The NICU Translated Podcast

Mary Farrelly (00:00)
The NICU is not just a medical journey. It's an emotional and a human one. My guest today, Mahaley Patel, is a licensed therapist who specializes in perinatal mental health, grief, trauma, and infant and child loss. She's also the co-author of Your NICU Story, Reflecting on Your Family's Experience. As both a clinician and a bereaved parent, Mahaley brings a unique and deeply compassionate perspective to the work of helping NICU families process their stories. Today, we're talking about how to honor the NICU journey, even when it's complicated.

and how reflective practices like storytelling and journaling can help parents and professionals find light after loss.

Mary Farrelly (01:08)
Hi everybody and welcome back to this week's episode of the NICU Translated Podcast. I'm so excited to have Mahaley Patel here with us today. And I can't wait for you all to hear her story and really connect with her resources and take as a NICU parent. So welcome to the show.

Mahaley Patel (01:26)
Thank you. Thank you for having me. I'm excited to be here.

Mary Farrelly (01:29)
So, Mahaley, I'm so

excited just to kind of touch on your resource that you created and your story in general. And I guess one place to just really start is every NICU family has their own story to share. And I would love to hear a little bit about your story and what led it to create your NICU story, which is the resource that you've created for NICU families.

Mahaley Patel (01:55)
So in 2023, February of 2023, I had my second daughter, Saachi Had a really normal and eventful pregnancy. She was born full term.

During labor, she had meconium aspiration. So they rushed me to an emergency C-section. She was taken out. ⁓ At that point, you know, we didn't know at that point, but at that point, basically the lack of oxygen and the amount of time she had suffered from lack of oxygen had done so much damage to her brain. Really every part of her brain had been damaged. So, but it was a process to get there.

We were transferred over to Monroe Carroll Jr. in Nashville, Tennessee, which is where we live. We were actually at the hospital down the street. They only have a level three NICU. Vanderbilt, of course, has a level four. So we were taken there and she was put on a cooling blanket, for those that might be familiar what that is. And once you're put on a cooling blanket, it's a process to get off the cooling blanket. And from there, we did a series of EKGs, MRIs, to really better understand

the extent of the brain damage that had been done. I think at first doctors were kind of hopeful that it wasn't too bad. It was minimal to moderate. I remember it was the words that were sort of thrown my way. ⁓ And it turned out to be really severe, some of the most severe that they had ever seen. So on the fifth day in the evening, she died in my arms. And that is

you know, her life and her death is really what led me here. I am a therapist. I specialize in maternal mental health. I was a therapist specializing in maternal mental health before she died, which was really unique. I think that for every bereaved parent, it's so hard, the decision to go back to work and what that's going to look like.

For me at first, it felt like a really unique curse kind of being in this world of how do I do that? How do I even make sense of that? How do I go back to my clients? My clients all knew what had happened. So eventually I went back and decided that if I was going to do, you if I was going to go back to work, that I was going to really make it meaningful and do it with purpose. And I've sort of since my focus still is in maternal mental health, but

focusing more on working with bereaved parents and NICU families. Of course, I still do my sort of traditional, ⁓ you know, pregnancy and postpartum work, but I'm kind of shifting over, shifting lanes a little bit. that, you know, that is how...

I ended up coming with the idea for Your NICU Story. I co-wrote the book. I co-wrote it with Emily Souder who is also a therapist specializing in maternal mental health. And she had written a book, Birth Story Brave, that I had used with clients who were navigating birth trauma.

The layout of the book has some similarities to your NICU story in that it is a guided journal really to sort of take you through your experience. It's designed to really be a tool. And I just kept coming back to that, you know, we had the worst outcome for a NICU stay.

But what I felt really confident in is that, this is my first NICU stay with a baby, ⁓ was that regardless of the outcome and regardless of the duration of the stay for many families, I think the majority of families walk away with so much trauma. And...

I think that piece of it really made me want to create a tool for NICU families. And I sort of kept going back to the format of what I knew Birth Story Brave was and how I had seen it used, how I had used it as a clinician. And I had seen the effect that it had had on clients who were navigating birth trauma. And I really wanted it to be done in that way. And that's what led me to reach out to Emily, introduce myself, tell her what my idea was.

and she was so open to collaborating on it, which I feel really grateful for. So that's a very long answer, that's, those are the steps to how we got here.

Mary Farrelly (06:32)
Stories often have a point, like you can look back on them and see like where it all kind of, the different dots and different connection points that led you to this point, but while you're living it, it's always like, what is going on? So I'm so sorry for your daughter's loss, and I think it is so beautiful how you're sharing her light and her name and her gifts with the world and the NICU community in particular, because some of the work that I do is just recognizing that the NICU community

Mahaley Patel (06:49)
Thank

Yes.

Mary Farrelly (07:02)
and especially with lost families is so little spoken about. It's often in its own kind of bubble. Unless you've lived it, you don't really understand it because it's so little spoken about. But that can leave families feeling even more isolated and more overwhelmed by the experience simply because there's, you you're looking around in your community and it's that behind closed doors, no one's really shared about it, even if it maybe did touch their lives at some point. So that just compounds that trauma. And I see where

Mahaley Patel (07:18)
Absolutely.

Mary Farrelly (07:32)
Working as a NICU dual and as a NICU nurse, see so many touch points where the trauma is maybe intensified by different...

