: Yeah, I want to encourage people to know that it is very possible. I think sometimes it could be a neonatologist or someone in administrative leadership who recognizes the need, but there are many barriers that can come up and it can feel like, oh no, I don’t know how, how are we going to document or how are we going to provide privacy or follow up care if a parent needs higher level of intervention?
And so sometimes that can keep people from pursuing it. But it’s happening every day where programs are figuring this out and many of us throughout the US are happy to talk with programs about how we’ve developed our program at our particular institutions or how to navigate certain barriers.
I would say don’t be afraid to reach out to someone. Look up who’s doing this in your state so that you can also maybe understand different policies or legal considerations. The other major thing that I mentioned before was the national network of NICU psychologists. So this is an organization where all of us have come together to really promote parent mental health in the NICU.
And so we’re happy to help with programs. We’re developing toolkits for providers to understand how to get a program up and running. I definitely would say reach out for support and questions because, because it’s a growing area, people are usually happy to provide support in navigating that.
Erika: For patients that aren’t in California or other places in the country, do you know of other programs in different parts of of the US that are available?
Dr. Poe: Absolutely. Yeah, there’s a lot of amazing programs. Nationwide Children’s Hospital is one that comes to mind: a robust program and exemplary program as well.
Children’s Hospital of Philadelphia has a really great program. Also University of Colorado. There really are many programs out there and families often have to travel to a NICU that have higher levels of care for the medical needs. And so you could be many, many hours away from one of these institutions.
But, I would say always inquire about the services that are available because there might be something that is available to you in your state.
Erika: How could listeners get involved or support NICU mental health initiatives?
Dr. Poe: Yeah, that’s a great question. So for the National Network of NICU psychologists, we are a part of the National Perinatal Association. I would definitely encourage listeners to check that out and see how you can get involved. But then even more specifically for NICUs, there are amazing parent-led organizations that exist where you can volunteer or find other ways to support. So the two that come to mind are Hand to Hold and the National NICU Parent Network.
Those two are really great organizations to be able to get involved and learn a little bit more about what’s being done to support families.
Erika: Was there anything surprising to you that came about as a result of the program?
Dr. Poe: Such a great question. I think really seeing how this population has impacted support for the general perinatal population at Stanford has been so helpful because in general, we need to be doing so much more for our pregnant and postpartum families across the board.
And I think that when we’ve been able to highlight the increased needs that we see in our high risk critical care populations.It’s been able to highlight gaps in areas of need in our general perinatal population. And so I think it’s just gotten a lot more attention and support, which is really exciting.
It’s an exciting time at Stanford, but I think in general to be in perinatal mental health because I think people are talking about it more which surprised me. But it is very exciting at the same time.
Erika: What’s next for your program?
Dr. Poe: It’s a great question. So we’re working on a few different things.
I think the thing that we’re working on the most readily right now is our transition to home program. We are working closely with one of our neonatologists who is developing a program for families right after they get out of the NICU, because sometimes it can be months before they’re being followed up by medical providers and they’re just at home navigating all of these things with their baby.
And so we’re developing a medical component of that, but also a mental health component where we are serving our families who’ve had a baby in the NICU to understand what they would’ve liked from a mental health program around this period of time. And then developing services and likely a clinic where we’ll be able to follow families more long term and have a more specific intervention around that transition period.
Erika: I love that. I was at a conference this summer talking with a nurse navigator who was talking about this NICU bubble when you’re in the NICU, many of your needs could be taken care of, sometimes rides are provided or there’s the cafeteria right there. There’s different things and preparing the family for that next step of going home, many of these things go away.And for some families that might be okay. And other families, there really does need to be some social safety net so that they don’t go without transportation back to the hospital when a baby has an appointment and all of these different kinds of things. So I really love that the follow-up care is being thought about — that the aftercare is just as important as everything that led up to that moment.
The last question I have for you is, how can people get in touch with you or learn more about your program?
Dr. Poe: Yeah, so Stanford has a website where you can learn a little bit more about the Johnson Center, which is our larger pregnancy and postpartum services, as well as our NICU and some of the services that we’re doing.
But people are always welcome to reach out to myself or Dr. Richard Shaw. We work closely together. You can probably find my email online, but people typically email me. It’s just cpoe @ stanford.edu. I’m happy to talk with programs or even we get people out in the community who are in private practice who want to understand how to support this population.
So if there’s things that we can do with consultation or learning about how to develop a program, we’re happy to talk with people.
Erika: It’s been such a meaningful way to wrap up the series. Thank you so much for sharing the impact. It really does affect the lives of these families at the moment and in an ongoing way. And it’s such important work. So thank you so much. Your insight, your compassion and your leadership are truly making a difference. Thank you so much.
Dr. Poe: Thank you. Thank you.
Erika: And for our listeners, we’re so grateful that you have joined us. For these episodes, hopefully you’ve watched all three. If you’ve found it helpful, please subscribe and share and allow others to find this information.
Dr. Poe, is there anything else that you’d like to add before we sign off with this series?
Dr. Poe: No, thank you for having me. I think the more we can spread awareness, the more we’ll have more resources to support these families.
Erika: Wonderful. Well, it was great to have you. Thank you for being here. And thank you for listening to More than Nine.
More Episodes of the Podcast:
I knew I’d love my baby, I just didn’t love my pregnancy | More than Nine Podcast and Transcript
Inside the NICU with Dr. Celeste Poe, Part 1 | More Than Nine Podcast Podcast and Transcript
Inside the NICU with Dr. Celeste Poe, Part 2 | More Than Nine Podcast and Transcript
