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#008 - 👩🏼 Betsy Pilon

Betsy Pilon

Betsy Pilon is the executive director of the nonprofit organization HOPE FOR HIE. Hope for HIE provides awareness, education and support to families and providers dealing with neonatal and pediatric hypoxic ischemic encephalopathy. Learn more at or on twitter @HopeforHIE

Check out the other half of this discussion on just say HIE (hope for HIE's podcast) where we delve into the challenges and opportunities that clinicians face during the care of patients stricken by HIE.

Learn more about hope for HIE by checking out their website:

Check out our appearance on Just Say HIE, the official podcast of Hope for HIE:


The transcript of today's episode can be found below 👇


nicu, families, parents, talk, neonatologist, work, hiv, child, max, kids, feel, physicians, parent, care, mri, discharged, experience, connect, clinicians, people


Daphna, Ben

Ben 00:38

Good morning, everybody. How's everybody doing?

Daphna 00:41

We're doing great. How are you?

Ben 00:43

Good, where today I have the pleasure of having with us, Betsy Pilon. And Betsy is the executive director for hope for HIE a nonprofit organization that is based out of Michigan and which provides support to parents and families dealing with HIV around the globe. Betsy, thank you for being with us.


Thank you for having me. I'm really excited to be here.

Ben 01:05

Yeah, we're very excited to have you with us. So Betsy, tell us for the for the folks who are listening to the podcasts. We're not familiar with hope for HIE. Tell us a little bit about what is hope for HIE E and what are its intended sort of purposes.


Sure. So hope for HIE like many other patient and family organizations started very small and as a grassroots nonprofit. So you know, we are focused on improving the quality of life for children and families impacted by HIV, hypoxic ischemic encephalopathy across all outcomes, and really around the world. So we currently have about 6500 families connecting in our network. And we, you know, work on many different initiatives. So, you know, obviously generating awareness to connect more families, we're a peer to peer support organization. But we also work with clinicians and researchers to move forward care for, for this cause.

Ben 02:07

And how many years has hoped for HIV been sort of doing all this great work.


So hope started by started sorry, hope started in 2010, by three moms that were connecting through the internet, and at that time, they met each other through Yahoo. So that date, the evolution of social media. And they started a Facebook group with the intention to Oh, is build this as a nonprofit organization. And so I came on the scene in about 2012, when my son Max was born, and a group of us got together in 2013, to move forward the nonprofit side and get that going, and officially confirmed in 2014,

Daphna 02:53

I was hoping you could tell us, you know, some of the things that you guys are doing. So obviously, you have an array of Parent Resources through your website, and peer to peer support. But I'm especially impressed by the outreach you guys are doing, even after hospital discharge. So maybe you can speak to some of those things.


Definitely, yeah, the real work really kind of begins after discharge for us. So, you know, we, we really wanted to, I think it just comes back to a lot of us felt very alone in the NICU. You know, Nicu traditionally has been synonymous out in the general public with prematurity. And HIV is just such a unique experience in the NICU, and sometimes feels very isolating. And so wanting to foster connection and community, we, you know, have have developed resources for in NICU or, you know, sometimes if it's an acquired injury pick you. And so we have newly diagnosed family boxes that we provide, and we also have a lot of different educational materials that we've developed tools to help, you know, facilitate a little bit more of the, you know, provider, patient, family communication, guiding families through this experience, because it is so unique, and sometimes it is difficult to talk through, you know, with any with any situation because it is just so unique. And a lot of times, you know, the the course of care is just so unexpected for these kids. And then yeah, after, after family's discharge, like I said, that's kind of where the real work begins. Because with HIV, it's this giant wait and see. And certainly a lot of kids we know, when they get discharged might come home, you know, they have a G Tube or you know, perhaps a trach. And we know that there may be a little bit more on the impacted side of things, but for a lot of people too, you know, you really don't know how things are gonna go. And so we're there we have a comprehensive support network. We host over 100 Read topic, outcomes and location based support groups. And we really encourage, we really encourage people to get together in person. Of course, with COVID, that has changed, you know, and then had put a lot of things on pause, which has been unfortunate, because a lot of the bread and butter of we, what we try to do, and get our volunteers to help us facilitate are those in person meetups. So we host, you know, retreats for families, for moms, if the dads get their stuff together, we will facilitate retreats for them as well. And, you know, and we do a bunch of different, you know, interesting, I think, events throughout the year to help connect the community. Again, you know, our community started kind of, from an inside out perspective, a lot of nonprofits, you know, start local, and then build out, you know, into different areas of the world. And we actually started because of social media, in this global environment. And so we had to plant the grim ground somewhere. So a lot of virtual things actually lend themselves very well to our community, because that's how we connect it and the day to day, and the benefits of that is it's 24/7 support. So there's always going to be someone awake, depending on you know, what timezone. And when someone's asking a question, or just looking for support, and just in the middle of the night seeing this is really hard, and I'm scared. And I think that's one of the most powerful things about our community is how we rally around each other.

