#024 - What Does It Mean to Truly Support a Family Through HIE?

Hello friends 👋

This week, Leah sits down with Betsy Pilon, Executive Director of Hope for HIE, the global nonprofit dedicated to supporting families impacted by hypoxic ischemic encephalopathy. Betsy shares her personal journey as a NICU parent, from the frightening moments before Max's birth to navigating cooling, an uncertain MRI, and a discharge with almost no guidance. Together, they explore what families need most during each phase of the HIE experience, the groundbreaking Polar Bear Care initiative that allows holding during therapeutic hypothermia, and why naming a diagnosis matters. A powerful conversation for NICU families and care providers alike.

Link to episode on youtube: https://youtu.be/G6tyE0IhD94

----

Short Bio: Betsy Pilon is the Executive Director of Hope for HIE, the global nonprofit dedicated to supporting families impacted by hypoxic ischemic encephalopathy (HIE). She has been with the organization since 2013, first serving as President before stepping into the Executive Director role in 2020. Under her leadership, Hope for HIE grew from a 200-family Facebook group into a community of over 15,000 families, researchers, and clinicians worldwide.

Betsy is herself a parent of a child with HIE, which drives her deep commitment to advocacy, education, and research. She serves on several key committees including the Newborn Brain Society Board of Directors and the American Academy of Neurology Child Neurology Measures Workgroup, and has presented at national and international conferences on HIE care and family support.

She holds a Bachelor of Arts in Communication from Alma College and brings a background in healthcare, education, and corporate communications to her work.

----

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

Leah MG Jayanetti (00:27)Welcome back everyone to this next episode of Beyond the Beeps. This is a day that I have been waiting for for a long time. We have an incredibly special guest here with us today, Betsy Pilon. Betsy is the Executive Director of Hope for HIE, which is the premier organization and global nonprofit patient advocacy and support organization dedicated to improving the quality of life for children and families impacted by neonatal and pediatric acquired hypoxic ischemic encephalopathy (HIE). We will go through what those words mean in a moment. They work through advocacy, awareness, education, research, and support.

Hope for HIE connects over 15,000 families, researchers, clinicians, and the greater community worldwide through a comprehensive network. They are incredible, doing incredible things. Betsy herself is a parent of a child who was born with hypoxic ischemic encephalopathy, or HIE. Her son received excellent clinical care, but when she and her family were there, they received no educational information, support, or information on HIE.

Once she got connected to the barely baby organization Hope for HIE through Facebook, which at the time was a support group, she worked with the other families to grow this organization into what it is now, 14 years later. She is based out of Detroit, Michigan and travels the world as an accomplished speaker, writer, advocate, and connector — a connector, that's a great word, and you absolutely are — with a background in marketing, corporate communications, education, healthcare, and automotive.

Leah MG Jayanetti (02:11)She is involved in several neonatal and neurology-related work groups, task forces, and committees, elevating the lived experiences of the HIE community to be a change agent in patient advocacy and research. And she is here with us today. Of course we always have parents, but she is also an expert in this field — a parent expert, a content expert — and has spoken in Washington, D.C. on policy, advocating around the world on this topic. You may have seen her at conferences and heard her on different podcasts, because this is a really important topic and it is something that our families experience in the NICU quite a lot.

I am thankful for so many changes in care and in the way care has been provided for families, especially here in South Florida. We are getting incredible outcomes for babies who may not have had those in the past, but that also means we have families who need support to navigate what is going on. So this is an incredibly special conversation. Welcome, Betsy Pilon.

Betsy Pilon (03:22)Thank you so much for having me. I am so honored to be here with you.

Leah MG Jayanetti (03:26)And getting her on the schedule, y'all, because she is famous — so we have a big one here today. Welcome. Tell me a little bit about your experience when you were in the NICU with your baby.

Betsy Pilon (03:42)So my experience, like many in the HIE community, everything during my pregnancy went very well. It was my first pregnancy. I had excellent prenatal care and was very comfortable with our care team. Then at 37 weeks, my baby had maxed out on movement. I had been in clinic a few days prior because his movements had changed. We got checked out and were sent home because everything looked good on the ultrasound and checked all the boxes.

They had talked about kick counts, and when I felt things were not right, I called labor and delivery. They said to do my kick counts and call back, and if they weren't what they should be, to just come in and get checked out. So I did that, and he was not moving at all — there were no kicks to count. We went into labor and delivery and for whatever reason were not super concerned. We thought we were going to be that family that gets checked out and sent home. Instead we were whisked to an emergency C-section at our local community hospital. Then the neonatologist who was in the delivery room recommended that Max be transferred to Henry Ford Hospital in Detroit to receive therapeutic hypothermia (TH). We had no idea why he would need that or what was going on. He was born around 1 a.m., so it was all a bit unclear. That's how we entered the NICU world.

Leah MG Jayanetti (05:04)Yeah.

Betsy Pilon (05:12)My husband Mike followed his ambulance. I called my parents at 3 a.m. and said the baby's here and I need you to come be with me while Mike goes with Max. My parents came, and I was thankfully transferred down a couple of hours later and given a room at the hospital so I could be close by. We entered the NICU world and did not anticipate it, obviously.

