This is the 1% Heart Podcast about the millions of people living with congenital heart defects. In today's episode, we're going to be talking to Connor Hill of Stronger Hearts Foundation. Now, before we get started, here is my normal quick disclaimer: nothing said here constitutes medical advice. These are our own experiences, stories, and lives. I do want to include a trigger warning as we will discuss medical-related incidents and trauma. With that fun out of the way, Connor, thank you so much for joining me here today. Hey, thanks, Tresen. I'm super happy for the opportunity to be on the 1% Heart podcast. I was very excited about hearing about it when I first met you back in September, and I'm glad that we finally were able to get connected and do this. As am I, as am I. Now, you're doing a lot of very cool things, but before I basically quiz you in real time about those, do you want to start just by introducing yourself and your foundation, your wife, and son? Definitely. So, I'm Connor Hill from Maryland. I live there with my wife, Callie, and two German Shepherds, one is 11, one is 4. We have one son, his name is Dawson. He was born with hypoplastic left heart syndrome at the Children's Hospital of Philadelphia. Outside of the CHD space, my background is actually in computer science. I'm a consultant, and I have been in the Army National Guard for a little over 10 years now, currently serving as a Captain there. Outside of work, I love all things fitness, health, and workout related, and I love being outside. So now that the cold weather's coming around, you know, we're starting to bundle up, especially Dawson, getting him his new winter clothes so he's nice and warm outside. That's a perfect tie-in with what I wanted to ask you before we get into the background of what you guys have gone through. How is Dawson doing today? You mentioned HLHS, but if you're bundling him up and taking him out in the cold, he has to be doing pretty okay, right? Yeah, he's actually doing great. He's making leaps both mentally and physically. He's learning to eat, he's learning to drink. He was a little behind developmentally from a physical standpoint, and he's starting to learn how to roll around and crawl now. So I feel like every day we wake up and we see another big leap in some way, shape, or form—another new sound, word, movement. He's loving to meet new people, go and explore new things. We just took him Christmas tree shopping the other day, so he's getting out there, and he's definitely enjoying life. That is wonderful to hear. And you know, we mentioned at a high level the Stronger Hearts Foundation, but for those that don't know, and I'm going to be brief here because I want you to talk to it, Connor and his wife made a foundation after receiving their son's diagnosis. It has, I can say, hit the ground running, and that's not even doing it justice. But let's start with what the foundation is, and then we can go into what led you there. Sure. So, Stronger Hearts Foundation was founded by my wife, Callie, and I back in April when Dawson was at CHOP. For those who don't know, CHOP is the Children's Hospital of Philadelphia. We were back at CHOP for his second surgery, the Glen procedure, and we decided that we wanted to do something to give back to the families in a way that other foundations did for us. While we spent so much time inpatient watching him recover, we did have a little time on our hands to kind of get this spun up. What we do at a high level is we raise money to help fund things for families who are inpatient at the Children's Hospital of Philadelphia, Johns Hopkins Pediatric Cardiology Center, and a few other hospitals that we'll be moving to in the near future. We fund short-term housing for emergency admissions to cardiac ICUs. We fund care packages that contain things such as food and rideshare gift cards, coffee gift cards, Amazon gift cards—things like that—that just help take financial strain off of families while they're inpatient. We also do some other ad hoc things like providing meals or coffees on the holidays. We want to expand out into the research space, but it was just this past April that we started up, so we're still very new. But as Dresden said, we have hit the ground sprinting this year, so it's something we're very passionate about and looking forward to watching. So, the mission, it sounds like, is parents have their kid; they're having these medical emergencies, and they're not thinking about where they're going to stay that night or what they're going to eat. And you guys are coming in saying, "Here's a care package, here's a hotel reservation or Airbnb. Here is something you don't have to think about right now because you are going through so much." Am I bastardizing it in any way? No, that's definitely accurate. We see that through multiple emergency admissions that we've had and scheduled surgeries. Oftentimes, the last thing you're thinking about when you're life-flighted to the hospital, when you watch your kid go back for open heart surgery, the last thing you're thinking about is, "Where am I going to stay tonight?" Especially when that isn't reserved in advance. And even if it is reserved in advance at a place like, you know, there are many places, one that comes to mind is Ronald McDonald House. They're very full. They help a lot of people. Oftentimes you can't get in there the day that you arrive at the hospital. So after hours in an ICU with your child, you realize, "I don't have anywhere to sleep tonight." And then oftentimes that leads to a hotel. And hotels are expensive, especially in those big cities. So that's kind of a gap that we're trying to fill and hope or help that we're trying to address. And it's safe to say this was driven primarily by what you guys went through. Can you speak a little bit about that experience and what it was like? Certainly. So, his first procedure, three days after he was