#383 - đ¶ Keiraâs journey from the NICU to the NICU Parent Network
- Mickael Guigui
- 7 minutes ago
- 40 min read
Hello friends đ
In this episode, Leah Jayanetti speaks with Keira Sorrells, founder of the NICU Parent Network, about her personal journey through the NICU experience with her triplets and the advocacy work she has undertaken to support NICU families. They discuss the importance of family-centered care, the NICU Babies Bill of Rights, and the emotional challenges faced by parents in the NICU. Kira shares her insights on healing through storytelling and the need for self-care among NICU leaders, emphasizing that hope is an expression of love, regardless of the outcomes.
Link to episode on youtube: https://youtu.be/NoTwqb0zT1o
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Short Bio: As Co-founder and Executive Director of the NICU Parent Network, Keira Sorrells has been leading the movement to elevate the NICU Parent Leader as a professional in maternal-infant health. After giving birth to triplets at just 25 weeks 5 days gestation and losing one of her daughters at 14 months old, Keira was propelled into maternal-infant health out of a deep-seated desire to ensure no parent experiences the trauma of preterm birth or loss alone. Together, with a dedicated team of NICU Parent Leaders, Keira has grown the NICU Parent Network to be a sought-after resource and collaborative partner for providers, researchers, industry, and other stakeholders in this niche of healthcare.
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The transcript of today's episode can be found below đ
Leah MG Jayanetti (00:02.513)
Hey everyone, welcome back to our next episode of Beyond the Beeps. If you've been listening along with us, or maybe this is your first time, we are bringing together medical professionals, parents, NICU professionals, the community to improve the experience of NICU families and NICU babies in the Neonatal Intensive Care Unit. That's what NICU stands for in case that's new to you. Today,
We have a very, very special guest with us, Keira Sorrells, who was on our shortlist when we created this podcast nearly two years ago, because she is the founder of the NICU Parent Network. And that is the mothership of the NICU parent organizations in the United States. And she has been leading this movement to elevate the NICU parent leader as a professional in the maternal infant health space. And after giving birth to her own triplets at just 25 weeks and five days gestation, she lost one of her daughters at 14 months old. Keira was propelled into the maternal infant health world out of a deep seated desire to ensure that no parent experiences the trauma of preterm birth or loss alone. Together with a dedicated team of NICU parent leaders, Keira has grown the NICU Parent Network to be a sought after resource, a collaborative partner for providers, researchers, industry, and other stakeholders in this niche of healthcare, which is everybody who's out there listening today. These are our people. Keira believes that parents are the key stakeholders and the key informants in maternal infant health, and that nowhere else in healthcare is this more important than in matters related to neonates, newborns, a patient population that cannot speak for itself.
Keira is passionate about strengthening the NICU parent leader community so that every aspect of maternal infant health will be improved through informing product development, research protocols, standards of care, and educating families, communities, and providers, resulting in families who thrive. Thriving, that's something we talk about at ICBB all the time. Ms. Sorrells' commitment to authentic leadership and collaboration
Leah MG Jayanetti (02:25.435)
has successfully brought over 40 NICU support organization leaders together as they have worked to establish a unified representation for NICU parents. This past summer, I had the great opportunity to work with and for the NICU Parent Network under Keira's leadership at Hill Day in Washington, DC, where we were working to advocate for our NICU families and getting them
the NICU Babies Bill of Rights. Welcome, Keira Sorrells.
Keira Sorrells (02:58.914)
Thank you so much for having me, Leah. It's so great to be here.
Leah MG Jayanetti (03:03.705)
Yes, it is truly an honor for us and for everybody out there listening because you have truly been in a position to help be the wind at the back of our organizations and also to be our voice when we needed a gathering force to go up in advocacy or even in, you know, putting us together with other organizations. So a deep
deep gratitude to you and all the work that you've done so far.
Keira Sorrells (03:35.288)
Thank you, Leah. It's very kind of you. Right. I'm planning on it, at least for right now.
Leah MG Jayanetti (03:36.463)
And I say so far because we don't want you to give up or stop. I mean, you could do other things, but we want you to stay with us for a while.
That's good. That's good. So because we are parents here, and NICU parents specifically, tell me a little bit about what brought your babies to the NICU.
Keira Sorrells (03:57.454)
So I had a high risk pregnancy from the very beginning, experienced a couple of years of infertility and ended up with a quintuplet pregnancy. And we did make the very difficult decision to reduce the pregnancy to triplets. That would be a whole other episode to talk about that and unpack that, but it was one of the most difficult decisions, one of the most difficult decisions we've ever had to make. And I ended up developing preeclampsia. So the triplets were delivered at 25 weeks, five days. They spent, let's see, Avery and Lily were in the NICU for four months. And then Zoe was there for nine and a half months.
Leah MG Jayanetti (04:27.717)
We should. Mm-hmm. Yeah.
Keira Sorrells (04:57.118)
It was, I mean, like anybody who's been in the NICU, life changing, life altering, just.
Keira Sorrells (05:11.296)
unbelievably stressful and traumatic.
Leah MG Jayanetti (05:17.775)
Yeah. You shared with us something on Hill Day, which I spoke about before when we were meeting with several senators and representatives, particularly representatives and a lot of community organizers. You shared, to me, it was a love letter. But I know it was sort of your story. Would you mind sharing that with us here?
Keira Sorrells (05:56.526)
So, This part of my story is.
Sorry, Leah. I'm losing my words.
Leah MG Jayanetti (06:11.761)
It's okay, take your time.
Keira Sorrells (06:18.51)
So there was a day in February. I remember it was very sunny and unseasonably warm. And I was standing in the middle of a chapel just by myself. And I remember the way the rays of the sun kind of filtered through the windows and bounced off the crystal drops from the chandeliers above my head. And I was just sitting there, you know, looking around and I didn't even hear the chapel director open the door and didn't notice that he was walking towards me until he met me near the altar. And he just gave me a very warm smile. He placed one hand on my shoulder and he handed me a container about the size of a pint of milk, that big. And it was the urn that held the ashes of my 14 month old daughter, Zoe. And this was the day of her memorial service. You know, her life was far too short and it began in a way that I wish no child ever had to enter the world. And when we left the NICU, I thought we had left the worst behind us. And as I had shared just a minute ago, all three of my girls, Avery, Lily and Zoe were born at 25 weeks, five days. And Zoe was by far the sickest of the three of them. I mean, from day one, it took them over five hours just to stabilize her after birth. She was on the ventilator for two and a half months. She was two months old before I could hold her. And she was there in the NICU for 291 days. And all of our babies, all three of them came home with some sort of medical equipment. Just like I'm sure many who are listening today, we had a mini NICU set up in the living room with we had three feeding pumps, we had an oxygen concentrator, we had three apnea monitors, a blood pressure monitor, we had hearing aids for Zoe. But you know, they were still they were babies, you know, they smiled, they laughed, they rolled around on the floor, they played steal the pacifier. Lily usually had Two in her mouth and one on each pointer finger, and, you know, we thought, like I said, we thought the worst was behind us, that we were going to have this life as a family. It might not have looked the way that we had dreamed it would look when we first started to talk about having a family. But something that was really difficult at first was that I didn't feel connected to any of my babies right away. You know, I know now that that is a trauma response to their early, their unexpected birth, the emergency C-section. And, you know, it was, I remember very distinctly after they were born, I wouldn't go see them. It was two days before I saw them because I had made up some sort of story in my mind that I needed to not have any IVs or anything connected to me before I could go see them. Nobody said that to me. We all know that you can very, very well go visit your babies with all kinds of things connected to you. But that's what I told myself.
