Half a Heart, Whole Stories: Steven Hutchison, Jessica Cowin, and More

Steven Hutchison has defied expectations his entire life. Born with hypoplastic left heart syndrome (HLHS) nearly four decades ago, he is now a 38-year-old husband, father of three, and full-time worker who approaches each day with remarkable perspective and gratitude.

Diagnosed at two weeks old, Steven underwent staged surgeries including the Glenn and Fontan procedures, and now lives with Fontan-associated liver disease, one of the long-term complications that requires careful monitoring. But his story is about more than medical milestones. Steven shares how living on the same street as his parents and brother has created a strong support system, how he explains his condition to his children with honesty and hope, and how his faith and outlook shape the way he moves through life.

From two 12-hour ablations to participating in groundbreaking research with HeartWorks, Steven’s resilience continues to inspire. His message to parents of newly diagnosed HLHS babies is simple but powerful: there is so much more possibility today than when he was born.

Steven’s story is a reminder that people born with congenital heart disease can build meaningful lives filled with purpose, family, and joy—not despite their condition, but alongside it.

Links to events mentioned in this episode:

Link to register for FON-ONE: https://web.cvent.com/event/80f0addb-25c0-4d87-9cb1-99931b9062db/summary

CNOC Scientific Session: https://cardiacneuro.org/scientific-sessions/

HeartWorks: https://heartworksinc.org/

Chapters

• 0:00 Living with HLHS as an Adult
• 5:31 Podcast Movement Retreat Reflections
• 9:47 News: Jessica Cohen's Award Recognition
• 12:00 Steven's Heart Journey & Background
• 19:01 Growing Up with Half a Heart
• 26:38 Family Life with a Heart Condition
• 37:12 Explaining Heart Disease to Children
• 41:13 Emotional Coping and Community Support
• 45:08 Message of Hope for HLHS Families

Transcript

Steven Hutchison: [00:00:00] I've never looked at my heart condition, though I don't think I would wish it upon other people, I don't look at it as something that I've regretted or hated.

Anna Jaworski: Welcome to Heart to Heart with Anna. I'm Anna Jaworski, heart mom, to Hope my single ventricle daughter who was born in 1994. Today's program is especially compelling. Our guest is a heart warrior who is also a husband, father of three, and a full-time worker. How does an adult with hypoplastic left heart syndrome explain his condition to his children?

How has his health influenced his life as a child, a man and a parent? Stay tuned to hear Steven Hutchison share his story of resilience, faith and family.

This year marks 12 years since I launched Heart to Heart with [00:01:00] Anna. For nine of those years. I've attended Podcast Movement, my go-to conference for continuing education. But this year was extra special because for the very first time, six of us from Hearts Unite the Globe attended together in person. Michael Liben of Bereaved But Still Me and Sheri Turner returned for their second Podcast Movement. We also welcomed three first timers, Ayrton Beatty and Nicholle Bilodeau, who both work on the CHC podcast, Congenital Heart Conversations. And Spencer Keaton, who like Sheri, helps with Heart to Heart with Anna. We also had tremendous support from our board leadership.

My husband Frank, who serves as HUG board president, made sure we had everything we needed. He was our chauffeur, our chef, and the one who stepped in whenever emergencies popped up. Nancy Miller, our treasurer, joined us for part of the week as well. She not only helped with driving, but she also surprised the [00:02:00] volunteers with special souvenirs of their trip to Texas.

And during the first day of our retreat, she took careful notes while the rest of us shared what we learned, capturing the richness of the conversation so we could carry those insights forward. One of the most memorable moments of the week was Friday evening when Michael prepared and served us a traditional Shabbat dinner.

He led us in the prayers and welcomed us into his faith practice. Even though he was the only Jewish member of our group, the experience elevated our time together in such a special way. After Podcast Movement, we held a HUG retreat. It wasn't our first. Before COVID, I hosted retreats in Jerusalem, Israel, Temple, Texas, and Tucson, Arizona.

But this was our first one in years and it felt long overdue. The retreat gave us time to reflect on what we'd learned at the conference, share our biggest takeaways, and decide what we'd like to bring into [00:03:00] our podcast moving forward. We also enjoyed team building activities like podcast speed dating, and a gratitude web.

We closed with an award ceremony. It was a lot to pack in a short time together, but it was meaningful and energizing. To share this time together, learning, laughing, eating, and dreaming about the future was unforgettable. I want to emphasize something important. Many of these people give not only their time and talents, but also their treasure. Their generosity fuels everything we do.

If you'd like to join them and be part of the circle of storytellers, consider becoming a patron or a volunteer today.

Now for the news. Seeing our team give of their time, talent, and treasure reminded me how powerful generosity can be. Sometimes it shows up in cooking, meals, driving people where they need to go, or [00:04:00] even sharing a sacred tradition.

Other times it shows up through advocacy, research, and storytelling that ripple outward to help countless families. That's why I'm especially proud to share today's news about one of our own. Former guest and contributor to the Heart of a Heart Warrior, Jessica Cowin has received the Cardiac Neurodevelopmental Advocacy and Engagement Award for 2025.