Scenarios or different paths or different words that were used but as you said even if your NICU stay whether your NICU stay was four hours long or four days four weeks four months Beyond it really impacts how you see yourself as a parent right and like how you step into that role But oftentimes there's just so much fight-or-flight happening and so much going on that families just really don't have a pathway for processing or thinking about things so I think it's incredible to be able to have this resource and I love how you

designed it with Emily how it's storytelling. It's truly helping you and the families like process the beginning, the during, and even that those next chapters because I always say you know, the NICU's chapter one and then there's like after NICU which is an entire other chapter filled with new faces and new experiences and new sensations. So I think it's so incredible that you kind of guide families through it and give a space because sometimes as parents you really need

that protected space and prompting almost to be like okay let's sit down and do the thing instead of being like okay time for self-care and you're like okay now what do I do? So tell me about how when you're when you're envisioning your NICU story as a tool and from your lens as a professional who works with families as a mental health support at what point in their journey do you suggest that families start exploring this or when do you even suggest versus when you see families really ready to be able to process their story?

Mahaley Patel (08:50)
Yeah.

Mm.

Mary Farrelly (09:10)
Sorry.

Mahaley Patel (09:11)
It's such

a good question. Emily and I were actually doing a podcast together yesterday and this comes up a lot. And I think for the majority of people, I know for myself, I can't obviously speak for every NICU family. When you're in the NICU, you're in the NICU. You are not thinking about anything else. And...

I know if I had, first of all, would have loved to have been handed this tool, but I know for a fact that there would have been some distance between my NICU stay and my daughter's death.

Mary Farrelly (09:45)
Mm-hmm.

Mahaley Patel (09:47)
for when a tool like this would have actually been helpful and useful. And so I do think that having some distance between...

a family and a parent's NICU stay is really helpful. I think maybe the duration of that might depend on how long they were in the NICU, whether their baby got to come home with them, whether they didn't, whether their baby still has medical needs after. But I do think that there some distance is really helpful. In my perfect world, if I could...

Mary Farrelly (10:14)
Mm-hmm.

Mahaley Patel (10:26)
wave a magic wand. I would love for this to be a resource that is handed out at NICUs to families. I know when we left Monroe Carroll, there was like a little pile of resources that we were handed and I put it on a desk in the corner. And it wasn't until months later that I even picked it up and looked at what was in there. And that's sort of how I envision this book, right? Given by a family's NICU, by a provider, by a friend, by a doula.

Mary Farrelly (10:49)
Mm-hmm.

Mahaley Patel (10:56)
And they wake up one day and they say, OK, I think I know there's something there from my NICU stay. And I think now I'm ready to face whatever that is. But I think you have to get out of that initial kind of darkness and cloud and fog before you can really pick up a tool like this and really use it. ⁓

Mary Farrelly (11:02)
Mm-hmm.

Mahaley Patel (11:19)
in a way where it would be helpful. So I know that's not like a specific answer of like three months in between your stay, but I think there will come a point where you realize, and I know it was that way for me, you realize there is something there. This is still sitting with me, even if I got to bring my baby home, even if they're doing really well, it's still sitting with me. And I think now I'm ready to face it head on.

Mary Farrelly (11:24)
Right.

Mm-hmm.

Yeah, I've heard it described by families that I work with is it's almost this like not quite an elephant in a room, but like a little like a little tag along that's always with you and in those early days home even regardless of whether you are able to take your baby home or not, there's often like logistical things that are going on like the practical daily life integrating your post-NICU stay and so you're as you said, there's just this time and the space and where your head's able to really focus in on.

Mahaley Patel (11:55)
Yes.

Yes.

Mary Farrelly (12:16)
It's there and you know it's there, but it's just not time. there often, I feel like there often is that moment where people just kind of wake up and are like, okay, I'm ready to kind of take that next step into the next chapter.

Mahaley Patel (12:26)
Yeah, know that this is...

Yeah, I know that this is still sitting with me. I know that this is a unique layer of my experience. It permeates all of these other things when my maybe other kids at home get sick, my other living children, right? And now I'm sort of ready. I have the capacity to deal with it.

Mary Farrelly (12:48)
For families that, some of the people that are listening to this episode may still be in the NICU and navigating and knowing and almost feeling like they're accumulating trauma, right? You kind of know and you can feel it and it's maybe not showing up in the same way, but you know it's happening. From your perspective as a clinician, do you have any tools or suggestions for families that are in the thick of it of how to help kind of mitigate their long-term trauma or do little micro moments of working through?

Mahaley Patel (13:01)
Mm-hmm.

Mary Farrelly (13:18)
while they're in the thick of an intense scenario? Or is it typically helpful to have it and know that you're doing your best in the moment and then after the fact have those opportunities for processing?

Mahaley Patel (13:30)
Yeah, I think it definitely depends on a family's capacity. So, and maybe the intensity, right, of their stay. And I think that's one of the challenges, right, is it varies so much from NICU family to NICU family. So some are really facing.

⁓ a lot of financial hardship in the process, right? So they just may be so focused on how am gonna pay my bills? I live three hours away from the NICU. I've gotta figure out gas, hotel, lodging, all of the things. I gotta figure out what to do with my job, my other kids at home. you know, so I know for me in my stay and how intense it was and acute it was if someone had...

Mary Farrelly (13:50)
Mm-hmm.