Daphna 06:30

Yeah, I think that's great. I think, like, you touched on that the isolation and feeling like, gosh, I don't know, anybody who's been through this can be very difficult. And I don't find that parents trust us as providers to to be that sounding board, necessarily, especially I think, for what you, you talked about the kind of watching and weeding, and are still our inability to really give parents exactly the the exact pathway that their babies or children will take after after an injury. I'm wondering, you know, how you feel or, you know, you've spoken to so many families about things like this is, how can clinicians maybe ease some of that, you know, what that weighs on parents, especially when we say, you know, the outcomes are broad, there a spectrum of possibilities. And I think for some parents, that's, that's sometimes the hardest, hardest thing is is not the not knowing.


Yeah, and it's, it's such a nuanced conversation that has to happen. And it's difficult. I mean, this is, you know, it's not, when we talk about this with our parents in particular, you know, they're looking for these absolutes, because you're used to that, and so many different facets of medicine. So if it's a heart defect, you have a more clear course of how to fix that heart defect, or see how that's going to go. If you break a bone, you can, you know, set it and repair it, and it fuses back and you expect how it's going to go with something neurological, like HIV, and especially with babies, you know, their brains are fresh and new and underdeveloped. They're not adult brains. So there's just so much that we don't know. And I think, you know, when we talk about that, and the things that, that parents, you know, and there's a gap between what I think a lot of times, physicians say and what parents hear and process to, certainly I think there are some that might give absolutes to families, but overall, from all the conversations that I've had, I think that there's this gap that we can bridge. And I think a lot of it comes down to processing and understanding how people processed or especially during a traumatic situation, and you know, that's what an acute care situation, especially with a baby is, it's trauma, it's traumatic for parents, you know, and I say this, everything's good until it's not right. And then an HIV happens, whether it's in your pregnancy or during birth, or right afterwards or whatever. And it's, you know, these kids are very sick, and it's very scary, and you just don't know how it's going to go. And so what are your guideposts for that you know, and, and I think, you know, when you talk about prognosis, it is, you know, my my our neurologists use the phrase fraught with difficulty to give prognosis, and no, I remember those words specifically. And I mean, nothing could be more correct because, you know, a lot of these kids you'll see and they're, you know, have this very, very, you know, serious, you know, course of clinical care and the MRI looks bad And then you know, a lot of them, you know, rebound and might rebound even more after discharge. And so I think the, you know, talking through prognosis, you know, giving people kind of these these guideposts of, you know, this is what may happen on either and, and kind of, you know, a range, and we won't know, for a while, but we're going to, you know, make sure that with these follow ups, you're gonna get these check ins, and what can you do, when you go home, you can love your baby, you can, you know, stimulate them, you can make sure they have great experiences get fresh air, and, you know, and feel that, and that is something that I know, I have heard time and time, again, with child development and baby brain development is that environment is so critical. And it doesn't have to be therapy 24/7, which I think a lot of families get into, they want to fix something they want to hold on to something, when really, you know, a lot of it is nurture, you know, nurture your baby, and no matter what their, you know, their potential is. And so I, you know, I really encourage physicians, when you're having these difficult conversations, you know, to look at that, and really understand that it might not and I know, like time is always sensitive, most precious commodity, but you might have to come back to that family, you know, two or three times to kind of talk through that in in those guideposts, you know, manner. So that way, you know, they have that time to really think that through a little bit and hear your actual words versus what their interpretation may be of saying, Your child will never walk, you know, whatever. And I'm certain that the majority of physicians are not saying those words, and they're saying, you know, it might be we don't know, if they will, this calls into question, you know, those things, you know,

Ben 11:58

what did it say? I want to go ahead. Oh, I wanted to ask you about your, your HIV story. I know you have a sort of, we've discussed in the past your relationship with the healthcare system. And so I'm curious if you could share with us a little bit some of your of your HIV story and how it unfolded.