Jess has dedicated her career to raising awareness, furthering research, and supporting CHD families. She has served on multiple committees with the Cardiac Neurodevelopmental Outcome Collaborative, and currently works at Lurie Children's Hospital of Chicago. Her passion for storytelling and advocacy reflects the very heart of this community transforming personal experience into a platform for hope and change.

This award is one of the highest honors in the field, [00:05:00] and Jessica will be recognized alongside Dr. Frank Casey this September during the CNOC Scientific sessions. Please join me in celebrating her incredible achievement. Next up our interview with our amazing heart warrior Steven Hutchinson.

HUG Disclaimer: This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. The opinions expressed in the podcast are not those of Hearts Unite the Globe, but of the Hosts and Guests and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

Baby Hearts Press: Embark on a heartwarming odyssey with Baby Hearts Press—your gateway to uplifting stories for the CHD community. Introducing “The Heart of a Heart Warrior” book series—inspiring those born with heart defects and their loved ones. Discover “The Heart of a Mother,” “The Heart of a Father,” and “My Brother Needs an Operation,” books celebrating strength, love, and familial support. Visit www.babyheartspress.com and be part of our loving community uplifting hearts. One story at a time.

The Interview

Anna Jaworski: Today's guest is Steven Hutchinson. Steven is a 37-year-old husband, father of three, and a full-time worker living with Hypoplastic Left Heart Syndrome or HLHS. Diagnosed with HLHS at just two weeks old, Steven underwent emergency surgery followed by a Glenn procedure at age three and the Fontan procedure at age five. Since then, he has faced numerous medical events including multiple catheterizations, echocardiograms, and tests along with two 12-hour ablations in 2012. Despite his ongoing health challenges, Steven strives to maintain a balance between his faith, family, life, and career. Living with half a heart has shaped his resilience and he continues to navigate life with determination and hope. Welcome to Heart to Heart with Anna, Steven.

Steven Hutchison: Thank you so [00:07:00] much. It's great to be here.

Anna Jaworski: It's great to have you here and to learn more about your life growing up with HLHS, especially with you being 37. I'm always tickled pink when I get to meet somebody who's older than my daughter because you guys are the pioneers. You guys have paved the path for our current HLHS Heart Warriors.

Steven Hutchison: I am 38 now. I will say that. 

Anna Jaworski: Oh my gosh, that's right. Happy birthday. When's your birthday?

Steven Hutchison: May 7th is my birthday. 

Anna Jaworski: Oh, okay. Yes. And I learned about you last year at a conference where I saw you speaking, so it has been a little while since you sent me your form. I'm a July birthday baby, so yeah, we're both a year older. 

Steven Hutchison: Yes. I was in St. Louis last year, speaking at the adult congenital heart day and the other events surrounding that event in St. Louis.

Anna Jaworski: I know. I hope to go this year. Will you be going this year? It's not in St. Louis this year. I [00:08:00] think it's in Indianapolis. 

Steven Hutchison: It's in Indianapolis. I don't know if I'm gonna make it yet. 

Anna Jaworski: I wanna go in person if I can go... 

Steven Hutchison: it's such a better experience, I think, to be there in person, 

Anna Jaworski: if we do, we have to get our picture made. 

Steven Hutchison: Yes, absolutely. 

Anna Jaworski: Okay. That would be awesome.

So let's start by talking about how you did growing up with HLHS and how that shaped your life as a child.

Steven Hutchison: Those early days, it was obviously before social media and before you really even realized, how widely spread congenital heart disease is.

I think at that time you kind of felt like you were the only person...

Anna Jaworski: yeah

Steven Hutchison: ... in your circle, in your family. If you're the only one with a heart condition, you kind of feel like you're that only person that really gets it and... 

Anna Jaworski: mm-hmm.

Steven Hutchison: ...to grow up with that... obviously my family was very supportive. My parents have always been great. My brother is always a great support, but you just felt like, I'm the only one that really gets [00:09:00] it. But I guess I grew up and then introduced the internet and social media into the picture.

You realize, there are more people out there with not just congenital heart disease, but HLHS specifically. And I think that's really helped to be introduced into that network of people and peers, . To have that, but, growing up, everything otherwise was I'd say normal.

My doctors always encouraged my parents to let me live normally. I played baseball. I played with my friends. I rode bikes to the limits that I could do it. I would preach to the younger generation do what you feel like you can do, but understand that you may not be able to do everything and understand that your body's gonna have that limitation. , 

Anna Jaworski: As do we all Steven.

Steven Hutchison: Oh, sure, sure. Absolutely. 

Anna Jaworski: But I think learning [00:10:00] to listen to your body and pay attention to the signals your body is giving you, because those signals could have stronger ramifications for people who have a chronic condition like you I was wondering, do you have brothers or sisters?

Steven Hutchison: I have one older brother. Yeah. 

Anna Jaworski: Did he treat you just like any older brother would treat a younger brother? 

Steven Hutchison: Absolutely. Yeah.

Anna Jaworski: Yeah. Joey is my older child and I called him the Normalizer because I wasn't allowed to treat my HLHS child with kid gloves because Joey was there to set the record straight. 

Steven Hutchison: Yeah, yeah. There was plenty of times when we had those, I guess brotherly, I don't know if you'd say fights, but just, the picking at one another, obviously.

