Erika Wolf-Ferraco, Executive Director, Fetal Health Foundation: Hello everyone and welcome into the Fetal Health Foundation’s first ever podcast, More Than Nine: Real Talk on Life Before, Within and Beyond the Womb, where we’ll be telling the whole story of pregnancy and parenthood that goes far beyond the typical nine months. We will explore the full arc of pregnancy from preconception planning, complex fetal diagnoses to grief, advocacy and beyond.
We want to have real raw conversations with parents, with healthcare providers, and with change makers who are helping us tell these untold stories, the hard truths, and these quiet triumphs. This is a space for honesty. For courage and for connection. We want to celebrate the highs, honor the lows, and hold space for every part of the journey because the path to parenthood doesn’t start at conception and it doesn’t end at birth.
It truly extends beyond this nine months we typically think of. Today we have an amazing guest with us that I can’t wait to introduce and talk to. But before we dive into that I just wanted to give a little bit of background for a minute on who I am, what the Fetal Health Foundation is, and what this podcast is for.
My name is Erika Wolf-Ferraco. I am the executive director of the Health Foundation. And. I’m super excited about this podcast because I feel like it talks about that messy middle. Often we see the stories of, okay, yay, I’m pregnant, and then yay, the baby’s here. But we don’t often see and hear about those things that so many of us experience.
I really think that those stories are meaningful. They’re very helpful to people, and that’s what we aim to talk about in this podcast. Normally I will be joined by Lonnie Somers, who is, the co-founder of the Fetal Health Foundation. He couldn’t be here today because he had a prior family commitment, and as we all know, family always comes first.
But, just to give you a little bit of his background and why he started this foundation, he and his wife had a twin pregnancy that was diagnosed with twin-to-twin transfusion syndrome, and this has been more than 22 years ago. And the twins are doing fine now, but at the time they were told there was very little hope and they searched for it and they found it.
But they wanted to create a different experience for people going through the same or similar experiences. They wanted to let people have information, education resources, most importantly. And so that’s why they started this foundation and why we’ve started this podcast because we hope to inform, to educate and maybe now and again, entertain people with information that is helpful, that can shed light and make people feel like they’re not going through this alone because they’re not.
Even if the syndrome that you are going through is rare, people have been in your shoes and there are people out there who can help and walk the path with you. And that’s what we hope to do here. I wanted to dive right in then with our very first episode guest. She is a visionary whose work is making a real difference for families navigating the NICU, especially their mental health.
Today we are joined by Dr. Celeste Poe. Dr. Poe, thank you for being here.
Dr. Poe: Thank you for having me.
Erika: Of course. Dr. Poe is the director of the NICU Mental Health Program at Stanford and an associate professor of psychiatry and behavioral sciences. She is a nationally recognized leader in neonatal and perinatal mental health, and a powerful advocate for the emotional care of families during some of their most challenging moments.
She’s been instrumental in building one of the most thoughtful, compassionate, and forward thinking NICU mental health programs in the country. She and her team are helping to redefine what it means to truly care for families, not just physically, but emotionally and mentally too. We are grateful to have her here to share what this work looks like, why it matters, and how it’s transforming lives.
Dr. Poe, let’s dive right in. First question. September is NICU awareness Month, which makes this obviously a very meaningful time to be having this conversation. There might be some people listening who don’t know what NICU means. So could you start with, this is kind of a two-part question, could you start off by giving us a basic definition of what the NICU is? And then why is it such a unique and important place in the world of care?
Dr, Poe: Yeah, great question. I think this is such a timely conversation given that it is NICU Awareness month. I think, some people might have heard of nicu, some people call it NICU, but it stands for the Neonatal Intensive Care Unit.
It is an intensive care unit in the way that we understand most intensive care units. It’s for, critically ill. Babies. And specifically when we say the neonate or neonatal, we’re talking about the first 28 days of life after a baby is born. But for most hospitals, the NICU can go on for months.