Over those nine and a half months that we were there, four months with Avery and Lily, we had some of the best NICU nurses I could ever have hoped for. They were gentle, they were patient with us, they guided us. And I did begin to feel connected to my children, that love that we have for our children.
finally started to grow and it was in the most unnatural places, right? The NICU is not a normal place to become a parent.
And I think one of the most important things, the reason that I think we ended up having a good NICU experience is because our NICU team understood what family-centered care was. They understood the importance of information sharing, participation, respect, dignity, collaboration, and they didn't just talk about it. They
lived it out. You know, they did that in practice. I think something that folks that aren't familiar with the NICU probably have a hard time understanding is as NICU parents, we are just completely stripped of any natural parenting instincts that we may have. I ended up having a full term baby, Mia, many years later. And so,
Keira Sorrells (11:44.948)
Having those two experiences now, I really can see just how much I missed with Avery and Lily and Zoe. You know, in the NICU, you can't just scoop your babies up when they cry. It takes a nurse and a respiratory therapist at the very least, especially if they're intubated, to place them on your chest for kangaroo care. You can't just rock them in the
privacy of your own home. Sometimes you've got to pull a thin curtain around while other parents are around you with their babies.
Another thing that was really kind of eye-opening for me having had Mia was how traumatic feeding my triplets was. It was not a bonding experience at all. It was to us, it was a life or death task that had to be completed eight times a day. And it was in these moments, you know, not being able to pick them up whenever I wanted to,
feeling like a failure when one of my babies just didn't have the stamina to finish their bottle. I wondered if I could even call myself a mother.
Keira Sorrells (13:12.854)
And it took quite some time for me to feel confident that I was a mom. I remember at one point, I think it was about five months into Zoe's NICU stay, we were in a birthing hospital and had to transfer across the street to the children's hospital because Zoe had to get a G-tube placed and had to get molds made for her hearing aids.
And so, you know, I rode in the ambulance and did the whole transfer thing and we're getting into the NICU at the Children's Hospital and the transfer nurse is, you know, reporting out to the admitting nurse and she kept getting things wrong. And so I kept going, you know, correcting her and saying, well, no, this is, this is the medication she's on. Well, no, this is the procedure that she's having. I mean, it was, there were so many things I was correcting and
Leah MG Jayanetti (13:59.217)
Hmm.
Keira Sorrells (14:11.53)
It was in that moment that I felt like I was Zoe's mom. But isn't that bizarre that being able to recall all of her medical needs is what made me feel like her mom?
I was glad that we were only there for a few days and then we got to go back to our home NICU, I would say. Because that is where the NICU team helped me feel like a mother in a more, I guess, natural sense where my husband and I became parents. And it was even within, you know,
within the walls of the NICU that we saw their personalities bloom. Avery has always been an observer, takes everything in, you know, even as a small little baby, was always looking very introspective and Lily, who still is my dreamer, always curious and expressive, sometimes lost in her own world. And
Leah MG Jayanetti (15:17.476)
Yeah.
Keira Sorrells (15:24.766)
Zoe just emerged with this huge smile and kind of a husky laugh because she had paralyzed vocal cord. And it was so, it was so fascinating to see these tiny babies that were born so early to have these personalities. And the NICU staff there really supported us as parents. They
truly cared about our babies and cared about us connecting with our babies. Because they understood that the NICU, however long it was, it was still a very short time in comparison to their entire lives. But unfortunately, you know, our experiences weren't always so supportive. And the day that Zoe died was a complete shock. It was not anything that we were expecting.
Leah MG Jayanetti (16:09.584)
Yeah.
Keira Sorrells (16:21.322)
She had recovered from the flu and pneumonia the week before. And then after a day and a half home after that rehospitalization, we had to rush her to the hospital in respiratory distress. I remember we had an oxygen tank and the highest you could turn it up to was four liters and it was at four liters and we still had 30 minutes to get to the hospital. She did stabilize and we got kind of settled in the
PICU, thinking, okay, here we go, another hospital stay, not uncommon for medically complex babies like her. And in the middle of the night, she started to decline and we were asked to wait in the waiting room while they intubated her. And we sat in that waiting room for three hours alone.
Leah MG Jayanetti (17:03.919)
Hmm.
Leah MG Jayanetti (17:15.061)
Ugh.
Keira Sorrells (17:17.61)
I just remember, you know, just how hard the chairs were. They were these plastic chairs. Nobody came to update us. No one brought us a coffee or a blanket. I would buzz the nurses station and they would just say they're still working on her.
Leah MG Jayanetti (17:35.781)
Hmm.
Keira Sorrells (17:37.214)
Having been in the NICU for as long as we were, I knew that intubations and extubations, it should not take three hours to intubate her.
And I just remember, you know, when we left her, she was on BiPAP. And of course they were going to intubate her and put her on the ventilator. And I remember hearing something really big and clunky kind of like coming down the hallway. And I saw an oscillator and a tank of nitric being wheeled into the PICU by the respiratory therapist. And I just knew it was her. It was for her.
Leah MG Jayanetti (18:16.314)
Hmm.
Keira Sorrells (18:18.782)
So Zoe died at 9 a.m. that Saturday morning. And it was almost exactly 24 hours from the time that we walked into the ER doors. And that was after coding in front of us. This was the second time that we watched them do chest compressions on our one-year-old little baby. And the doctor just asked, do you want us to keep working or do you want to hold her? We didn't step out into a conference room. We
without discussion, my husband and I both just said we want to hold her. You know, she had had enough and we had to let her go.
Leah MG Jayanetti (18:48.974)
Right.
Keira Sorrells (19:02.06)
What I would learn a few weeks later was that during those three hours that we were in the waiting room, Zoe coded seven times. And we were never given the opportunity to tell them to stop.
