Dennis Langley, Prathhit Saxena & Emily Siwing Xia
Aug 29, 2025
ADL Foundation Interview with Kasey Edwards - Audio and Transcript
The NICU Journey: A Conversation on Compassion, Support and Resilience
Kasey Edwards – NICU Social Worker , Albany Medical Center
Dennis Langley – Representative, Adam David Langley Foundation
Prathhit Saxena – Representative, Adam David Langley Foundation
JM Agoncillo – Editor, Adam David Langley Foundation
Exploring the vital role of NICU social workers, the impact of compassionate care, and how families and professionals walk this challenging road together. Join us as we raise awareness, honor the strength of NICU families and shine a light on the unsung heroes who help carry them through.
Interview Transcript:
DL: Is there a particular story that you know that you can share without getting into too many details?
KE: As the social worker in the NICU, we are kind of the first line of defence whenever someone’s having some emotional distress, and I think our team is really good about talking to the parents and triaging things in the moment, versus just picking up the phone and say “I’m calling Kasey because I don’t know what to say.”. I think our team does a good job with figuring out what to tell the parents in the moment and then seeking me out for additional support and help because we all have our areas of expertise. We all have our niches. Our team does a good job of taking it in the moment and triaging it and making them a place where they’re stable and then coming to me and then I’m like “Ok, what can I do to help?”.
The most memorable experiences to me overall generally are- You know what? I don’t know if this is too sad to say but I think- I love when babies go home. I love when they are doing well, and their parents are happy and that’s a success. But I feel like what has been the most memorable to me has been the losses. That’s typically when I’m more involved, when it’s more emotionally charged and you’re truly seeing parents at their weakest and most vulnerable positions in their lives. It’s a privilege for me to be able to be in that room with them to talk about next steps, to show how empathetic we are to the situation, to give them words of encouragement. And nothing I say, or anyone says can make them better. Being with them and just giving them dinner, getting them an outfit for the baby, calling the funeral homes for them.
Those are the moments that stick with me more, and then I feel like I’m at my capacity sometimes with how emotional I can get, but I like being there for them and in those moments where during covid, where we couldn’t even have mom or dad in the room together, and then after covid it only became parents (only). It was hard during those years. You were the support system. You were the extended family in that room because they couldn’t have anyone in there.
Those, if we’re talking generally without naming names. I feel like I have most memorable moments with families when they are experiencing loss. Because I feel like I am most involved, because a lot of these parents sometimes can’t even get up to get a glass of water, let alone make decisions to call a funeral home to make arrangements. You’re really seeing people at their losses and that’s hard. Even I’m vulnerable. That’s why I say I’m privileged to be in this room because you have a dad and a mum and a cousin and a sister who wants to be here for you but can’t because of restrictions. Because covid has died down. But for me it was around that time where we were being very strict about it because of the safety of others, that I felt like I m really doing what social work is about here because I was the support person, I was the person making phone calls, I was the person getting an outfit for baby. The person sitting with the mum as she cried and allowing that moment she had with the baby.
I get to send a lot of babies home. I got into this job right out of grad school and when I came in and doing this work, It definitely hit me a bit hard and I had to find my own ways of coping with it which is difficult in itself because I’m not a parent. Having to sit and do these conversations and work with these parents, it makes me feel a sense of pride that I get to help them. Its just tough overall those tend to be the ones that stick with me, and I feel like I’m at my best social worker when I get to facilitate these things with these parents when they are not able to.
DL: I fully understand all that with my personal situation. That night we had been staying in the NICU; we haven’t left for two weeks. but after Adam passed away, they came, the social worker came (and said) “You know for your own mental health. You need to go home and get away for a little bit and reset.” But that night when we left, Matthew was still there, and his lung collapsed that evening-
KE: Oh my god.
DL: And he almost passed away, and then the doctors the next days told us about it, “We were going to call you.” Because it happened an hour after we left. It was almost like Matthew sensed what was happening to his brother-
KE: Absolutely yeah.