Mahaley Patel (14:14)
suggested some type of tool or recommended some type of tool, I wouldn't have been able to use it because what was in front of me was so, so, so acute. I think for other families where there may be a little bit of room, I sort of think about it as moments to... ⁓

Mary Farrelly (14:21)
Mm-hmm.

Mm-hmm.

Mahaley Patel (14:36)
If have a light above you and there's the little pull to pull it down, like you reach up and that's your nervous system and you reach up to pull it down and you're just turning it on for a moment, right? Of like, could be, first of all, there's no sunlight in hospitals. So stepping outside and getting some sunlight, do not underestimate the power of that. Don't underestimate the power of...

Drinking water that day because you probably forgot to the last three days don't underestimate ⁓ Squeezing in like I know at one point we had like a little family room and I went and took like a 15 minute nap You know because I pretty much wasn't sleeping right, but I was also recovering from an emergency C-section ⁓

Mary Farrelly (15:16)
you

Mahaley Patel (15:24)
moment of listening to music, I had a playlist on that we played a lot for my daughter while she was in the NICU. I find music very calming for me and like very calming to my nervous system. My husband refers to them as in the book as little wins. And I think little wins are the key. Just these little tiny micro moments that might be able to give your nervous system a moment of reprieve. Right. But I think every family's capacity for that is different.

Mary Farrelly (15:38)
Mm-hmm.

Mahaley Patel (15:55)
Walking. That's a huge win. Moving. Sunlight.

Mary Farrelly (15:58)
sometimes.

the NICU can feel like you're in a time zone or like a total time warp. Like there's no day, there's no night. You don't know what day of the week it is. The sounds and the smells and the sensations are just never ending. It's a perpetual sensory bombardment. And so I totally, for the families that I see working throughout my career, working with families is those that do build in those micro moments, those micro pauses are able to then step back

Mahaley Patel (16:04)
It can.

It's never ending. Yes.

Mary Farrelly (16:31)
in and have like a completely different like reset button so they're able to show up and advocate and listen and be present in a way that if you just white-knuckle it the whole time it can it'll it can catch up and as you alluded to and we've talked about this before in other kind of moments is that NICU families are postpartum too like you're dealing with your own physical emotional hormonal psychosocial financial on top of then stepping into this intense parenting role

Mahaley Patel (16:35)
Yes.

Mm-hmm.

Mary Farrelly (17:01)
for a child who is medically fragile and struggling and needing this additional support. So, you're never your best self if you're physically in pain also. So, building in moments to be able to heal your own body and

have moments of peace and connection is really where families have that ability to continue on in their journey and not, because eventually the body can catch up and families are often readmitted to the hospital themselves because the physical healing was just not able to be done in the NICU setting. And there's a lot that NICUs physically can do in their environments to help support families that there's room for improvement there too as well. But ⁓ it's definitely in the moment just taking those, I love that little win.

Mahaley Patel (17:27)
Yes.

Yes.

Yes.

Mary Farrelly (17:44)
little moments together too.

Mahaley Patel (17:44)
Little wins. And I love

that you use the word micro. I think sometimes when we think about caring for ourself, we think so big. And when we think so big, it isn't achievable for everyone, depending on what their circumstances are. Again, depending on what the duration of their stay, why their baby's in the NICU, what the financial circumstances are. It just isn't always within reach. And so if you just really...

Mary Farrelly (17:53)
Mm-hmm.

Mahaley Patel (18:10)
I love the word micro like little wins, right? Just the tiny little things. They're not going to offset the trauma. They're not going to take it away. That's going to be there. But it can help you move through the experience. In a better way.

Mary Farrelly (18:18)
No.

feeling better in the moment of all of it.

My next question I wanted to ask was about you touched on your partner's experience as a parent navigating the NICU 2 because in the NICU setting especially there's so much emphasis put on the person who gave birth for a reason. know there's oftentimes lactation and there's oftentimes connection and different things that are physiologically connected with the baby and the person who gave birth but that can also leave the partner feeling incredibly powerless.

Mahaley Patel (18:41)
Mm-hmm.

Mary Farrelly (19:04)
and I always literally see dads and partners in the corner. Like it's literally putting them in the corner. There's sometimes not even a physical space for them to be in the NICU setting. So how do you encourage or think through using either your NICU story or other types of ⁓ support for the non-birthing person in the NICU experience? Where do they fit into this work?

Mahaley Patel (19:30)
they don't fit in and a lot of resources and tools and they should. That was something from the very beginning, you know, when I was thinking about what's unique about this resource, what's unique about this tool. I really wanted it to be inclusive of the partner experience and

Emily did too and was so on board with that. And that was something that we set out with intention to do from the very beginning. So our hope is that a lot of the questions are designed for not just the mother or the birthing person, but also the partner and their experience, because I think it is so often almost always actually overlooked.

Mary Farrelly (20:16)
Mm-hmm.

Mahaley Patel (20:23)
And the reason for that is that, you know, after Saachi died in, you know, one of the many conversations my husband and I had, couples therapy sessions, et cetera, he would talk about how, of course, he has grief and trauma from losing his daughter.

but that the majority of his trauma, so to speak, he actually feels like really sort of lives in the NICU. Those first 24 hours, because of the nature of my emergency C-section, I was put on a cocktail of drugs I didn't come to for a while. I didn't even understand the extent of what we were facing until probably about a day in. A day's a long time in the NICU.

Mary Farrelly (21:17)
Mm-hmm.