Leah MG Jayanetti (19:12.326)
Wow.
Keira Sorrells (19:20.512)
You know, I don't claim to be, I am not a healthcare professional. Maybe three hours goes by in a blink when you're trying to save a child. But we had been forgotten. And I think that that's one of the most egregious things that could have happened was that we were stripped of the agency to make a decision for our child.
Leah MG Jayanetti (19:34.726)
Yeah.
Keira Sorrells (19:51.448)
So that's, you know, really what led me to where I am today. Just, I think if Zoe was still alive, I would not be doing this. I'd be too busy. But it was just that, it was that experience. It was her death. And then later realizing that our experience in the NICU is not what
Leah MG Jayanetti (20:05.425)
Mm.
Keira Sorrells (20:22.016)
a lot of other families experience in terms of the support and the guidance and the coaching that we received from our NICU team. And so that's why we developed the NICU Babies Bill of Rights.
Leah MG Jayanetti (20:45.861)
I can't thank you enough for sharing this. Everybody out there who's listening, I've heard this before. And I tried my best to stay silent while you were reading it because it is such a powerful and honest and real and vulnerable thing to do. And...
Speaking up is something we hear a lot of our families feel bad about speaking up, or maybe they shouldn't, or who are they to speak up, and lending your voice, especially yours, I think it is one of the most powerful things that we can give. It's you showing up and showing your presence to all of our families who are there now. So I have deep gratitude for that as well.
I think about...
when you said you were forgotten. And I think sometimes maybe not even forgotten, but selectively removed is something that also happens. I see a lot where it's like, oh, it'll be too much for them. Or I don't know how to talk to this parent about this. I don't know how to explain this. Or they'll be in the way. I think it's something that I know I advocate highly for.
Keira Sorrells (21:57.404)
Mm. Mm.
Leah MG Jayanetti (22:13.937)
being present for both birth and death in the NICU myself with other families. It's been a gift to me to be able to be the parent support to say, this is what's happening, this is what's going on. Do you have any questions? Is there help to manage the parents in the room? Because the doctors have to attend to the baby. The nurses are assisting that way. And without somebody there who can
be the bridge between parents either are forgotten about or forced out. And...
Keira Sorrells (22:50.086)
Yeah, you know, it's interesting that you say that about the, you know, the bridge between because in the middle of the night when we were, well, no, I guess it was after we had been brought back. I ended up calling one of Zoe's neonatologists and just kind of told her what was happening and she showed up. She had privileges at the children's hospital.
Leah MG Jayanetti (23:13.585)
Amazing.
Keira Sorrells (23:17.312)
So she showed up and then, you know, word spread because we were just across the street from where Zoe had spent nine and a half months. So she had, you know, she had developed a bit of a following with the staff there. And the parent support coordinator showed up as well because she also had privileges at the Children's Hospital. And that's exactly what they were. Because this staff in that hospital
Leah MG Jayanetti (23:29.335)
Yes, yes.
Leah MG Jayanetti (23:40.539)
Mm-hmm. Mm-hmm.
Keira Sorrells (23:47.106)
Like you said, they're attending to the baby. But Anne and Dr. Maynard were the ones that supported us and kind of helped us understand what was happening. It was the two of them that said, you can hold her as long as you want after she had passed. Would you like to give her a bath?
and took my phone and started calling people to let them know what had happened. Because we didn't know. We had not planned for this at all. And they really were that bridge.
Leah MG Jayanetti (24:16.785)
Hmm.
Leah MG Jayanetti (24:26.191)
Yeah, no.
Yeah.
Leah MG Jayanetti (24:34.713)
Yeah. Yeah, I think it's, you know, and we're talking about it particularly here in death and grief, but so many components of the NICU, as you know, you were the parent for your three babies, and for me, of course, she was not in the NICU, thank goodness. And it looked a little more administrative, right? Those first feelings that you said, you felt, you know, when I was able to recount those things.
And we've had other folks on our podcast before too, who have saved their baby's lives because they knew what tube size to use, what medication was wrong or right or whatever. And so, yeah, that does make you a very important part of the parenting. And I think it's something that even in birth, which is for maybe going to the NICU becomes traumatic, even if the pregnancy was rainbows and roses, which I talk about happens very rarely.
Keira Sorrells (25:14.744)
Yeah.
Leah MG Jayanetti (25:34.437)
But, and even if the delivery, everything seemed okay until the moment, then it becomes traumatic. So even if everything else was perfect, which almost happens almost never, but even if everything else was perfect, then they say, your baby's not doing well. Like, oh my God, we gotta go, we're calling a code. We gotta go to the NICU. Now it's scary. And if nobody's there with the birthing person, the mother, if that's who it is, saying this is what's going on and this is what's happening,
and with the other parent, if there's somebody else there, a grandmother, a father, other mother saying, let's go, you're coming with me with your baby to the NICU because your baby needs you. And if the team isn't prepared to receive that baby with a parent, what happens? The parent gets pushed out. So even in like the birth, it can happen where the voice is removed or the support for the baby
Keira Sorrells (26:12.878)
Right. Yeah.
Leah MG Jayanetti (26:31.129)
and subsequently getting that parent bonded as quickly as possible. You know, I don't know, was your husband able to go with the triplets when they got admitted?
Keira Sorrells (26:41.198)
So he stayed with me. I remember he was with me in recovery. I was in recovery for a while. I remember, actually it was Dr. Maynard who admitted Avery and Lily and she came in and kind of gave us an update but wasn't able to update us on Zoe because, again, she was not stabilized for quite a while.
Leah MG Jayanetti (26:47.088)
Okay.
Keira Sorrells (27:10.102)
I believe he, no, I was on the mag, you know, some memories are a little fuzzy, but I believe he was able, I believe he went and saw them once I got resettled back into a room. And then he went up there. But yeah, yeah.
Leah MG Jayanetti (27:16.384)
Lord, that feels terrible.
Leah MG Jayanetti (27:30.865)
Sure, sure, makes sense.
Leah MG Jayanetti (27:36.689)
So you mentioned the mag and something that to me is really impressive. I mean, how old are the girls now? Just so everybody gets a perspective. They weren't just born last week, right? How old are they now?
Keira Sorrells (27:49.272)
So, Avery and Lily.
No, Avery and Lily are, they'll be 19 in December. So this was, this was a while ago.
Leah MG Jayanetti (27:58.276)
Okay.
A few minutes ago. Okay. So, because I think this is something when I hear you talking about this, how clear your memories are and, like even to the sensory, like what you saw, how the chairs felt. And I think in the moments in the NICU, it can feel like you remember nothing because everything's overwhelming. Like you, all of your senses are on high and also
Keira Sorrells (28:02.359)
Yeah.