You hear very much that the NICU is synonymous with prematurity, so I think we all get past a certain point in pregnancy and think we're good. I had no idea this could be something that happens. That was the genesis of our NICU days. We were in for just about three weeks. Max went through cooling. He had an MRI, EEG, and all the neurodiagnostic testing. He was given a bolus of anti-seizure medication because HIE babies are at risk for seizures — it is the leading cause of neonatal seizures. He then went through the clinical course, started breathing on his own, was able to eat on his own, and all of those wonderful things. But the MRI showed some significant damage to his brain.

Leah MG Jayanetti (06:43)Mm-hmm.

Betsy Pilon (06:43)So we had what we call the sentinel moment for HIE families: MRI day. That is the moment where they look to see if the injury is transient or if there is another cause, since HIE falls under an umbrella called neonatal encephalopathy (NE), which has many causes. It was determined that HIE was the diagnosis. We were not officially told that diagnosis while in the NICU — we were told that he had a brain injury. And then we were told, "Don't go home and Google this. What you might find on the internet is really scary and won't necessarily reflect your child's story." But we were not really given anything else. We were given a brochure for early intervention and a brochure about the Medicaid supplemental program in our state. That was it. We were told he would be followed up with the pediatrician and then neurology, but we had no real sense of what we were in store for, other than being told he was at risk for developmental delays, cerebral palsy (CP), and possibly learning and attention issues later in life. But we had this newborn baby — our first — and we just thought, what do we do now?

Our questions really focused on, before we discharged, is there anyone you can connect us to? Is there support for this? Is there educational information you can hand us? I had worked for a health system in a non-clinical role in the marketing and communications department and had helped write patient education materials for different service lines. The fact that there was nothing for this was really disappointing. We received excellent clinical care — the clinical team was incredible, and we still talk to some of his nurses 14 years later — but that gap was real. So of course we went home and Googled, and found Hope for HIE, the Facebook group, and blogs from three different parents who were writing about their HIE experience.

Leah MG Jayanetti (08:30)Right.

Betsy Pilon (08:41)What was really helpful for me was that the blogs spanned a spectrum of outcomes, which HIE does fall across. I wanted to see families living with HIE across that spectrum. I wanted to understand what we might be facing and what life looked like, because it was so ambiguous — a lot of "wait and see," "he's at risk for this," "we'll watch him," and "if he needs therapy we'll get him into therapy." That was the genesis of understanding the gaps that existed at that time for families, and experiencing those gaps firsthand as someone who had thought there would be more information out there for this diagnosis. It turns out it's not all that rare. I have been on a real learning journey for the past 14 years, working with so many wonderful people to help build Hope for HIE into the organization it is today.

Leah MG Jayanetti (09:48)Yeah — learning and creation. It's truly a birthing of new support, education, research, so many things that you all have been at the genesis of and pushing along. I have been in the NICUs in South Florida for 11 years, and it has changed.

Betsy Pilon (10:12)It really has, yeah.

Leah MG Jayanetti (10:12)It has improved. Everything has been pushing along. For the NICU — as the folks at The Incubator talk about — we haven't had too many new inventions, and that's what they're pushing for. But HIE is something that has been growing and changing and improving every year, if not every month. So bravo to you all, and thank you, because it makes a big difference for our families.

I want to go back to your pregnancy. There are two things you mentioned that I think are really important. First, you counted the kicks. I sit on the Fetal Infant Mortality Review Committee for Miami-Dade County, and we talk about this constantly. I'm really impressed to hear you say that the quality of the kicks changed — something was different. Not just whether the baby was moving in some amorphous sense. What was it inside you that said something was different?

Betsy Pilon (11:14)I think there were a couple of things. First, my belly felt different. Max had been an active baby — there's a kind of tension on your stomach. Mine felt very flaccid. I was like, this doesn't feel right, this is weird.

I will also say that the week before he stopped moving completely, I felt the movement change. I had called to get in and was told that sometimes movements can change as babies run out of room and things like that. But as Count the Kicks — which is a wonderful organization — would tell you, that's a misnomer. Babies don't run out of room. You should learn your baby's patterns and then pay attention to any shift. I did what I think most people in my situation would do, which was follow the guidance I was given.

Leah MG Jayanetti (12:02)Incredible. We don't hear this very often. You said something's different, you did the right thing — it's outstanding.

Betsy Pilon (12:04)Yes, you call. They taught me over the phone how to do kick counts — drink some orange juice and so on. Everything checked out, and they said they'd get me in to the clinic. I had a biophysical profile (BPP) and a non-stress test (NST) — all the things. It was great. And then it wasn't.

I think the biggest advocacy message from my experience is: know your body, listen to it, and don't be afraid to speak up. Don't feel silly about going in. They're your resource. I remember our labor and delivery team saying, "We're your emergency room. If you need to get checked out, come in — it's not a big deal." I think there's a fear of burdening someone, especially in healthcare right now where people are asked to do more with less. As patients, we sometimes feel like we don't want to be a burden. But that's where we find our advocacy voice — I just want to make sure my baby is okay, and I deserve that reassurance.