born, the Norwood, was scheduled well in advance. We knew that was coming. We had lined up housing, backup housing. We knew what we were doing. Later in the spring, during some of our emergency life flights to CHOP, we arrived there, and our hospital housing was full, Ronald McDonald housing was full. We didn't want to drive 40 minutes away to our nearest family member's house because we live two hours from the Children's Hospital now. We're fortunate enough that we could grab a hotel room and worry about it later, but we've met many families who go through a lot of financial strain. Not to say that we didn't, because we certainly did. CHD is not cheap. It is a very expensive thing, and it's a lifelong thing. But there are families that didn't even have a card to put a hotel on, and I watched the social worker struggle to try to arrange something for them. I watched the family struggle to try to figure out what they're going to do because you can't sleep in the ICU. So that's the gap that we said, "Hey, there is a need for this, and we want to try to fill that the best we can." The care packages too. We received a lot of care packages from other foundations. We received financial assistance from other foundations, and receiving those things, it was a game changer for us. The day just got easier. We didn't have to worry about everything outside of the hospital. The only thing we had to focus on was what was going on with our child. Game changer is a pretty big description there, but it sounds like it was coming in with everything you needed, and the things you don't think about needing. I know I haven't been in this experience exactly, but it sounds like when you're very stressed about what's going on with your child, understandably so, the last thing you're thinking about might be a toothbrush or your morning coffee. Yeah, and I mean, I can give you another good example. This past Thanksgiving, we sent up, I think it was 50 Starbucks gift cards up to CHOP just for families to grab a coffee Thanksgiving morning. The feedback we got from the social work team was, "This is their method to get the families out of the hospital to take a second to breathe." Because you spent so much time in the ICU, you're like, "I haven't eaten in eight hours. I haven't slept in, you know, however much time it's been." And even just the little tiny things like paying for a cup of coffee allows parents or guardians to step out, recharge, because you have to be able to show up 100% of whatever you have at the time. You have to be able to show up for your child because you know, they're fighting their own fight. And all of these little things, whether it's meals, coffee, taking off financial strain that is magnified when you're in an ICU, it just becomes so much more important. I can only imagine. That really brings me to the next part. We've spoken a lot about what Stronger Hearts does, but I haven't had the chance to talk to a lot of parents, a lot of parents that are fresh out of the experience. Now, if you're comfortable, could you just share? I mean, you knew what was going on prenatal, you had the surgery scheduled, but then you mentioned two life flights and emergent care. Can you discuss that path, because you can only prepare so much, and then the unexpected always does happen. Yeah, I can definitely get into that. So, we definitely were prepared for his first procedure, the Norwood, which is the first of a three-stage palliative care for babies born with HLHS. Those three procedures are the Norwood, the Glen, and the Fontan. The Norwood is really rebuilding, at a very high level, rebuilding the plumbing, if you will, in a child's heart to allow their right ventricle to take over full body circulation. The Glen is the second procedure that reroutes their upper body's blood flow directly to the lungs, taking a little bit more strain off of that right ventricle that's already working overtime because the heart's really functioning, half of the heart's functioning to do a whole heart's job. And then finally, that Fontan, the third procedure, reroutes the lower body's blood flow through the IBC to again lessen the strain on that right ventricle. The Norwood was, we found out prenatally. We received the diagnosis during our twenty-week anatomy scan, and that was just chaotic to say the least, but we're very thankful to his cardiologist that actually is at Johns Hopkins. He so happened to be in the area at the time, and he was able to meet with us and give us a diagnosis that day. His confidence alone is the reason that we decided to take on this three-stage surgery. Now, between the Norwood and the Glen procedures, the Norwood's typically done between one to five days old. The Glen is done somewhere in the ballpark of four to six months. I'm sure that could be different for many children, but that's generally the one that we talked about. During those two procedures is what they call the interstage, and that is the most, quote unquote, dangerous time for a single ventricle baby. And oftentimes large children's centers will have single ventricle monitoring programs. That's what CHOP's is called. Many big centers have something similar where we check in daily to weekly with multiple different people from the hospital to make sure that Dawson was doing okay: weight, blood saturations, how's he doing feeding, how's all that kind of stuff. There were two instances in the interstage, actually very back-to-back, where Dawson was life-flighted from our local ER here in Maryland to CHOP. The first one was he was having trouble breathing, but he was still breathing. He was having subcostal, intercostal retractions, tracheal tugging. All that means is that his airway was very restricted. He was working very hard to breathe. So we were actually on, this was the first time we've seen that before, we were on a video call with one of his nurse practitioners, and she said, "Connor, Callie, you