Leah MG Jayanetti (28:29.947)
there's too much coming in to manage it. And I hear a lot of families talking about, oh my God, you know, I can't remember anything, or, you know, I hope I remember everything or hope I remember nothing. And I think this is all, you mentioned part of the trauma response too about, you know, you said about the connection with the babies at first, normalizing that is really key too. So I just asked you two different questions at the same time, but how do you feel like your
Keira Sorrells (28:32.493)
Yeah.
Leah MG Jayanetti (28:59.665)
processing over time has been to get those memories back clear.
Keira Sorrells (29:04.716)
Hmm. I think that's a really good question. And it has taken a lot of therapy for a lot of years. I was not in any sort of therapy until after Zoe died.
And that's when I just fell into a very deep depression. It was major clinical depression, post-traumatic stress disorder, generalized anxiety disorder, compounded by complex grief. But there are those memories though that are just crystallized.
Leah MG Jayanetti (29:37.755)
Mm-hmm.
Keira Sorrells (29:56.558)
One of the things I think that really did help me at the time was when they were in the NICU, this is back when blogs were like the only thing we had because we didn't have social media. But I did start blogging about the NICU and then that turned into the grief processing and just that writing was really important.
Leah MG Jayanetti (30:07.205)
Yeah.
Leah MG Jayanetti (30:18.533)
Hmm.
Keira Sorrells (30:25.9)
I have it now to look back on as well. And then of course, moving into, you know, supporting other families and then moving into advocacy, I've had so many opportunities to share my story in very different settings. And I think something that I have learned that's really key in sharing those stories is not necessarily what happened to my babies, right?
Leah MG Jayanetti (30:42.181)
Mm-hmm. Mm-hmm.
Keira Sorrells (30:54.432)
It's what happened to me. It's how I felt in those moments, especially when you're talking to, you know, to healthcare professionals. I mean, they see babies get intubated all the time. They see babies develop NEC. They see babies, you know, two steps forward, three steps back. They see all of that. And it used to be that I would, you know, I would run through like every medication they had been on, every, you know, procedure they had, because I thought that's what was important, but
Leah MG Jayanetti (30:56.561)
Hmm.
Keira Sorrells (31:23.884)
What's important when we share our stories is to talk about the impact on us as parents. You know, how does it really make you feel? And I think through preparing for sharing my story, whether it was, you know, writing a blog or it was, you know, presenting at a conference or a physician journal club. I think there were,
Leah MG Jayanetti (31:31.834)
Mm-hmm.
Keira Sorrells (31:53.166)
You know, there are definitely moments in preparing that has me, helps me to really think about and get, you know, deep under the layers to how it really has affected me. I will say that,
Leah MG Jayanetti (32:04.485)
Yeah, yeah.
Keira Sorrells (32:11.21)
it took a lot of not just therapy. I mean, I had grief counseling. I had a psychiatrist. I had a Christian counselor. I started running, you know, I had a, you know, a mom's group. It was all of these things that I built the support system up around me. Because I'll tell you, you know, we,
I mean, it was just a couple of weeks after Zoe died and my husband and I were like, okay, we're going to start a foundation. We're going to keep her memory alive, right? We're going to help other families. And in hindsight, I wish that we hadn't jumped into it so quickly because I think I used it as a way to avoid facing the pain. You know, I told myself, I'm helping others and it's helping me.
Leah MG Jayanetti (32:43.717)
Mmm.
Leah MG Jayanetti (33:01.873)
Hmm.
Leah MG Jayanetti (33:06.907)
Right.
Keira Sorrells (33:07.128)
but I wasn't really processing what we had experienced. And so I'll tell you, I mean, and I did that for many years. I mean, it was probably a good, I don't know, maybe six or seven years. And I remember supporting a mom who had a 24-weeker. She lived for a month and passed away. And I went to the funeral and I was in bed for two weeks after that.
Leah MG Jayanetti (33:14.395)
Yeah.
Leah MG Jayanetti (33:18.883)
Sure.
Keira Sorrells (33:37.034)
It just, it sent me back. Absolutely. And that was really a wake up call to me. And I was like, okay, I got to step back from this. I mean, it's really when I stepped back from doing any kind of one-on-one support period, because I realized that that was not helping me heal. And was I potentially doing some harm to these families that I thought I was helping? And so yeah.
Leah MG Jayanetti (33:37.221)
Yeah, took everything out of you.
Leah MG Jayanetti (33:50.885)
Mm-hmm. Mm-hmm.
Leah MG Jayanetti (34:02.692)
Right.
Keira Sorrells (34:05.39)
It was, that was a big wake up call.
Leah MG Jayanetti (34:05.699)
Yeah, you've, yeah, you talk about that a lot. And that's something in NPN that you've always taken very special steps to even when we have big meetings, small meetings is to say, Hey, we're all, you know, wounded warriors, right? These, everybody who's showing up has had an experience in the NICU almost, or they're close or they're providers who have had their own
Keira Sorrells (34:32.974)
Right.
Leah MG Jayanetti (34:34.573)
you know, ongoing trauma of tending to one baby who's going through a code and then turning to the next one who can't feed and trying to hold it all together. We're all in this world. And you've talked a lot about healing yourself like you're talking about right now. Tell me about the trauma trifecta you use that phrase with me before.
Keira Sorrells (34:40.312)
Yeah. Yeah. Yeah.
Keira Sorrells (34:57.782)
Yeah. So I call it the trauma trifecta because we as leaders, whether you're a leader of a program, a leader of an entire organization, an author, an advocate, you are a leader, right? And you have experienced something traumatic in having a NICU baby, having a loss. It doesn't matter how long the NICU stay was or how short it was.
Leah MG Jayanetti (35:13.083)
Mm-hmm.
Keira Sorrells (35:26.658)
when a pregnancy ends in a way that you don't expect it to, that can feel traumatic for a lot of people. And then when we start these organizations and we start these programs, a lot of them are grounded in the importance of peer-to-peer support. So that means you're either staffing or you are managing volunteers that have also had this experience. And then you're going right back in
sometimes into the very hospital where your own experience occurred and you're supporting families who are in the midst of their own trauma. And that is significant. You know, that is very different than if I was to go work for Girl Scouts of America. You know, I mean, it's, it's different when the cause is so deeply rooted
Leah MG Jayanetti (36:16.218)
Right.