DL: But they said, “We didn’t have the heart to call you back to the hospital after, you know, you had just left the hospital for another.” So, but the social workers got us through. What you’re saying kind of rolls into the next question, which was, in your view, what role does emotional support play alongside medical care? So, you’ve kind of answered a huge portion.
KE: Yeah, it definitely is. It’s a really really big portion of it. If I’m honest with you, another saying that we have here too like being in the NICU, it’s a marathon. You know you have to pace yourself. You can’t sprint to the finish line, because you will get tired. You will feel burnt out. You will get fatigued and its tough when you do see babies who are here months and months and months, and parents are just wishing for the day that they can go home, and I had one family tell me like “I just want him to see sunlight. Like I want him to feel air, touch his face outside.” A lot of the support we offer here to the babies of course is medical, but a lot of the work we’re doing is purely emotional. Whether that’s setting them up with resources like a mental health counsellor, whether that’s getting them sorted with a support group, whether it’s just me talking to them. It’s a very big component that I think some people don’t necessarily think about cause they’re like oh my baby’s in the NICU, and he’s gonna be taking care of with all these doctors. But sitting in a room with 4 walls for 3 months and only hearing alarms is pretty significant to one’s mental health.
Like I said, my team does a good job with talking to parents about what they feel. They’re seeing with them sometimes it can be uncomfortable, of course, to bring something up to a parent and a parent’s like, “Well I’m here for my baby. Like what do you why are watching me cry when I’m here for my babies?” Our team does a good job with realising that postpartum depression and anxiety are very much impacting a lot of our moms, and overall supports for the family are crucial to keep them coming in, being attentive to the baby. We want to make sure that moms and dads are in a place where they feel they’re doing well for themselves, then do well for the baby.
DL: What are some of the ways that community organisations like our foundation can best support and empower NICU families, beyond just providing for immediate needs? Are there things like foundations or things like what we’re doing today, trying to raise awareness and hopefully promote?
KE: I don’t know how you feel about but I think NICU families are sometimes not always well known to the communities. You know the struggle and the journey that a NICU family goes through. I’m not sure how many people are aware of it? So, what are some of the ways that organisations can help and support and empower NICU families?
If you were to pick up a family out of a group of like 10 or 20, one of them is probably gonna say, “Oh, I’ve had an experience in the NICU” or “I’ve experienced a loss” or “We had fertility issues.” Its always things that are for example you said awareness. There is some stigma around it, whether its, you know, “Oh I don’t wanna talk about that, ‘cause I might upset someone!” or “Oh I don’t know if this person has experienced a loss so I wanna be sensitive to it.”
Having there be open conversations about it will help bring awareness to the fact that a lot of women do experience this. A lot of families experience being in the NICU, whether it’s they were here for one day or 5 months. A NICU parent is still a NICU parent.
And I feel sometimes parents are like, “Oh well, my baby was only here 3 or 4 days. I’m not really a NICU parent.”
And I was like, “Yes you are! You’re a NICU parent that experienced, you know, either a traumatic delivery, you know, your baby had to be emergently brought here. You didn’t even get to a chance to hold them. Like you experienced this too and you can grieve it!” Because a lot of times, it’s not a thing that’s talked about. A lot of families that come through always value the thought of knowing someone who know about things.
Support groups are fantastic as well. What I’ve noticed in my role is that there’s typically support groups that are local, whether its you find them online or Facebook or a blog and typically groups tend to disband after a certain amount of years because their NICU babies are now 15 or 20, and they’re like, I think you know, “we did out part here.”. So it’s usually a cohort of people that stick together.
You know, I’m always looking for the next available support group or things that are local for parents. It’s just difficult in the sense where they’re not always immediately available, but then the wave of technology has now allowed there to be apps and blogs and video chat where parents can be paired up with peers. Advocacy in the sense of like raising awareness, having it not be such a taboo topic are all things I can highlight. You know what’s going on in the NICU. I know right now that now we are able to have siblings here. A lot of families get to talk to each other about. My 5-year-old wasn’t a NICU baby, but we had him at St. Peters. But now our baby’s here, like “how about you?” and then a mom can say, “Well this is my first time. It’s my first kid. Like what did you go through?” So, I think allowing for spaces also to have open communication too, like whether it’s at an OB office, whether it’s at a YMCA group event, whether it’s in the community. I think if you’re gonna have spaces that can allow moms or families or dads to even say, “hey this is your 5th but this is my first. Any tips? How do I get through the next three months? What should I ask the doctor?” Even if organisations or community players can like invite conversations like this. I think that would be beneficial for many families.
