September 10, 2025 • 47 mins
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/
Become a supporter of this podcast: https://www.spreaker.com/podcast/heart-to-heart-with-anna--1256958/support.
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/
Become a supporter of this podcast: https://www.spreaker.com/podcast/heart-to-heart-with-anna--1256958/support.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (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.
Speaker 2 (00:15):
Welcome to Heart to Heart with Anna.
Speaker 3 (00:18):
I'm Anna Chuworsky Hartman to Hope, my single ventricul daughter
who was born in nineteen ninety four. 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.
Speaker 2 (00:34):
How is 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.
Speaker 3 (00:47):
Stay tuned to hear Stephen Hutchison share his story of resilience,
faith and family.
Speaker 2 (00:56):
This year marks twelve years since I launched Heart to
Heart with.
Speaker 3 (01:02):
For nine of those years, I've attended podcast movement, my
go to conference.
Speaker 2 (01:06):
For continuing education.
Speaker 3 (01:08):
But this year was extra special because for the very
first time, six of us from Heart to Night the
Globe attended together in person. Michael Leban of Brie but
Still Me and Sherry Turner returned for their second podcast movement.
We also welcomed three first timers Ayrton Beattie and Nicole Billdo,
who both work on the HC podcasts in Genital Heart Conversations,
(01:32):
and Spencer Keaton, who like Sherry, 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
(01:55):
of the week as well. She not only helped with driving,
but she also surprised of all 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
(02:15):
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
(02:37):
a huge retreat. It wasn't our first before COVID I
hosted retreats in Jerusalem, Israel, Temple, Texas, and Husson, 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,
(02:58):
and decide what we'd like to bring into our podcasts
moving forward. We also enjoyed team building activities like podcast
speed dating and a gratitude web. We close with an
awards 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
(03:20):
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 instead of becoming a patron or
a volunteer today now for the news.
Speaker 2 (03:48):
Seeing our team.
Speaker 3 (03:49):
Give of their time, talent and treasure reminded me how
powerful generosity can be Sometimes it shows up in cooking meals,
of driving people where they need to go, or even
sharing a sacred tradition. Other times it shows up through advocacy,
research and storytelling that rip well outward to help countless families.
Speaker 2 (04:10):
That's why I'm especially proud to share today's.
Speaker 3 (04:12):
News about one of our own former guest and contributor
to the Heart of a Heart Warrior. Jessica Cohen has
received the Cardiac Neurodevelopmental Advocacy and Engagement Award for twenty
twenty five. Jess has dedicated her career to raising awareness,
furthering research, and supporting PhD families. She has served on
(04:37):
multiple committees with the Cardiac Neurodevelopmental Outcome Collaborative and currently
works at Laurie 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 help and change.
This award is one of the highest honors in the field,
(05:00):
and Jessica will be recognized alongside doctor Frank Casey this
September during the Sea Knock Scientific Sessions. Please join me
in celebrating her incredible achievement. Next up our interview with
our amazing heart warrior, Steven Hutchison.
Speaker 2 (05:18):
This content is not intended to be a substitute for
professional medical advice, diagnosis, or treatment. The opinions expressed in
a podcast are not those of Heart to unite the globe,
but of the hosts and guests, and are intended to
spark discussion about issues pertaining to congenital heart disease or bereavement.
Embark on a heartwarming odyssey with Baby Heart's Pressure gateway
(05:40):
to uplifting stories for the c HD community. Introducing the
Heart of a Heart Warrior book series inspiring those born
with heart effects 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 familiar support.
Visit Baby Heart's us dot com and be part of
(06:01):
our loving community uplifting hearts one story at a time.
Today's guest is Stephen Hutchison. Stephen is a thirty seven
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, Stephen underwent emergency surgery,
(06:23):
followed by a glen procedure at age three and the
fontine procedure at age five. Since then, he has faced
numerous medical events, including multiple cathorizations, echo cardiograms, and tests,
along with two twelve hour oblations in twenty twelve. Despite
his ongoing health challenges, Stephen strives to maintain a balance
(06:45):
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 Stephen.
Speaker 1 (06:59):
Thank you so much. It's great to be here.
Speaker 2 (07:01):
It's great to have you here and to learn more
about your life growing up with HLHS, especially with you
being thirty seven. I'm always tickled pick 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 Haart Warriors.
Speaker 1 (07:22):
I am thirty eight now I will.
Speaker 2 (07:23):
Say that, Oh my gosh, that's right. Happy birthday.
Speaker 1 (07:29):
May seventh is my birthday.
Speaker 2 (07:32):
Okay, Yes, And I learned about you last year at
a conference where I saw you speaking, so it has
been a little more since you sent me your forms.