Mahaley Patel (21:17)
⁓

A day can, I know for us, probably a month. And he was really alone, I think, in all of that. I was physically there, but I wasn't mentally there. And I think that dads and partners just really deserve a space to process their experience and also have their story and their parts of the story heard.

And it was really him saying that that made me realize, yeah, I think, of course, that NICU is such a unique layer for me in the story. But it is actually. That piece of it is more traumatic for him than it is for me, and I can say that with certainty, and I know he would agree.

Mary Farrelly (22:07)
Mm-hmm.

Mahaley Patel (22:12)
And I think that's a really unique thing in traumatic experiences and also child loss is where like the majority of the trauma and the grief lives for each parent. And it is really different. think that's why we say people grieve so differently, right? And it really shows that. So my hope is that, and our intention with this book is that a dad, a partner can pick it up and flip through it and be like, yeah, that...

Mary Farrelly (22:29)
Mm-hmm.

Mahaley Patel (22:42)
That question, yeah, that makes sense. That applies to me. Right? That sits with me. ⁓

Mary Farrelly (22:46)
Yeah.

Do you encourage partners to go through the story separately and then kind of come back and share and connect? Or I guess it depends on each couple and how they kind of, what their dynamic is and how they communicate. ⁓ But just curious if you had any input on whether you usually see families going and kind of debriefing separately and then maybe coming together and sharing or what that kind of looks like? Because I know it's different, but just curious.

Mahaley Patel (23:03)
Sure.

Yeah, I love that question. I don't think

we've been asked that question yet. I think in my perfect world it would be yes going off Answering your you the question the prompt separately Allowing the parts of your specific story, right? your specific experience to unfold and to be told in that and then coming back and sharing and I think you you'll learn so much about Your partner and what their experience was like of I didn't

I didn't think about that or that sound, right? That really you find kind of triggers your nervous system. That's so interesting. I have a different trigger, right? But I never thought about that. And I think that ⁓ my husband and I have done, you know, work in various ways, whether it's with Mineral Carol or other brief parents or other projects that we're working on. ⁓

Mary Farrelly (23:53)
This is it.

Mahaley Patel (24:09)
Related child loss and every time that he and I talk about it. I learned something About him. I learned something new and also because you have to remember too How your NICU experience how your

child loss experience if that was your outcome, how it sits with you and affects you is different a year in and five years in. So you're always, it's always changing, it's always evolving, and there's always something to learn about your partner and about yourself.

Mary Farrelly (24:38)
Mm-hmm.

Right, you even just retelling a story out loud to different people. Sometimes when I'm telling my own stories, I find that I'm uncovering little like over turning over no rocks that I was like, that's interesting. I had packed that one away or I think about that in a different angle. So I think having that those parallels and opportunities to just hear your partner's version of a story too is you can almost remember or realize different parts or things that you missed because

Mahaley Patel (25:01)
Yeah. Mm-hmm.

Mary Farrelly (25:18)
As you said, sometimes you might not be in a mental state to be listening to different words or hearing different sounds or, you know, even those better moments in a NICU, sometimes a partner is able to see them and another is not too. So having those moments to just share and debrief. But in the thick of it, it often is the non-birthing person who goes into logistics mode, like goes into full blown, how are we going to do this?

Mahaley Patel (25:43)
Yes.

Mary Farrelly (25:47)
like what does it mean, how are we gonna eat, how are we gonna sleep, how are we gonna pay for this, how are we gonna feed the dog, how are we gonna do all those things, ⁓ which is important too, but also doesn't give a lot of space for the emotional connection and the really like living it in the day to day and like being present in the moment too. ⁓ I often see partners just kind of like being on the periphery sometimes voluntarily because they don't want to be in the thick of it or they don't want to take it away from the mother or the birthing person.

and too they want to protect those moments as much as possible too. it is interesting to see how different people kind of connect and process through their NICU stay, especially sometimes with the longer stays too. You can almost see sometimes the dynamic flip too as the stay gets longer, the parents will take over different roles and kind of reposition themselves ⁓ throughout their stay depending on the logistics of life and everything else that's going on around them too.

another

group of people that will be listening to this podcast are people who are in the NICU as providers, especially NICU nurses. And I would love to kind of touch through the loss experience in the NICU and different, one of the things that happens as a NICU nurse and NICU provider is we are deeply untrained on the ability to help families cope and navigate in the words to use and the logistics through such an intense experience.

And from my own journey, I've been a NICU nurse for 13 years now. I have learned a lot of that through experience, through modeling from other people in my profession. But I know a lot of nurses are deeply avoidant of being in those rooms because they don't have their own skills, emotional words, language, or their own trauma around different experiences too, because a lot of secondary trauma happens with NICU providers being in these really sacred, intense moments with families too.

Mahaley Patel (27:32)
Mm-hmm.

yeah.

Mary Farrelly (27:48)
I'm wondering if you had any insight or thoughts on just maybe what is important to focus on as a healthcare provider supporting a family through this type of experience, whether things that were done really well or what you think was missing or just some, I guess, insight into how a healthcare provider can really show up for a family in a meaningful and supportive way.

Mahaley Patel (28:16)
Mm-hmm. It's such a good question. And I often think sometimes the answer that I have, I wonder, like, that it feels like a tall order because their job is medical care, right? Their job is to help keep a child alive, right? Or do the medical interventions necessary?