Leah MG Jayanetti (13:19)Yes, absolutely. Trusting ourselves as mothers — and having a partner. Often it's the partner who says, "No, we're going in." We need those partners to reassure us and help us trust ourselves, because the world has kind of taught us not to. We're trying to unlearn that and teach the next generation to really trust their instincts.

I really appreciate you sharing this, because we say it all the time: if your baby is different, that's an emergency. Go in and let them tell you it's okay. Wonderful. Okay, so let's move on. You've given us a wonderful story, and I want to break it down a bit — for our providers who are the actual caregivers, and for our parents.

In those first moments of birth, especially when a baby isn't moving well or there are non-reassuring fetal heart rate tracings and things get chaotic — as they did in your case — what do you think providers can be offering to families in those moments?

Betsy Pilon (14:34)In those moments when it's been identified that the baby needs support, things move very quickly. For our situation, there was noted fetal distress and the team said we need to get him out. I was lucky that I did not have to be put under general anesthesia — a lot of moms do, and they miss the birth of their baby, which is really traumatic. They had to place a catheter and prep everything, and then the anesthesiologist came out and gave me the rundown of risk factors — all of that actually caused me to have a bit of a panic attack, which was ironically beneficial because it got Max moving. That shot of adrenaline was really good. The team took a pause and said they didn't think they'd need to put me under general anesthesia because he was now moving and his heart rate variability had changed. So it was still an emergency C-section, but I was able to be conscious for it, which was really great.

The anesthesiologist — I swear he was the unsung hero of the delivery room that night. At 1 a.m., he was right next to my ear, and as I was having a panic attack, he was the calmest person in the room. He was saying, "I'm so sorry we scared you, but this is a good thing, we're going to get him out" — just really calm and reassuring. The labor and delivery nurses and everyone prepping me didn't have time to do that. I think in that moment, there's a lot of really great language that can be used: "We're doing this for your health and for your baby's health. We're doing everything we can to get this baby out as safely as possible." You don't know until the baby arrives how things are going.

Leah MG Jayanetti (16:37)Right.

Betsy Pilon (16:45)When Max was finally delivered, which happened very quickly, he did give out a little cry, which I think was reassuring to us. The neonatologist knew immediately that he was going to need support right away. He was intubated — he wasn't pre-breathing, meaning the diaphragm wasn't moving on its own the way they want to see before intubating. So I think they knew it was coming. And I think they were surprised—

Leah MG Jayanetti (17:14)Had they told you that, Betsy?

Betsy Pilon (17:17)I think they did. It's hard to remember in the moment, especially 14 years later, exactly what was said.

Leah MG Jayanetti (17:20)Of course, yeah. What I heard you say was really helpful — that anesthesiologist calmly narrating what was happening made such a difference. Even when we're pushing a baby out, so much is happening without our full awareness. Never mind a C-section, where everything is literally being done to you. Having someone next to you saying, "Okay, this is what we're doing, and it's okay, and here's how this works" — it helps make sense of something that doesn't make sense.

I'm also wondering — when they assessed your BPP and saw what they saw — do you recall whether they explained what they were seeing, or did they sort of let it be?

Betsy Pilon (18:16)We got in and got monitoring, and pretty quickly they explained what they found. The key words they used were that his heart rate didn't have variability — it was steady, around 120, which wasn't dangerously low, but there was no variability. And he wasn't pre-breathing. So those were the key terms. They said, "He's in distress and he needs to come out. We need to do a C-section." For my own part, I had actually been nervous about the idea of a C-section — or honestly just giving birth in general. Two weeks prior I was calling my cousin and talking through all of it, thinking I'd have a normal labor. And then there I was, not needing to worry about labor at all. You just never know how things are going to go. In that moment, I had great trust in our team that they were doing what was best to get Max out and to take care of him.

Leah MG Jayanetti (19:30)Did they bring him to your face or chest at all, or did he have to go straight away?

Betsy Pilon (19:39)No, he had to go straight to be intubated. As a parent, I was like, do what you've got to do — I'm fine. The OB continued with closing everything up, and my husband was there. Something I appreciate is that there wasn't a sense of visible panic in the room. Some families describe seeing nurses crying or everyone looking terrified. That wasn't my experience. The team seemed concerned, but it wasn't alarming. I think that's why our approach as parents was much more like — they've got him, they've got this, whatever he needs. I had no idea that being transferred to another hospital was such a big deal. I had no idea about NICU levels before that.

Leah MG Jayanetti (20:43)That's really important — what the room feels like when everything is being done to you. You were observing all of it. The organized chaos had everyone under control, and that's very important for a family to feel.

Betsy Pilon (21:04)We didn't feel left without communication. Everyone was narrating: "This is what's happening next. We're going to take him to be evaluated. We're going to place this probe to see what's going on, and then we'll come back and let you know how he's doing and what we'd suggest for the plan of care." It was very thoughtful. And then for my post-recovery, the OB was so kind. It definitely shook her — I've seen her since and we've talked about it — but the care in those moments was really excellent.

Leah MG Jayanetti (21:42)So those were the first moments. And then the other great thing I heard is that you were transferred to be with Max shortly after. That doesn't happen very often.