Absolutely. So I have a background in marketing and communication with with health care and worked for in my past two very large health systems when that's a regional system here in the metro Detroit area, I Henry Ford Health System. And I also worked for Trinity health, which is, you know, more of a national health organization. And so, you know, at the time that I got pregnant with Max, I was working for Henry Ford. And I had done some work with them, you know, with a lot of referring physician materials and patient education materials. And so, you know, my, my pregnancy was very good, I got great prenatal care. And I had worked with the neonatologist down at the main main NICU, and what their transfer protocol had looked look like. And that was probably a year and a half before I had Max, my first child. And so I knew kind of what that was, but I didn't know that I would need it. And so, Max, stop moving when I was 37 weeks pregnant. I had been in the clinic just a few days before everything checked out. And so it was, it was a big surprise, my husband, I thought we were going to just go be the family that gets discharged from labor and delivery, you know, we packed our bag and hand it over. And then he had a non, you know, reactive heart tones and, and was not doing the pre breathing that that he they wanted him to be. So they said we need to get him out quickly. He's in distress. So he was delivered via emergency C section. And, you know, I was able, luckily to not have to be put fully under so I actually was present for his birth, which unfortunately, a lot of our families are not able to be so I felt very fortunate that we could. And when he came out, he gave out a little cry and the neonatologist was right in the room and wisdom cleaned him, intubated him right away, because they knew that he was probably not going to be breathing or having a really hard time. And so, you know, that was, you know, one o'clock in the morning is when he was born in a fog. And, you know, the neonatologist came back to us after they, you know, took them to get evaluated and said, Hey, I think he is a candidate for this cooling treatment. And that's going to require a transfer downtown. But they had actually done the work to see that I could they had a bed that I could be transferred downtown as well with him. So that was really great. So you know, 330 in the morning, my husband followed the ambulance, Max's ambulance and then my parents were able to come over and follow mine down. So kind of a wild Introduction to parenthood and, and Maxine, and when he got transferred downtown, and he got, you know, moved from into the NICU was really struggling, they were really afraid they were not going to be able to save him, who they ended up putting him on the escalator. And you know, we're really working hard, very touch and go like many of our kids for a while there, but got him into cooling, and then things started to settle. And then I think by the last day of cooling, he was able to be excavated. So that was really good news. And then, you know, rewarmed, and went through that, you know, MRI day, which is a sentinel event, I think, for the majority of our community, because I think it's really where there may or may not be a confirmation that something you know, happened and that you, you know, kind of get, it's kind of that first definite moment cooling is like, Okay, well, we're gonna do this treatment and see how it goes. And then that MRI is just kind of like, and everyone has an impression of what MRI means in the, you know, to a patient, as well. So yeah, so Max's MRI came back in more of a moderate to severe injury pattern on this frontal parietal and occipital lobes. And so we were then, you know, given the talk of what this could mean. And we were brought into the room that I was staying in. And I remember, I remember every moment, even nine years later, what our neonatologist was wearing, what his mannerisms were, like his words, you know, and he was in the thick of it with us very emotional, that, you know, that this was going on. And, you know, what I think was really wonderful, too, is, is the continuity of care that we experience. So just the model that they have the same unit, Anita ologists, round through the Community Hospital on the system, so he was actually with us in the delivery room, and then that whole first week, which never happens, because

Ben 17:03

the schedule is very rare occurrence.