At our hospital up it can go up to a year. So certainly there are families who have to have a baby immediately after birth in the NICU for a few weeks, but it could go on for many months. And we see babies coming to the NICU for a lot of different reasons. Many times it is right after birth, and it could be because a baby was born prematurely or with some sort of congenital condition or something that we immediately know after birth is happening.
But sometimes there are babies who are born at term and go home and then have to come back to the NICU because something came up or something was found medically that required that level of intervention. So these are babies who are quite ill and cannot be in a regular sort of hospital space or at home because they need some sort of higher level of medical intervention.
So it is quite an intense experience for families, which I’m sure we will get into. But that’s sort of like the, the most, brief version.
Erika: Great. Thank you. I guess I had never thought about the fact that a baby could go home and then have to come back. So, yeah. Thank you for sharing that. So when, when you think about a NICU or, I recall the first time I ever saw a NICU, it was full of machines and monitors and beeping and lots of uncertainty.That can maybe be scary for parents. So how do you demystify this space for parents when they are coming into the NICU?
Dr. Poe: Yeah, that’s a great question. And I think it’s true for loved ones as well. So maybe not the parents that are directly there, but just everyone else that cares about this baby trying to understand what’s going on.
A basic understanding of what the NICU is and what the everyday experience for families is like is helpful. So sometimes we can provide some anticipatory guidance. Fortunately in our program, we have the ability to work with families before the baby is born. If we have an idea that they might need to have a NICU stay.
And so in this instance we can kind of help them understand what the setting looks like, what they anticipate, what families typically find most challenging about navigating the NICU journey. So I think really knowing what to expect is really helpful because it can be a really difficult setting and understanding the different challenges that they’re likely to face.
But I think another piece is working really closely with the medical team, so really doing that ongoing assessment to make sure that parents have an understanding of what’s going on medically and, and what interventions are being done. So we sometimes facilitate communication and understanding.
And then I think another major piece is that we help families experience this journey as not just a medical journey, although a lot of the conversations are about how is your baby doing medically, what progress is being made, this is also your baby, you’re also a parent. And I think highlighting some of those more special moments and helping families feel like their role matters. And feeling empowered is another way that I think we help demystify the experience. I really like that idea of empowerment. So I’m sure it’s important too for parents to ask questions and feel like their input is important to the team, which just can be hard.
We don’t always talk about it a lot, but the healthcare setting can be really intimidating, especially in an intensive care unit. There’s this hierarchy where, there’s like the neonatology, attendings who are making a lot of the major decisions, but then there’s the bedside nurses who are doing a lot of the one-on-one care. We’ve heard from parents that sometimes they can feel like they’re at the bottom of the totem pole in terms of being able to just come in and make decisions. And for certain groups that can mean that they are afraid to speak up because they don’t want to be labeled as the difficult parent. Encouraging them and trying to remove any barriers to feeling like they can voice their concerns or ask questions is a big part of our job too.
Erika: That’s great. So when we talk about what these parents go through, we speak about the journey, the emotional experience. What does that mean? What, what does that look like for a parent who is in the NICU? What is the emotional experience of a typical patient. I know everyone’s different, right? Every case is different, but what is it that it typically looks like?
Dr. Poe: Such a great question. I think it’s always helpful to start with where families were at before they even came into the NICU, because like we said, sometimes it’s a complete surprise, but actually for most of the families that I tend to work with, they, they’re coming in with their own emotional experience already.
Many of our families have experienced infertility. They might have experienced early pregnancy loss or infant loss previously, maybe a fetal diagnosis, or traumatic birth experiences. So even before we get to their NICU stay, they’re coming in with a lot on their shoulders, oftentimes emotionally.
Understanding where they’re coming from and helping them process that as part of the work. But certainly we know that NICU families are at greater risk for things like postpartum depression, anxiety, traumatic stress. So those are, typical things that we’re seeing. I think grief is certainly a part of the experience.
Whether your baby is alive and well or not, for no family was this the experience that they wanted, ideally that they really imagined when they first found out that they were going to have a baby. And so I think processing all of that along the way, and after discharge is some of what we see families struggling with.