Betsy Pilon (21:55)No, I was very, very lucky. I think part of it was because I was flagged in the system as a former employee of the health system. I had changed jobs about a year prior, but I think I was still flagged. So I do think that made a difference. There were beds available in the maternity ward at Henry Ford Hospital, and I got a private room, which was really nice. The proximity was very close.

I also don't know if some of it was because things had gone very bad during transfer. As they were getting Max into cooling, he took a serious turn and they were afraid they were losing him. So the severity may have been much greater than what we sensed in the delivery room.

Leah MG Jayanetti (22:46)Those little paddling ducks. Well, either way, keeping your family together is the best thing they could have done — to maximize outcomes, whatever those might be. I am really impressed. It's truly courageous, compassionate, and best practice. It doesn't happen all the time.

Betsy Pilon (23:22)We got very, very lucky. Even the neonatologist who was in the delivery room — he was on service in the NICU for the next five days and was our primary physician. The continuity of care we had was exceptional and unheard of, and I will never forget the care he brought to the bedside every single day.

Leah MG Jayanetti (23:54)So Max needed cooling. In that initial phase — the birth, the assessments, the evaluations — it sounds like things moved quickly, which makes sense because the therapeutic window is narrow. They were assessing him to decide what care he needed, and Max required cooling. Can you tell us a little bit about how that conversation was presented to you?

Betsy Pilon (24:34)In 2012, it's really interesting to reflect on that moment in the science and care of HIE. Cooling was transitioning from clinical trials with good data on safety and efficacy into best practice. So there was this moment in time where some babies who needed cooling weren't getting it. Being in Detroit, close to Dr. Seetha Shankaran and her landmark multi-center trials for HIE, we were very lucky. The month after Max came home from the NICU, the long-term data on therapeutic hypothermia was published. So we benefited from having access to a team that was very familiar with the current research.

When the neonatologist had done his assessment and came in to talk to us about next steps, he said, "We have done these assessments. We think Max is an excellent candidate for this therapy, but it requires a transfer downtown because that's where the equipment is." He explained that they cool the body down for three days to slow everything down and let the baby heal, and then there's a warmup phase followed by further evaluation. I don't even think they mentioned the MRI in that consenting conversation. He said we'd need to sign consent forms to send Max down. We said, of course. There was implicit trust — do what you've got to do.

A lot of coping during trauma and crisis is just going with the flow and taking it moment by moment. But the information was presented clearly and in an understandable way, and we were like, if he needs this, then let's do it.

Leah MG Jayanetti (26:41)I still remember when you told me your story — it brought me right back to the first time I was treating a baby who had received therapeutic cooling. I'm a pediatric physical therapist by training prior to all of this, and I believe it might have been 2009 or 2010. I remember thinking, what is this? This is incredible. And of course, having grown up in New England and knowing stories of people who fell through the ice and how that informed the science, I just wrapped my head around it. And then seeing this little boy who looked pretty normal after not being alive — it was really extraordinary. And now to see how far it has evolved.

Betsy Pilon (27:52)It sounds like science fiction, right? You're going to do what — cool my baby down for three days? But it's amazing.

Leah MG Jayanetti (28:04)It truly is. Knowing that we can essentially pause the secondary cascade of injury is incredible. Let's stay in that therapeutic window, because you do a lot of advocacy work and you mentioned earlier different protocols and treatments.

One thing that happens during cooling is that we traditionally can't touch the baby — that's the current standard in the hospitals I'm in. But I also hear about things like therapeutic cooling blankets that allow for kangaroo care. Can we do that? What is the gold standard right now for the cooling treatment phase?

Betsy Pilon (28:57)During cooling, for a long time, parents were told: do not touch the baby, do not overstimulate, do not breathe near him. And of course we said, of course — we're not going to do anything to jeopardize him. But that separation is so traumatic, and it's totally antithetical to parenting and to the biological process of bonding. That bonding isn't just about feeling good and the dopamine boost — it is physiologically imperative for both the baby and the parents.

Because cooling was such a new advancement and babies are so fragile, the clinical instinct was often "let's just not touch it." But as we know from the premature infant world, how quickly can we get parents holding, how much can we do kangaroo care — as often as possible. Over the years, some wonderful researchers have worked with families to address this, because it is incredibly traumatic not to be able to hold your baby for several days during cooling.

There are also developmental care considerations. Physical therapists and occupational therapists often can't get to these babies until they're out of cooling. And there are many therapists who want to get their hands on these babies earlier, because we can start doing things that improve outcomes. Five to seven days without holding, touching, feeding support — it's multifaceted.

Two researchers who have done a lot of work in this space are Dr. Alexa Craig at Maine Medical Center and Dr. Ela Chakkarapani in the UK. They've both studied holding during cooling. In the UK it's been called "cool cuddles." Building on their work, in conjunction with the Newborn Brain Society, we launched Polar Bear Care this year during HIE Awareness Month in April, really to foster more units feeling comfortable with holding during cooling.

Now, holding is not the same as skin-to-skin — you cannot do true skin-to-skin because of temperature management. But there is a lot of developmental care that is possible. These cooling blankets are also getting better and better. My plea to the manufacturers is always: work with families to build a better product. One that has the temperature regulation it needs but is less bulky and less intimidating so that families and nurses can feel confident with it.