Mary Farrelly (28:32)
Mm-hmm.

Mahaley Patel (28:42)
What's so interesting about our experience, and of course I've heard a range of experiences at this point from other bereaved parents, from other NICU families, from clients. I've heard a range of experiences of things that were said that were rude and unkind, inappropriate. We didn't have that experience. And I often think, why do I feel such a tie and a pull to

Vanderbilt Children's. And I think part of the answer is because my daughter lived and died there, right? That was her only home. She never got to come home. But I think it's also more than that. I think that the providers that we had and specifically a few really come to mind.

Mary Farrelly (29:19)
Mm-hmm.

Mahaley Patel (29:35)
really brought out the humanity in the care and how they treated us. Again, going back to these little micro moments, these little moments where, you know, a doctor, and this is one of the challenging things about the NICU that I didn't know or did never really thought about was just the rotation of providers and seeing a new face every day, a new face when you wake up and you know, it's... ⁓

Mary Farrelly (29:38)
Mm-hmm.

Mm-hmm.

Mahaley Patel (30:04)
It's jarring and you get a little bit attached, I think, or I did to some of the familiar faces that you see that are caring for your child. And the ones that just took one extra step to...

Mary Farrelly (30:05)
Mm-hmm.

Mahaley Patel (30:24)
Bring us a coffee. Bring us a glass of water. Get me a blanket. Get me a pillow. You know, if there were maybe exceptions that were made. The ones that, you know, my oldest daughter was six at the time. And so she met Saachi and saw her a few hours before she died. And the...

staff that went the extra mile to bring in books that she could read to Saachi, to bring in arts and crafts projects that she could do with her, ⁓ like ink on her feet and things like that. ⁓ Those meant everything to us. two little kind of things, three things actually that really stand out.

the little name cards that they make outside of their NICU room. And I don't remember specifically at what day her name was put on there, but I remember thinking, well, she's dying. So what is the point? What's the point? And that name card is so treasured for me now, right? I'm so glad that I have it.

a nurse that I have been lucky enough to stay in touch with who was there when Saachi died. And, you know, she, was sitting in the rocking chair and holding Saachi and she just said to me, she looked me in the eyes. Obviously, you know, everyone, all the staff has masks on and she took her mask down and she said, you know, I just want you to know it was such an honor to care for your daughter. Thank you so much for the honor. And to this day, I'm so used to telling the story on autopilot.

And every time I think about the care providers that just kind of went that extra mile, it's the thing still that makes me emotional and still kind of makes me tear up. And then one of her doctors who, you know, reached out to me ⁓ after her death and just kind of told me the impact that Saachi dying had had on her. And I think what

In our case, and this isn't the case for every family, the list of people that knew my daughter is pretty short, right? She was five days old when she died. And so to hear from people that got to meet her, that got to touch her, that got to hold her, that got to bathe her, it is deeply impactful, deeply impactful. ⁓

And it doesn't take much. That's the thing. It doesn't take much more than words. It doesn't take more than a hug. It doesn't take more than an offering of, I got you a bottle of water. It just doesn't take much. But at the same time, I'm always wrestling with like, their job is to save and to care, right? And sometimes, know.

asking them to go the extra mile is just...

I wrestle with that. Like, is that a fair thing to ask? But I know that for me, and I think it's, I think that for a lot of brave families that I've spoken to, it's the same. Those little moments are what you're left with at the end, right? That name sign on her door, the nurse telling me that it was an honor to care for her, taking her mask down so that I could see her face, right? So I could like lock in and remember it.

Mary Farrelly (34:02)
Mm-hmm.

Mahaley Patel (34:17)
It's everything.

Mary Farrelly (34:20)
I will listening to you speak, I'm getting emotional too. Because as a care provider, I just, the babies that I've been with, as I've lost them, they do stay with you. And it is an honor to care for them. So, I, it's, those moments are hard to do.

Mahaley Patel (34:33)
Yeah.

Yeah.

Mary Farrelly (34:41)
as a care provider because you have to let families take a piece of your heart. And there's a lot of families that do need and deserve pieces of your heart. ⁓ But it is so important. It's why we get into healthcare in general. We do get into healthcare to save lives and have the happy endings, but we also get in because we truly care about people.

Mahaley Patel (34:47)
Yeah.

Yeah.

Yeah, you truly care.

And I think like what you said, like about, you know, how a baby that you lose really touches you. Just even letting the family know that it doesn't have to be a grand gesture. But I think when you lose a child, specifically when you lose a baby, right, that just didn't have this like expansive life, I don't have.

friends of hers to come up and share memories with me. I don't have any of that. All I have is her life in the NICU. That's all I have. So if someone comes up and says, which they have, like her nurse on her one year birthday wrote me this like beautiful letter of like how she's like touched her and like, and like actually really made her want to sort of.

Mary Farrelly (35:35)
Great.

Mahaley Patel (36:03)
better focus her work on working with bereaved families and in the bereavement program at Vanderbilt. That is everything, right? Because I don't have, I have nothing else. don't have, if someone loses a child when they're 35 and I'm by no means saying that that's better.

It's different. I don't have, I often sometimes romanticize being able to have friends of hers share memories and stories. I don't have that. All I have are her care providers and myself, my husband, my daughter, and her grandparents, and two friends that got to lay eyes on her. You know, I have nothing else.

Mary Farrelly (36:54)
I think I...