But we were very fortunate that that was so you know, it was someone that had that history from from Goa, which was really wonderful. And then, you know, he explained it to us that, you know, this, this, you know, he he gave us very encouraging words, though, saying, you know, cooling has been shown to decrease death and disability. And we see typically, that kids that have this level of MRI, their outcome might be one step lower, you know, as you go forward, that Max was at risk for developing cerebral palsy and intellectual disabilities, and you know, all of that. And then we met with a neurologist who, you know, show us, you know, we whisked over into the NICU because he was rounding and he showed us the actual, you know, MRI images, which we had no idea what's good, tell you what looks damaged, and one doesn't have that to a layperson for sure. But, you know, he was very kind as well, and, and just, you know, said this is, this is what we see, this is what we think, and really, Max is going to be the guide in this, you know, and see what the next you know, few days weeks look like to get a better idea, because he had just been through all of this trauma with through cooling, which is not typical for, you know, people to get cooled down to 91 degrees and, and see kind of where he goes from there. They hadn't introduced feeding at that time, either. So, yeah, so we mean, went through our course, stayed on oxygen for a couple of weeks. He, you know, was slower to feed, but did feed. And then after about three weeks, we got discharged from the NICU. And really, for me, as a parent, you know, my experience, again, that we had exceptional clinical care, I felt very confident, you know, working for the health system, I knew, you know, my colleagues were showing, like to help us and, and everyone was just very, very wonderful with their outpouring of support. But my big question was, are there other families that have gone through this because I need to know what life can look like for us after we get through this acute situation. And I need to see the spectrum of outcomes because they said mix could have a spectrum of outcomes, and we don't know what it's going to look like. And for me, the big three, the big three questions that I had one, will I be able to have more children? Because we didn't know what caused us for Max and we had always dreamed of having more than one child? Will I be able to stay married to my husband? Because we know that families who are parents, kids with disabilities, a lot of times have a higher incidence rate of separation and divorce. And then the third question was, can I maintain a career or am I gonna have to quit my job? We're gonna have to sell our house what's, what's gonna go on? You know, we have a two story colonial, you know, will that be appropriate for our child? Nancy grows. And so, you know, at that time, the landscape on the internet was a little bit scary. You had either I'm overwhelming medical journals that the layperson cannot interpret very well. And understand. And then you have, you know, some attorneys that are out that spend a lot of money to make everyone think that HIV that 100% is preventable, which we know is not. Case in point over here. And so you know that that was, I think, why they said not to Google and, and again, as having a marketing communication background, I thought, well, that's got to change, like, there needs to be a good repository for families to in a soft landing place for them to land. And I found three blogs from three different moms that were across the outcomes that I was, you know, wondering what those would be like. So one that was more mildly impacted, and Australia, moderately impacted. She was also in Australia, and then more severely impacted, and she was in the US. And all three actually were going on to have more children at that time. And all three were in careers and are still today and married and all of that. So they all pointed me to this hope for HIE Facebook group at the time, and they were about 200 families connecting and that's when I found my people. And, you know, I think a lot of what is difficult for families, as you don't even know what questions to ask. So you're discharged, you're set up with all these follow up appointments to pediatrician and neurology and you know, perhaps GI or whatever other specialties and enrolled in early intervention therapies and all of this and it's just, it's a whole, you expect her postpartum period to be like resting your body and you know, like finding life with you know, how to manage no sleep, and then you're kind of bombarded with your whole entire life might be up ended, you know, with and changed.

Ben 21:45

Can I ask you, I wanted to backtrack a little bit in terms of your your story and your relationship with the Henry Ford medical system. I think it's interesting that it's Henry Ford, because in your in your book, less than hope for HIE you have run out Oddish is in shock. I think she went through a very traumatic experience, I think in the same healthcare system, not that it has anything to do with the healthcare system. But I was fascinated by her book, because I think she goes through a very traumatic medical experience, knowing beforehand, all the steps that are going to happen, and she is getting herself ahead of the game correctly. So by knowing exactly what's going on with her, and that creates this sort of anxiety as you're reading the book about her knowing what's happening before the healthcare system sort of is able to catch up. I don't think that this is what you're describing. But I'm wondering, in your case, if your relationship with the healthcare system has give you control over a situation that most parents have no control over, or on the or maybe on the opposite side of anxiety, knowing getting yourself too far ahead of the game before before things actually unfolded.


Yeah, it's interesting to Dr. Oddish, was just fine finishing up her residency when I worked at Henry Ford. And pulmonary was actually one of my product lines that I worked on. So I saw her at the beginning of her career, and I've read her book, she's amazing. And I think all all providers should read her book, absolutely, it's exceptional. But aside from that, you know, my I would say, you know, I felt for me, again, I'm I'm not a clinician. But I also am fascinated and want to have a deep understanding of you know, the science and care behind a lot of things. So you're going to have to understand that when I'm translating complex topics and medical information to the layperson and developing, you know, patient materials and things like that. So, you know, I think with my experience, I felt better, because I knew if something was a right, I knew who to go to, I knew who I could escalate things to if I needed to, I didn't at all at that point. But I felt very confident again, I knew the team that was coming to get him. So that made me feel good. Again, we had continuity of care that is very rare to have the same unit for six days in a row. But you know, I definitely think as we've gone through, you know, Max's journey, and there have been other situations where, you know, we would, you know, he's a kid, so we go into the ER occasionally. And an ER was my one was one of my product lines as well. So I still know quite even though I haven't worked for the health system for quite a few years, I still know a lot of people in the health system, and I still know who to contact when I need something. So, you know, that is, you know, when things maybe we're not I have not been 100% then, you know, I'm like, hey, it gets one I need to get, I need to get a bit more information. You know, Dr. Oddish. His story is definitely unique in that. I mean, to give light to the fact that, you know, for a lot of the situations that people just might assume that patients are not conscious for who they are. And that that I think, is really unique in that acute care space for people to realize. And again, it can, it can be translated to NICU as well of, of the parent, you know, the parent experience, like we hear everything you know. So I remember during, during the, when we're in the more acute setting in the Henry Ford's NICU has pods, and their, their, their pads are really for the sickest of the sick. And I didn't actually realize that until they had residents taking a tour of the NICU. And as I was bedside, and they said, Oh, this is what these two pads back here are for the really, really sick babies. And I looked around and I was like me, oh, that's my child. So it's like they, you know, it's really, I think, I think, again, it's it's improving a lot of the communication training, I think that people get, it's getting better, and more just being, again, more cognizant and aware. And just because it's a baby doesn't mean, you know, like, again, these, these parents have to be healthy to take care of their kids, and really, you know, make sure that their kids are getting the best or whatever they need to reach their potential, we need healthy parents for that. So just, you know, understanding the impact of a lot of that, and again, you know, I think Randy's book was fantastic to talk about, you know, the mental health impacts that had on her of hearing, you know, her co workers say, you know, like, the circle the drain, things like that, where she's like, wait a minute, that's not okay. Yeah, exactly.

