[INTRO]

Drezden: This is The One Percent Heart, a 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. And 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.

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[CONVERSATION]

Connor: Hey, thanks Drezden. I'm super happy for the opportunity to be on the One Percent 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.

Drezden: 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, and your wife and son?

Connor: Definitely. So, Connor Hill from Maryland. I live there with my wife Kali, two German shepherds, one is 11, one is four. We have one son, his name's 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. And then outside of work, you know, love all things fitness, health, and workout related. And love being outside. So, now that the cold weather's coming around, you know, starting to bundle up, especially Dawson, getting him his new winter clothes so he's nice and warm outside too.

Drezden: And 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. But how is Dawson doing today? You mentioned HLHS, but you know, if you're bundling him up and taking him out in the cold, he has to be doing pretty okay, right?

Connor: Yeah. Yeah, he's actually doing great. He is 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 it's every day we wake up and we see another big leap in some way, shape, or form, another new sound, word, new movement. And he's loving to meet new people, go out 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.

Drezden: 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, and 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.

Connor: Sure. So, Stronger Hearts Foundation was founded by my wife Kali and I back in April when Dawson was at CHOP. And for those who don't know, CHOP is the Children's Hospital of Philadelphia. We were back at CHOP for his second surgery, the Glenn procedure, and we decided that we want to do something to give back to the families in a way that other foundations did for us. And so 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. And 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. And we fund short-term housing for emergency admissions to cardiac ICUs. We fund care packages for things that contain things such as food and ride share gift cards, coffee gift cards, Amazon gift cards, things like that that just help take financial strain off of families while they're inpatient. And we also do some other ad hoc things like providing meals or coffees on the holidays. And 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 Drezden said, we have hit the ground sprinting this year. So, something we're very passionate about and looking forward to watching grow.

Drezden: 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?

Connor: 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, 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 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 help that we're trying to address.

Drezden: And it's safe to say that this was driven primarily by what you guys went through. Can you speak a little bit about that experience and what it was like?

Connor: Certainly. So his first procedure, 3 days after he was born, the Norwood, that 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 when some of our emergency life flights to CHOP came, 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. 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 is a lifelong thing. But there are families that didn't even have a card to put a hotel on. And I watched the social workers 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. And the care packages too. You know, we received a lot of care packages from other foundations. We received financial assistance from other foundations. And you know, receiving those things, it was a game changer for us. The day just got easier. We don'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.

Drezden: "Game changer" is a pretty big description there. But it sounds like that it was coming in with everything you needed and the things you don't think about needing. And you 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.

Connor: 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. And 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 spend so much time in the ICU, you're like, "I haven't eaten in 8 hours. I haven't slept in 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 at 100% of whatever you have at the time. You have to be able to show up for your child because 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.

Drezden: 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, and a lot of parents that are fresh out of the experience. 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 emergency care. Can you discuss that path? Because you can only prepare so much and then the unexpected always does happen.

Connor: Yeah. Yeah. I can definitely get into that. So we were definitely prepared for his first procedure, the Norwood, which is the first of a three-stage palliation of care for babies born with HLHS. Those three procedures are the Norwood, the Glenn, 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 Glenn 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, the Fontan, the third procedure, reroutes the lower body's blood flow through the IVC to again lessen the strain on that right ventricle. So the Norwood, we found out prenatally, we received the diagnosis during our 20-week anatomy scan, and that was just, it was chaotic to say the least. But we're very thankful to his cardiologist that is actually 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. And his confidence alone is the reason that we decided to take on this three-stage surgery. Now, between the Norwood and the Glenn procedures, the Norwood's typically done between 1 to 5 days old, the Glenn is done somewhere in the ballpark of four to 6 months, I'm sure that could be different for many children, but that's generally the window they talk about. And 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, 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. 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." In that instance of a life flight, it brought a level of, if we weren't already very serious about it, we were serious then. 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 starts to lose his ability to breathe. We were like, "Oh, this is very real and very likely." The second life flight was what I describe as probably the scariest day of our lives. And 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 Glenn, which was amazing. And all of a sudden, we didn't hear breath. And we looked at him and I said, "Kali, he's turning blue." And our first thought was, "Okay, we need to get him in the car. We need to take him to Hopkins. That's our closest ped's cardiology center." She ran upstairs to get something, to come right back down. And I said, "No, Kali, we can't make it to Hopkins. We got to go to our local hospital, which is luckily 3 minutes down the road." And 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 Kali's eyes. I have fear in my eyes right now and I know how the story ends.

Drezden: Yeah.

Connor: 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, and I tell a lot of people this story, because 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. CHOP's telling them to push heparin through an IV in his arm. They're telling them 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 his vitals were stable on the screen. And I think needless to say, he had another life flight up to CHOP. What it actually was was a rotavirus, a GI bug. He lost too much fluids, went into acidosis, and then his little body couldn't keep up with it. But those, to give you the longest answer for that question, that's kind of how our experience with those two life flights went.

Drezden: 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 Kali and the relief afterwards, especially when he's like, "Okay, you guys did it. I'm going to take a nap now."

Connor: Yeah. Well, he was only in the hospital for four days after that. He went up, they gave him an echo. They checked everything. They're very fast. Decided it was an issue, it wasn't an issue with his heart. They're like, "He just needs to get over this bug. We'll give him fluids." 4 days later, we're home.

Drezden: It, 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? What?" 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.

Connor: Yeah, it was. We had a lot of training coming out of the Norwood while he was recovering from that, because the Norwood is 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. So 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, so on and so forth. So we were always very, we watched over him all the time. We were always very aware of what was going on. But over time he started to fool us a little bit because he's doing well. He hasn't shown any problems. He's showing steady growth mentally, physically, all of 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 Glenn 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.

Drezden: 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.

Connor: Yeah. Yeah. It definitely put some strain on us. I can't say it didn't. Kali and I have always been a great team when it comes to anything. We talk through everything. We work together. So, we recognized that the power of the two of us is much stronger than us getting in an argument and one person having to handle something. And 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 6 months with the 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 overworked or burnt out, 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?" We do the tag-in thing: "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. You have to talk. You have to know how each other are feeling. And you can't just assume, I can't just assume that Kali's doing okay because maybe she's not. I have to, even if she seems like she's okay, be like, "Hey, you doing all right? Do you mind if I go do XYZ or is this a bad time?" I think it's forced us to grow and mature in our relationship. Definitely.

Drezden: 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 a couple sitting here listening to it can go and use right now?

Connor: Yeah. A couple different things. Recognizing the fact that when you're raising a child with CHD, you alone will burn out. And recognizing that if you or your spouse have 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 burnt 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,

Drezden: Doesn't sound dumb.

Connor: Just being direct. Like, you know, I often go to Kali 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, Kali 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 him 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 let her know that she did great. Because if she went 5 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.

Drezden: It's almost like, 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 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 the effort.

Connor: Yeah. Yeah. It's all part of that relationship building, too.

Drezden: You say "relationship building" and I'm like, "Okay, you're going back to consulting speak." I can't get off,

Connor: I had to get one jab in there. You know how to, here, let me circle back to relationship.

Drezden: No, but you know, you will be, 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 always going to be good enough just to show up. 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.

Connor: All right.

Drezden: We will talk to you guys all shortly here.

Connor: Sounds good.