Mary Coughlin: [00:00:00] Well, welcome, Keira Sorrells. I am so wicked excited that you accepted our invitation to be part of our Care Out Loud podcast series.
Keira Sorrells: thank you so much for having me, Mary. You are one of the most inspiring people that I've come to know so it really is a pleasure To have this conversation with you
Mary Coughlin: gosh, thank you so very much. Well, I thought we could kick it off with you just kind of giving us the story about how you came to establish NICU Parent Network,
Keira Sorrells: Absolutely. So I am a parent of NICU babies. I had triplets that were born at 25 weeks, five days, and one of them struggled quite a bit.
So ended up in the NICU for nine months. unfortunately, we did lose her very unexpectedly when she was 14 months old. I think that had that not happened, I never would have gotten into advocacy, because it was, it was really that trauma that triggered my need to do [00:01:00] something, at the time, it certainly was about me trying to make sense of what happened and to find purpose in why did she endure nine months in the NICU to come home and then die?
It took me a very long time and a lot of. Therapy and counseling to let go of having to find a purpose. But that's really what triggered me into advocacy and support for other families. initially I wanted to focus on one on one parent support for families once they had gone home.
And had medical equipment and juggling all of the specialists and, the procedures that still have to happen even after you're in the NICU But it did lead me to an advocacy meeting opportunity. And I remember Being in this room of about, 60 or so professionals there were people from the American Academy of Pediatrics the National Association of [00:02:00] Neonatal Nurses, A1 HRSA, the National Perinatal Association, all these really smart people with all these acronyms after their names.
And I remember I just sat there at my table purposely in like the back corner and thought. What am I doing here? I was one of three parents that was there. The other was Deb DeSenza, who the great advocate in our world
And the other was Maureen Doolin Boyle, who started mothers of super twins. years ago. That was actually how I found my peer mentor was, was through her organization. And it was really fascinating in this meeting to hear about the developments that were being made by these leading healthcare.
Organizations and provider associations and, discharge planning, teaching for nurses to better prepare parents for going home. creation of a NICU journal for parents to help them navigate. [00:03:00] But the question that I came away with was Where are the parents that are helping you with this because there weren't any yeah, and having a conversation with Deb afterwards.
I was like, isn't that kind of backwards to create something? to help someone without their input. there is this quote from Gandhi that says, what you do for me, without me, you do against me. And that really resonated with me because I thought, how do you know after you spend all this money and time creating this resource, is it really going to help if you don't have families from the beginning?
that is what then precipitated my Conversation with an advocacy director at a pharmaceutical company that was, trying to build up coalitions in different states for maternal health. And I was like, what about doing a parent meeting? And they were like, great, let's do it.
And I've never gotten a grant so fast nor [00:04:00] planned a conference so fast because I think we got the okay in July and had it in October back in 2010. And it was, it was amazing to bring these other NICU parent leaders that were, you know, this was 13 years ago. So this was before all the Facebook and social media.
So these are people that were, starting their grassroots community organizations some of which have Gone on to become some of the most, successful peer to peer support organizations in the country, which is really exciting, but it was, it was, let's bring these folks together.
we're all trying to do our own thing and our own little silo and how can we work together, because we don't all have the capacity and not one organization can do it all and do it well for all the people that need the help and the other.
reason we started was to create a collective voice of NICU family that could begin to partner with healthcare professionals to make sure that that [00:05:00] family voice is represented. So here we are now we've got 43 organization members across the country. And I think we're 28 different states.
So these are all autonomous, individual organizations under our umbrella.
Mary Coughlin: it. You know something popped up in my head when you were speaking how much do you think our healthcare system kind of the paternalism of the healthcare system Is, is responsible for this fragmentation of care of service of support for families.
I mean, we can focus just on the NICU, but I think everybody understands that this transcends all
Keira Sorrells: patients, all facets, right? Yeah, for sure.
I absolutely think it's, there's this historical nature of healthcare to be hierarchical.
and patriarchal, where the physician is revered and, you know, and everybody else. it's supposed to, just go along. I mean, obviously things [00:06:00] have changed over the decades, but I'm sure you know, decades ago in the NICU, parents were told, go home.