Daphna 26:53

Your point is well taken that our words matter. And you're always when I hear you speak about the physicians you've interacted with, and the health care system, were always so gracious, you're very kind. And maybe that has to do with your marketing background. But I'm wondering, you know, I'm sure you've had these experiences, what is the most helpful thing a physician has said to you, and I'm equally interested, maybe more interested to hear what is the least helpful thing a physician said to you, or that maybe you hear in the in your, in your community,


but the best, the best thing that I think has been told to us and our journey, my own personal journey, really was to, you know, go home and love my child, give them experiences, take them out in the fresh air, put his feet in the grass, and have, you know, create family memories. And that wasn't, you know, to give up on it's not, you know, I think a lot of times that can be seen as like giving up or whatever. But, I mean, he was enrolled in therapy as we had plenty. But I think that point is well taken. And and in our own journey, I've seen this where, you know, we burned ourselves out with therapies, the first 18 months, and then we found a balance, and coincidentally, Max, you know, accelerated in some of his development, when we'd take a break, and we'd, you know, sit in the sunshine or go on vacation or, you know, get away for a couple days. And so I don't think that, you know, it's a, it's a whole journey, it is not an A one moment fix, you know, that's, it's, it's kind of just having to adjust your sails to what you anticipated. And what I think, you know, things that aren't helpful, again, are the absolutes, the even if, even if that's the, the child's trajectory is they will not, you know, be able to walk with their feet, they can get around in a wheelchair, they can, you know, I mean, there's like, accessibility. And this is something that I've heard over and over again, is, you know, disability is not the issue accessibility or an accessibility is the issue. And so, you know, there's there plenty of what I call lamp lighters that have shown the way that, you know, you can move barriers out for your kids to do many wonderful, amazing things that you never thought you would in life. And I think, regardless of what a child's outcome is, families, you know, they have to adjust their sales and what their dreams are and what they anticipated, you know, Max's in baseball right now. He is not the fastest kid. And my husband was college athletes. So it's really hard for him to see that he's kind of maxing out his time in, you know, little league, where all these kids are starting to really know that gap is just getting wider and wider. Which isn't to say that he won't continue to participate. But it's a it's our reality, and it's his reality, and if he still loves it, we'll do it. But as a parent, you know, you have the His hopes and dreams and it's, you know, just looking at how can you readjust that. So I think, you know, really clinicians and providers can can really talk to parents about, you know, saying, you know, whatever is to come there are ways to make things happen mix loves basketball, will he ever be on a basketball team, maybe not, but he loves basketball, he will shoot the basketball in the, you know, in our driveway for hours. And he's actually pretty good at. But, you know, the whole coordination of like, dribbling on a court with like, aggressive, other, you know, neurotypical peers, I don't think that's in the cards for him. That's okay. But he loves to just shoot with his friends in our driveway. That's okay.

Ben 30:42

I'm also a big basketball fan. And my NBA dreams got shattered very early.


On that's it, too, you know, in parenting today is really tough. I mean, people you know, you have like, competitive parenting, without disability, and then you add in disability, and you're like, oh, my gosh, and then there's competitive parenting within disability. I think there's all sorts of stuff.

Ben 31:02

I think LeBron James is born a few days before or after me. And in high school, I realized there was a big gap. That was not

Daphna 31:11

well, and that's true for all of our kids, right? We don't know what anybody's potential is going to be. I mean, Ben's a perfect example. Right? I am so touched by what but we're by what you said, I, I think what parents are very much grieving. Earlier, I have felt what parents are grieving in the beginning is the sense this loss of normalcy, and with just a few things, a few, you know, intentions, but maybe we can reset some of that for them and say, look, look at some of the things that your baby still needs just like every other baby. And that I mean, as a mom, that really touches me, and I could see how that could be useful. But I'm not sure that all of us are doing it. You know, I think as intensivists we we know about this first 72 hours, we know how to get through cooling, we know what to anticipate, we know what to tell you to anticipate we know what we're worried about. We know what rewarming looks like, we can tell you the stats, he can tell you the figures. And then I I feel and I can only imagine parents also feel that it's that transition home and the uncertainty that as much as parents are unsettled, about physicians are unsettled about also. And, you know, I don't know if you have any resources, physicians, dealing, you know, with our own with our own uncertainty, because I think we don't like to say that, that we don't know.