Anna Jaworski: Sure. 

Steven Hutchison: But he was a true support so it's a great family atmosphere we have. I've had a lot of support. I'm very thankful for that. 

Anna Jaworski: Yeah. It's that yin and yang of brotherhood. 

Steven Hutchison: Yeah, absolutely.

Anna Jaworski: You gotta be able to wrestle on the floor, but nobody else is allowed to [00:11:00] pick on you. 

Steven Hutchison: That's right. 

Anna Jaworski: I love it. 

Steven Hutchison: That's right. 

Anna Jaworski: How has growing up with a single ventricle heart affected your daily life and your view on your long-term health? 

Steven Hutchison: Obviously growing up and into my, teenage and young adult years, it was a little bit easier than it is today.

It's definitely gotten more difficult as I've gotten older, there's been more things, that have, come from the effects from the Fontan. I'm 38, so that Fontan is now, I guess about 33 years old. 

Anna Jaworski: Hmm. 

Steven Hutchison: So, it's definitely taken its toll as well with the physical aspect of things with circulation and, varicose veins coming from that. And, the physical aspect has definitely kind of paid a toll, as I've gotten older. 

Anna Jaworski: You have a classic Fontan... 

Steven Hutchison: right. Yeah. 

Anna Jaworski: And you didn't even [00:12:00] have a fenestrated fontan, did you? 

Steven Hutchison: I'm trying to remember now actually if it's fenestrated. I wanna say maybe it was 

Anna Jaworski: okay. My daughters was also fenestrated, but I know that she was one of the early ones to have it done. 

Steven Hutchison: Yeah. 

Anna Jaworski: And she'll be 31 this year. So 

Steven Hutchison: Yeah. 

Anna Jaworski: Like I said, you guys were really the pioneers... 

Steven Hutchison: yeah. 

Anna Jaworski: ...paving a way for them to understand what that kind of physiology could do to a person. 

Steven Hutchison: Yeah. 

Anna Jaworski: So you said you have some conditions, you said the varicose veins. Is there concern about your liver? 

Steven Hutchison: There is, I do have FALD or Fontan Associated Liver Disease now. In fact, most recently we were in Kansas City, which is where I'm seen now for my adult congenital heart. I'm followed in Kansas City, Missouri. They are looking more at the liver a lot more now, over the last couple years. We did a echo of the abdomen, liver, and they thought [00:13:00] that they had seen a spot that they wanted to take a look at.

We did a CT and discovered that it was, not anything at all, but there was that concern, you know? Sure. That cancer was coming into the picture because that is something that is common with Fontan associated liver disease. So we are taking a much more serious look at the liver now going forward to safeguard against anything like that.

Anna Jaworski: It's amazing to me that you've had one Fontan and only one. My daughter had to have a Fontan revision. 

Steven Hutchison: Okay. 

Anna Jaworski: And you're doing great. I mean, you're working, you're a dad, it sounds like you're very physically active. It's pretty amazing, isn't it? 

Steven Hutchison: It really is. I give all the praise to God, honestly for everything because, I know without him, I wouldn't even be here for one, so it's tremendous what medical technology has been able [00:14:00] to do and develop and you know, I can't imagine the things that surgeons are able to go in there and do. I can't comprehend how they even do that. 

Anna Jaworski: I know. Especially when you're a baby and the... 

Steven Hutchison: yeah. 

Anna Jaworski: ...part is the size of a walnut. You think, wow. How do you do that? Amazing. It really is amazing. 

Steven Hutchison: It's incredible. But, I go back to God gave them the ability to do that and God gave... 

Anna Jaworski: absolutely 

Steven Hutchison: ...certain individuals the gift to be able to operate and have that knowledge. So, it all goes back to him. , I'm so thankful for, every day, but all the blessings that I've had for that.

Anna Jaworski: So as far as your long-term health, like I said, you and my daughter, you all are in that cohort of pioneers who are paving the way. There aren't a ton of people who are much older than you. 

Steven Hutchison: Mm-hmm. 

Anna Jaworski: What has your cardiologist said to you regarding your long-term health? 

Steven Hutchison: I don't think we've really discussed, as far [00:15:00] as age wise how rare it is to be the age I am. I think mainly we've just kind of opened the door of the topic of transplant over the last few years. Um, yeah, 

Anna Jaworski: That's what I was wondering about. 

Steven Hutchison: Yep. Yep. Okay. So it's in my mind almost just kind of the inevitable of not if, but when. They've acted like I'm not there yet. Maybe it's something to just start the conversation of, maybe a few years in the future, maybe longer, maybe shorter. It really just kind of depends on how I'm doing each six months or each year, when I go to see them. 

Anna Jaworski: Right. 

Steven Hutchison: And what's changed? How is the liver doing? How is the heart function? Going back to what we were saying with the fontan associated liver disease and the effects the Fontan has on the entire body at this point. It's not... 

Anna Jaworski: Exactly 

Steven Hutchison: ...just the heart now. It's what is it doing to everything [00:16:00] else? That really is just kind of dependent on what's next as far as how the body is reacting to that. 