Keira Sorrells (36:23.36)
inside of you and I mean it has to do with the most precious thing in your life, your children, right? And I think that you know like me and I'm not saying that everybody does this by any stretch but I think it's really really important particularly those that are just getting started with their organizations who are you know just not significantly removed from their actual experience to do the healing work yourself you know
Leah MG Jayanetti (36:28.943)
Right? Yeah.
Keira Sorrells (36:51.758)
How many times does a peer support person tell a family, take care of yourself so that you can show up for your baby 100%? Well, it's the same way for us as leaders. We've got to take care of ourselves so that we're showing up as our best selves for those that we're leading. And then we're setting an example for our staff, our volunteers, who are the ones going back in to support the families one-on-one.
Leah MG Jayanetti (36:56.795)
Hmm.
Yep.
Keira Sorrells (37:18.072)
So yeah, we talk a lot about secondary trauma, vicarious trauma, you know, really saying it's okay to step back when you need to step back, that your family that you have now, you can't get time back with the family that you have right now. There will always be a need, unfortunately, for supporting NICU and bereaved families. And what's most important
Leah MG Jayanetti (37:18.726)
Yeah.
Leah MG Jayanetti (37:28.849)
Mm-hmm. Mm-hmm.
Keira Sorrells (37:47.726)
is you and your family.
Leah MG Jayanetti (37:52.239)
Yeah, yeah, because we need, we need all of us to move this forward. We need everybody to feel well, essentially, in order to help the next family in order to sustain this, we can't lose on fatigue, right? So it's absolutely, I mean, even when we bring in for us at ICBB, when we bring in new parent mentors, it takes a long time because we do
Keira Sorrells (37:56.266)
Mm-hmm. Absolutely.
Keira Sorrells (38:03.118)
Yeah.
Leah MG Jayanetti (38:19.835)
Thankfully, I do our trainings and I've worked and studied from Mary Coughlin and the trauma informed professionals and multiple different things. And it is really crucial for folks who come back to have the opportunity to heal. And certainly when they come back, especially if it was their own hospital, but even if it's not, it takes time before they really can be with a family. We have to come on the elevator.
Keira Sorrells (38:47.224)
Right. Yes.
Leah MG Jayanetti (38:49.765)
Just the doors open, you know, smell the soap, hear the beeps, have to re-regulate our systems. And, but I think there's something very powerful that I've heard. I mean, you citing it yourself, right? Being able to tell your story over and over again from other people who are either, you know, ambassador families or they're providers, or they've just joined another NICU organization is
Being able to talk about it, being able to talk about it and getting more comfortable talking about it helps the process. Whether it's writing when you're in the NICU, writing in your journal, to then speaking about it, to then supporting other people, hearing other people's stories, being able to show up for them. I think it does absolutely help the healing process. But what I'm hearing from you, and you tell me if I'm wrong, is we can't take it hastily. That this will always be there.
that motivation and this happens for all of us, I don't know if you hear this other times, towards the end of a stay in somebody's NICU. And sometimes even the first time we meet somebody, they're like, I want to join ICBB, I want to do this. We're like, whoa, yes, this is great. You just had a baby, so you are in like mama bear mode. So you have a ton of air quoting for the people listening, energy. It's not true energy, it's adrenaline, right? And you feel like, because you have to kind of take over the world for a little while
Keira Sorrells (39:52.32)
Mm-hmm.
Keira Sorrells (40:00.332)
Yeah. Yeah. Yes.
Right.
Keira Sorrells (40:11.98)
Yeah.
Keira Sorrells (40:17.922)
Right.
Leah MG Jayanetti (40:18.033)
when you're caring in fight or flight, or you're fighting for your baby's life. So it makes sense to me that you and your husband were like, we're gonna fix it tomorrow because you are running on that mama bear, daddy bear, we have to fix it now, we're in control of this. And so we always try to back people up and say, yes, yes, right now we're taking care of you. Okay, and I'm gonna save this seat here.
Keira Sorrells (40:23.447)
Yeah.
Keira Sorrells (40:27.948)
Mm-hmm. Right.
Keira Sorrells (40:34.638)
Right.
Leah MG Jayanetti (40:47.663)
I'm gonna keep this seat here for you, okay? We don't really want to see you back for at least four years. We want to see you at our family-centered stuff where you come as a family. And then with some time, don't worry, we got a big board table, we got a big table here for you. We got space, we're waiting for you here. Does that sound right to you?
Keira Sorrells (40:58.188)
Yes. Yes.
Keira Sorrells (41:05.774)
Yeah. Yeah, absolutely. Yeah. Oh, 100%. I mean, it makes sense because, you know, like you said, you want some sense of control because you have lost all control. And it makes sense that, you know, you're trying to fill a hole in your heart.
You're trying to make sense of something that doesn't make sense. You're trying to find purpose and meaning in the most awful thing happening in your life. And I get that. I was there 100%.
Leah MG Jayanetti (41:31.205)
Yeah.
Leah MG Jayanetti (41:40.624)
Right.
Keira Sorrells (41:47.808)
And I wonder what I might've missed with Avery and Lily at such a young age when I was pouring myself into this foundation and everything I read had to do with loss and NICU. And it was just, it was all I thought about.
Keira Sorrells (42:12.224)
And it was like, you know, putting my energy there instead of putting my energy here inside me, making sure that my husband and I were okay, because we were not okay, and making sure that I'm, you know, showing up a hundred percent for my children. And I, you know, I, I think there's also that, I mean, I, I've talked about this a lot in the past too, that
Leah MG Jayanetti (42:18.577)
Hmm. Hmm.
Leah MG Jayanetti (42:24.667)
Hmm. Right. Yeah.
Keira Sorrells (42:41.29)
with the loss of Zoe, I'd already felt like a failure in so many ways, right? I couldn't get pregnant by myself. I couldn't stay pregnant. Couldn't protect Zoe from dying. So I'm going to parent her and make sure she leaves this legacy, right? And I remember sitting in one of...
Leah MG Jayanetti (42:46.449)
Hmm.
Leah MG Jayanetti (43:03.494)
Hmm.
Keira Sorrells (43:07.488)
my, I had this wonderful, amazing grief counselor, it was through a church. She had been a PICU nurse who had often been assigned to the children that were terminal. So she had spent a lot of time with families very much like mine. She herself had had multiple miscarriages. It was like she was delivered to me on a silver platter. I mean, I could not have asked for a better grief counselor.
Leah MG Jayanetti (43:29.659)
Hmm.
Leah MG Jayanetti (43:35.002)
Wow.
Keira Sorrells (43:36.81)
But in talking about this with her at that time, she said, Keira, that's not your job to leave Zoe's legacy. At the time, I thought, you are crazy, lady. I am not coming back to talk to you. You know, I was so offended that she would tell me that. And she said, you know, Zoe doesn't need you anymore. And again, I was like, you are insane. What are you talking about? Of course my child needs me.