I'm a July birthday baby, So yeah, we're both a
year older.
Speaker 1 (07:47):
Yes, I was in Saint Louis last year speaking at
the Dulton Genital Heart Day and the other events surrounding
that event in Saint Louis.
Speaker 2 (07:55):
I know I hope to go this year. Will you
be going this year? It's not in Saint Louis this year.
I think it's Indianapolis.
Speaker 1 (08:01):
It's in Indianapolis. I don't know if I'm gonna make
it yet.
Speaker 2 (08:04):
I want to go in person. If I can't go,
it's such.
Speaker 1 (08:07):
A better experience, I think to be there in person.
Speaker 2 (08:09):
If we do, we have to get our picture made. Yes, absolutely, Okay,
that would be awesome. So let's start by talking about
how you did growing up with Ahla just and how
that shaped your life as a child.
Speaker 1 (08:23):
Those early days. It was obviously before social media and
before you really even realize how widely spread con digital
heart disease is. I think at that time you kind
of felt like you were the only person in your
circle in your family. But if you're the only one
with a heart condition, you kind of feel like you're
(08:44):
that only person that really gets it. And 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 felt like I'm the only one
that really gets it. But I guess I grew up
be introduced the internet and social media into the picture.
(09:07):
You realize, so there are more people out there with
not just kim general heart disease, but HLHS specifically, And
I think that's really helped 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
(09:29):
my parents to let me live normally. I played baseball,
I played with my friends, I rode biked 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 is going to have that limitation,
(09:53):
as do we all. Steven Oh there, absolutely yeah.
Speaker 2 (09:58):
But I think learning 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.
Speaker 1 (10:12):
I have one older brother. Yeah.
Speaker 2 (10:14):
Did he treat you just like any older brother would
treat a younger brother.
Speaker 1 (10:18):
Absolutely? Uh.
Speaker 2 (10:22):
Yeah. Joey is my older child, and I called him
the normalizer because I wasn't allowed to treat my AHLHS
child with kid gloves, because Joey was there to set
the record straight.
Speaker 1 (10:33):
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, But he
was a true support. So it's a great family atmosphere
we have. I've had a lot of support. Very thankful
for that.
Speaker 2 (10:52):
Yeah, it's that yin and yang of brotherhood.
Speaker 1 (10:55):
Yeah. Absolutely, We've got.
Speaker 2 (10:56):
To be able to wrestle on the floor, but nobody
else is allowed to pay on you.
Speaker 1 (11:00):
That's right.
Speaker 2 (11:03):
I love it, that's right. How is growing up with
a single vtrical heart affected your daily life and your
view on your long term health?
Speaker 1 (11:12):
Obviously, growing up in through 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 sects from
the Fontaine. I'm thirty eight, so that Fontaine is now
(11:34):
I guess about thirty three years old, so it's definitely
taken its toll as well with the physical aspect of things,
with the circulation and Erico's veins coming from that, and
the physical aspect is definitely kind of paid a toll.
As I've gotten older, you.
Speaker 2 (11:55):
Have a classic Fontianne, right, yeah, And you didn't even
have a fenistrate of Fontane, did you.
Speaker 1 (12:03):
I'm trying to remember now. Actually, if it's fenestrated, I
want to say maybe it was.
Speaker 2 (12:09):
Okay, my daughters was also fenestrated, but I know that
she was one of the early ones to have it done,
and Shelby thirty one this year. So yeah, like I said,
you guys were really the pioneers, paying a way for
them to understand what that kind of physiology could do
to a person. So you said you have some condition,
she said, the Verico's veins. Is there concern about your liver?
Speaker 1 (12:32):
There is. I do have sald or fonte and associated
liver disease. Now. In fact, most recently we were in
Kansas City, which is where I'm seen now for my
adult in gettle Heart of following into City, Missouri. They
are looking more at the liver a lot more now.
Over the last couple of years, we did a echo
(12:56):
of the abdomen liver and a thought 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,
that cancer was coming into the picture because that is
something that is common with fontaine associated liver disease. So
(13:20):
we are taking a much more serious look at the
liver now going forward to safeguard against anything like that.
Speaker 2 (13:28):
It's amazing to me that you've had one fontiae and
only one. My daughter had to have a fontia revision.
And you're doing great. I mean, you're working your dad.
It sounds like you're very physically active. It's pretty amazing,
isn't it.
Speaker 1 (13:45):
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 to do and develop. And you know,
I can't imagine the thing the surge injury able to
go in there and do I can't comprehend how they
(14:08):
either do that.
Speaker 2 (14:09):
No, when you're a baby, and part is the size
of a walnut. You think, wow, how do you do that? Amazing?
It really amazing.