Through Polar Bear Care and the Holdathon we did in April, we've built polarbearcare.org, which has sample protocols, nursing videos, facilitation videos, tips, tricks, and care packs to make it feasible and safe. Some units that already have general holding guidelines for all babies simply include HIE babies in those. And we do find that facilitated holding can lower length of stay, improve bonding, and decrease trauma — it is trauma-informed, family-centered care.

Not every baby will be eligible, and there are inclusion and exclusion criteria in the sample protocols. But families who are able to hold their babies in any form — even through a cooling blanket in their lap — overwhelmingly report decreased trauma. I have not heard a single parent say it was the wrong choice.

Leah MG Jayanetti (33:57)Right, yeah.

Betsy Pilon (34:00)The only bittersweet part is for families who couldn't hold during

cooling and now see others who can — they say, "I wish I had that." But that's exactly why we're in advocacy and support: to make it better for the next generation of parents. The intensive care management of these babies without holding has improved significantly over the past decade, and there are so many more improvements coming in the general medical care of these babies, alongside interventions like cooling and other therapies hopefully on the horizon.

Leah MG Jayanetti (34:43)The way you tell your story now is with such balance. I'm wondering — if they had come to you during Max's cooling and said, "We also have this approach where you would be able to hold him — he qualifies, and we'll be right there with you" — what do you think you would have felt in that moment?

Betsy Pilon (35:26)I would have been elated, if they said it was safe and that they'd be right there. Yeah, we would have loved that. As soon as we could hold him, we did not stop. We kangaroo cared that kid. We were at bedside as often as we possibly could be. I was still healing from my C-section, but as soon as I could get there, we were there. The NICU was set up in pods, so there wasn't a ton of room for two parents at the bedside all the time, but we definitely shoehorned ourselves in there.

Max in particular was very scary in the first 12 to 24 hours, but he made a really good turnaround and was actually extubated during cooling — he was on a nasal cannula. From that point we were asking, when can I hold him? He's extubated, he's on nasal cannula — can we hold him now? And they would say, we're going to do the MRI first, and we'll wait until the umbilical line comes out. And so we waited.

I think what I've learned from so many wonderful nurses pushing this initiative forward is that it just takes practice and confidence to get it right. I watched the training videos and I was really impressed by how they manage the lines and the thought that goes into making it feasible. So yes — if holding had been an option, I absolutely would have done it, heartbeat to heartbeat.

Leah MG Jayanetti (37:22)For Polar Bear Care, are there simulation labs in the US for this, or are the videos sufficient?

Betsy Pilon (37:30)I don't think there are dedicated sim labs yet. I think the videos are a great starting point, and there is definitely practice that happens with dolls first. You can see some of those photos on the site. A nurse named Lisa Carothers from McGill University in Ontario has led a lot of that work — they practice with dolls, moving the lines, seeing what that looks like and feels like before doing it with a baby. So sim education is certainly helpful. It takes two nurses to facilitate, but that is not new for the NICU — that's standard for any baby who is intubated or on CPAP or NIPPV. Facilitated transfers with multiple team members are already part of the culture. It should feel manageable.

Leah MG Jayanetti (38:27)Exactly. A facilitated transfer is standard. Everyone should feel comfortable with it — get your partner, get your respiratory therapist if needed, and make the transfer. It is possible. How long does a Polar Bear Care hold typically last?

Betsy Pilon (38:55)I'd need to look that up to be precise, but I think it's roughly an hour as a guideline. Obviously if a parent needs a bathroom break, that's factored in — one of the protocol tips is actually to ask the parent to use the bathroom before getting set up. And as long as the baby is tolerating it, I don't think there's a hard limit. You stay as long as it's going well.

Leah MG Jayanetti (39:39)You stick around. Okay, good. So we have made it through the therapeutic window — for those listening, this is just the first couple of days — and now we move into the secondary phase. Max made it through, was extubated during cooling, had EEGs. Tell us about that.

Betsy Pilon (40:04)Max didn't have continuous EEG (cEEG), which is actually a different standard now. Continuous EEG is now strongly recommended. The American Clinical Neurophysiology Society (ACNS) guidelines for continuous EEG monitoring during therapeutic hypothermia have been completed and are being implemented. Max had an amplitude-integrated EEG (aEEG) for the first 12 hours of life, but it wasn't continuous. He had another EEG after cooling and possibly a third brief one, but nothing continuous.

When it comes to seizures, we don't know if he had subclinical seizures outside of that monitoring window. He didn't have any detected in the 12 hours he was monitored, but we can't know about the rest. That's exactly why the new guidelines are important. HIE babies — especially the "maybe babies," the ones on the borderline — need this.

To initiate cooling, it must happen within the first six hours of birth. Amplitude-integrated EEG doesn't necessarily pick up all potential subclinical seizures. What we are finding through quality improvement work and emerging research is that when you put continuous EEG on babies, some who might seem like mild HIE are actually having subclinical seizures and would be classified as moderate to severe — meaning they qualify for cooling and may have been missed.