Anna Jaworski: For people who maybe don't understand what the big deal is with the Fontan, the Fontan is a staged procedure that is used for people who have single ventricle hearts. And what it does is it changes the physiology of the heart so that the heart has one purpose and one purpose only, and that is to send the blood to the entire body.

That means that the heart does not actually have to worry about sending the blood to the lungs for oxygen like it normally does. Instead, they put a shunt into the heart and the blood travels to the lungs for oxygen passively, which to me is a miracle that they can even do that. But what that means is that the body produces more red blood cells so that it carries oxygen to the body appropriately.

[00:17:00] And that's why most people with Fontan hearts will have an oxygen saturation level that's a little bit lower than somebody who has a four-chamber-pumping heart, and all of those red blood cells have to be processed by the liver, so it really taxes the liver, especially year after year, decade after decade.

And they're just now starting to learn about what it means for a body to have that excessive amount of red blood cells that's necessary to keep the body going so that all the extremities have enough oxygen. It can cause this Fontan associated liver disease. They used to call it cirrhosis, but that has a negative connotation with alcoholism.

And of course that's not the case for our patients. It's because of the Fontan physiology, so they changed the name to Fontan associated liver disease. I'm wondering how does having a family, Steven, affect your life with [00:18:00] HLHS now that you're a daddy? 

Steven Hutchison: It kind of concerned me from the beginning, just how I was going to explain everything to them when they were first being born, when we were first having kids.

The first thing I remember going back to that time period was when they were old enough to really understand that I was getting up in the morning and taking medicine every day, and my oldest, her name is Zoe, she's 13 now. Mm-hmm. But when she was very little, I can remember sitting at the kitchen table and I had all my pills spread out and taking medicine and trying to explain to her what they were for and the fact that Daddy had a heart condition and I needed to take these things. And of course, the concern obviously came to her mind of, well, why don't I need to take those pills to make my heart strong? 

Anna Jaworski: Oh.

Steven Hutchison: And so it was kind of that, distinguishing and making her understand-- her heart was normal, her heart [00:19:00] had all the chambers necessary and it was functioning correctly, whereas my heart was not functioning correctly and I had all these surgeries and procedures and that I needed extra care for my heart.

I think early on it was just helping them understand what my heart condition was, and that it needed extra attention and extra care. They've grown up with that now. My kids are 13, 11 and almost six now. So they've grown up with that and have seen that, and they've been in the hospital, they've been in the doctor's offices and seen the effects of what it's done over these many years so they've kind of grown up in that environment, but, yeah, those early years it was just helping them understand that I wasn't gonna be able to do all the physical things that other dads might [00:20:00] do, and that didn't mean that I loved them any less, obviously, but that there was gonna be, differences in what I was able to do, and the things that I had to do, to take care of the heart.

Anna Jaworski: All of that makes sense. Were you worried about your children's hearts when your wife was pregnant? 

Steven Hutchison: I think we were, naturally, just being cautious. We did have their hearts looked at. 

Anna Jaworski: Mm-hmm. 

Steven Hutchison: And just kinda went through that, reassurance with echocardiograms and had them checked out to make sure that everything was functioning properly.

And we always had that reassurance that, all of them are heart-healthy and obviously very thankful for that. 

Anna Jaworski: Yeah. What a huge blessing. That's just huge. 

Steven Hutchison: Yeah, and I think I was told, as a young teenager growing up, I think they always encouraged me, don't shy away from having a family and having [00:21:00] kids for fear of passing on a CHD or HLHS specifically. They always acted like my heart condition was just a fluke. It was just a luck of the draw, but not necessarily anything that I should worry about passing on. So I never really had that, fear, I guess, of having a family.

But obviously when it comes down to it, you're wanting to be cautious. 

Anna Jaworski: Sure, absolutely. And I think it gives you a better appreciation for what your parents went through when you have children yourself, doesn't it? 

Steven Hutchison: Yeah, absolutely. Our third child, our son, his name is Alex. He was born premature and so even though he was healthy and strong otherwise, we spent about 35 days in the NICU just because he was early.

Anna Jaworski: Okay. He was really early. 

Steven Hutchison: Yeah. He was due Thanksgiving day 2019 and [00:22:00] he was induced on September 29th. 

Anna Jaworski: Oh. Wow. He was induced because your wife was having issues or... 

Steven Hutchison: yes. The placenta had torn and so, 

Anna Jaworski: oh my gosh. 

Steven Hutchison: It was basically emergency C-section. Right. So, yeah. 

Anna Jaworski: Wow.

Steven Hutchison: That gave us a glimpse, of, kind of that newborn health scare, even though it was not heart disease. It was, a very scary time. But... 

Anna Jaworski: absolutely, 

Steven Hutchison: ...he did very well and he's in excellent health today. So it was more of just being early and getting strong than being sick. He was always very strong. 

Anna Jaworski: Well, that's a huge blessing. Wow. 

Steven Hutchison: Yes. 

Anna Jaworski: Well, that gave you a better idea probably than anything else... 

Steven Hutchison: yeah. 

Anna Jaworski: ...about what your parents went through having a young child in the hospital and being the parent of older children who also needed your attention. 