Speaker 1 (14:19):
It's incredible. But I go back to God gave them
the ability to do that, and God gave 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.
Speaker 2 (14:39):
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. What
has your cardiologist said to you regarding your long term health.
Speaker 1 (14:56):
I don't think we've really discussed as far 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.
Speaker 2 (15:12):
And that's what I was wondering about.
Speaker 1 (15:14):
Yep, yep, the same. 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
(15:36):
of depends on how I'm doing each six months or
each year when I go to see them, and what's changed,
How is the liver doing, how is the heart function.
Going back to what we were saying with the fontane
associated liver disease and the effect that fontine has on
the entire body, at this point, it's not just the
(15:57):
heart now, it's what are it doing to everything else?
That really is just kind of dependent on what's next
as far as how the body is reacting to that.
Speaker 2 (16:06):
For people who maybe don't understand what the big deal
is with the fontiane, the fontiane is a stage 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
(16:28):
to the entire body. And 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
(16:49):
what that means is that the body produces more red
blood cells so that it carries oxygen to the body appropriately.
So that's why most people with fontiane hearts will have
an oxygen saturation level that's a little bit lower than
somebody who has a poor chamber pumping heart. And all
(17:11):
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
(17:33):
have enough oxygen, and it can cause this fontane 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
fontaine physiology, so they're changed the name to fontane associated
liver disease. I'm wondering, how does having a family Stephen
(17:58):
affect your life with HLHI now that you're a daddy.
Speaker 1 (18:02):
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
(18:23):
medicine every day. And my oldest her name is Zoe,
she's thirteen now, 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
(18:43):
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 bake my heart strong? And
so it was kind of that distinguishing and making her
understand her heart was normal. Her heart I've had all
the chambers necessary and it was functioning correctly, whereas my
(19:07):
heart was not functioning correctly, and I've 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
(19:28):
that now. Now My kids are thirteen, eleven, 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 doctorate offices and seeing 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,
(19:51):
it was just helping them understand that I wasn't going
to be able to do all the physical things that
other dads might do. And that didn't mean that I
love them any less, obviously, but that there was going
to be differences in what I was able to do
and the things that I had to do to take care.
Speaker 2 (20:12):
Of the heart. Yeah, all of that makes sense. Were
you worried about your children's hearts when your wife was pregnant.
Speaker 1 (20:21):
I think we were naturally just being cautious. We did
have their hearts looked at and just kind of went
through that reassurance with echo cardiograms and had them checked
out to make sure that everything was functioning properly. And
we always had that reassurance that all of them are
(20:42):
hurt healthy, and obviously very thankful for that.
Speaker 2 (20:45):
Yeah, what a huge blessing. That's just huge.
Speaker 1 (20:48):
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 for fear
of passing on ADHD or HLHS specifically. They always acted
like my heart condition was just a flute. It was
(21:11):
just a lucky to draw, but not necessarily anything that
I should worry about passing on. So I'd never really
had that fear, I guess of having a family that obviously,
when it comes down to it, you're wanting to be cautious.
Speaker 2 (21:25):
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.
Speaker 1 (21:34):
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 thirty five days
in a nick you just because he was early.
Speaker 2 (21:53):
It was really hard.
Speaker 1 (21:54):
Yeah. He was due Thanksgiving Day twenty nineteen, and he
was induced on September twenty nights.
Speaker 2 (22:02):
Oh yeah, sinduced because your wife was having issues.
Speaker 1 (22:08):
Or yes, the placenta had torn in center. It was
basically emergency c section. So yeah, I gave us a
boyumps of kind of that newborn health scare. Even though
it was not heart disease. It was a very scary cord.
But he did very well and he's an excellent health today.
(22:32):
So it was more of just being early and getting
strong than being sick. He was always very strong.
Speaker 2 (22:39):
Well that's a huge blessing. Wow. Yes, Well that gave
you a better idea, probably than anything else 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, right.
Speaker 1 (22:55):
Yeah, because there was definitely that torn feeling of making
the girls did not feel abandoned, you know, being old
with the girls, while also trying to maintain time in
the hospital with him. So thankfully it was no longer
than thirty five days, but it was a long months,
you know for sure.
Speaker 2 (23:15):
Yeah, Oh, I'm sure that was probably the longest month
of your life. Hospital time is not fun time.
Speaker 1 (23:23):
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, right.
Speaker 2 (23:36):
Oh, I know, my heart just aches for the families
who had to go through any nick you pick you
or time in the hospital anywhere, because they were so restrictive.
If you would let a parent in there at all,
it was usually one at a time. Parents were not
given to kind of support that they really need when
you're dealing with having a child with the chronic illness
(23:57):
in the hospital. So yeah, wow, that was a blessing
that it was before COVID hit.