need to take him to the ER now." So we took him there. To make a long story short, they hooked him up to oxygen, got a mask on, and CHOP said, "You know what, we need him up here, stabilize him. We're going to life-flight him up." And that instance of a life flight, it brought a level of, if we weren't already very serious about it, we were serious then. We were like, it was kind of a gut check. You know, he seemed to be doing really well, as well as he could be, and out of the blue he loses his, or he starts to lose his ability to breathe. We were like, "Oh, this is very real." And very likely, the second life flight was what Callie and I describe as probably the scariest day of our lives. That day, Dawson was practicing his feeding with spoon dips of puree. You know, he was making a little bit of progress there before the Glen, which was amazing. And all of a sudden, we didn't hear breath, and we looked at him, and I said, "Callie, he's turning blue." Our first thought was, "Okay, we need to get him in the car. We need to take him to Hopkins. That's our closest pediatric cardiology center." She ran upstairs to get something to come right back down, and I said, "No, Callie, we can't make it to Hopkins. We got to go to our local hospital," which is luckily three minutes down the road. We didn't call 911. We threw him in the car. She got into the back with him, and I drove as fast and as aggressively as I could. Judge me or don't, but I was getting him to the hospital. It was to the point where she was almost performing CPR in the backseat of the car. We rushed him into the hospital. He got on the table, and we watched his blood saturations fall from 80 to 70 to 60 to 50. I saw fear in the nurse's eyes. I saw fear in the doctor's eyes. I saw fear in Callie's eyes. I see it in my eyes right now, and I know how the story ends. Yeah, and to be honest, there was a time that I thought we were going to lose him that day. But I tell you this story because, and I tell a lot of people this story because, you know, they did their, they got on the phone with CHOP's cardiac ICU. They were doing things in that local ER room that they never do. They don't know how to do or maybe they haven't done in years. You know, CHOP's telling them to push Heparin through an IV in his arm; they're telling him to do this and that just to save his life. Finally, he was stabilized. He fell asleep. I can imagine that's a very exhausting thing, but he fell asleep, but his vitals were stable on the screen. I think, needless to say, he had another life flight up to CHOP. What it actually was, was a Rotavirus AGI bug that he lost too much fluids, went into acidosis, and then his body, his little body couldn't keep up with it. So those, to give you the longest answer for that question, that's kind of how our experience with those two life flights. Yeah, I was going to pause you after the first half to talk more about the gut check, but the second part there, I can only imagine. I can't even imagine how it must have felt for you and for Callie, and the relief afterwards, especially when he's like, "Okay, you guys did it. I'm going to take a nap now." Yeah, well, he was only in the hospital for four days. After that, he went up. They gave him an echo. You know, they checked everything. They're very. Fat yeah. Decided it was an issue, it wasn't an issue with his heart. They're like, "You just need to get over this bug." We'll give him fluids. Four days later, we're home. It was, I don't know what to say to that. I mean, it makes sense logically, but there's something in the back of my head going, "What?" Yeah. Let's talk about that for a second because when you come back, it has to be, I mean, it was already probably difficult, but it has to be really hard to try to live your life normally and to treat him like a normal kid after that. Yeah, it was. So we were, we had a lot of training coming out of the Norwood while he was recovering from that because the Norwood is the most complex, one of the most complex procedures that any baby gets for any CHD condition. So the recovery is a long time, especially, and they're newborns too. During that time, we received a lot of training on how to take care of an interstage baby and how to take care of a baby who might be going into heart failure at any given time, and so on and so forth. So we were always very, we watched over all the time. We're always very aware of what was going on. But over time, he started to fool us a little bit because, you know, he's doing well. He hasn't shown any problems. He's showing steady growth mentally, physically, all that kind of stuff. But when we got home from that second admission, really our third admission, including Norwood after that second life flight, every breath we were aware of. He has some tracheal compression from some of the arteries that were moved around during some of the surgeries. So he struggles with a tight airway anyways. Oftentimes, we could hear him during the interstage all the time. When he's sleeping, you can hear him. We would be asleep at night, and subconsciously he would go silent, just because he was breathing fine, not because he stopped breathing. We would both jump out of bed. We would lose sleep. We were hyper-aware all the time. And it took until we got home from the Glen that we were able to kind of relax a little bit, and I say just a little bit, but we weren't scared that something was going to happen. That must have been a strain on the relationship as well. I mean, you guys went from husband and wife with a new baby to, I mean, you're in the National Guard. This is probably the worst way to say it, but almost like you're in a foxhole together. Yeah, it definitely put some strain on us. I can't say it didn't. Callie and I have always been a great team when it comes to anything. We talked through everything. We work together. We recognize that the power of the two of us