Steven Hutchison: Right. Yeah. Because there was definitely that torn feeling of [00:23:00] making sure the girls did not feel abandoned, you know? 

Anna Jaworski: Right. 

Steven Hutchison: ...being home with the girls while also trying to maintain time in the hospital with him. So thankfully it was no longer than 35 days, but it was a long month, you know for sure.

Anna Jaworski: Oh yeah. Oh, I'm sure that was probably the longest month of your life. Hospital time is not fun time. 

Steven Hutchison: Yes. And thankfully also it was right before COVID and we were able to be in the hospital with him and not have to be shut out. Once COVID hit, we were thankful that we were past that. 

Anna Jaworski: Right. Oh, I know. My heart just aches for the families who had to go through any NICU, PICU or time in the hospital anywhere because they were so restrictive. 

Steven Hutchison: Yeah. 

Anna Jaworski: If they would let a parent in there at all, it was usually one at a time. Parents were not given the kind of support that they really need when you're dealing with having a child with a chronic illness in a hospital.

So yeah. Wow. That was a [00:24:00] blessing that it was before COVID hit. 

Steven Hutchison: Yeah, absolutely.

Anna Jaworski: What is it like balancing, being a father and a husband and living with your heart condition and working full-time? I mean, you've got a lot of balls in the air. 

Steven Hutchison: We do. Yeah. We've got a full plate for sure. Mainly it's just, making sure that we get that downtime and get that time to rest and refresh and your family plays a huge role in that. We have our own little community of family. We live on the same street as my parents and my brother and his family. Oh. So we have a community of help around us, which I'm so thankful for. Yeah. We help one another out and my parents have been a great help with, our kids and my brother's kids.

And, my brother and sister-in-law help us out and we help them out when we can. It is a balance, [00:25:00] definitely to make all the work and the school and everything fit together. Going to church on the Lord's day and all the things that you feel like, you need to fit in and make time for, and set priorities.

Sometimes it gets hectic and busy, but just remembering what's important and trying to set reminders for what truly matters. But yeah, I mean there's times that it feels overwhelming and busy and, you just have to set that balance for sure.

Segment 3

HUG Message: Heart to Heart with Anna is a presentation of Hearts Unite the Globe and is part of the HUG Podcast Network. Hearts Unite The Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community, to uplift, empower, and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at [00:26:00] www.congenitalheartdefects.com for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors and much, much more.

Rejoiner: You are listening to Heart to Heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Jaworski at Anna@Hearttoheartwithanna.com. That's Anna@hearttoheartwithanna.com. Now back to Heart To Heart with Anna.

Anna Jaworski: Steven, what do you want your children to understand about your condition and your experience of growing up with a congenital heart defect?

Steven Hutchison: That, number one, I'm not able to do everything that I may like to do. I played sports when I was younger and my oldest daughter [00:27:00] has shown a little bit of interest in sports, and she played baseball one year when she was younger. She played soccer for a couple years. My son played T-ball. So there's obviously interest in that and what I can do with them or to help participate with them sometimes can be limited. Just helping them understand it's not that I'm disinterested in what their sports interest might be, but help them understand that there are limitations to what I can do physically, and I think that they're at a point now where they get that. 

Anna Jaworski: Mm-hmm. 

Steven Hutchison: Sometimes it is hard, especially when they're younger, to understand why Daddy can't come do this with me, or why we only did it for a few minutes and then he quit, you know? That was hard... 

Anna Jaworski: mm-hmm. 

Steven Hutchison: Try to get them to understand that without crushing them, you know? 

Anna Jaworski: Right. And you don't want to scare them. 

Steven Hutchison: Right. Absolutely. I would try to do things but then help them understand, you know, I've gotta take a break. I can't be out in [00:28:00] this heat or whatever it might be. So I think just doing what I can to help them understand, and certainly I would never wish it upon them to truly understand what it is. But in the best scenario that they can comprehend and I think that they do now, obviously my son is still much younger and... 

Anna Jaworski: Sure.

Steven Hutchison: ... still kinda learning some of that. But he understands, he knows that I go see a doctor and I visit hospitals and he's seen me in the hospital. They understand that something is continually wrong with my heart and that one hospital stay is not gonna fix it.

It's gonna be a ongoing thing. 

Anna Jaworski: It's so hard. 

Steven Hutchison: Yeah. 

Anna Jaworski: Isn't that what's hard? I'm sure your parents experience the same thing I did, which is you bring your baby home from the hospital and people are like, "Oh, good. Is everything fixed [00:29:00] now?" 

Steven Hutchison: Yeah. 

Anna Jaworski: You hate to burst people's bubbles, but 

Steven Hutchison: It's not fixed. 

Anna Jaworski: It's not fixed. It's never gonna be perfectly fixed until... 

Steven Hutchison: yeah. 

Anna Jaworski: ... they're with God

Steven Hutchison: right. 

Anna Jaworski: And their heart is the way God made it and it's perfect for them, but it's not like ours. 

Steven Hutchison: Yeah. And we've even introduced the topic of transplant to the kids and tried to help them understand, you know, that that may not be done close to home, we may have to... 

Anna Jaworski: oh yeah. 