Missing cooling for families is heartbreaking, because it's the one therapeutic intervention we currently have for HIE. There is a study called the COOL PRIME trial happening right now for mild HIE, and part of the protocol involves early EEG screening. I am very eager to see that data, because anecdotally clinicians have shared that some babies screen out of mild HIE when they get continuous EEG because seizures are found. If you think about how many babies could be missed out there, it's significant.

We are getting better at care, and it takes time to implement guideline changes. But it's really exciting to see, and in a 14-year span, the acceleration in both care and therapeutic options for HIE has been remarkable.

Leah MG Jayanetti (43:09)Yes, and even in the 11 years I've been doing this, I've felt a sharp increase in the last five. Just to clarify for our listeners: an EEG is when they place a little cap on the baby's head with monitoring leads to look for any abnormal neurological activity or seizures.

Okay, so now we are in the phase that looks more like a typical NICU stay — off cooling, initiating feeds, doing typical baby things — but now watching and waiting. The uncertainty of having a new baby is already a lot. And when we've been through something like this, our nervous systems remember all of that fear and compound it. In that period after the trauma and treatment, now watching and waiting — what was that like for you?

Betsy Pilon (44:34)With the HIE experience, it's really a series of wait-and-see moments: cool down, warm up, MRI day. After MRI day, can he feed? It's wait and see, wait and see. My husband and I tried to just take it moment by moment and not get ahead of ourselves. The MRI was tough because that's when they're putting all the pieces together — what the EEG showed, what the MRI showed, what the clinical picture shows — and trying to give you a prognosis. It's like a crystal ball that doesn't work very well, especially for babies in that in-between realm.

Max started feeding slowly but was feeding. After his MRI it was determined it was safe to begin feeding him. He was on nasal cannula for another week plus after cooling. And the feeding piece was really, really stressful. I think you hear that from NICU families across diagnoses.

There was a lot of pressure: "If he doesn't hit these feeding targets, we're going to need to give him an NG tube." I felt like that would be a failure. And then the pressure around breastfeeding and lactation consultants — just so much pressure after going through "is my baby going to live or die," and then three days of not touching him, and then a catastrophic MRI. To then be expected to nurse a baby who had not had any speech-language pathology support because, as we mentioned, developmental care often doesn't reach these babies until after cooling — it was just a lot.

For me, I decided: I'm pumping, that's something I can do, and if breastfeeding doesn't work out, I don't care, I just want my baby fed. A lot of families express feeling uncomfortable in interactions with lactation consultants because the "breast is best" message can be so strong, and parent mental health is equally important. We have to go home and take care of this baby. Feeling threatened by the possibility of a gavage tube if the baby didn't take enough volume was not a great experience — I still can't stand that word "gavage" to this day. But we avoided it, and that was a win. He eventually improved his suck and swallow, took full feeds, and went home.

And then we got moved to the step-down unit, which is a big victory. But it was an open bay with maybe 10 or 12 beds. Some had parents there all day; some babies were alone because parents couldn't be at the bedside. My husband had gone back to work. I was sitting there alone. During rounds one day I just started crying. A nurse came up and said, "What are you so upset about? He's doing well." And it was like — I have just been through two weeks of hell. My husband isn't here. I'm by myself. We weren't in a children's hospital with embedded psychosocial support. The clinical care was excellent. But it was extremely isolating.

We were the only full-term baby in what they called the "sickest pod" — which is a phrase that doesn't feel good to hear as a parent. Every day in the NICU feels like a week. It doesn't matter how long your stay is — nobody wants to be there.

Leah MG Jayanetti (49:58)That breaks my heart. It breaks my heart when our caregivers get burned down to the point that they can't see the humanity in each family and the journey they've been on. It's a systemic failure. We're failing our families, and we're failing our nurses and care providers when the only way to cope is to compartmentalize and pass that onto a family. I'm so sorry that was said to you.

Betsy Pilon (50:43)Fourteen years of therapy helps. It does.

Leah MG Jayanetti (50:48)And that's the difference between going through trauma and having your trauma re-traumatize you. Instead of someone sitting with you, wrapping you up in their arms and saying, "Tell me about it."

Betsy Pilon (51:01)Psychosocial support for families is an imperative — it's not optional. What is being done now in so many places is so amazing, whether it's peer support or embedded NICU psychologists. There are so many great programs doing exceptional work to prevent re-traumatization. That's something all of us in the advocacy and support world are committed to, along with our clinical partners who are driving it forward.

Leah MG Jayanetti (51:37)Absolutely. So when did the term HIE actually get given to you? At what point in this journey — early birth, cooling, treatment, post-treatment — was that language presented to you, if ever?

Betsy Pilon (52:00)So the first week was excellent. We had family-centered rounds and the neonatologist was wonderful. The second week went pretty well too. But in the third week, we had a different neonatologist who clearly did not enjoy talking to parents. We were in the step-down unit, open bay, and during rounds you could hear everything about every baby — not ideal. I heard them discussing Max, and I heard the word "encephalopathy." I flagged them down, because they weren't going to stop by on their own. I said, "Can I ask a question?" and he seemed visibly annoyed. I said, "I heard you say the word encephalopathy. Is that his diagnosis? That seems important — it's a big medical word." And he said, "Yeah, it just means it has to do with something in the brain. Don't go home and Google it." And then he walked off.

