Tiny Little Hearts Podcast
This podcast is about Congenital Heart Disease (CHD), complex medical journeys, parenting through uncertainty and the deep resilience of walking through big life changes.
Hosted by Katelyn McMahan, a mom to three girls whose life was changed in an instant when she found out her youngest daughter had complex cardiac abnormalities. She went searching to hear about kids with a similar diagnosis and wanted to see the life they were living. She didn’t want the curated, polished stories so she could prepare her heart for the good, bad and ugly.
This podcast does just that and highlights conversations from individuals, parents, medical providers, and others navigating the very real and overwhelming world of congenital heart defects and other medical complexities. You’ll hear honest conversations, practical advice and space to feel seen and understood.
Tiny Little Hearts Podcast
4. Walking Before Goldie: My Dad's CHD Journey
In this episode, host Katelyn McMahan interviews her father, Steve, about his experiences growing up with congenital heart defects (CHD). They discuss the medical challenges he faced, the advancements in cardiac care over the years, and the emotional impact of living with a chronic condition. The conversation also touches on the generational aspects of CHD, the importance of advocacy for patients, and the role of faith and family support in navigating these challenges. Steve shares his reflections on his childhood, the bond he shares with his granddaughter Goldie, who also has CHD< and offers advice to parents and caregivers of children with similar conditions.
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Basically, they told my parents, if you can keep him alive for 10 years, we will have the technology to be able to do the surgery, surgeries that he will need. And so my first two years were pretty rocky. I was a blue baby, but gained strength after that and had my first surgery when I turned eight.
SPEAKER_00:Welcome to Tiny Little Hearts, the podcast where motherhood meets resilience and every heartbeat tells a story. I'm Caitlin, a mom to three incredible girls, one of them being our heart hero, Goldie, born with congenital heart disease. Here we talk about real life, the messy, the beautiful, and the unexpected. From navigating heart journeys to juggling the chaos of parenting and embracing the big, sometimes scary, life transitions, this space is for the brave and tenderhearted. Whether you're deep in the trenches of motherhood, navigating a CHD diagnosis or just here for a little solidarity and storytelling, you're in the right place. I hope you find a sense of community and belonging here. Grab your coffee, take a deep breath and let's walk this road together, one heartbeat at a time. Hey, welcome everybody. I have a very special guest joining me today for some conversations about what it was like growing up with CHD maybe many years ago. I'd like to introduce my dad, who I have here with me. His name is Steve. Hi, Caitlin. Thanks for joining us, dad. Glad to do it. I want to kind of talk through some of your specific heart defects, introduce kind of the ages that you had some of your early surgeries as well as a special guest of someone who's been living with CHD probably a longer than most other guests that we've had on different episodes.
SPEAKER_01:Yes, I was born with congenital heart defects, is what they told my parents. And I was born in Northwest Iowa, and they said there were two hospitals that they would recommend going to. One was Mayo in Rochester, and the other one was University of Iowa Hospitals in Iowa City. So my parents ended up taking me down to Iowa City, and I had diagnosed bicuspid aortic valve of ventricular septal defect, a cork of the aorta. That was probably the most significant part of it. And then a deformed mitral valve, although I'm not sure exactly what kind of deformity it was. Anyhow, the medical surgeries, I guess, that I had, basically they told my parents, if you can keep him alive for 10 years, we will have the technology to be able to do the surgeries that he will need. And so my first two years were pretty rocky. I was a blue baby. and gained strength after that and had my first surgery when I turned eight. and it was for the cork of the aorta. Before that, I'd had a heart catheterization. There was no echo back then. The EKG was rubber straps on metal clamps that they strapped onto you, put a little goo on there, and then you had to lay for like 10 or 15 minutes. Now they do an EKG in about 30 seconds, but back then it took quite a while. So my first surgery was in Iowa City, and that was to correct the the arch, the cork of the aorta. And I remember the doctors explained to me that parts of my aorta were the size of a 50-cent piece and other parts were the size of a pinpoint. And so this was before any synthetics as well. So the surgeon actually cut out the big pieces, used that to graft new aortic tissue to make my aorta more even all the way through. So that's how they did it back then was They just narrowed down the big pieces and used the extra big pieces that they'd cut out to expand the small pieces. My second surgery was when I was 25 years old, and that was at Mayo Hospital, St. Mary's Hospital in Rochester. That surgery, they needed to replace my aorta. Back then, they basically had a ball and cage, Star Edwards valve is what they called it, or a pig valve. But the pig valve would have to be replaced every eight years. So we opted for the ball and cage, which was supposed to last for 20 years. And it did last that long. That was my next surgery was when I was 46 and replaced the aortic valve with a new aortic valve. This one is the disc valve. And And then when they were closing me up, they noticed that the mitral valve needed to be repaired. They put in a new mitral valve, another disc valve. I forgot to mention, in my second surgery, they also tried to close the VSD. It didn't remain closed. And they did close at that time. So those are my three big heart surgeries.