I have held space for families throughout their, especially during COVID when there truly was no support for families too. And recognizing that, yeah, as the care provider, I was the friends and I was there for those little moments. it's just bearing witness as someone else who could witness the life that was there and how incredibly exquisite and beautiful it was. have a journal that in the back of it, I write the name of every child that I've been with has lost. So they do touch

Mahaley Patel (37:03)
Yep.

Mary Farrelly (37:28)
your lives for a long time. Yeah. They're there. Yeah.

Mahaley Patel (37:28)
I love that so much. that's so like that's Yeah, and see like even just telling a family that right of like your

child's name sits here in like is so meaningful

Mary Farrelly (37:43)
It's really, ⁓ it's an incredible gift and use. I think as you were sharing like the little moments, it really is like taking the time to step out of your clinician role and into your human role just for a split second. And those are the moments, those are the connection points, those touch points that.

Mahaley Patel (37:57)
Yeah.

Mary Farrelly (38:04)
echo so much longer than the amazing care that you get, the IV that you put in without any issues. That's meaningful too, but it's those points of humanity that are really truly the why behind everything that we do as providers. But it can be, ⁓ speaking to the healthcare team, is recognizing that we're not offered time to journal about our...

Mahaley Patel (38:12)
sure.

Yes.

Mary Farrelly (38:34)
We

need a My NICU story for nurses to unpack all the things that we have. When I've spoken, because I work so much now with families too, and I can hear both sides of so many stories, even those moments where someone said words that were not the right words in the moment or were insensitive, it tends to come from this compartmentalization that healthcare providers almost force themselves.

Mahaley Patel (38:36)
You do. You do.

Sure.

Mary Farrelly (39:04)
into in order to protect and continue doing the work, but it has so much like lingering impact and ripple effects. So there's so much potential work to be done to help healthcare providers work through their own experiences because we're just expected to just move on and it's...

Mahaley Patel (39:05)
Yeah.

Mary Farrelly (39:28)
necessary but also impossible to do. And even as you mentioned with NICU families and bereaved parents, like it'll find you. It finds you even in those small moments when you're not, unless you just saw me do it, ⁓ when you don't really realize that it's there still. It comes back through. So I think that just having conversations too are, that's also where the power is in exploring.

Mahaley Patel (39:47)
Yeah.

Mary Farrelly (39:57)
are deep feelings around different topics and sensations and sounds and smells that everybody's experiencing too.

one of the other groups of people that is connecting and listening to these stories and sharing on this podcast are people who are supporting NICU families, whether they're doulas or other friends, families, people who just wanna show up for someone who they love or who they're deeply connected with but are not a medical provider and are not an immediate family member.

What insight or thoughts do you have on how they can best support a family through both a NICU stay but also through a NICU loss journey as well?

Mahaley Patel (40:44)
Well, I don't like the phrase, let me know if you need anything. I can tell you that much, right off the bat. I think when you are in the NICU, there are so many things outside of the NICU because as it does, life goes on and responsibilities don't go away. So putting food on the table, putting gas in the car.

Mary Farrelly (40:48)
Yes, my gosh. I still don't like that phrase. Take it away.

Mm-hmm.

Mahaley Patel (41:12)
getting groceries, getting the house cleaned, walking the dog, those responsibilities still stay, especially for families that may not have the ⁓ luxury of taking time off work, taking a lot of time off work, or for families that have, like we did, living children at home. So I think attention going to those things, right? Because no one...

in the NICU can, providers aren't doing that, right? That's sort of the job of the sort of support team outside of the NICU. That's the best way is to, and don't ask, just say, I'm picking your kid up after school today. I've already let the school know and we're gonna go see a movie. We're gonna go get a meal.

Mary Farrelly (41:51)
do.

Mahaley Patel (42:04)
I've organized a playdate. We had friends that did that for us, so we could just sleep or just sit, stare at the wall. ⁓ We didn't have to entertain or feel like we had to be on for our six-year-olds. I've got the dog. I've set up a list of people who are gonna walk the dog. I've raised money. Here's...

gift cards for groceries, gift cards for the hotel, gift cards for gas, gift cards for food at the hospital. I'm dropping off food. In the NICU, that is just the best way, you know?

I think for families that also want to share and keep other people afloat, sometimes having a point person can be really helpful because there's so much information that is going around and it's like, don't have to tell 35 people this update. And assigning a person to do that of here are the list of people to keep updated. The last thing you need is 600 text messages that you have to sort of...

manage and navigate. So that's also another way that people can help is to streamline communication. ⁓ I think after the NICU, even for families that go home with their children, recognizing that it isn't over, recognizing that just because they got to bring their baby home, which is obviously wonderful in so many ways that they're still now navigating postpartum life, life outside the NICU, a lot of medical anxiety.

Mary Farrelly (43:18)
Yeah.

Mahaley Patel (43:41)
It's so hard. So I think a lot of those other things still apply to I'm dropping off food today. It's it'll be at your door at four o'clock. You don't need to you don't need to answer the door. Right. It's just there. Here's a gift card. Here's a mail train, whatever it is. ⁓ Asking how they're doing in that moment in that day, not how are you doing? How are you doing in this moment? How are you doing? How was this morning?

Mary Farrelly (43:49)
video.