Steven Hutchison: ...relocate somewhere. And we're not just looking at the heart, we're looking at the liver and it's gonna be both of them. And even with that, it's still not a perfect fix because you're replacing one set of issues with another one.

Anna Jaworski: Exactly. 

Steven Hutchison: You know, just doing what we can to explain that. We've always been very open with the kids. One important thing is not sheltering them from the truth and not hiding the truth, but just being open after we've been to the doctor and telling them this is what's going on [00:30:00] and this is what we're faced with. This is the truth. So I think that definitely has helped them with their understanding of everything, but also their trust of...

Anna Jaworski: right. 

Steven Hutchison: ...they're gonna tell us the truth of what's going on. 

Anna Jaworski: Yeah. So your girls are teenagers now, right? Did you say both of them are teens, or do you have a teen and a tween?

Steven Hutchison: 13 and 11. Yes. 

Anna Jaworski: I'm wondering if either of your girls have taken an interest in the heart and maybe done a science project on the heart because you have been so honest with them about what you're living with. 

Steven Hutchison: I don't know that they necessarily have for school, but my oldest daughter, Zoe, she's the 13-year-old. Mm-hmm. She has, recently expressed a little bit of interest in cardiology... 

Anna Jaworski: Really? 

Steven Hutchison: ...For a possible career path. She's not talked about it a lot, at least to me. But I think she told my wife Janice, that she might possibly think about cardiac nursing or, cardiac [00:31:00] nurse practitioner or something like that, so... 

Anna Jaworski: wow. 

Steven Hutchison: We'll see. 

Anna Jaworski: That's amazing. 

Steven Hutchison: What, 

Anna Jaworski: yeah. 

Steven Hutchison: Who knows what the future holds for where... 

Anna Jaworski: I definitely know... 

Steven Hutchison: ...where they might take it.

Anna Jaworski: Yep. I definitely know siblings, I know parents who have gone back to school after they've had a heart kid and they study cardiology. It definitely affects how you view the body and how you wanna give back. I think when you've had a good experience and your child is one of the survivors, you wanna give back.

My way of giving back is podcasting because when I see blood, I faint. So I would not make a good doctor. Nobody wants me in the operating room. Trust me. So has being a father shaped the way you view your health and the way you care for your health differently than before you had children? 

Steven Hutchison: I would say to an extent, but I think I've also just always been cautious.

I can't say I'm always cautious in everything that I [00:32:00] do and eat. I try to make healthy choices at times, but then there's also the times that life just gets busy. You eat on the run. So I can't say that my diet is always perfect, but, you do always have that in the back of your mind of just, trying to do what you can. Obviously having three kids and working full time and trying to take care of things around the house, you're as active as sometimes I can be.

Sometimes, you obviously need that downtime and that rest, and sometimes I come home and just need to fall in bed, you know? Then there's other times I get home from work and I feel like doing some housework and cooking dinner and I think that helps. Trying to do the things that would otherwise make you happy are just as good as that rest. So it's a balance for sure. Obviously there's gonna be times when all you need to do is just sit down in [00:33:00] the chair and rest. It's just kind of goes back to understanding your body and what you need to do at that moment 

Anna Jaworski: Yeah. And it's okay to sit down in your chair, grab your kid, and pop them in your lap and read a book. 

Steven Hutchison: Yeah. 

Anna Jaworski: You don't always have to be throwing a ball or running around with them while they're playing tag or something like that. It doesn't always have to be that physical-- reading a book or sitting down and helping them with their homework.

That's being there for them in a very, very real way that's not quite as physically active or taxing when you've already been active all day at work. 

Steven Hutchison: For sure. Yeah. Yeah, just being there and being present, and doing what you can do to participate and to be with the family, for sure.

Anna Jaworski: How do you cope with the mental and emotional aspects of living with HLHS, especially since you just told us-- the possibility of transplant is out there. That's something that can really weigh on people. [00:34:00] 

Steven Hutchison: Yeah. I've dealt with some of the depression, I think, effects of it as well in the past.

I guess still lingers at times. There's times that are maybe more mentally draining than others especially if you've just undergone a procedure or your health has not been the best. Right now, I feel like I'm in a pretty good situation physically and mentally but there's been times when it's not been the case and, it's possibly taking medication to help you get through that or talking to someone. I've tried talking with counselors in the past. I don't know that that's really the best outlet for me personally.

I've tried it with a couple of different people and I don't know that that's the best route for me personally because I would get in the room and try to explain the situation, but realize they really don't understand what I'm talking about. It's almost better for [00:35:00] me, I think, to talk with people who understand and get it, you know?

Anna Jaworski: Yeah. 

Steven Hutchison: Than trying to pay a counselor who has never been there. So I... 

Anna Jaworski: Which is why that FON-ONE conference that you went to. 

Steven Hutchison: Yeah. That was incredible. That was a great experience I think, not just for me, but for my wife too, to really see that there are other people that get it and 

Anna Jaworski: Right.

Steven Hutchison: ... sometimes the therapies and the medications and stuff out there aren't the greatest go-to. That there's other outlets that you can find. Sometimes it's just finding hobbies and finding things that you enjoy, to help to get your mind off of maybe what's bothering you and to just refocus onto something else is sometimes even the best medicine.