Speaker 1 (24:03):
Yeah. Absolutely.
Speaker 2 (24:07):
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.
Speaker 1 (24:17):
We do. Yeah, we've got a full plate for sure.
Mainly is 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,
(24:41):
so we have a community of help around us, which
I'm so thankful for. We help one another out, and
my parents had been a great help with our kids,
and my brother's kids and my brother and sister in
law help us out. We help them out when we can.
It is a battle. It's definitely say, make all the
(25:02):
work and the school and everything fit together and going
to church on the Lord's Day and all the things
that you feel like. So you need to fit in
and make time for and set priorities. Sometimes it gets
hectic and busy that just remembering what's important and trying
to set reminders for what truly matters that yeah, I
(25:25):
mean there's time who it feels overwhelming and they and
you just have to set that balance for sure.
Speaker 4 (25:38):
Heart to Heart with Anna is a presentation of Heart
to Unite the Globe and as 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 pretending to
the PhD community, please visit our website at www. Congenitalheartdefifts
(26:02):
dot com for information about CHD, the hospitals that treat
children with CHD, summer camps for HD survivors, and much
much more. 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
(26:24):
Anna Jaworski at Anna at Heart to heartwith Anna dot com.
That's Anna at Heart to Heart with Anna dot com.
Now back to Heart to Heart with Anna.
Speaker 2 (26:38):
Steven. What do you want your children to understand about
your condition and your experience of growing up with that
congital heart defect?
Speaker 1 (26:48):
That number one, I'm not able to do everything that
I may like to do. I played sports where I
was younger, and my oldest daughter 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 of years. My son played t ball, so there's
(27:10):
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 where I can do physically,
and I think that they're at a point now where
(27:32):
they get that. 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 to
try to get them to understand that without crushing them.
Speaker 2 (27:49):
You know, right, and you don't want to scare.
Speaker 1 (27:51):
Them, right, Absolutely, I would try to do things, but
then help them understand. You know, I've got to take
a break. I can't be out in this heat or
whatever it will 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,
(28:14):
but in the best scenario that they can comprehend, and
I think that they do now. Obviously my son is
still much younger and still kind of 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
(28:36):
the hospital. They understand that something is continually wrong with
my heart and that one hospital stay is not going
to fix it ongoing say yeah, and that was hard.
Speaker 2 (28:51):
I'm sure your parents experienced the same thing I did,
which is you bring your baby home from a hospital
and people are like, oh, good, is everything fixed? Now.
You hate to burst people's bubbles, but it's it's not.
It's never going to be perfectly fixed until they're with
God and their heart is the way God made it
and it's perfect for them, but it's not like ours.
Speaker 1 (29:15):
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 relocate somewhere when we're not just looking
at the heart, we're looking at the liver, and it's
going to be both of them. And even with that,
(29:35):
it's still not a perfect fix because you're replacing one
set of issues with another one, and 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
(29:57):
and telling them this is what's going on, 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 oath to tell us
the truth of what's going on.
Speaker 2 (30:15):
Yes, so your girls are teenagers now, right? Did you
say both of them are teens or do you have
a teen.
Speaker 1 (30:21):
And a twein thirteen in eleven?
Speaker 2 (30:23):
Yes, 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.
Speaker 1 (30:34):
I don't know that they necessarily have for school that
My oldest daughter, Zoe, she's the thirteen year old, she
has recently expressed a little bit of interest in cardiology
really for a possible career paths. 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
(30:57):
about cardiac nursing or cardiac nurse practitioner or something like that.
So we'll see what. Who knows what the future holds
for with where they might take it.
Speaker 2 (31:09):
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 want to get back. I
think when you've had a good experience in your child
is one of the survivors, you want to get back.
My way of giving back is podcasting because when I
(31:31):
see blood, I faint. So I would not make a
good doctor. Nobody wants me in the operating room, trust me,
so as being a father shaped the way you view
your health and the way you care for your health
differently than before you had children, I.
Speaker 1 (31:50):
Would say to an extent, but I think I have also
just always been cautious. I can't say I'm always cautious
in everything that I do and eat. I try to
make healthy choices at times, but then there's also the
times that life just gets busy and you eat on
the run. So I can't say that my diet is
(32:11):
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.
(32:35):
And 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 to balance. For sure. Obviously, there's going to
(32:56):
be times when all you need to do is just
sit down in the chair and rest. It just kind
of goes back to understanding your body and what you
need to do at that moment.
Speaker 2 (33:05):
Yeah, and it's okay to sit down in your chair,
grab your kid and pop them in your lap and
read a book. 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
(33:27):
in a very real way that's not quite as physically
active or taxing when you've already been active all day at.