Leah MG Jayanetti (43:55.952)
Yeah.
Leah MG Jayanetti (44:01.105)
Hmm.
Yeah!
Keira Sorrells (44:06.978)
You know, of course, you know, we talked about this more and definitely in hindsight and you know, many years past, she was exactly right. And she said, you know, there will be people that you will meet that will be completely changed when they hear what you've been through. There are other people that will be touched and then they'll go on about their lives. And then there are other people that, you know, it will mean absolutely nothing to them. And she said, and it's not your job
to make everybody change who they are because of what you experienced. She said, you know, Zoe is perfect. Zoe is absolutely fine. I mean, I am a Christian and I do believe that she is in heaven and that she has a perfectly whole and healthy heavenly body. That is my belief.
Leah MG Jayanetti (45:02.832)
Yes.
Keira Sorrells (45:04.398)
And she was right because I was attaching my, I guess, my worth, my love to this organization, right? That if I could do this, if I could achieve this goal, that would prove that I was a good mom. And you cannot attach, you can't attach your love or your worth to a thing, to an organization.
Leah MG Jayanetti (45:19.014)
Mm-hmm.
Leah MG Jayanetti (45:25.551)
Hmm.
Leah MG Jayanetti (45:32.837)
That's right. Yeah, it's not quantifiable.
Keira Sorrells (45:34.318)
You know, and so over time, I, you know, I absolutely now it's, you know, it's very different. I used to, you know, put everything out there that I was feeling all the time. I would, you know, now it's, it's much more personal for me. You know, it was like, I was trying to show, look, I'm a good mom, even though my child died. Right. But now it's just me loving her is enough. That's all. Nothing more.
Leah MG Jayanetti (46:07.065)
It's courage. It's a lot of courage.
Yeah, because our world doesn't give our mothers, our families that space. And so I think that's quite profound. And it's true. You are enough as you are.
Keira Sorrells (46:43.982)
Absolutely. Absolutely.
Leah MG Jayanetti (46:46.321)
Yeah, I had a great conversation with another mother just recently at a birthday party, which was not where I usually have my NICU conversations, but that's my life. That's what happens. I'm almost always wearing this. And she said the same thing. She felt so, you know, I'm a failure. And to this day, the kids are older. I'm a failure. I couldn't have a baby. I couldn't have a full term. Look at this body. Couldn't do it. I couldn't do it.
Keira Sorrells (46:54.86)
Right. Mm-hmm. Mm-hmm.
Leah MG Jayanetti (47:16.401)
Why do you say that? And she sort of tried to giggle it off, like she didn't really mean it. Like, you know, I kind of like a failure, ha ha ha, which tells me that's how you feel, but you know you're not supposed to say it. And if you say it, then it's wrong, but laugh. And oh my gosh, so much judgment, judgment, judgment. And I said, well, to me, and this is what I know, same thing for you in that same judgment, which I also practice everybody out there. Everything that I say outside, I also have to practice to listen to myself.
Right? Is I know that if you could have done something different, you would have. Which means it's not your fault. Because if you could have changed, right, for me, if I could have not had this ridiculous uterus that contracted and looked like I was in labor starting at like 16 weeks every week or twice a week, I would have done that. I would have done that. Right?
Keira Sorrells (48:13.218)
Mm-hmm. Right. Yeah.
Leah MG Jayanetti (48:16.283)
Like for darn sure, especially the folks who are showing up in this way and having these deep feelings. Yeah, if you could have, you would have. So that makes it, it's out of your hands.
Keira Sorrells (48:27.448)
Exactly.
Right.
Leah MG Jayanetti (48:32.911)
Yeah. Wow. I'm very grateful for that grief counselor you had.
Keira Sorrells (48:39.404)
Hmm, me too. Oh my gosh.
Leah MG Jayanetti (48:41.765)
Thank you for sharing that wisdom.
Leah MG Jayanetti (48:47.675)
Wow.
So you created the first foundation and then did that morph into what NICU Parent Network became?
Keira Sorrells (48:59.64)
So the first foundation was the Zoe Rose Memorial Foundation. It was a small nonprofit outside of Atlanta. Our goal was to help families who are transitioning home with babies with medical equipment. Because we felt completely lost when we left the NICU with three babies and all these machines. Yeah. For sure.
Leah MG Jayanetti (49:05.382)
Mm-hmm.
Leah MG Jayanetti (49:18.245)
Yeah.
Leah MG Jayanetti (49:23.121)
It's a full unit, practically.
Keira Sorrells (49:28.52)
Because of that, I started to meet people and was invited to an advocacy meeting in Washington, D.C. Now it's the National Coalition for Infant Health. Before, it was called the... What was it called? I can't even remember what it was called, but this coalition has been through about three different iterations. So I believe the one that I went to was the second iteration.
Leah MG Jayanetti (49:42.976)
Oh yeah.
Keira Sorrells (49:56.82)
It was run by then Healthy Mothers Healthy Babies, National Healthy Mothers Healthy Babies. And I was in this room with about 60 people. And, you know, there are people from the AAP (American Academy of Pediatrics) and NAN and AWAN and HRSA and NPA and, you know, all these provider associations. And I was one of three parents in the room.
Leah MG Jayanetti (49:56.933)
Mm-hmm.
Keira Sorrells (50:21.142)
And they were talking about creating a NICU journal for families. They were talking about creating a discharge planning tool to help nurses teach families and have them ready for discharge. But they did not have families on their planning committees. They did not have families on their development committees. And I just sat there thinking, how do you know
Leah MG Jayanetti (50:27.077)
Mm-hmm.
Keira Sorrells (50:48.77)
that what you're spending all this time and money on is actually gonna work. How do you know it's gonna help? And it was just, it was unbelievable to me. This was about 15 years ago. So I ended up having a conversation with the then executive director of Healthy Mothers, Healthy Babies and said, you know, hey, what do you think about a parent advisory board for this coalition? And she pretty much said,
Leah MG Jayanetti (50:57.605)
Mm-hmm.
Leah MG Jayanetti (51:16.966)
Yeah.
Keira Sorrells (51:18.296)
great idea, go ahead and do it. I thought, okay. Right. No, thankfully I had a very good relationship with an advocacy director at a pharma company. And so I brought the idea to them and I said, I would love to get these parents together that are leading programs, leading organizations, you know, because they were trying to, this company at the time was trying to help develop
Leah MG Jayanetti (51:20.945)
That's the best.
Leah MG Jayanetti (51:35.739)
Mm-hmm.