Anna Jaworski: yeah, for me, writing is my best therapy, but prayer, meditation, lighting a candle. 

Steven Hutchison: Yeah. 

Anna Jaworski: Saying a prayer for somebody else always helps me, Steven. 

Steven Hutchison: [00:36:00] Yeah. 

Anna Jaworski: Ollie Hinkle Heart Foundation has a special program called Ollie's Branch, where they actually have counselors who work with people like us.

Steven Hutchison: Mm-hmm. 

Anna Jaworski: Work with families who are living with congenital heart disease, and it's so nice to know that there are some people out there who do get it. 

Steven Hutchison: Yeah. 

Anna Jaworski: Because you're right. If you go to the hospital or a clinic. You speak to a counselor who hasn't met people like us, they don't really understand and you spend so much time trying to just get them to understand.

Sometimes it's successful. I actually have seen a couple of counselors that have really helped me when I've gone through periods of depression because when we lose members of the heart community and I have heart mom friends who lose their children, I get depressed. It's very hard for me. 

Steven Hutchison: It's tough.

Anna Jaworski: It is. Sometimes I wonder why am I doing what I'm doing? Because I'm throwing myself into the community constantly and I know that our community is going to have more people in the hospital facing [00:37:00] catheterizations being on the transplant list. It's a never-ending stream of different types of obstacles that have to be overcome and yet, I'm so impressed with the resilience I see in people in our community. It inspires me. 

Steven Hutchison: Yeah, absolutely. Absolutely. 

Anna Jaworski: I think that's why I keep doing it, because as hard as it is, I'm still so inspired and I feel like hopefully this podcast makes a difference. It helps people feel a little less alone, and I love hearing everybody's stories, so I guess that's why I keep coming back.

I'm a big storyteller and I love hearing other people's stories. 

Steven Hutchison: For sure. Yes. And again, thank you so much. 

Anna Jaworski: Oh, well I wasn't fishing for that, but thank you for saying that. 

Steven Hutchison: Yeah. 

Anna Jaworski: I loved listening to you talk at the FON-ONE conference, and I'm so glad that that was virtual as well as in person, but Steven, now I'm feeling like, okay, we have to go, Steven, because... 

Steven Hutchison: yeah, 

Anna Jaworski: ...there is so much of an advantage. It's kind of [00:38:00] like summer camp for grownups to be able to... 

Steven Hutchison: yeah. 

Anna Jaworski: ...go to a conference like that, we get to learn, we get to share stories with each other. We get to give real hugs, not just virtual hugs. So yeah, I think I'm gonna have to go buy my ticket and plan on going.

I've never gone to that conference before. I've gone to the ACHA, I've gone to Mended Little Hearts. I've gone to a variety of heart conferences, but that's one that I have not been to yet. 

Steven Hutchison: Yeah, it was a great experience. 

Anna Jaworski: Okay. Steven, we have to meet and I have to meet your wife.

Steven Hutchison: Yes. 

Anna Jaworski: Okay, we're gonna make it a date. We only have time for one more question. I would love to know, what would you say to somebody who has a baby who's been newly diagnosed with HLHS and they're feeling uncertain about their baby's future and whether or not they should get married or start a family? What would you say to those parents? 

Steven Hutchison: Yeah, for sure. There's so much more hope today than there was 35, 40 years ago. There's great things going on that are really [00:39:00] advancing the life of single ventricle heart disease. I was in Rochester, Minnesota this past week to experiment with the skin punch study that they're doing at HeartWorks. 

Anna Jaworski: I'm so excited to hear you're doing that. I think it's amazing what they're doing with HeartWorks.

Steven Hutchison: Yeah, it was really incredible. They took a small pinch of skin and left it there in the lab and they are growing skin cells to turn into beating heart cells with the potential hope that it can turn into beating heart tissue. It's incredible what they... 

Anna Jaworski: It is. 

Steven Hutchison: ...Are hoping to do with that. I think it goes back to there's hope. There's things going on all the time and there's new research and doctors that can save these children. Whenever I see people who are fighting with the thought of giving up on their [00:40:00] child, it's hard because I was given a chance 38 years ago, and I'm so thankful for the life that I've been given. I think that is even more prevalent today with the advances since then. I would say don't lose hope. 

Anna Jaworski: Oh, I love that so much because one of the things we parents worry about when we're told, you can choose compassionate care. You don't have to put your baby through all these surgeries.

And my mother even turned to me and said, "Honey, do you really want the baby to suffer?" And I said, "No, of course I don't want my baby to suffer, but I want my baby to live." 

I wondered, 'Is my baby going to hate me? Because we did have catheterizations and surgeries and medications and restrictions and all the things that we just talked about earlier in the show.'

Steven Hutchison: Yeah, 

Anna Jaworski: We're dealing with a life of uncertainty. But you know what? We all have a life of uncertainty. 

Steven Hutchison: Oh sure, 

Anna Jaworski: We just don't realize it. Having this condition makes us more aware [00:41:00] of it, which is a double-edged sword. On the one hand, that's tough to deal with.

On the other hand, it makes you appreciate everything. Every little milestone and achievement is that much more significant because we realize that everyday matters. 