So because parents have had previous experiences, they may come in with preexisting conditions or preexisting emotion.
Erika: Why has emotional support in the NICU been sort of undervalued or overlooked in past years?
Dr. Poe: Yeah, such a great question. I mean, now that we’re having the conversation and people are more aware, it’s almost like, wow, why is, why hasn’t this always been the case?
It’s kind of obvious that parents would struggle with their baby being in the hospital. But I think a lot of it had to do with just the focus on medical advancement. We’re thinking about neonatology more broadly, the advancements in that field have been amazing. And the way that we’re able to help babies survive and thrive now compared to even 30 years ago is just incredible.
And so I think a lot of the focus had been on keeping babies well physically, but obviously I think as the medical intervention has advanced, but also as our understanding of psychological intervention and the intertwined nature of infant wellbeing and parent wellbeing, we understand that that includes the parents’ mental health and their wellbeing. So I’m glad the conversation is definitely growing and happening more now.
Erika: We’ve talked a little bit about the parents’ mental state coming in to the NICU and how that contributes. Can you talk a little bit about how the NICU environment itself contributes to mental health challenges?
Dr. Poe: Yeah. I think that if we compare it to the typical postpartum experience, typically, there is a process where you’re getting to know your baby. You’re starting to really transition into this role of a parent, you’re imagining what things are going to be like, and then in the postpartum period there’s this idea of like nesting and getting the house ready and all of that.
And that is very different for NICU families. That’s not the environment and the setting that they are starting off in. And so it’s really an extremely medicalized environment. They have to wash their hands when they come in. They have to wear a badge and be identified. It’s just not the typical experience you would have with your baby.
And then on top of that, it is an intensive care unit. So there are alarms going off, there’s codes being called, there are people rushing from one conversation to the next. When you’re talking with a provider, their phone might ring or they might have to stop and answer something because it’s that important.
And then in a lot of hospitals there are no private rooms, which often means that parents can’t stay overnight. And so there’s also this forced separation, at the end of the day or if they even can see their baby daily depending on where they live. So the environment itself, I think, can be really challenging.
And we already spoke to that sort of medical hierarchy and parents feeling like they have to ask for permission. So I think that that can weigh heavily on parents.
Erika: Can you share an example or a story maybe, that highlights the emotional impact of a NICU stay? Just kind of wanting to see like what typically is a parent’s experience from an emotional perspective?
Dr. Poe: Yeah, I think that one of the most typical journeys we see are parents navigating prematurity. So I think along with prematurity there is the grief that we spoke about that, I thought I would have a full term pregnancy.
I had planned a baby shower, I had planned a maternity photo shoot, we were going to go on a baby moon. All these things that get interrupted. And so there’s often a feeling of disappointment and grief. But then when you start to learn about what this means if your baby is born at 28 weeks.
For example, all of the medical things the child could be at risk for, or just all the testing that needs to be done can be really overwhelming. So, understanding that at 28 weeks, this means that they could be at risk. For brain bleeds or long-term developmental challenges, and so you’re trying to focus on the present moment, understanding all of the acronyms and the medical interventions being done, but you’re also worrying about the future.
There’s a lot of uncertainty in the NICU and the journey is not one of just steady progress. So once you feel like you’re taking a step in the right direction, maybe something else comes up. Or it can be a very jagged kind of line towards being able to go home. And the ups and downs of that are so emotionally draining.
So it can seem like a parent is not doing much just visiting their baby at bedside, but needing to kind of navigate all of those. Scary scenarios and just the range of emotions that you’re experiencing can be really hard. And then typically once you get closer to going home. It can feel like there’s a light at the end of the tunnel.
We can see it happening, but sometimes that can actually feel like the slowest process because your baby is learning how to feed or you’re on the last bit of respiratory support and you’re just wanting to like get over that hump. And that can also be distressing in a different way. You’re just really ready to get home, and knowing that you will be leaving the hospital without the medical interventions, the monitoring, the nurses, the doctors. And so there are these phases that happen emotionally for parents along the journey. No matter the reason your baby is there or how long they’re there, we typically see this trajectory that happens over the course of time and around the time of discharge.