Speaker 1 (33:34):
Work, for sure. Yeah. Yeah, just being there and being
present and doing what you can do to participate in
to be with the family. Sure, how do you.
Speaker 2 (33:45):
Cope with the mental and emotional aspects of living with
a child, just especially since you just told us the
possibility of transplant is out there, that's something that can
really weigh on people.
Speaker 1 (34:00):
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 help has not been the best. Right now,
(34:21):
I feel like I'm in a pretty good situation physically
and mentally, but there have 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
(34:41):
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 me, I think, to
(35:01):
talk with people who understand and get it. You know. Yeah,
they're trying to pay a counselor who has never been there.
Speaker 2 (35:09):
So by that fond One conference that you went to.
Speaker 1 (35:14):
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 sometimes the therapy and the medications and stuff out
there are the greatest go to that there's other outlets
that you can find. Sometimes it's just finding Abby's and
(35:37):
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.
Speaker 3 (35:49):
Yeah.
Speaker 2 (35:49):
For me, writing is my best therapy, but prayer, meditation,
lighting a candle, saying a prayer for somebody else always
helps me. Stephen, Yeah, yeah. Ali Hinkle Heart Foundation has
a special program called Ali's Branch where they actually have
counselors who work with people like us, work with families
(36:10):
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. Yeah, Because you're right. If you
go to the hospital or a clinic and 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
(36:32):
actually have seen a couple of counselors 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.
Speaker 1 (36:46):
It's tough.
Speaker 2 (36:47):
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 gathers, nations, being on
a transplant list. It's a never ending stream of different
types of obstacles I have to be overcome, and yet
(37:09):
I'm so impressed with the resilience I see in people
in our community.
Speaker 1 (37:15):
It inspires me absolutely.
Speaker 2 (37:17):
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 from a big storyteller, and I love hearing other
people's stories for sure.
Speaker 1 (37:37):
Yes, and again, thank you so much.
Speaker 2 (37:41):
Oh well, I wasn't fishing for that, but thank you
for saying that.
Speaker 1 (37:45):
Yeah.
Speaker 2 (37:46):
I loved listening to you talk at the fun One conference,
and I'm so glad that that was virtual as well
as in person. But Stephen, now I'm feeling like, Okay,
we have to go, Stephen, because there is so much
of an advantage it's kind of like summer camp for
grown ups. Yeah, go to a conference like that. We
get to learn, we get to share stories with each other,
(38:07):
we get to give real hugs, not just virtual hugs.
So yeah, I think I'm going to have to go
buy my ticket and plan on going. I've never gone
to that conference before. I've gone to the ACCHA, I've
gone to Mend It Little Hearts, I've gone to a
variety of art conferences, but that's one that I have
not been to yet.
Speaker 1 (38:24):
Yeah, it was a great experience.
Speaker 2 (38:25):
We have to meet and I have to meet your wife. Yes, Okay,
we're going to 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 HHS 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
(38:46):
to those parents?
Speaker 1 (38:48):
Yeah, for sure, there's so much more hope today than
there was thirty five forty years ago. There's great sayings
going on that are really advancing the life of single
ventrical heart disease. I was in Rochester, Minnesota this past week,
to experiment with the skin punch study that they are
(39:12):
doing at Artworks.
Speaker 2 (39:14):
I'm so excited to hear you're doing that. I think
what they're doing with heartworks.
Speaker 1 (39:20):
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 are hoping to
do with that. I think it goes back to there's hope,
(39:43):
and there's say 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 sasod of giving
up on their child, it's hard because I was given
a chance thirty eight years ago, and I'm so thankful
(40:06):
for the lives that I've been given. I think that
is even more prevalent today with the advances since then.
I would say, don't always hope.
Speaker 2 (40:16):
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, Well, of course I
don't want my baby to suffer, but I want my
baby to live. I wondered, is my baby going to
(40:39):
hate me? Because we did have cathorizations and surgeries and
medications and restrictions and all the things that we just
talked about. Really with this show, yeah, we're dealing with
a life of uncertainty. But you know what, we all
have a life of uncertainty. Sure, we just don't realize it.
Having this condition makes us more aware, which is a
(41:02):
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 every day matters. And I think
in a way that's a gift.
Speaker 1 (41:20):
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 for the curst or cursed. Yeah, yeah, that's
the word maybe I was looking for. Yeah.
Speaker 2 (41:39):
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 parent's 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 LHS. It was just a fluke. I don't
(42:00):
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 and that's what makes you guys rare. Yet it's
(42:22):
a number one birth effect, so it's not actually that way. Actually, yes,
is the fourth most common simple holes in the hard
ASDs and BSDs. Those are the most common, and a
lot of them close up on our own, which is
sure love late, but that's not what happens with actually.