We'll let you know when the baby's ready. And, you know, which just seems outrageous in this day and age. But I think it was that we know what we're doing. We're going to take care of the baby. And I think something that I've learned a lot from you. Mary is just. The lack of humanity placed in the, personhood of the baby, I think is what was, you know, traditionally done.
And we know so much more now, thank goodness, but there's still decades of that kind of Embedded attitude and culture that we're still having to undo Yeah,
Mary Coughlin: I agree with you. Because I think, there has been lots of forward movement and discoveries about how we can do things better.
But there is that residual bit that many folks aren't even aware of, right? You don't realize how these systemic factors influence how you show up to the work regardless of the [00:07:00] discipline, and even families, how families come into these traumatic situations, and they've already imprinted with their own exposure to systemic influences and shapes your view of the experience, how you process the experience.
I wondered if you might comment on how your journey, to become a trauma informed professional. So, you know, you've you you're in this journey right now. You have this backstory of your own lived experiences.
Of trauma and how that has ignited. This, you know, passionate advocacy. Role. And how that's emerging and shaping your life's mission, your life's calling. Influence that at all or informed it at all, has it had any impact on your trajectory?
Keira Sorrells: absolutely. the first time I heard you speak was, several years ago about trauma informed care. And even back, you [00:08:00] know, in the beginning, I was very focused on, okay, this is what the parents.
You know, they need this trauma informed care. It's at the bedside. You know, it's inside the walls of the hospital. What the experience of going through the program has really opened my eyes and just broadened my view that this is not about the bedside or inside the walls of the hospital. This is every day.
interacting human to human and it is, like you, you talk about so eloquently is we are wired for connection, whether that's the baby is wired for connection. We're wired for connection. It's it even goes back to, I mean, there's just so many ways that it, that it has really shown up in my life personally and professionally, the importance of being trauma informed and not just.
being informed, but actually practicing. because we can have all the [00:09:00] knowledge in our heads and what does it do unless we actually implement it. But I think what has, struck home to me and particularly so we have an annual conference and our conference is for the leaders of.
The organizations that provide the support to families, the peer to peer support primarily. So all of these leaders have had a personal experience in the NICU or a bereavement experience. They employ or lead, you know, staff or volunteers who are also veteran NICU families.
those volunteers are the ones that are working one on one as mentors to families in crisis. So we've got this, just this trifecta of trauma experience, as we have new people that come to our conference, they start to see and hear about, you know, trauma.
They have a name for what they experience, which is so powerful. And they often come to us and say, I [00:10:00] thought I was going to come and learn NICU stuff, but what I've learned is I haven't healed yet and I have some more healing to do.
And that's what is really important and has opened my eyes to what we need to make sure these leaders are prepared for. If you're going to go out in the world and do this work you need to have At least started your healing journey, it's just so important.
I don't know if that even answered your question Oh, it absolutely original
Mary Coughlin: I love how you transitioned into that reality first of all, the language, we don't include the lexicon of trauma and trauma informed care in the environment.
without the words, right, you just, you know, you're feeling something. And so you just immediately go, I'm, I must be losing my mind. I'm, I'm going crazy. What's happening to me. And no one and no one else is talking about everyone else seems pretty normal air quotes here, right? So it makes you feel more isolated and [00:11:00] disconnected to what's happening.
So I think, the mission and the work that you guys are doing, particularly in curating and cultivating a community is to help. help that language help that vocabulary become part of the work that you do. And also realize this idea of the distinction between the walking wounded and the wounded healers that you so beautifully said, you have to be on the journey of your healing you have to realize that you have been wounded.
Before you can help someone else who's in a wound.
Keira Sorrells: Yes, absolutely. I jumped right into wanting to help others after my daughter died. I had no business doing that in retrospect. I believe that it delayed my healing because I was just trying to, fill this hole and answer this why, [00:12:00] by doing this outpouring to others, but what it was doing was it was keeping me embedded.
In the experience without the skills to process it it was a good eight years after Zoe's death, before I, had this experience in church that Left me in tears and, talking to the pastor's wife for hours afterwards where I realized, I am not healed.