Erika: Clearly in the NICU there’s a lot that parents are dealing with, but I imagine there’s long-term effects. I mean, this doesn’t just stop because you gotta go home. Can you talk to us a little bit about what are some of the long-term effects that parents, caregivers, supporters, whoever is involved intimately with the baby after they even get to go home.
Dr. Poe: Yeah, so unfortunately all of the things that we talked about, the major sort of conditions or symptoms that we see, like depression, anxiety, traumatic stress, those things can continue after the hospital. They can look different, but certainly. We know that those can be ongoing. I think in particular what we tend to see a lot is the, the, the trauma of the experience sometimes starts to hit more strongly once you go home.
And I think part of that is that in the hospital, your adrenaline’s pumping, you’re so focused on doing what you need to do. And once things slow down a little bit, once you get home and you have that stability. All of the emotions and things that maybe you didn’t have the capacity to process in the hospital start to hit you.
And so, some of that trauma can come out, for example, in parenting. So sometimes we see that overprotective overanxious parenting because you’re still sort of perceiving your child as fragile, given everything that they went through in the hospital. And that can leave you feeling on edge and that can impact your relationship with the child.
And there’s research that shows that can even impact the child’s development in their own sense of self. But I think that the most long-term thing that we hear from parents who are even many decades out of their NICU experience is the grief. That sense of loss does not necessarily get better. It changes over time but it’s not something that you can get back even though your child might be doing better and thriving, you can still look back at that experience and wish that it had gone differently.
Erika: I’m glad you mentioned that part about how a parent’s mental state can affect the child. I had a question about that. Can you expand on that maybe a little bit about how a parent’s mental health challenges really can affect the infant’s care, the outcome of the child’s mental state and, are you looking at that as part of your program?
Dr. Poe: Yeah, absolutely. I think in general, the field of NICU psychology very much considers the whole family so that that’s including the child’s mental health and their outcomes as well. But I think speaking first medically, we know that if we’re supporting parents’ mental health, it’s likely that they’re able to show up for their babies in ways that are really going to benefit the babies stay in the NICU.
So, for example, when we see traumatic stress or depression, that can impact a parent’s ability to feel like they have enough energy and tolerance to be able to stay in the hospital for long periods of time and that includes doing things like skin to skin, talking with your baby, doing infant massage; all of the things that we know can be helpful for neuro development and can even shorten their length of stay in the hospital. So we’re really fortunate when parents have the ability to be able to be at bedside and be really engaged. I think that that’s important. But I think another piece for infant mental health is the parents’ ability to read their baby’s cues and respond accordingly, it is such a foundational factor in the infant’s development and the child’s development over time. For a parent who might be really preoccupied with the worries and concerns about the future or very anxious in the presence of the baby they’re just making sure the baby’s breathing and all of those things. It’s likely going to be harder for them to be able to read the cues, if the baby’s making a face of discomfort and being able to respond to that. So I think our ability to support parents and their mental health definitely, I think helps babies both in the NICU and then once they get home as well.
Erika: That’s great. That’s amazing. I can’t wait to dive in and talk to you more about how you’re doing these things and the support that you provide.
This has been such a great background on what the NICU is, what parents are experiencing, and just sort of painting the picture for us. So, I think for now, this wraps up part one of our conversation, but you’ll be coming back for two more episodes where we get to talk more specifically about what it is that you’re doing.
This is so powerful because people think well, the baby’s there and it’s being cared for. There’s so much that goes on around that mentally, physically, just logistically even. I’ve heard it referred to as the NICU bubble. Parents come there every day and this is sort of their life.
We’ll get into how that changes when the parents get home. Next time we’re gonna dive into the program at Stanford, what it actually offers and how it’s changing care for families in the hospital and once they get home. So, to any of the listeners out there, if this resonated with you, please subscribe and share it with someone who you think might be interested in learning more about this, someone who could benefit.
It really does help people find these conversations, so, thanks for listening to More Than Nine, and we will see you next time.