Speaker 1 (42:38):
Ches right yeah wait, a little.
Speaker 2 (42:42):
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 doctor Timothy Nelson has
been on my program. I'll put links to the Heartworks
episodes as well, because now the chief heard that Steven
is taking part in this program, you may want to
(43:04):
know more about it. They're doing revolutionary new work with
hard Works. 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 ventrical hearts and what
(43:24):
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
(43:48):
and trying 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
stem cells, which to me is just it's fiction turned facts. Stephen.
Speaker 1 (44:05):
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 skin table out there to be used
on anyone. It's going to come back to you, right,
That's incredible.
Speaker 2 (44:22):
Yeah. Absolutely. They had a program several years ago and
I had a mom come on to 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.
(44:44):
And that's one of the advantages of 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, because you're part
of my family now.
Speaker 1 (45:01):
Stephen, thank you so much.
Speaker 2 (45:03):
Thank you so much for coming on a program today.
Speaker 1 (45:07):
It's been great. I appreciate it so much.
Speaker 2 (45:10):
I have a feeling you'll be coming back. Maybe have
you come back on with your wife sometime. That would
be fun.
Speaker 1 (45:15):
Yeah, we love that, that would be great, would be awesome.
Speaker 3 (45:20):
I want to thank Steven for sharing his story today.
What struck me in both Stephen'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. Stephen shows us that living
with half a heart doesn't limit one's ability to be
(45:41):
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 years,
I never would have met Jessica, or interviewed Stephen, or
(46:04):
built the community that is no heart to 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
(46:25):
our upcoming virtual retreat in September twenty twenty five. 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.
Speaker 2 (46:38):
To Heart with Anna join our Patreon group and become
part of the Heart to Heart circle.
Speaker 3 (46:44):
You're not just a listener, You're a co creator and
a movement for real organic storytelling. The link is in
the show notes. Until next time, my friends, remember you
are not alone.
Speaker 4 (46:58):
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 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.
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.
Speaker 2 (00:15):
Welcome to Heart to Heart with Anna.
Speaker 3 (00:18):
I'm Anna Chuworsky Hartman to Hope, my single ventricul daughter
who was born in nineteen ninety four. 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.
Speaker 2 (00:34):
How is 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.
Speaker 3 (00:47):
Stay tuned to hear Stephen Hutchison share his story of resilience,
faith and family.
Speaker 2 (00:56):
This year marks twelve years since I launched Heart to
Heart with.
Speaker 3 (01:02):
For nine of those years, I've attended podcast movement, my
go to conference.
Speaker 2 (01:06):
For continuing education.
Speaker 3 (01:08):
But this year was extra special because for the very
first time, six of us from Heart to Night the
Globe attended together in person. Michael Leban of Brie but
Still Me and Sherry Turner returned for their second podcast movement.
We also welcomed three first timers Ayrton Beattie and Nicole Billdo,
who both work on the HC podcasts in Genital Heart Conversations,
(01:32):
and Spencer Keaton, who like Sherry, 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
(01:55):
of the week as well. She not only helped with driving,
but she also surprised of all 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
(02:15):
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
(02:37):
a huge retreat. It wasn't our first before COVID I
hosted retreats in Jerusalem, Israel, Temple, Texas, and Husson, 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,
(02:58):
and decide what we'd like to bring into our podcasts
moving forward. We also enjoyed team building activities like podcast
speed dating and a gratitude web. We close with an
awards 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
(03:20):
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 instead of becoming a patron or
a volunteer today now for the news.
Speaker 2 (03:48):
Seeing our team.
Speaker 3 (03:49):
Give of their time, talent and treasure reminded me how
powerful generosity can be Sometimes it shows up in cooking meals,
of driving people where they need to go, or even
sharing a sacred tradition. Other times it shows up through advocacy,
research and storytelling that rip well outward to help countless families.
Speaker 2 (04:10):
That's why I'm especially proud to share today's.
Speaker 3 (04:12):
News about one of our own former guest and contributor
to the Heart of a Heart Warrior. Jessica Cohen has
received the Cardiac Neurodevelopmental Advocacy and Engagement Award for twenty
twenty five. Jess has dedicated her career to raising awareness,
furthering research, and supporting PhD families. She has served on
(04:37):
multiple committees with the Cardiac Neurodevelopmental Outcome Collaborative and currently
works at Laurie 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 help and change.
This award is one of the highest honors in the field,
(05:00):
and Jessica will be recognized alongside doctor Frank Casey this
September during the Sea Knock Scientific Sessions. Please join me
in celebrating her incredible achievement. Next up our interview with
our amazing heart warrior, Steven Hutchison.