I've got some work to do. and it really, it kind of coming to that breaking point and realizing that, just surrounding myself with sad and traumatic stories without the skills to process. I am not a therapist by training. So I didn't have that training to not just carry the weight of everybody's pain with me.
It was harming me more.
Mary Coughlin: But imagine all the wisdom that you curated so that now you can pivot.
And say, look at, I know you want to help the world right now, but you're too [00:13:00] fresh off your trauma and I can speak from my own lived experience of what that means to you. You feel the calling, but these are the steps or however it unfolds, right?
Is there a process of how you onboard? these peer mentors,
Keira Sorrells: Well, I think so I don't do the peer mentors myself. But when I'm talking to, yeah, when, but I know that that is part of the training the organizations that provide peer mentoring, that is that they have a screening process to identify is this person really ready to be in this space because we don't want it to harm, you know, they don't want it to harm the mentor.
They don't want it to harm the family, And so, it can be very difficult conversations. these leaders have to have sometimes with people who really just want to help But when they have the screening and training, they usually try to find some other way to engage them and provide the support services.
From my perspective I'm [00:14:00] really looking at the people who are starting the organizations because there are so many parents that come out of the NICU and out of a bereavement experience that want to start a nonprofit that want to start a program, because it was something that they lacked in their own experience.
And a lot of them are quite fresh. And I will share my story with them and I always say to them, just remember the need is not going away. Yeah. And, take your time. Be very deliberate in what you're doing. Focus on one thing. that's the whole reason we have this network, right?
If you can't provide a specific service, that's okay. We probably have, another organization that's been doing it for years that you can partner with, and that's the whole point. It can't be about me and my organization. It has to just be about the family and the family getting what they need, how they need it.
if your focus is to be the best organization, there's a different distinction between being [00:15:00] the best or the only organization and. Being excellent at the work you do. that's our continued message. it's okay to pause.
It's okay to reset. you're not failing. there's no such thing as failure. It's just, that didn't work out well. Let's try something else. it is very evident when you have a young, passionate leader and you know that they are not sleeping because they are doing everything themselves.
And so we're just continuing, you know, us veterans now can just continue to say, pump the brakes a little bit, your child is young still. Don't miss that. Yeah, because you only get that once with that child.
Mary Coughlin: Yeah, that's, a great way of helping people see and not miss out on the now.
I think our natural tendency is, when you have a wound that is deep and vacuous, it's sometimes, you can't dive into that. it's a touch and go. I'm just going to dip my toe [00:16:00] in that wound for a little bit.
And then find some solace externally and gradually. Gradually, you can mine that wound and metabolize those experiences and uncover, the wisdom and the stuff that you're going to let go. But it is a journey and it's such a juxtaposition to the way our society operates, right?
It's very productivity driven, being human isn't about. The productivity That's a small fraction of what it is to be human. It's about the living and the experience.
it sounds like that's where you guys really you and community, right? I mean, yeah, yeah, you rally around these individuals who are obviously driven and have a calling and found a community and want to serve, helping them navigate that.
Keira Sorrells: Right. Yeah, because we want them to laugh. we don't want them to burn out in three, [00:17:00] seven years and have to close up shop.
one of the things that I love about the program, the certificate program is the validation that I've gotten in the modules, particularly about, vulnerability is, That is being brave as veterans, it's really interesting because we have this older class of leaders that started with us from the very beginning.
some of them were actually at that 2010 summit and have been with me all the way through. we have this great opportunity to be mentors to the new leaders and the emerging leaders. we're trying to put some standards of excellence to what it means to be a NICU parent leader.
a huge part of that is recognizing your own pain and your own trauma, the, veteran core group here. We've all, been diagnosed with post traumatic stress disorder generalized anxiety disorder, major depression, one or the [00:18:00] other or a combination of all three.
I've been In therapy since the beginning, but what was really pivotal for me was when I found a therapist that specialized in trauma that was huge for me to find this.
She previously worked with in the VA hospital with veterans. And then went into private practice. she was amazing. And it was just it was, she just kind of, she helped. I love that word that you use them metabolize because that really does feel, it's a great word for what it's like.
it is, but it's so important as leaders. I see the young ones come in and, they feel intimidated by the ones who've been around for a while and we're like, no, you know, we're all needed here. There's room for everybody. And what a perfect
Mary Coughlin: message because it's the truth, right?