SPEAKER_00:Yeah. I remember your Cleveland Clinic when that was when I was in college. So that was my first real experience of going through understanding. We grew up knowing about your heart conditions, but that was the first experience going through a surgery. Something that I wanted to talk about is there's so many unique things that now having Goldie, you know, your youngest granddaughter, who also now has congenital heart defects. And I think it's been really interesting to kind of understand from your perspective of you are playing so many different roles in her life right now of grandfather of understanding her struggles and what she's going through different than even myself as her mom because you have been through it before but talking about like what cardiac care looked like then you touched on a couple of those things but I think about that a lot of thinking back to grandma in my shoes so she didn't have near the access to the information or even understanding what the care looked like you know when you were born and I think that this is so important to the advocacy in general. So many other medical complexities that children struggle with. To think about the difference in cardiac care that you received then with these heart conditions compared to Goldie is mind-blowing.
SPEAKER_01:It is, yes. Sadly, Goldie has more significant defects than I was born with. I was able to hang on for those first eight years until they could begin to do the surgeries. The medical care today is extremely different and very significant in terms of the technology and the improvements. I remember when they introduced the echo cardiogram, I was 18 years old. Back then it was just a black and white screen.
SPEAKER_02:Wow.
SPEAKER_01:But before that, I'd always had to go in every few years for a heart catheterization. And with the introduction of the echo, they said, we don't need to be doing that like we did in the past.
SPEAKER_00:Right.
SPEAKER_01:So, you know, the only time I've had a A heart cath is before the last two surgeries.
SPEAKER_00:Right.
SPEAKER_01:Otherwise, I've not had a heart catheterization.
SPEAKER_00:Well, and even the advancements in that, some of the intervention that they're able to do now is via heart catheterizations, sometimes avoiding having to go in surgically in a more complex surgical procedure. So let's talk a little bit, if you're okay talking about this, of your role as grandfather to Goldie, what your feelings were when we first learned about Goldie having heart defects or heart abnormalities. I'd love to hear kind of your story behind that.
SPEAKER_01:Well, I was in my office working And I remember hearing you crying out and talking to mom. And so I went out to see what was going on. And that's when you told me and made me really, really sad. I just felt really bad for her and for you. Knew that it would be a real challenge. But some of the things that I thought of was, you know, my kids. I'm very blessed. I mean, I have all of us who were born with congenital heart defects. There's now a new lineage of doctors that are trained just to treat us. And so as your kids grow older into adulthood, then there's treatment specific for them and doctors that are trained specifically for them. But I remember my cardiologist kept asking me, did you get your children to have an echo? And I said, I kept asking, well, I said, well, I've mentioned it, but I haven't followed through to see whether they've done that or not. Very, very persistent. And I didn't understand because I'd always been told that there wasn't a genetic relationship. It was just kind of an abnormality.
SPEAKER_02:So
SPEAKER_01:that was the other thing that flashed back to me when you told me about Goldie, thinking that maybe I had passed it
SPEAKER_02:on to her.
UNKNOWN:Mm-hmm.
SPEAKER_01:So, you know, that was a sad day for all of us.
SPEAKER_00:We have come to find that you didn't pass it on genetically. I think it's been something that has been so interesting and perplexing to a lot of providers, just of the advancements in medicine and and being able to do a lot of genetic testing. And a lot of them are congenital heart defects do happen based on just abnormalities in some of the DNA strings. And I think that this is maybe just something that is more of a God thing of like your diagnosis is considered congenital Jones complex because you have four or more defects on the left side of your heart and Goldie's is as well. And I think that it's like so fitting that as we call you have the same diagnosis, you touched on something. I talk about this a lot through some of my episodes and just some of my writing and the sub stack. One of the things that you touched on saying that it was a sad day and you like your heart hurt for her of having these. And I think that watching her navigate these challenges. I mean, I have people say, do you wish that you, It could be different. Of course, I wish it could be different for her, for you, for anybody. I don't think anybody would ever wish to have these. you know medical complexities upon any of their children or people in their family but of learning how you do adapt and you do live and you do find like faith through these as well um in a different way so watching her now navigate some of these challenges like has that helped you kind of reframe or have you reflected back on your childhood and some of the struggles that you went through And has that like posed a different light in any way?