Speaker 2 (05:18):
This content is not intended to be a substitute for
professional medical advice, diagnosis, or treatment. The opinions expressed in
a podcast are not those of Heart to unite the globe,
but of the hosts and guests, and are intended to
spark discussion about issues pertaining to congenital heart disease or bereavement.
Embark on a heartwarming odyssey with Baby Heart's Pressure gateway
(05:40):
to uplifting stories for the c HD community. Introducing the
Heart of a Heart Warrior book series inspiring those born
with heart effects 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 familiar support.
Visit Baby Heart's us dot com and be part of
(06:01):
our loving community uplifting hearts one story at a time.
Today's guest is Stephen Hutchison. Stephen is a thirty seven
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, Stephen underwent emergency surgery,
(06:23):
followed by a glen procedure at age three and the
fontine procedure at age five. Since then, he has faced
numerous medical events, including multiple cathorizations, echo cardiograms, and tests,
along with two twelve hour oblations in twenty twelve. Despite
his ongoing health challenges, Stephen strives to maintain a balance
(06:45):
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 Stephen.
Speaker 1 (06:59):
Thank you so much. It's great to be here.
Speaker 2 (07:01):
It's great to have you here and to learn more
about your life growing up with HLHS, especially with you
being thirty seven. I'm always tickled pick 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 Haart Warriors.
Speaker 1 (07:22):
I am thirty eight now I will.
Speaker 2 (07:23):
Say that, Oh my gosh, that's right. Happy birthday.
Speaker 1 (07:29):
May seventh is my birthday.
Speaker 2 (07:32):
Okay, Yes, And I learned about you last year at
a conference where I saw you speaking, so it has
been a little more since you sent me your forms.
I'm a July birthday baby, So yeah, we're both a
year older.
Speaker 1 (07:47):
Yes, I was in Saint Louis last year speaking at
the Dulton Genital Heart Day and the other events surrounding
that event in Saint Louis.
Speaker 2 (07:55):
I know I hope to go this year. Will you
be going this year? It's not in Saint Louis this year.
I think it's Indianapolis.
Speaker 1 (08:01):
It's in Indianapolis. I don't know if I'm gonna make
it yet.
Speaker 2 (08:04):
I want to go in person. If I can't go,
it's such.
Speaker 1 (08:07):
A better experience, I think to be there in person.
Speaker 2 (08:09):
If we do, we have to get our picture made. Yes, absolutely, Okay,
that would be awesome. So let's start by talking about
how you did growing up with Ahla just and how
that shaped your life as a child.
Speaker 1 (08:23):
Those early days. It was obviously before social media and
before you really even realize how widely spread con digital
heart disease is. I think at that time you kind
of felt like you were the only person in your
circle in your family. But if you're the only one
with a heart condition, you kind of feel like you're
(08:44):
that only person that really gets it. And 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 felt like I'm the only one
that really gets it. But I guess I grew up
be introduced the internet and social media into the picture.
(09:07):
You realize, so there are more people out there with
not just kim general heart disease, but HLHS specifically, And
I think that's really helped 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
(09:29):
my parents to let me live normally. I played baseball,
I played with my friends, I rode biked 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 is going to have that limitation,
(09:53):
as do we all. Steven Oh there, absolutely yeah.
Speaker 2 (09:58):
But I think learning 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.
Speaker 1 (10:12):
I have one older brother. Yeah.
Speaker 2 (10:14):
Did he treat you just like any older brother would
treat a younger brother.
Speaker 1 (10:18):
Absolutely? Uh.
Speaker 2 (10:22):
Yeah. Joey is my older child, and I called him
the normalizer because I wasn't allowed to treat my AHLHS
child with kid gloves, because Joey was there to set
the record straight.
Speaker 1 (10:33):
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, But he
was a true support. So it's a great family atmosphere
we have. I've had a lot of support. Very thankful
for that.
Speaker 2 (10:52):
Yeah, it's that yin and yang of brotherhood.
Speaker 1 (10:55):
Yeah. Absolutely, We've got.
Speaker 2 (10:56):
To be able to wrestle on the floor, but nobody
else is allowed to pay on you.
Speaker 1 (11:00):
That's right.
Speaker 2 (11:03):
I love it, that's right. How is growing up with
a single vtrical heart affected your daily life and your
view on your long term health?
Speaker 1 (11:12):
Obviously, growing up in through 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 sects from
the Fontaine. I'm thirty eight, so that Fontaine is now
(11:34):
I guess about thirty three years old, so it's definitely
taken its toll as well with the physical aspect of things,
with the circulation and Erico's veins coming from that, and
the physical aspect is definitely kind of paid a toll.
As I've gotten older, you.