DL: Ok. From your experience what are the most- You kind of answered this to some extent. What are the most effective forms of aid or intervention for parents?
KE: Since we are a Level 4 NICU, we get babies from all over so Vermont Connecticut, New Jersey, Boston, sometimes Massachusetts. Kinda goes all over. So, we do find that families either this is our first or second or third, but if they have kiddos at home, they don’t necessarily utilize Ronald McDonald House to stay locally, or they don’t want to stay at the bedside so the travel back and forth is a barrier and can cause difficulty with families, just because its tough.
DL: Do you have families that travel really long distances?
KE: Yes. Yes definitely. Over two or three hours. A lot, I feel like right now specifically. We are at a peak where we’re getting a lot of kids from out of county or even general area, so I think that typically tends to be the hardship that we see. So, something like an Uber gift card or like a gas card does help families tremendously because they’re like, “Well, I need to also pay for grocery for my kids at home, but I can’t spend two tanks of gas to come to see the baby every day.” Like what? How do you balance that?! So, a lot of the times, it’s not even coming from a place like “Well, I don’t want to.”. It’s “I can’t. It’s hard to balance life”. A lot of the times, I tell parents like “You’re not crazy for thinking this feels impossible because it quite literally is!” Like if you could multiply yourself, it’d be easier. Balance your whole life: balancing work, being able to (work with) children at home. That’s difficult.
DL: So, I guess that goes into the next question. How (did) your work with families influenced your understanding of resilience and hope in challenging circumstances?
KE: Like I said, I got into this role right out of my master’s program, and I had done work in the hospital before, but not in this capacity, so I feel like when I look at these parents. I’m really in awe of them, because they really are overcoming things that one should never have to face in my opinion. And I feel like we aid with keeping them afloat and I feel like a lot of that comes from like having a good support system in and out of the hospital, having a good relationship with the attending feeling safe with the nurses taking care of your baby. A lot of- We’re asking a lot of parents. I feel sometimes because they’re also supposed to leave the NICU and have a normal dinner with their kid at home, and come back the next day. It’s a huge adjustment, however way you slice it. I’m always impressed at how parents can overcome the adversity, because there is no way out but through.
Sometimes however kind of path, it goes in, and I feel like it’s hard to watch parents feel and be in that funk. Some times of just like I can’t get up, and a lot of times we are seeing it as just postpartum depression or anxiety that kind of forms, but its hard to kind of pull someone out of that and when they are able to get out of that, it’s most wonderful to see because you’re watching them kind of get back to being themselves and get back to, like, interacting with the baby and talking to us again, like, I feel like sometimes we really do see people pick themselves up from the lowest of lows places and its wonderful to see that it can happen even in day to day, let alone in NICU. Like, it’s hard to find it in yourself to have the strength again to keep going and, I feel like we see that every day with these parents and we commend them again.
That’s why we tell them like “Pace yourself.”, “Take care of yourself.”, “Go home.”, “Go to date night.” A lot of the times, the how we get parents out of here to take care of themselves is with a gift card to go have dinner downstairs. That’s at least a step if we can’t get them to go home.
I think a lot of the times we are seeing again, parents at their most vulnerable and lowest of low moments. And at the end of the day, our team is just privileged enough to be able to help them and help their baby in that case. And we do take that really seriously because we are talking about life and death sometimes, and I feel like not a lot of people can say that in their jobs, so we very much do make sure that we’re taking care of both sides, the parent and the child, and watching them kind of be resilient is what kind of keeps us motivated.
DL: So what advice would you give to individuals and organisations looking to make a meaningful difference in the lives of NICU families? I’m asking that maybe on a personal note: Where can we direct our efforts best? I mean our foundation is providing gift cards and things like that, and we’ve helped you know with the hospital in Rochester. We helped a few families and so we’ve done that, but do you have any other general advice about what individuals in general, not just foundations, can do to help?