And I think that is one of the biggest gifts honestly, that we were given an our journey early on was saying, we don't know how it's gonna turn out. And that meant that there was possibility for anything, and that possibly for anything can be turned into a positive. So you know, our neonatologist said, I asked him what what do you would success look like for Max down the road, and he said, I would see success if Max can come up to me and give me a high five. And, you know, when you think about this, at the time, I was like, Oh, that's cute, you know, and then like, over the years, that's like, because these things stick in your head, I cannot I can remember all these acute situations, you can remember every detail vary. That's one of the unique things about the brain processing trauma, and experiencing it. And you know, when you really ruminate on, on what that meant that I was like, Oh, well, that could have been a lot of things like that could have been Max rolling up in a wheelchair, and giving him a high five that could have been, you know, like, that's a big deal for max to give a high five and that's like, you know, like, his ability in his potential. You know, and where we are today is just so, you know, but I think that's like, kind of a good middle of the road thing. And that that that note, you know, to me, as a parent was like, okay, you know, that sounds like things, whatever will happen are going to be okay. So, and okay gets redefined. You know, and, and it might it's I don't think anyone wishes for their child to struggle. But the fact is that many of these kids do and well, and have these things that we can't help. I mean, there's therapy and, you know, to help kids reach their individual potential, right, and there's new things on the horizon. There's preventatives, that, you know, I know there's a lot of biotech out there that's hopeful to explore, you know, I hope it works out for sure. We'd love to decrease the incidence of HIV. Absolutely. But in the meantime, you know, what do you do with that, you know, disability is, is a fact for many, many families and Um, and we can't, we can't do anything but try to, again, readjust our sales with that. And for physicians, you know, I think it's you have been trained to cure and fix and try to, you know, prevent and things like that. But you're also humans and have any, like you said, your parents, as well and think about what would I do in this situation? You know, and I think, you know, part of it is figuring out how to connect and be that vulnerability and authenticity of being human, really is where I think the best connections form. So

Ben 35:40

let me let me ask you a question when it comes to, I think we're talking about our relationships with between between physicians and families. And I want to believe that I got better over time. But there's one aspect of dealing with families that I feel like is so far yet feels impossible to me. And even if parents are not perfectly upfront about it, you can sense in on many occasions, the sense of guilt that parents have, which is completely unjustified. I mean, just completely unjustified. Parents, for the most part, have felt something showed up to the hospital did everything correctly, and yet, you can sense that they feel like if they had done something different, they would have not, they would not have been in this situation. And I feel very helpless in trying to alleviate that feeling. And I'm wondering if maybe after they leave the NICU, through hope for HIV, you have found avenues to explore where you can help parents with that with that guilt.


Absolutely. I mean, and guilt as a part of trauma and grief. So that is just a natural human response is to take that on. And one of the things that we encourage because peer to peer support has parameters around it. We are not mental health professionals, but equally as important to connecting with other families to kind of coach you along your journey and, you know, emotionally support and everything that is access to mental health support. And that I feel should be standard for every single family is to find and get into with someone because that is, like I said the whole, you know, taking on that guilt or responsibility for something that just happens. For whatever you know, the causation is, is something that is that natural human response that needs to be worked through with a trauma trained therapist, because that's going to give people the tools and the processing that they need to get through that I blamed myself. Why didn't I go in a week before and demand a C sections?

Ben 37:42

Exact? It's exactly right. It makes no sense. And it makes no sense. It makes no sense. Because if you had done that, then you would have you would have done something that that was that would be ridiculous. Right? I mean, so it's so difficult. I think it's so difficult.


Absolutely. You know, when I had I had conversations, I mean, again, I'm connected in with health system, but I also have neighbors that I have a neighbor who has a doctorate midwife, and I have an OBGYN that are like, you know, let's stone's throw from me. And I can't tell you how many times I mean, they're so gracious to talk to me about like, you know, just debriefing to over a glass of wine on the porch, you know, of, of working through that. And, you know, tell me how, you know, what did what are the books say about this? What did you, you know, what does your training say about this? And they're like, you're, it's not you this just happened? Like, so, you know, and I and I did work with a therapist too, because, you know, like, it's, it's heavy, and it's a lot and I needed to feel good. And every family deserves to feel their best after going through this and feeling like they can get through and, and that these feelings can be manageable. So I mean, obviously, nine years later, yeah, I mean, sure. I think what if thing, you know, occasionally will still pop up. I think that's just normal and part of the journey, but certainly, I have more peace with it. And knowing that, you know, I did everything I could and and I went in and if I hadn't gone in, there would have been a very different situation.