There is room for everyone. We can never have enough folks who are caring, compassionate, loving, and serving at their highest. let me ask you a question now about, this work, There may be two [00:19:00] populations that you're serving.
It seems like you may be serving, you know, this large kind of population of the NICU parent and the NICU family. But also serving the organizations and how they kind of bring up their own, you know add to these parent leaders to provide these services. Is that?
Keira Sorrells: Yeah, absolutely. It's kind of like, a mountain with, you know, so we have like NICU parent network kind of at The top that's kind of this umbrella for all of the individual organizations or the individual advocates that are, and those are the ones that are doing, you know, the base of the mountain, in the trenches.
we want to do, I mean, I think about us as like A professional society like yeah, or a one, you know, that's providing the advocacy, the voice of the nurse. We're trying to provide a voice for NICU families when it comes [00:20:00] to legislation and care guidelines family centered care benchmarks and, that kind of thing.
We're also. Providing that community bringing them together being in the NICU is very isolating and being a leader is often very isolating as well, so, let's bring these folks together to learn to grow together to support one another So they can be better at running their organizations and supporting the families
Mary Coughlin: a, that's a perfect analogy.
I mean, when you were saying that I did start to think about Nan, you know, in in the support they provide to clinicians with the intention of then impacting
Keira Sorrells: babies and, and families. Absolutely. You're making the profession better. I was a residential interior designer.
And a member of the Atlanta chapter of the American Society of Interior Designers. And, you know, cause that was one of the first things that people were like, well, you know, how are you going to have these nonprofits that are kind of competing for? And I'm like, Hmm, I [00:21:00] think we can get over it.
Then it was the same thing. You know, you would be in, you know, Atlanta, which was this. You know, pretty decent sized design community, but they had this society where they would all come together. And yes, they would literally be competing for clients, but we were learning together. about new products new building codes networking and, building relationships.
And, that's what it's about. building this community so that the families are served in the best possible way. Have you been
Mary Coughlin: able to kind of like distill down top priorities that you see, at the top of the mountain, what do you see as those top priorities for babies and families, and then maybe even for mentors.
Keira Sorrells: Yeah, well, absolutely. I mean, certainly the COVID 19 pandemic really laid bare how the fact that families are not equal care partners. we lost a lot of ground in terms of family centered care, our organizations [00:22:00] were Most of them were seen as optional, so they were, you know, when families needed more support than ever, the services weren't there.
I think we only had one organization out of our membership that never missed a day. that was identified as an essential, part of the NICU care team. And then we had another that maybe was out for six weeks and then was back in. But most of them really, you know, struggled to get to the families.
And as we've seen, you know, with the WHO that recommendations that they put out last world prematurity day they had 11 new recommendation five of them had to do with family support and presence in the NICU.
that's, the top priority keeping the families together, integrated as a part of the baby's care team. I think one of our biggest legislative hurdles is paid family leave because our healthcare system does not set things up for families to be with their children in the hospital.[00:23:00]
advocating to reestablish and strengthen those family centered care practices. I'm a part of the family centered care task force, which is working on creating benchmark marks because it's not measured. There's no way to measure it right now, But we're stepping in and we're going to do it. Because. It has to be done and families need to be together and they need to be supported.
Mary Coughlin: and we need to have those standards, those expectations, in place so that there aren't any gaps there, you know, there's, there's no more losing folks in the cracks that this is.
Part of how you're evaluated on the, on the quality and the caliber of the care that you provide in our setting
Keira Sorrells: absolutely, I mean, you know, when you have babies and children their only voice is their caregiver. you can't just treat the medical complexities Of the baby or the child, you have to look at that baby or child as a part of a unit of [00:24:00] family, however, that family looked and that all has to be considered in everything that happens.
if it's happening to or for our babies, we care about it. There's nothing too clinical that we don't care about
Mary Coughlin: I think, it's high time that, we really start recognizing that ecosystem, that family as an integral ecosystem to the baby and integrated to the healthcare community.