Keira Sorrells (51:48.204)
you know, maternal infant health kind of coalitions around the country with parents involved. What a novel idea. And they said, great, I love that idea. So, you know, it was probably the fastest grant I've ever received and then put on an actual event. I think we got the grant in July, we had the event in October. It's never happened that quick.
Leah MG Jayanetti (51:52.325)
Mm-hmm. Mm-hmm.
Leah MG Jayanetti (52:14.521)
Wow. My goodness.
Keira Sorrells (52:18.23)
And yeah, and again, you know, like I said, this was before, you know, a lot of social media. And so it was really kind of, okay, searching the web, like what other organizations are out there for NICU parents, for preemie parents. And so it was bringing some, you know, inviting these parents to this meeting really to just kind of see what would happen. I mean, I honestly didn't have any clear objectives.
Leah MG Jayanetti (52:33.029)
Mm-hmm.
Leah MG Jayanetti (52:40.635)
Mm-hmm. Mm-hmm.
Keira Sorrells (52:45.558)
And I remember talking to my husband ahead of time going, okay, this is either going to go really well if people want to collaborate and talk to one another, or it's going to go really awful if people, you know, just want to hold their cards to their chest, you know, and not share best practices and that kind of thing. Thankfully, everybody was very energized being together because it's just like when you meet another NICU parent or another bereaved parent and they just get you.
Leah MG Jayanetti (53:01.711)
Mmm.
Leah MG Jayanetti (53:13.851)
Mm-hmm. Yeah.
Keira Sorrells (53:15.15)
Right? It was the same, but on a different level because not only did they understand the personal experience, they understood what you were trying to do from an advocacy standpoint, from a support standpoint. It was connecting with another leader. And so that was kind of how it started. We started, we officially launched in 2012 with six support organization members. All of those members,
Leah MG Jayanetti (53:30.981)
Mm-hmm.
Keira Sorrells (53:45.58)
The originals are still members today and I actually realized I need to update my bio because we have 56 member organizations now across the country. Yeah. And it was just, it was bringing them together to create a collective voice for NICU families and bereaved families so that we could partner with these provider associations and we could partner with researchers to make sure that the parent perspective is a part of what they're doing.
Leah MG Jayanetti (53:52.225)
Oh wow.
Leah MG Jayanetti (54:02.213)
Mm-hmm. Mm-hmm.
Keira Sorrells (54:15.448)
to make sure that what they're doing is the most effective it can possibly be. It's also to create this network and professional development because very few of our members have a background in nonprofit management or community organizing. I think we have a couple out of 56, but most of these parents are coming from completely different careers. And then they're starting a nonprofit, which is starting a business. You know, it's, it's very rare. Yeah. Yeah.
Leah MG Jayanetti (54:47.343)
Yeah. Well, that's what I forgot to mention in your bio was the start of the NPN podcast to support organizations.
Keira Sorrells (54:58.176)
Oh yes, exactly. Yes, we're, yes, just like this. And it is specifically for those who have lived experience and are now, you know, wanting to be advocates and lead programs, lead organizations to help other families.
Leah MG Jayanetti (55:01.477)
Just like this, it's amazing.
Leah MG Jayanetti (55:17.563)
So I think something that I've seen change, I think we've been, I don't know, I should have looked this up before coming here. I think we've been members for five, six, seven, I don't know, something like that, and maybe more than one hand, a number of years. And I've seen a great change, and especially this past summer, which I've alluded to before on other podcasts, episodes rather, was doing Hill Day with you all
Keira Sorrells (55:31.554)
Yes.
Leah MG Jayanetti (55:47.065)
and getting into the advocacy.
I would be remiss if we didn't talk a little bit about the NICU Babies Bill of Rights here. So share a little bit about that for those who don't know.
Keira Sorrells (55:57.57)
Yes.
Keira Sorrells (56:02.158)
Yeah, absolutely. For sure. So this is actually our very first collaborative project as a network in 2013. So we launched in 2012 and at the summit that year, it was what if we create a NICU Babies Bill of Rights and kind of akin to a patient's Bill of Rights. So we've been through several updates as you know,
practices have changed as language has evolved. And so our most recent update came in 2024 and it is written as if the baby is speaking to their care team about all the different ways to support them and support their families. You know, we have the right to inclusion, the right to my parents' care, the right to protected sleep.
And all of these are, again, they're written in a way to teach healthcare professionals how to best support the baby. And it's all grounded in those core tenets of family-centered care, collaboration, participation, respect and dignity, information sharing. I mean, that's what all of those are. And we were really fortunate earlier this year
Leah MG Jayanetti (57:17.617)
Mm-hmm.
Keira Sorrells (57:28.162)
to have Congressman McGarvey in Kentucky and Congresswoman Houchin in Indiana to actually file House Resolution 236, which is support for the goals of a NICU Babies Bill of Rights. Again, you know, pointing to the importance of parental mental health, parent integration and participation at the bedside, informed consent. It's really
It's really, I mean, never in my wildest dreams did I think that our Bill of Rights would actually make it to Congress. And we are hoping that next year it will be introduced on the floor for a vote. You know, time will tell, but yeah, that's exactly what our Hill Day was all about, was educating
Leah MG Jayanetti (58:15.654)
Mm-hmm.
Yeah.
Keira Sorrells (58:24.32)
the staffers of congressmen, congresswomen and senators about what it's like because, you know, very few people actually know what the NICU is and what that means in terms of what's happening to these parents and how they can best be supported.
Leah MG Jayanetti (58:35.088)
Right.
Leah MG Jayanetti (58:40.496)
Mm-hmm.
Leah MG Jayanetti (58:43.985)
Yeah, I know for us, we visited all of the Florida House offices and Senate offices. And then anybody we saw in the hallway, we picked up Ohio also because we just happened to be there. They were incredibly receptive, incredibly connected. And these are young, mostly male staffers.
Keira Sorrells (59:03.33)
Hmm.
Keira Sorrells (59:10.702)
Mm-hmm.
Leah MG Jayanetti (59:11.465)
and it's summer, so it was also we had a bunch of summer interns and a lot of offices, they brought them in as well for a big meeting so they could learn and it became really like a family meeting in each of the offices for us. When we were sitting there, they'd bring in other people, we'd talk about their experience, what they knew about it, what they didn't know, how they could, and it was really something that they were like, well, why isn't this happening?
Keira Sorrells (59:25.966)
Mm-hmm. Yeah.
Keira Sorrells (59:39.349)
Right.