Steven Hutchison: Right. 

Anna Jaworski: I think in a way that's a gift. 

Steven Hutchison: Oh yeah, I've never looked at my heart condition, though I don't think I would wish it upon other people, I don't look at it as something that I've regretted or hated... 

Anna Jaworski: or are cursed? 

Steven Hutchison: I've been thankful-- or are cursed. Yeah, 

Anna Jaworski: yeah, 

Steven Hutchison: yeah. That's the word maybe I was looking for. Yeah.

Anna Jaworski: Yeah. I've had unkind people who have said things like, "Well, what did you do while you were pregnant?" They try to make it out that it's the parents' fault that this happened and you said earlier that you were pretty much raised to believe it was just a fluke of nature. That's what I was told when I asked why my baby had HLHS. It was just a [00:42:00] fluke. I don't know that that's necessarily so. I have a feeling eventually we'll have the science to be able to explain how there was maybe a genetic predisposition, but this environmental cause had to be in place at the same time, or who knows?

I have a feeling it's a very multifactorial situation. 

Steven Hutchison: Mm-hmm. 

Anna Jaworski: And that's what makes you guys rare. Yet, it's the number one birth defect. So it's not actually that rare. HLHS is the fourth most common. Simple holes in the heart, ASDs and VSDs, those are the most common and a lot of them close up on their own, which is lovely.

But that's not what happens with HLHS. 

Steven Hutchison: Correct. Yeah. A little more involved. 

Anna Jaworski: Yeah. Way, way, way more involved. But I love it that you and I also feel that there is so much hope and what they're doing at HeartWorks. Wow. For those of you who don't know, Dr. Timothy Nelson has been on my program. I'll put links to the HeartWorks episodes as well, [00:43:00] because now that you've heard that Steven is taking part in this program, you may wanna know more about it. They're doing revolutionary new work with HeartWorks. They're taking research in a new direction instead of a bunch of scientists theorizing what they think should be done, they're actually looking at the human beings who have, in this case, specifically single ventricle hearts, and what problems arise and then they're trying to come up with solutions to help those people. And there's a registry that you can join, which obviously Steven belongs to and when you have certain issues, they find out about it. When there are enough people that are having the same kind of issues, it gives them an opportunity to become innovative and try to figure out how they can find an innovative solution for that. Not just a pill, but they're actually looking at the molecular level.

They're actually looking at [00:44:00] stem cells, which to me is just... 

Steven Hutchison: yeah, 

Anna Jaworski: ...science-fiction-turned-fact, Steven. 

Steven Hutchison: Yeah. The cool thing about it is it's only used for you, so you eliminate that possible rejection, and you're not just setting a skin sample out there to be used on anyone. It's going to come back to you. 

Anna Jaworski: Right. 

Steven Hutchison: That's incredible. 

Anna Jaworski: Yeah. Absolutely. They had a program several years ago and I had a mom come on the show and talk about it where she saved her cord blood and they were able to use the cord blood to get stem cells as well. It's amazing what they can do today, and I think you're right.

We owe it to our children to be aware of the different programs that are available, and that's one of the advantages to having this podcast is I'm constantly finding out about new programs, new doctors, new procedures, and hopefully that makes me a better advocate for my daughter and for all of my friends and family that I care about so much 'cause [00:45:00] you're part of my family now, Steven. 

Steven Hutchison: Thank you so much. 

Anna Jaworski: Thank you so much for coming on the program today. 

Steven Hutchison: It's been great. I appreciate it so much. 

Anna Jaworski: I have a feeling you'll be coming back. Maybe I'll have you come back on with your wife sometime. That would be fun.

Steven Hutchison: Yeah, we'd love that. That would be great. 

Anna Jaworski: That would be awesome.

 I want to thank Steven for sharing his story today. What struck me in both Steven's and Jessica's stories is how resilience and advocacy can take many forms, but lead to the same truth. Life with HLHS can be filled with meaning, love, and impact. Steven shows us that living with half a heart doesn't limit one's ability to be a devoted father, husband, and provider.

Jessica shows us how advocacy and storytelling can ripple outward to help countless families and for me. This comes full circle. My own daughter was also born with half a heart. If it weren't for her and the way she's inspired me over the [00:46:00] years, I never would've met Jessica or interviewed Steven or built the community that is now Hearts Unite the Globe.

It's funny how people born with half a heart have the ability to inspire people around the world. And in doing so, they've brought so many of us together.

That spirit of connection continues through our work at HUG, including our upcoming virtual retreat in September, 2025. It's another chance for our volunteers to learn, reflect, and celebrate the hope that binds us together. That's all for today's episode of Heart to Heart with Anna. Join our Patreon group and become part of the heart-to-heart circle.

You're not just a listener. You're a co-creator in a movement for real, organic storytelling. The link is in the show notes. Until next time, my friends, remember you are not [00:47:00] alone.

Conclusion: Thank you again for joining us this week. We hope you have become inspired and empowered to become an advocate for the congenital heart community. Heart to heart with Anna, with your host Anna Jaworski can be heard at any time wherever you get your podcasts. A new episode is released every Tuesday from noon Eastern time.