I immediately texted my sister-in-law, who was a pediatric physical therapist, and said, "Sarah, what does encephalopathy mean? I just heard this term and got brushed off." She said, "Let me call you when I have time to walk through it properly." So that was the first time I heard it.

Then a few days later, at our first follow-up appointment with the neurologist, I asked directly: "Is this HIE?" He said yes. By that point I had already found Hope for HIE. I said, "Okay, now I need you to explain all of this to me."

I had a tiny bit of distrust by that point — not because there was any question about the quality of care Max received, but because of the communication gap. I equate it to a doctor telling you that you have a tumor and then saying, "Don't go home and Google it." Is it cancerous? Is it benign? What is the treatment plan? This is your baby's brain — the hub of who they are. To not have any education, to not have it named, to not discuss it — that has been something I've asked about and advocated around for 14 years. Physicians sometimes say they use the umbrella term "neonatal encephalopathy" because the specific cause isn't always confirmed immediately. And I understand that. But qualify it however you need to — is it probable HIE? Likely HIE? I don't care. Give families a name. You would not be that vague in any other area of medicine.

It has gotten better. When you have an organization called Hope for HIE and resources that people refer to, the recognition and naming do improve. But we still have families every single week who say they found the diagnosis in their medical records long after discharge. That extra trauma is absolutely preventable.

Leah MG Jayanetti (57:10)You all had a post on your Instagram recently comparing two families at two hospitals — one where Hope for HIE resources were provided and one where they weren't. Their experiences were completely different. And it made me think of a family I encountered not long ago. Reviewing the chart, it was clearly documented as HIE. As the family was getting ready to go home, I was doing psychosocial support and checking in — safe sleep plans, follow-up appointments, connections for home. I said, "Have they mentioned Hope for HIE or support for HIE?" Mom looked at me like, "What?" I asked if she had ever heard those words. She hadn't.

I had to say, let me go check in with your team. And thankfully, it was quickly repaired — the nursing team followed up, the connection was made. But it was not a word this family had heard. It was a situation of: we cooled, it went well, he's feeding, we're good, let's go home. And as a parent, I understand that completely. You just want everything to be fine. You want to close that chapter. And when nobody is saying, "Let's keep watching this, let's make sure your pediatrician knows, let's make sure you follow up in the NICU clinic with this history so we can catch anything early" — that's a missed opportunity. There are things we can do to improve long-term outcomes for this baby and this family, and it broke my heart that it was nearly missed.

Betsy Pilon (01:00:39)We don't like surprises. And I think we owe it to every family to make sure they receive the same support. I sometimes hear from clinicians a bias of, "We only give resources to the more affected families" — the ones going home with feeding tubes or trachs. But that's only about 25% of the HIE community. HIE fundamentally changes your parenting journey, regardless of outcome. This wasn't a stubbed toe. Withholding support is not trauma-informed care — it removes choice and voice from families.

If a family chooses not to engage with support because they feel they're okay, that's a wonderful outcome. But withholding that choice is paternalism, and it's harmful. Families will eventually begin processing everything they've been through, and they'll ask, "Why didn't anyone tell me about this?" Especially when they find out the hospital had the materials the whole time.

These babies are going home to these parents. Those parents need to be as psychologically healthy, physically healthy, and empowered as possible. And just because HIE may not have a major visible impact on a child early on doesn't mean there won't be later. Emerging data shows that even mild HIE babies are having school-age impacts. If families don't know to look for that, it's a domino effect down the road. It takes a lot to qualify for special education services, and if you don't have the language and the history, you're behind from the start.

One of the biggest gifts you can give a family is the choice of support. That is itself an intervention — one with evidence behind it. It should be given to all families. If there is a specific diagnosis and there is an organization for it, let the family know. If a family has a genetic disorder and there's no organization yet, connect them to whatever exists. People need that information to be their strongest selves for that child.

Leah MG Jayanetti (01:04:12)It makes me think too — in the paradigm of the hospital, with the neonatologist and the parents and family-centered rounds — we do this for our premature babies, for our cardiac babies: "Here is what we're watching for." That is empowering parents to understand the picture. And naming things helps. I understand the hesitation — an HIE diagnosis can immediately raise questions about prognosis and causation, and that's hard for everyone. But there is still uncertainty for the parents without the naming. It's just that they don't even have the words to ask about it.

Betsy Pilon (01:06:02)And I've dug into this with Ben and Daphna and others. I think a lot of clinicians get into medicine to heal, and HIE is uncomfortable because cooling is the best we've got — the brain can't be fully "fixed." That's uncomfortable for everyone. And HIE conversations inevitably raise questions about what happened and why. The NICU team is often the cleanup crew — they weren't there for the delivery, and even when they were, there are so many factors. There's just a lot of discomfort around HIE, and that's the stigma we continue to work through.