part of it too is Reconnecting with our shared humanity and acknowledging the dignity and humanity of these tiny little humans they are much bigger, as you said earlier, much bigger than their diagnosis, their needs are complex, interconnected and and.
hinge on the integrity and wholeness of the family as well. for the short term, but for the longer term, right. across their lifespan. And I think so many of us haven't embraced that fully as part and parcel of what it means to work with [00:25:00] critically ill newborns and
Keira Sorrells: Yeah, absolutely. I've heard you talk about clinicians interested in the brain science of what happens with these babies and how they're impacted their brain structure is even different. we've got this intervention in the parents and the caregivers,
What does that cost? It costs nothing. Right. Exactly. To have that, that do everything they can to remove whatever barriers there are to make sure that that baby and that caregiver, that parent can build those connections. At your recommendation, I did read that Bruce Perry's book.
What happened to you? one of the things that struck me the most was when he was talking about the impact of a, you know, healthy newborn the impact on that child, if it has a depressed mother.
So a mother is present, taking care of the baby, doing the things that the baby needs every day. And yet they're not connecting There were, signs of neglect [00:26:00] in that child's development, even though the parent was actually present, which again just speaks to the critical importance of supporting the mental health of the parents.
And I just thought, Oh my gosh, what is happening to our babies that are preterm or full term with, medical complexities that are literally separated from their families. the families aren't getting the mental health support that they need. it weighed on my heart that, we've got to do better.
We have to do better. Well,
Mary Coughlin: I mean, and this is the work. This is the work that your organization and all of the partners within the NICU parent network calling out this incredible gap if you look at some of the clinical indicators.
Those measurements, they talk about hospital acquired conditions. Are you familiar with this language? Hospital acquired conditions. It's like, infections and falls, in the grown up world But for me, a lot of the morbidity that we're seeing, disease independent morbidity, [00:27:00] like the psychoemotional and developmental Disturbances that these NICU survivors are experiences their hospital acquired conditions because we have not made a commitment to partnering consistently and reliably with the parents and involving and integrating them into the care of their very own baby, right?
So that family feel as whole as you can feel in the throes of a trauma. And cultivate that, post traumatic growth that can actually emerge when we really do this right.
Keira Sorrells: Yes, absolutely. that's one of the things that we really want to promote with our members to the healthcare community we know that you are understaffed and underfunded and there are so many things that make it difficult for you.
But look, we have this professional community of people that are trained that can [00:28:00] partner with you. They're not trying to come in and do the work of the nurse. They're not trying to come in and do the work of the doctor, but they can be a partner and a bridge to, alleviate some of that. Because nurses and physicians, aren't taught how to support families in medical school and nursing school, you don't learn about psychosocial support, we recognize that and that is the core focus of these organization is psychosocial supportive family so you know let's figure out ways to integrate, peer support leaders to be that bridge, to support the families so that everybody has a better relationship and better communication in the NICU.
Mary Coughlin:
to me, it's about caring out loud. it's just about calling it out and saying, we can do better. We want to do better. I mean, come into the field wanting to make a difference. and it's incredible to be able to do that to really kind of free yourself from this illusion that you have to do it this way because this is how you've done it for the past [00:29:00] 30 years and start realizing that there are better ways.
and that you can step up and care out loud in your own way. I would love to get your take on what this means for you and the work that you do. What does it mean to care
Keira Sorrells: out loud. I love this question. To care out loud really, to me, it means connecting, human to human, it is relating to one another, it is, doing what you can to alleviate suffering.
Of another person, whether that other person is the baby, whether that person is, a nurse, whether that person is a physician, because we know that the healthcare partners suffer as well. And so when we can show up as our true authentic selves,
Human to human person to person, passion to passion that to me is what caring out loud is about. And I think when you care out loud, it [00:30:00] invites the other person to do the same.
Mary Coughlin: Oh, I love that. When we can do that, we really get to make those connections.
Or don't connect, I mean, keep our distance, keep that mask on. it suppresses our authentic self, which is our most healing, loving self that I operationalize through my nursing skills, right? And someone else can operationalize through whatever skills they have.