Daphna 39:12

Absolutely. Yeah, absolutely. No, yeah, I think that's a such an important point to focus on. To try to, you know, how can we build parents up by saying, Gosh, I mean, you saved his life by by coming in, you didn't do the wrong thing you did above and beyond the right thing. You also touched on something earlier about your top three questions. And that really resonated with me because I find that parents are so resilient and they rise to the challenge of of what their children need. But something Ben and I have talked about very frequently is how do we support parents in doing that but not losing themselves? Either, right? Because So what I heard from you is that that was a fear you had, and you have this life plan for your children, but also for yourself? And how how, how do you guys navigate that? How do you help parents deal with that other thing that is maybe the elephant in the room, but is really a big part of your own, you know, adult development?


Yes. And I think society in general, this is a two fold issue. So society in general right now. And I remember my mom telling me this, she said, the pressure on parents was never this great when you were a baby. She said, ever, this was never, there was no perfect parenting, we were, you know, throwing kids in the back of a station wagon without seatbelts. There was and people just did their thing, I think. So it's twofold in that one, right now, being a parent is really difficult in general, because you have this self sacrifice narrative that, you know, everyone, if you're not, you know, the Pinterest parent, that's, you know, the PTO president and doing all these things with these magical crafts every three seconds of your life, you know, as a parent, you're failing, and you're a terrible parent. And because you see it, I mean, and that is the, I would say, the downside of social media that, you know, everyone's like trying to do this big, you know, highlight reel of their life. But, you know, when it comes to this, you know, it's like, parents, you know, really can, you know, can, can take this time to, you know, to find themselves again, and to maybe explore something different in turn, you know, we talk about turning pain into purpose. And we have done some work with our medical advisory board members who, you know, one in particular Dr. Su Hall, she's a neonatologist that is now retired, but worked a lot with psychosocial support development, with the NICU and doing some research behind it. And she's talks very, she shared with our community about how important it is for families, not in parents not to lose themselves. And you might be able to, you know, you might have a shift because your child needs something extra. And you might have to shift out of the workforce, like when you anticipate it continuing. But there's other ways that you can find fulfillment and joy, and you know, maybe get back to that as well. So, you know, not everyone has the support, to Lea, we're very fortunate to have, you know, access to good childcare and family support and things like this here, not everyone has that. So how you make it work? And how do you do that we we talk a lot about, you know, in the, the buzz term of self care, really is, you know, it's not spas, and you know, hot baths and massages, that sounds nice, though. But it's really, you know, how do you do the work, to, to feel at peace and explore your own identity, and we do a lot of that work, we have actually a self care group that has different monthly challenges we've done before of like, you know, find something new, whether it's an artistic pursuit, or volunteering, or, you know, maybe a different career. I mean, there's, there's a lot of different opportunities out there for families, we have a lot of families that have gone back to nursing school to become nurses. And, and a lot of different, you know, shifts in I mean, I never would have imagined that, you know, if you had asked me at the beginning of our journey, and that I'd be, you know, the executive director of a foundation that's dedicated to, you know, a brain injury that my child experience. I would not say that, that would be something I saw in my career path, you know, but being able to find different ways to find yourself I think, are it's so critically important and holding on to that and again, and prioritizing your relationships, you know, that is, I mean, and also understanding that you know, that everyone grieves in a different way and processes in a different way. So my husband and I were on different we are in different chapters for sure we're in the same book are in for a long time. But we're certainly in different chapters. My acute grief was, you know, of processing the situation was very, very upfront and his hit really when Max turned five so hitting into kindergarten was a big year for him. And he was always like, you know, Sonny is roses like Yeah, it's hard but he's doing you know, like all he was which is good because you know, both of you falling apart at the same time can be really difficult to take turns but yes, absolutely. But you know, and that was at that point where you know, I said to him, I'm like, You should probably go talk to someone like I am here for you, I'm here to support you and you know, I love you. But this is complex stuff and I am not a professional and I can only say that you know working with the professional to process my trauma and grief. You know, it was life changing for me and life giving it gave me a lot of my I own, you know, existence back. And so in he did, and there's a lot of stigma behind that, especially for men. But we find that you know, a lot of the, we have a dads group too. And they connect, and we'll say, Hey, I'm having a really hard time with this. And they encourage each other as well to get help, and to talk through, you know, the difficulties that they face. So there's different nuances for you know, every family dynamic, but certainly, you know, prioritizing yourself and making sure your basic needs. I mean, this is the hardest part is like having to encourage people to just take care of their basic needs, you know, like, make sure you eat, make sure you drink water. It's, you know, because everyone is, again, so self sacrificing, because they care and love their kids so much. But you can't be the best parent that you can be to that child. If you're not taking care of yourself. It's that old oxygen mask, you know, put your own. Yeah, exactly. But it's really hard to do sometimes