is much stronger than us getting in an argument and one person having to handle something. Prior to his diagnosis, we had this idea that she would take her maternity leave from work, I would take my parental leave from work after her. We'd have six months with a new baby. You know, we wanted to enjoy the pregnancy. We are both very healthy and active people. We took care of ourselves as much as possible. And I think when we received that diagnosis, it hit us both very hard. We have both struggled more so towards the beginning, but it's still ongoing, with mental health, as a lot of people do during this, because this is a lot of trauma that many people don't face. But what we quickly realized was that being intentional and deliberate with each other, noticing when one another are, you know, overworked or burnt out, we're stressed by something else. We make it, we're very intentional about talking to each other about that. "How can I help? Do you need me to take over? Do we do the tag in?" Things like, "Hey, I need you to tag in. I have to take a break." So it's, I think it comes down to just being, I've said it three times now, intentional with each other. Like you have to talk. You have to know how each other are feeling. And you can't just assume that, you know, I can't just assume that Callie's doing okay because maybe she's not. I have to, even if she seems like she's okay, like, "Hey, you doing all right? Do you mind if I go do XYZ or is this a bad time?" I think it forced us to grow and mature in our relationship, definitely. Towards the end there, you're using actual examples of questions you ask each other, and I want to push on that again because I think that's going to be a very good takeaway for parents listening to this. Now, you say, "Be intentional with each other." You say, "Tag in." Can you give us some examples, some questions, some ways you think about things, that you know a couple sitting here listening to it can go and use right now? Yeah, so a couple different things. Recognizing the fact that when you're raising a child with CHD, you alone, you will burn out. And recognizing that if you or your spouse has been single-handedly taking care of your child for a few hours, you don't have to see them burnt out. You should go and say, "Hey, I'll take over for a little while. I'll tag in. I want to make sure you don't get burned out because you have to keep each other above that threshold." I think once one person gets burnt out, the other parent has to step in, maybe for a longer time than they can handle. And then that adds stress on them, and it spirals. And now you're both just completely exhausted. And that's when it gets really hard. But I think that checking in on each other, it doesn't have to be anything novel. "Hey, how are you doing? Are you okay at the end of the day? How was your day today?" "Hey, he was really angry this morning. Like, how did you feel about it?" It might sound dumb to talk about that, but like... Doesn't sound dumb. Just being direct, like, you know, I often go to Callie and tell her that she did great today because I can see. There are many days I'll take a step back. Before the diagnosis and before Dawson was born, Callie worked down in Northern Virginia four days a week. And I work from home. I'm in consulting, and I work from home, thankfully. And she ended up changing up her career a little bit to where she now works here in town because it was just too hard. I would get burnt out during the day. I couldn't work during the day. And so now that she's home more often during the day when I'm working, especially days that are packed with meetings, she might have them for four or five hours. And I need to make sure myself that I legitimately recognize the things that she does during the day and to let her know that she did great. Because if she went five hours and Dawson's having a bad day, he's teething right now. He's going to yell at you no matter what you do. You know, that can be really exhausting for her. It can make her feel like she's doing a bad job. And I say that to say that you need to make sure your spouse or significant other, whoever it is, knows that they are doing a good job, even on the days where it doesn't seem like it. I think that's very important to do too. It's almost like it's not even, I mean, they might even know they're doing a great job, but it's the fact that you see. You're acknowledging that you're telling her that you see the work that she's doing, and you're acknowledging the work that she's doing. So even though she, if she, even though she knows she's doing a good job, and she probably does, she may not, it's taking it a step further and letting your spouse know that you see it and you're aware of it, of the effort. Yeah, it's all part of that relationship building too. You say relationship building, and I'm like, "Okay, you're going back to consulting speech." I can't get... I had to get one jab in there. You know, I have here, let me circle back to relationship with me. So, but you know, you will, one of two things will happen to a relationship in CHD, I believe, and you will either break and shatter or you will be forced to grow together. And I think part of that growth together is the acknowledgement that I recognize what you're doing, you're doing a good job. Even if you wake up having a bad day, you're giving 100% of what you have. And that's, that's always going to be good enough. Beautifully said, beautifully said. And this is where I'm going to transition to the second part where we're going to discuss, you know, we've talked about your experience and at a high level what the foundation does. But next episode, we're going to really dig into the foundation, the day-to-day, and figure out how you guys decide to find those synergies for, you know, value-added. I'll quit throwing the jabs in now. All right, I will. We will talk to you guys all shortly. Sounds good.