And the parent operationalizes through their skills which are rich and complex as well. and we can all come together and make something challenging and difficult, not seem so dark,
Keira Sorrells: we know we can mitigate the suffering. through the proper supports for the family, for the staff, The time in the NICU is really tiny compared to the rest of the life of the child. And the foundation that is formed for that family in the NICU [00:31:00] sets the stage for how they're going to be able to navigate life afterwards.
I mean, we were really fortunate to have a primary and secondary nurse for Zoe, who was the most. And was going to have the most challenging road forward developmentally. But the hospital that we were in really, they valued and understood the continuity that we needed as parents in terms of the nursing care.
So When my other two got moved to the step down nursery and I started to have a new nurse every day, I went to one of the NEOs and I was like, I can't handle this. You got it. Like, get me a rotation. I'm, I know that you, you know, that it's different than in the acute area, but get me a rotation of like two or three, cause I can't handle the new face every single day and the different messages and they did.
But they really. set us up for a foundation through the care that we received as a family by the nursing staff and, the neonatologist. they had the [00:32:00] primary team too. So we always had the same doctors I know that's not the way it is everywhere.
we were very fortunate to have that. It doesn't mean that we didn't struggle. We still struggled, but We were able to move forward after the NICU as well.
Mary Coughlin: I think one of the wonderful things is we know what can be done.
We know the power of what can happen if We operationalize a more compassionate human centered approach to the work that we do. we just need to get out of our own way. Get out of our own way. Do the right thing. Yes.
Keira Sorrells: Right. It's incredible.
Mary Coughlin: mean, you have it, you have shared so much insight and wisdom.
Is there any chance that there's one thing that you would say, if nothing else. This is the pearl that you should take away from this conversation. Well, I'm going to give
Keira Sorrells: two. Excellent. One, one, [00:33:00] I want to speak to the clinician. That, you know, that care for the babies and families never underestimate the incredible power that you have as a clinician to change a family.
life. That truly are our confidence comes from our relationship with you. And so never think that your job isn't important or that you can't make a difference because the work that you do is incredible. I mean, these nursing relationships that I had 17 years ago now, almost, I still have, about five that That I'm still, very, very close with.
And I had nobody else in the NICU until I found my peer mentor. But, but yeah, it's just the impact that you have on us is. positive. I know that there's a lot of negative things that get talked about, but I do want to really highlight the positive that comes out of these relationships with the clinicians as well.
that's [00:34:00] when they're vulnerable enough to connect to me, human to human. And if there are, NICU parents who are listening that are thinking about starting an organization I would say, to really, look at your own trauma and your own healing journey.
And if you haven't really addressed that seek out some support because the need is not going away. Unfortunately, babies are going to be born early and medically complex. It's just not something that's going to go away.
But to your point earlier as well, you have to be whole yourself. Before you can, try to help fill somebody else. those are my two nuggets.
Mary Coughlin: Well, those are very valuable nuggets Thank you so much, Keira. This has been incredible. I do have a surprise question for you. It's a fun rapid
Keira Sorrells: fire.
Mary Coughlin: Okay. I love it. If you, get flustered, you can just say pass and we'll go to the next question. It's just some of your favorite things.
Number one, [00:35:00] favorite book.
Keira Sorrells: You know, I really do think it's what happens to you. That's a great book. I keep going back to it. So it's gotta be that. Favorite movie. Passed because I'm not a movie person. My husband wishes that I was because he loves movies. Favorite song?
Favorite song So right now there's a song called Live Like You're Loved by Hawk Nelson and my four year old makes me play it on repeat on the way to preschool and it is a beautiful song and I love that one.
Mary Coughlin: have to check it out. Favorite activity?
Keira Sorrells: Favorite activity. You know, I still love to decorate. I do the decorating things and refinish furniture every now and again. So,
Mary Coughlin: gosh, I might have to have you come over my house one of these days then. All right. Good.
Keira Sorrells: And favorite color. Favorite color is kind of a teal color
Yeah.
Mary Coughlin: Oh, that's actually one of the accent colors in my house, my outside. yes. It went pretty wild.[00:36:00] With that. And now everybody has a little bit of a deeper understanding of who is
Keira Sorrells: Kira Sorrells. Yeah. Thank you so much.
Mary Coughlin: You are the best. Thank you. very much.