Daphna 45:59

really hard. Right. My, my last question for you is, how do you think we reach parents who say, you know, peer to peer isn't my thing? I don't really want to do the support group thing, or, you know, I think that's a lot of dads for sure. But certainly some moms who say, I don't want to know, or I don't want to talk to other people. How can we support them as they're on their way? Out the unit?


Yeah, I think just making sure that they know that it exists and how to access it. Because that's absolutely correct. Not everyone's going to want it, especially not at that time, and they're already feeling overwhelmed by everything that just happened, or how they're coping is just to plow ahead. And, you know, for a lot of people, you know, kind of pretend it didn't happen, or, you know, there's, again, a million ways that the human experience processes, trauma. And so, you know, I think just again, having them know that someone's there that people, you know, exist out there, if they ever need it, and saying that, like, you might not want to connect now. But know that if they're, you know, if you're ready, or when you're ready, there is a whole community of people across the outcomes, you know, a lot of people also I want to say this to whose kids might be on the more less affected spectrum, or, you know, developing in a typical range, have a lot of survivor's guilt. And so that a lot of times is a barrier to connection. And so, you know, I always encourage families that have that, to remind them that they went through this trauma with their child, and it's valid. And regardless, no one can help how their child turns out, you know, out of this, they can't therapies help, certainly, but you know, your coin flip is your coin flip. And that doesn't mean that your experience is invalidated because of your child's outcome. And so that's something that we encourage, because connection, you know, if that's a barrier to connection, humans need to connect, we need to be in community with one another. And, and that is definitely something that I think can be a barrier to connection is that self imposed survivor's guilt?

Ben 48:16

That's in my last question for you is, I wanted to know for for clinicians and providers that are listening to us today. If there, there is specifically one book that you would recommend people read, and specifically people who are involved in caring for babies with HIV. I'm just curious what your recommendation would be.


There, there are a couple of books, there's one called what I would tell you, and it's by Julie Qian, she's in Canada. She's one of our parents, and it's a beautiful kind of guidebook for parents, but I think is very beneficial for anyone that's caring for, you know, either a child in the NICU or the HIV population in particular. And then on the on this, the parent side that I think is actually really great for, for anyone to read that's involved with any facet, because this is also traumatic for you, as providers to see families go through this. And it has been the manifesto that I have stuck to in has been probably one of the most profound books that I've read, and it's Rising Strong by Brene. Brown. It is absolutely the heart of I think the human experience through through difficulty and, and that is something that I think anyone can benefit from.

Ben 49:41

Well, thank you so much. We're, we're going to conclude this episode, we're doing a sort of two parts episode where where we sort of had the pleasure of having you on today with us, and we're gonna sort of answer some of some of your questions for you on the hope for a podcast as well. Betsy, thank you so much. I want to reiterate that A hope for HIV can be found on hope for HIV that org. You also have a podcast, I am very happy that we were able to connect. And we were able to find out more about her for HIV. I think what you do is amazing. And thank you for being with us. Definitely. Thank you as always,

Daphna 50:15

yeah, that's you're an inspiration. Thank you for everything for being with us today. But everything that you you're doing for families, we appreciate it. We're so grateful for you. Thanks for your time.


Thank you for having me.

Ben 50:28

Thank you for listening to this week's episode of the incubator. If you liked this episode, please leave us a review on Apple podcast or the Apple podcast website. You can find other episodes of the show on Apple podcasts, Spotify, Google podcasts, or the podcast app of your choice. We would love to hear from you. So feel free to send us questions, comments or suggestions to our email address NICU You can also message the show on Instagram or Twitter at NICU podcast. Personally, I am on Twitter at Dr. Nikhil spelled Dr. NICU. And Daphna is at Dr. Dafna MD. Thanks again for listening and see you next time. This podcast is intended to be purely for entertainment and informational purposes and should not be construed as medical advice. If you have any medical concerns, please see your primary care practitioner. Thank you


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