Mahaley Patel (44:09)
how was taking her to the doctor this morning? How was going back to the hospital? That was something that was also unique to us was my daughter's oldest daughter's school. We have to like pass the hospital to get there. And I had to face that very early on driving by, right? So how was drop off this morning? How was going back to the hospital this morning? I think for

Mary Farrelly (44:21)
Mm.

Mahaley Patel (44:37)
Families that lose their children again I think a lot of those things same things apply doing everything you can to take all the responsibilities the daily life responsibilities off of their plate so that they don't have to think about it ⁓ That is something that is really really helpful like meals. I don't have to worry about cooking for my six-year-old I sure as hell wasn't ⁓ But she was so someone needed to put that food on the table, you know

And we are very lucky in that way to have a really solid community in that way.

And I think also too, like just letting them be where they are at. Like if you have someone in your life that has lost a child, it is going to be dark for a very long time. It just is. And the friends of mine that just let that be, they didn't try to offer me a silver lining, some BS.

something or another that I didn't subscribe to that just let it be really dark are the people that still sit the closest with me in my life, right? The people that are not afraid to say her name. The people that, you know, I have four kids, three of them are here, one of them is not, right? So...

One of the things I hate is when people announce the number of kids I have. It's just like, it's not three. I know you see three, but it's not three. And the people that sort of take the extra effort to say that, or to correct themselves when they misstep, that's another huge thing. I have friends that are like, I said this thing and I don't actually think that was right and I'm really sorry. And sometimes they're right that it did hurt. Sometimes I'm like, I didn't even think about that, but I love you for acknowledging it.

Mary Farrelly (46:18)
Mm-hmm.

Mahaley Patel (46:42)
I also don't pretend that any of this is easy. I think dealing with me the first year and a half or so, maybe two years after Saachi died was probably really hard for a lot of people. And I'm sure there were moments that they had to take a step back, right? And just kind of like, whew, that was a lot. But the ones that kept coming back and kept showing up I think are really significant.

Mary Farrelly (47:05)
Mm-hmm.

those are the people that.

that those people that stick alongside you and don't expect you also to help them work through their own emotions around your experience. I see that happen often in the NICU as a family will come in and they have visitors and the visitors are so distraught or so overwhelmed and then they're expecting their loved ones who are going through it to be there or they're taking, you know, as a nurse I'm like, no, I'm helping you but I'm like you, yes, I'm acknowledging that this is hard for you.

Mahaley Patel (47:25)
Yeah.

god.

Mary Farrelly (47:43)
as someone who is supporting your loved one that you care about through this experience. But this is this is the space where we're helping and we need to find other ways for you outside of this space to work through your own grief and your own trauma around this. But it cannot be in the same room as the family because that's not their burden. It cannot be. They're going through so much already and I didn't have my own experiences with loss around pregnancy. ⁓

Mahaley Patel (47:48)
Yes.

Yes.

It cannot be. ⁓

Mary Farrelly (48:13)
many, many losses and having family people express their own grief about my grief is like, thank you, that's so great. I'm so sorry for your loss, question mark. And that, know again, it's people who just mean well, but don't have the wherewithal to realize the burden that you're placing on someone who's.

Mahaley Patel (48:25)
Mm-hmm. Mm-hmm.

Mary Farrelly (48:36)
Glass is very full of burdens already. So I think if you are listening and you're someone who is looking for ways to help, it's just being there. Even when it's ugly and weird and messy, it's just being there and not inserting yourself, not trying to save the day. is often one of the things we talk through is that like drama triangle. Sometimes people will get stuck in having to be the hero and save the day and fix everything. It's just those, it's the micro moments. is the theme of this episode has been these

little micro moments of connection, whether you are in the NICU and self care, whether you are a nurse and you're connecting with a family, whether you're a loved one who is trying to show up for someone who you care about who's going through something really intense, it's the little things. It's not the grand gestures, it's just showing up. So I hope that people who listening can...

Mahaley Patel (49:07)
you

It is.

Mary Farrelly (49:28)
can realize that they are, and sometimes people are like, I'm only showing up for somebody, like you're doing it. Like that's the the real real. That's where it matters and people are gonna look back on it and see you there and that's the point, is you looked alongside them.

Mahaley Patel (49:41)
That's the point. And also being there

for the entirety of the journey, it doesn't mean that, you know, Saachi would be three in February. So I'm closer to the three year mark that I'm not. Right. And it doesn't mean that the people in my life need to ask me every single day. Like, how are you doing? No, like they're not. There was a time where they were, but they're not anymore. But I think like you touch on something really interesting of like this kind of idea or need to save the day.

Mary Farrelly (49:46)
Mm-hmm.

Mm-hmm.

Mm-hmm. No. You can't do it.

Mahaley Patel (50:11)
You're not saving the day. News, news flash, right? Like the worst

thing has happened and no matter what you say, no matter what platitudes, silver lining you offer.

their child's still gone.

Mary Farrelly (50:32)
It doesn't erase reality.

Mahaley Patel (50:33)
So do

not try to save the day.

Mary Farrelly (50:40)
And I see, you know, I always assume positive intent, especially in the space of people where I'm trying to navigate lots of people that are not my loved ones in the NICU setting. ⁓ sometimes I have had to have separate talks and been with families who are like, listen, can you just tell XYZ person that the visiting hours end at nine? So I don't have the energy to navigate this. And I'm like, great, we can do that. Like it's your journey.

Mahaley Patel (50:45)
Mm-hmm.