SPEAKER_01:You know, I was really protected. I couldn't do, I think I was the first child to ever graduate from high school without a PE credit. And I think they had to go through the state to get the state legislature or something to get me special permission. But they did not want me doing exercising. Now you would want them to do exercise. But back then it was like no exertion, no extra exercise. And, you know, my mother was my greatest defender. She was my protector. And so, I mean, it was, you know, growing up as a child is difficult in its own right,
SPEAKER_02:I think.
SPEAKER_01:But, yeah, the medical challenges created a different level. You know, I was often ridiculed in school. And, you know, for me, I think... The thing that helped me the most was my faith and my parents and my grandparents who all looked out for me and protected me. And my doctors. I remember my mother could be overprotective. In one of the visits with my pediatric cardiologist when I was a child, I remember her almost kind of yelling at my mom. He's already... physically disabled, don't make him emotionally disabled.
SPEAKER_00:I mean, that's one of the big topics that we talk about now with a lot of the providers. And it's talked about, you know, in terms of research that the mental health aspect is, it's, there's a great, greater risk and component of medical complex children, you know, struggling with the mental health aspect as well. As we are kind of looking ahead, if you could give a any of these heart kiddos of maybe parents or friends who are listening or even themselves who are listening and Goldie, like what advice would you give them?
SPEAKER_01:Well, I think as a child, you know, every parent and grandparent becomes a defender for that child. And, you know, you know your child and they need special attention. And so it was my mom and my dad who were my advocates for that. I think as an adult, for me, the biggest challenges was growing up as a child and as a youth with it. And that's again where my faith became so integral in terms of my identity. And because that identity was so formed, the challenges haven't been as significant as they were when I was younger. At least in terms of emotional health. And, you know, your audience may not know this, but I'm a pastor. And I remember the first church that I was called to serve, our services were... Now, this was 30-plus years ago. So our services were broadcast over the radio before they had television.
SPEAKER_00:Livestream.
SPEAKER_01:And before they had livestream. But anyhow, I remember there was a woman from our community. Her husband was our trash collector, and she contacted your mom and me. And after a sermon, I had mentioned something about my wife. heart defect and told us how significantly important that was to hear because she was a mom with a child with CHD. And she said that it gives me hope that maybe my child can have a normal life or as normal as it can be.
SPEAKER_00:Right. And I remember saying that when I called my sister on the way home from the appointment and told her that the Goldie had heart defects that were detected in the ultrasound. And I remember saying like, well, look at dad, it's going to be fine, you know? And I think that it's been such a glimmer of hope. I think for me going through this of knowing and seeing the full life that you've been able to live and knowing like the, again, as we were talking about earlier in this episode of like the advancements that have been made in medicine that are only working in the favor of the Yes. that doesn't mean that it's not come without the struggle and without the fear, you know, and without the hardships that you really have had to live through. And I think that in some ways, Goldie has much more severely complex conditions, as you said, and a lot of the intervention that she had, you know, even in utero of the Boston procedure, if she had not had that, you know, it's not like she could have been born and lived, you know, and had them tell me, like, just go keep her alive for 10 years, it probably wouldn't have happened. But understanding that, and I think that that's why I've been so passionate about, like, continuing to build on this community. And hopefully, hopefully, if there is someone listening today who is looking for that hope that this episode can bring that to them, of really seeing that, like, you can have a full life and you can Have a family and you can really start to understand that through interventions and prayer and the faith and the commitment to understanding how you can take care of your body and how you can help your providers care for you surgically. These kiddos are no different than any other kid running around out there. So I think that that's something that's been so helpful for me. I just keep looking at you and hoping that she has that opportunity to continue to look at you as she continues to grow up and understand that her bumpa lived until 90. Well,
SPEAKER_01:we have a few years to get there.
SPEAKER_00:Yes. Well, thank you for coming on today, Dad. I know that this... It was very special for me to be able to interview you in this format that I know that it's a special bond that we share and that you will continue to share with Goldie.
SPEAKER_01:You know, if there was one thing I would leave with you, Caitlin, and all the moms out there is don't be afraid to be the advocate for your child. So be persistent. And, you know, your child depends on you.
SPEAKER_00:Yeah. They need us to help pave the way and teach them.
SPEAKER_01:Yeah.
SPEAKER_00:So they have the ability when they're an adult and can advocate for themselves. Thank you, dad. Love you. You're
SPEAKER_01:welcome. Thank you so much. I love you too, sweetheart.
SPEAKER_00:Thanks for spending time with Tiny Little Hearts today. Whether you're driving yet to another appointment on a walk or folding the laundry, I see you and I am cheering you on. If something you heard today made you laugh, cry, or feel a bit less alone, please consider subscribing and sharing this episode with a friend who may be yearning for the comfort and belonging that this community seeks to provide. Until next time, remember that in the midst of the chaos of day-to-day life, you are enough when you show up and love big, one heartbeat at a time.