KE: Yeah. I think, of course, the piece of like helping parents get here and helping the kiddos and the family is all great. I think breaking it down to its simplest level, I would just say, like, if you see something online where it’s, like, support a NICU family or raise awareness for maternal mental health, like repost it, talk about it, create platforms where it’s okay to ask questions. It’s ok to have conversations about it. I know many moms and many dads. It’s something that we’re always kind of gonna see in every generation. You know it’s not unique to just one group of people whenever there’s a family. There’s always a parent associated with it, creating spaces where there can be conversations, something like a repost, donating to foundations and organisations that do, you know, support good causes. I think there’s some level of advocacy as well. At state level 2, that is supporting more funding for maternal mental health as well.
My friends ask me, like, “What can I do?”. I’m like, if you wanna do a drive of getting onesies for a kid, do that! ‘Cause there’s a lot of families too that don’t have much, and we see a lot of kiddos who maybe are going into foster care or are going with another family member who didn’t anticipate having a baby with them full time. Whether it’s gift card drives, onesie drives, pulling your money together for someone to get a pack and play in the community doesn’t even have to be through the hospital. It can be just if you know someone, support them. I think the best thing that I was able to tell some parents, who were asking like, “My friends experiencing this loss”, or “-is grieving the birth you never got to have at home” or “is struggling.” You know. “What can we do?” I think there are some times too, where I told a friend of mine, I was like, get a cleaning service for her and have them come home and she can clean the house, and she can just leave for the day, like have her not even have to worry about that or her friends can just say, “Hey we’re coming over with dinner.”.
DL: It’s not just interventions while they’re in the NICU. It’s like after they go home.
KE: Exactly. I had a mom too. My mom’s starting a meal train for me, so every night I come home and there’s like something on the step for me for dinner. I think more awareness and funding for maternal mental health would be fantastic. We’re always trying to look for things that we’re able to give moms and say, “Hey, like this is a resource. Please tap into it for your wellbeing as big as that to as little as like, getting the cleaning service for your friend, sharing something online, donating to foundations, who are already active in the cause.” I think it really ranges. I think there could always be more. I think a lot of the times moms’ mental health kind of get brushed under the rug and just sort of categorised like “Oh it’s postpartum.”, but a lot of the times a lot of what they’re feeling is unique to being in here in the NICU. Whatever NICU you’re in for however long youre in for does take a toll. Whether moms like to admit it or not. But I think just watching and having seen it over the last couple of years, it definitely does take an impact on you, and if this isn’t their first baby then that trickles down into the other baby at home or a sibling or family members, so I think more needs to be done in that space too.
DL: What changes or innovations in social work or community support do you believe could improve these outcomes? I mean you’ve kind of talked a bit about it already. Are there any changes or innovations in social work you see coming for community support, in general, that you believe could improve outcomes, things that you would like to see?
KE: More support and more funding generally, I think, is the blanket statement that anyone would maybe say. I’m one person in a NICU that can fit up to 50 people, and my team does a good job with supporting me, but its tough. I do lean on community social workers. I do lean on community case managers that are able to follow these patients outpatient and being connected in that way. So, I feel like what’s to come and what I think will be coming is more support for the maternal mental health now.
Social workers outpatient are starting to talk to moms about this before they have the baby, when they’re pregnant , if they’re connected with an OB so I think that’s happening and I think too generally speaking, I think more funding for groups in the community, more supports for new moms who are just coming out of the hospital. There’s always this feeling of like OK we’re out of the NICU and we’re home. What do we do? Like I think you know, moms have said like, “We just get home and we’re figuring it out.” You know? I feel like if there was more prenatal education as to what to expect after taking the baby home would be fantastic, ‘cause I know there’s some moms who have been joking with me, but have said like, “We got to mix formula now, and,” I think, “We have to wake up every 3 hours like we’re trying to set alarm clocks you know as new parents.”. A whole word you know. It’s a whole new world. Exactly.