Mary Farrelly (51:10)
knee through this and you're allowed to feel, think, say whatever you need to. Like this is safe. You don't have to make me feel better. I'm here to just witness and be with you through it.

So I think that that is a really lovely place to kind of tie it all together. But one last question. So if you are listening to this and you're a parent or a professional or a loved one or anybody who is carrying your own grief or trauma or just unanswered questions from their NICU stay or something supporting, what's one like gentle first step thing they can take towards healing their story, sharing their story, taking the next step on exploring their

story. What's one small next, I always say in my work with my kids and everything, what's your next best step? Like one small thing that you can do to kind of take that next best step.

Mahaley Patel (52:05)
I love that. It's always so hard to pick one.

I'm leaning towards just the step of connection. The step of, and I think that can look different for different people. It could be finding a therapist. It could be finding a support group. It could be connecting with another family reaching out who's been in the NICU. Another family who has a child with medical needs. Another family who has lost a child.

That connection, I think, can sometimes relieve a little bit of the isolation that I think so many of us feel, regardless of what our specific journey is to and through the NICU. And I think from that, it can lead towards other things, right? I know that my attempt at connection...

Mary Farrelly (52:55)
Mm-hmm.

Mahaley Patel (53:05)
which has changed my life, was in the NICU. I remembered that someone I went to college with had lost her son at six days old. I didn't really know the details. I just knew that she had lost her son at a really young age. And that connection was the foundation of so many other things that I have done to help myself heal. Reading, writing, connecting with others.

fine-tuning my work to help other bereaved parents, other NICU families navigate this journey. So I think maybe the step of connection, whatever that looks like, connecting with your partner, connecting with a friend, saying like, not, I don't think I'm doing that well. You know, I don't think I'm processing this maybe in the way that I hope that I would be.

I think connection. And I think that goes back to kind of those small little, those little wins, those little micro moments, right? It doesn't have to be something that is extensive, costly, time consuming. It doesn't have to be any of those things.

Mary Farrelly (54:09)
Mm-hmm.

It's just connecting with...

other humans because at the bottom line we're that that's how we're wired is to connect with others and to you're not designed to share grief loss or anything alone it's it's you're designed to lean upon and connect and build real genuine relationships and i think that will heal each other and the world really ⁓ so thank you so much for sharing your story and i know the people that are listening i think just hearing

Saachi's story knowing that her life and her light is touching so many others and her life just continues to echo and ripple on so many others. So thank you so much for coming on and sharing and where can people find and connect with you and also ⁓ really get to know Your NICU Story is officially out. So where can we get your Niki story to help me my journey.

Mahaley Patel (55:06)
Yes, it is out. You can get Yornick Usere wherever

books are sold. Amazon, Barnes & Noble, local bookstore. If they don't have it, they can order one for you. love, I always love supporting local bookstores. So it's available wherever books are sold. In terms of myself, I am on social media, just Instagram. I believe my handle is Mahaley H. Patel.

Mary Farrelly (55:33)
You

Mahaley Patel (55:34)
Because Mahaley Patel was not available and I'm like I would love to find the other Mahali Patel, but ⁓ I've not met one yet, but ⁓ Yes, Mahaley H Patel and I share I share a lot of writing on there that I do I write a lot to Saachi I write a lot to her I write a lot about her so I share a lot of that I share

I try to share little glimpses of like parenting after loss. I've gone on to have two babies that are six months apart, which is its own unique journey. Parenting them, parenting my oldest. Yeah, I share just kind of a little bit of a lot of random things on there, some work stuff.

Mary Farrelly (56:17)
the connection. I mean social media gets a bad rap, but I feel like it actually is a really powerful place to connect. And I've connected with so many incredible people through social media. So, like you.

Mahaley Patel (56:19)
It is the connection.

Well, I'll tell you, if social media didn't exist,

it was only because ⁓ my friend Kara and I were Facebook friends from college. And I remember her posting about her son. And I remember reading it in 2020 and being like, my God. And that was that. And had it not been for social media, had it not been for Facebook.

Mary Farrelly (56:47)
Mm-hmm. Yeah.

Mahaley Patel (56:58)
I don't think that I would have been given what I truly believe was the biggest lifeline in this whole process was just the gift of her and the gift of that connection.

Mary Farrelly (57:11)
that really can be truly so incredibly powerful. And I feel like the algorithm gets a bad rap, but sometimes it does show you exactly what you need to see in the moment. And you find those people that are out there in the world that either are doing similar work to you or have lived similar stories and are looking for those connection points too.

Mahaley Patel (57:22)
It does.

They are, yes.

Mary Farrelly (57:34)
Definitely, if you're listening to this and you're a NICU parent, you can get it yourself. But if you're a NICU provider or a doula, I highly recommend having Your NICU Story as a resource to either immediately share with families if you're looking for, know, a lot of people want to buy a gift or tangibly give something to a family. Such an incredible thing that a family's probably not gonna be able to connect or find themselves in that moment. So.

Mahaley Patel (57:50)
Mm-hmm. Yes.

Yeah.

Yes.

Mary Farrelly (58:00)
definitely have

it as a resource that's going right on top of my Suggested Resource List that I share with all of my students and families. So thank you so much, Mahaley, for being here today and sharing, and I can't wait to continue to see how your work will impact so many families throughout the years to come. So thank you for coming.

Mahaley Patel (58:19)
Thank you.