There are wonderful tools and researchers working on family-centered, trauma-informed communication around diagnosis and prognosis. Dr. Monica Lemon is doing excellent work in that space. The Family-Centered Care Task Force is doing an excellent job. These are also great quality improvement opportunities for NICUs — improving communication around diagnosis, improving support, improving holding during cooling. HIE doesn't always get its own QI initiative focus, but there are plenty of opportunities for teams to think about it through that lens.

Leah MG Jayanetti (01:07:45)Tell me about Max today.

Betsy Pilon (01:07:47)Max is finishing up eighth grade and going into high school next year, which blows my mind. He is living his best life every day — and that is something I've been saying about him for all 14 years, and it's what we want as parents.

Does Max have impacts from HIE? Absolutely. Does he live his best life every day? Absolutely. He's going to be in the pit in marching band next year in the percussion section. He takes bass guitar lessons. He's getting into golf. He has friends, they send each other ridiculous memes — the whole thing. He is doing wonderfully.

We went on and had another child after Max — his 10-year-old sister. They love each other to pieces and drive each other absolutely nuts, as they should. There have been surprises along the way, both heartbreaking and wonderful. I think that's parenting in general. We are nervous but excited for him to take on this next chapter in high school.

Leah MG Jayanetti (01:09:05)Many families after a NICU experience want to give their journey a purpose, give it legs. We often gently slow those families down when they say it near discharge — it sometimes comes on day one — and we support them through the process and bring them back in when they're ready.

But it takes something to live and work in this space every day as an experienced survivor. How do you care for yourself?

Betsy Pilon (01:09:57)I think it's really being conscious of what balance is and always trying to find it. Balancing work that is endless and rewarding and sometimes drives me crazy, managing a family and a child with some medical complexity, being a good partner to my husband — we talk about this as a family all the time. Balancing family time, couple time, individual time, the kids, all of it.

I intentionally downshift in the summer. A lot of clinicians take time off in the summer, so the organization can naturally downshift as well. I use that time to prioritize rest and family.

And I'm not afraid to own my schedule — to say this is too much, or to ask for tools when I need them. When I stepped into this role at the end of 2020, I was managing a lot: a new role, COVID, and the loss of my mom two years prior. I said, I need to work with a therapist for a bit. Life changes, the world being chaotic — it all adds up.

There's a lot of support available for mental health, and we have to make the time for it. The preventative maintenance of your mind and body needs to be scheduled. That's something we try to prioritize as a family and as a couple, and something we encourage our families, staff, and volunteers to do as well. There will always be more work. But you can't do it if you aren't taking care of yourself.

Leah MG Jayanetti (01:12:57)We need you. So we need to take care of you.

Betsy Pilon (01:13:05)And parents find that too — especially with medical complexity. They are drowning. Even after the NICU, the drowning can continue. You have to prioritize yourself. You're not selfish for it. Everyone deserves to be their best — for themselves and for the people they love.

Leah MG Jayanetti (01:13:30)Absolutely. Everyone — and especially involved parents — is being pulled in every direction. You can't fill from an empty cup.

Let's close with something we always do on Beyond the Beeps. We talk about the physical experience of the NICU — what you couldn't live without when you were there. What would you put in your backpack?

Betsy Pilon (01:14:10)One of the things that became really special to us was a blanket that my cousin made for Max. It was the softest blanket. It was comforting for the baby, but it was also a piece of comfort for us — a tangible connection to someone who loved us. That blanket was a key part of the comfort we had during our time in the NICU.

Leah MG Jayanetti (01:14:42)I love that. She came with you, in a way. And if you had any final words of wisdom for a family who is in the NICU right now, experiencing those first days of treatment or navigating life after HIE, what would you say?

Betsy Pilon (01:15:07)Hope for HIE and other organizations really try to fill the gap that families feel at discharge — that cliff. We have an exceptional social worker on our staff who worked in NICUs for several years. She understands discharge from both sides, and she's built a really meaningful safety net that continues for as long as families need us. Families come back at different points as their needs evolve.

But the biggest takeaway is simply this: every family deserves support for whatever they're going through. Don't take that choice away from them.

Leah MG Jayanetti (01:15:52)Absolutely. If it's not available or no one is talking about it in your unit — wherever you are — you can find it. Just type hie.support.

Betsy Pilon (01:16:06)Yes — hie.support. I tried to make it as easy as possible. I need HIE support — type it in. It's there.

Leah MG Jayanetti (01:16:13)Perfect, I love it. And what does hope mean to you?

Betsy Pilon (01:16:32)Hope means something different in every season and every experience. In this journey, a lot of families start with hope in an outcome. But hope is so much broader and more beautiful than that — you can find hope in every outcome, hope and joy in any journey. The hope is that we are all walking each other through this experience of life, and that things can and will be brighter through the ups and downs. We're in it together.

Leah MG Jayanetti (01:17:05)That is beautiful and profound. Thank you so much, Betsy. I could talk to you all day, but I will let you go for now, and I look forward to seeing you again soon.

And if you're listening to us now — maybe you're on your way in or out of the hospital, sitting by your baby's bedside, up in the middle of the night pumping or pacing and worrying, or maybe you've gone home with your baby and you're still navigating life after the NICU — Betsy and I want you to know that you are not alone. We look forward to sitting with you again sometime soon. Take gentle care.