Leah MG Jayanetti (59:41.189)
that that's a good reception to have for trying to get something across the board is like, I thought this already would be true. It's much less of a stretch for them to agree to do it. So we are also in firm support and hoping that this will move forward and bringing more local officials in to what we do because we need them to support, you know, the different initiatives that we're doing, whether it be getting a family to the NICU, being able to you know, move these things forward. So it's, I think a lot of folks, maybe some people go into NICU support, not thinking so much about this side of the advocacy, but it's crucial. It's the upstream effect, so.
Keira Sorrells (01:00:22.818)
Yeah, right. Yeah, absolutely. I think it's really important for those that go into this work, either as a leader of a program or an organization, you're director of something, program coordinator of something, or even as a peer mentor, you have a platform. You have an opportunity to take the experiences of the families that you're supporting and advocate for best practices, for improved policies, improved guidelines, you know, and it's perfectly fine if you want to stay in your support lane, 100%. You know, I know that my lane is not support. My lane is advocacy, right? And that's where I'm staying. But you know, if you do kind of have that, I didn't know I could do that. You know, that is something that we want to help build up next year as we prepare for, we are preparing for another Hill Day in the spring. I don't know the dates yet, but we are going to develop kind of a more tailored advocacy training for our, what we call NICU parent leaders. And so that's, that's anybody who is in any sort of leadership position. It's not just the executive directors or the CEOs or the presidents. This is for anybody that's in a leadership position that wants to use their voice.
Leah MG Jayanetti (01:01:53.391)
Yeah, I think it's going back to families who are in the NICU now who have that energy that want to make a difference, want their experience to, for them, it may feel like it gives them a purpose or it helps them to heal, is you do have a voice. You don't have to use it unless you want to. And it can be just talking because like I said earlier, we need everybody. We need everybody like you at the top advocating to Congress and the White House. And we need everybody working in the middle who are talking to their doctors, being part of the family advisory committee. We need people who are going to come back because that takes a lot. It's a different set of skills to come back to mentor a family. And then we also need you to take care of your babies. Right. We need everybody.
You know, even if that's your jam, I'm gonna do this and I'm gonna talk to the people in my grocery store and my playgroup about what it's like. I'm gonna be with my baby and going to school with them as their assistant, their aide. We need that too. We need all of us and there's no one right way to do this as a parent, right? And so if you have that energy, know that there is this parent organization, the NPN. There's everything from your local hospital all the way up to a national organization that's here for you as a parent in the NICU.
Keira Sorrells (01:03:33.39)
Yes, yeah, absolutely. You know, that's one thing that I said at that very first summit in 2010 was that there is no single organization, no single person that can do it all and do it well for all the families who need help in all the ways that they need help. But by working together, we're going to be much more effective. And that's exactly what you're saying, that this is, you know, from every aspect, every person or company or organization that has anything to do with these babies and these families. We need everybody. The problem is just too complex and too big.
Leah MG Jayanetti (01:04:16.433)
Yeah.
Well, I could talk to you for the rest of my life, clearly. We're missing like seven to eight things that we didn't get to. We'll have you for a second iteration. It'll be the Keira Sorrells' Corner. And it is, those folks who are listening to us in the near proximity to when this goes live, it is November, which is World Prematurity Month, which is a very special month.
Keira Sorrells (01:04:22.414)
Leah, I could do the same.
Keira Sorrells (01:04:28.766)
Yeah. Yes. Right.
Leah MG Jayanetti (01:04:48.945)
It is World Prematurity Day, November 17th today. It is also ICBB's 10th birthday. This was the first day that we delivered our first pack to our first NICU family. Thank you. We're double digits. So it is a very special day. And I actually can't quite believe because we've gone back and forth about what day you're going to come on here that it is today, World Prematurity Day.
Keira Sorrells (01:05:02.03)
Happy birthday! That is wonderful!
Keira Sorrells (01:05:14.87)
Yeah, I know, very very. It is absolutely, it really is and I think one thing that I don't think, I don't know that a lot of people know, is that World Prematurity Day was established by a parent organization. It is now the Global Foundation for the Care of Newborn Infants. At the time it was the European Foundation for the Care of Newborn Infants, but they established World Prematurity Day and I think that that's pretty
Leah MG Jayanetti (01:05:17.679)
It's a very powerful day.
Leah MG Jayanetti (01:05:35.418)
Yes.
Keira Sorrells (01:05:42.356)
amazing and really does speak to the influence and the power of parents that, you know, they established this day years ago and it is celebrated all over the world.
Leah MG Jayanetti (01:05:48.026)
Yes.
Leah MG Jayanetti (01:05:54.809)
It is, it's incredible, truly incredible. So I think as we wrap up, we use the word hope. It's very important for our way of being. What does hope, that word hope mean to you?
Keira Sorrells (01:06:16.141)
You know, I've thought about this a lot, because I know I've been in a lot of rooms before where healthcare professionals worry about giving hope, inspiring hope for families because they don't, they can't say what an outcome is going to be. But I think something that I've learned about hope is that it doesn't matter what the outcome is, that hope is
Leah MG Jayanetti (01:06:27.473)
Mm-hmm.
Leah MG Jayanetti (01:06:32.347)
Mm-hmm.
Keira Sorrells (01:06:49.78)
To me, hope is an expression of love, right? And regardless of what the outcome is, you know, I mean, I had a pregnancy that ended up with the best possible outcome with Avery and Lily thriving as emerging young adults and the worst possible outcome that I lost one of my daughters. But what
Leah MG Jayanetti (01:06:53.179)
Hmm.
Leah MG Jayanetti (01:07:14.543)
Yeah.
Keira Sorrells (01:07:17.518)
you know, what continues to move me forward is hope, which is fueled by my love for my children.
Leah MG Jayanetti (01:07:27.857)
Mm.
Beautiful. And so if there, you will have, you have currently there's somebody sitting by their baby's bedside, there's somebody who's at home, they're driving to the hospital, any words of wisdom or encouragement or something that you would share with someone today?
Keira Sorrells (01:07:51.818)
Absolutely. I think one of the most important things that was told to me by a nurse was that my baby knows my smell, my voice, and my touch. That my touch is very different from the touch of a doctor or a nurse. And don't be afraid to touch your babies.
Don't be afraid to hold your babies because it is healing. Being close to you, your scent, your voice, it's powerful. And so rest in that power and that knowing.
Leah MG Jayanetti (01:08:39.343)
Amen to that. That is beautiful.
Well, thank you, Keira, for joining us today and lending your story and to your girls, all of them, for sharing you with us. And if you're out there, maybe at your baby's bedside right now or driving back and forth to the hospital, pacing at night, pumping milk, recovering after the NICU and trying to make sense of the world. Or maybe it's been 15, 20 years and those memories are still very fresh and Keira and I want you to know that you are not alone and we look forward to being in your ears or on your screen soon. Take gentle care, everyone.
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