KE: So, I think there’s a lot more to come. I think there’s always stuff that can be done. I wish there was like three of me, so I can see everyone every day for therapy or something like that. Leaning on having a good team and leaning on them is crucial to how we work here, and that includes the outpatient providers as well. So, I’m always connected to like if they’re going to pediatrician appointments and if they have a social worker, I try to give them a healthy hand off, healthy families. I’m seeing more and more social workers in primary care offices as well, so they help them out too. I think the wave of change is coming and I think more people are starting to understand that being in the NICU is tough and the parents and families can use the most support out there that they can have, so we’re always advocating on our end of like, “Does this office have transportation assistance?” or “Can we send them to a different provider who has a social worker who can do assistance things like that?”. Just being in the know of what’s around them and where they live and things like that are always taken into account, but I think there is a new wave coming. I think more support, more people in these roles will help and I think at the end of the day it’ll just benefit the parents and babies in the long run with that support.
PS: Do you see the younger generation like Gen Z and all who are now entering the workplace? Do you find that they have taken up an interest in social work much like you from your days in university? Or do you feel that there needs to be more communication towards the younger generation to get them interested in this work, especially in these critical situations?
KE: That’s a good question. I recently myself just had three interns that were about to finish up their Masters in social work, and they were not sure where they wanted to go, ‘cause once you finish you can pretty much apply to wherever you want. It doesn’t have to ba a hospital and they were not sure. They ‘ve spent a good chuck of time in the NICU with me and I told them my story as to how I got in the NICU. They said “Yeah, we’re not sure how that’s how it’s gonna play out. We’ll try and field out what’s available.” And it’s funny because all three of them ended up doing hospital social work, and two of them ended up in ICUs. So, I think getting the newer generation into settings where they can have an opportunity to learn without being the sole decision maker, it helps because I think they were able to watch and observe and then decide, “Can I do this? Is this for me?” Because sometimes it’s not.
Being in an ICU, being in a NICU is also difficult in the sense of it’s emotionally packed. You are seeing a lot of stuff. I always encourage people to come and intern in a hospital and ask for pediatric specifically because there is a need. It’s very specific, I think. I work with some social workers who are solely in adults that are like “ I would never do NICU. I can never do Peds. It’s way too hard for me.” So it’s funny how you know you kind of figure out what you are good at, and what you’re interested in, but I do think that there has been a bit more of an uptick with people interested in social work. I think it’s a career that gives you the opportunity to really work in different areas and you can really find what you like. You can go from school to, you know, probation to hospital to foundations to, you know, It’s really a gamut. and I do feel like there are a lot of newer social workers that are interested in hospitals specifically, and I don’t know if that came from after COVID, if because healthcare is now a bigger point of conversation, but I know being in this setting you’re really seeing everything, because we’re a level 1 trauma center, so I think there is an uptake in people who are interested.
I think I always encourage social workers to try everything, because I did not start off wanting NICU. I did not start off wanting pediatrics . I said, when I got hired, “Keep me an adult social worker. I don’t want to go to the childrens hospital.” And my manager said, “Kasey, I think you’d be really good in the children’s hospital. I want you to go shadow the NICU and tell me how you feel.” I was like okay. Very hesitantly I said ok. And I ended up loving it. I adore it . I have not left the NICU since. They put me here on orientation. I did not want to leave so I think it also takes having a good mentor and good preceptors to see where they watch you and see where you’re good at and what skills you have. Because now I don’t see myself going anywhere else. So the newer generation are definitely interested. I think healthcare is a big point of topic, whether its nursing or PAs or social workers, but I think the newer generation is now finding that social workers can be in hospitals, ‘cause, I think, before you know when I was in school, I didn’t even know we’re in the hospital. I thought it was just nursing and doctors, so I think there’s more buzz around getting your feet wet and exploring options, and one of them being in a hospital, so I always encourage people to come watch us and come learn from us. We have three really good social workers on my team did learn from us, which I think is great.
DL: You’re certainly a wonderful advocate for the profession, and you do a tremendous job for Albany Med. Thanks so much Kasey.
KE: Thanks. Appreciate it.
DL & PS : Thank you so much for doing this. We really appreciate it.