Speaker 2 (11:55):
Have a classic Fontianne, right, yeah, And you didn't even
have a fenistrate of Fontane, did you.
Speaker 1 (12:03):
I'm trying to remember now. Actually, if it's fenestrated, I
want to say maybe it was.
Speaker 2 (12:09):
Okay, my daughters was also fenestrated, but I know that
she was one of the early ones to have it done,
and Shelby thirty one this year. So yeah, like I said,
you guys were really the pioneers, paying a way for
them to understand what that kind of physiology could do
to a person. So you said you have some condition,
she said, the Verico's veins. Is there concern about your liver?
Speaker 1 (12:32):
There is. I do have sald or fonte and associated
liver disease. Now. In fact, most recently we were in
Kansas City, which is where I'm seen now for my
adult in gettle Heart of following into City, Missouri. They
are looking more at the liver a lot more now.
Over the last couple of years, we did a echo
(12:56):
of the abdomen liver and a thought 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,
that cancer was coming into the picture because that is
something that is common with fontaine associated liver disease. So
(13:20):
we are taking a much more serious look at the
liver now going forward to safeguard against anything like that.
Speaker 2 (13:28):
It's amazing to me that you've had one fontiae and
only one. My daughter had to have a fontia revision.
And you're doing great. I mean, you're working your dad.
It sounds like you're very physically active. It's pretty amazing,
isn't it.
Speaker 1 (13:45):
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 to do and develop. And you know,
I can't imagine the thing the surge injury able to
go in there and do I can't comprehend how they
(14:08):
either do that.
Speaker 2 (14:09):
No, when you're a baby, and part is the size
of a walnut. You think, wow, how do you do that? Amazing?
It really amazing.
Speaker 1 (14:19):
It's incredible. But I go back to God gave them
the ability to do that, and God gave 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.
Speaker 2 (14:39):
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. What
has your cardiologist said to you regarding your long term health.
Speaker 1 (14:56):
I don't think we've really discussed as far 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.
Speaker 2 (15:12):
And that's what I was wondering about.
Speaker 1 (15:14):
Yep, yep, the same. 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
(15:36):
of depends on how I'm doing each six months or
each year when I go to see them, and what's changed,
How is the liver doing, how is the heart function.
Going back to what we were saying with the fontane
associated liver disease and the effect that fontine has on
the entire body, at this point, it's not just the
(15:57):
heart now, it's what are it doing to everything else?
That really is just kind of dependent on what's next
as far as how the body is reacting to that.
Speaker 2 (16:06):
For people who maybe don't understand what the big deal
is with the fontiane, the fontiane is a stage 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
(16:28):
to the entire body. And 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
(16:49):
what that means is that the body produces more red
blood cells so that it carries oxygen to the body appropriately.
So that's why most people with fontiane hearts will have
an oxygen saturation level that's a little bit lower than
somebody who has a poor chamber pumping heart. And all
(17:11):
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
(17:33):
have enough oxygen, and it can cause this fontane 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
fontaine physiology, so they're changed the name to fontane associated
liver disease. I'm wondering, how does having a family Stephen
(17:58):
affect your life with HLHI now that you're a daddy.
Speaker 1 (18:02):
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
(18:23):
medicine every day. And my oldest her name is Zoe,
she's thirteen now, 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
(18:43):
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 bake my heart strong? And
so it was kind of that distinguishing and making her
understand her heart was normal. Her heart I've had all
the chambers necessary and it was functioning correctly, whereas my
(19:07):
heart was not functioning correctly, and I've 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
(19:28):
that now. Now My kids are thirteen, eleven, 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 doctorate offices and seeing 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,
(19:51):
it was just helping them understand that I wasn't going
to be able to do all the physical things that
other dads might do. And that didn't mean that I
love them any less, obviously, but that there was going
to be differences in what I was able to do
and the things that I had to do to take care.
Speaker 2 (20:12):
Of the heart. Yeah, all of that makes sense. Were
you worried about your children's hearts when your wife was pregnant.
Speaker 1 (20:21):
I think we were naturally just being cautious. We did
have their hearts looked at and just kind of went
through that reassurance with echo cardiograms and had them checked
out to make sure that everything was functioning properly. And
we always had that reassurance that all of them are
(20:42):
hurt healthy, and obviously very thankful for that.
Speaker 2 (20:45):
Yeah, what a huge blessing. That's just huge.
Speaker 1 (20:48):
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 for fear
of passing on ADHD or HLHS specifically. They always acted
like my heart condition was just a flute. It was
(21:11):
just a lucky to draw, but not necessarily anything that
I should worry about passing on. So I'd never really
had that fear, I guess of having a family that obviously,
when it comes down to it, you're wanting to be cautious.
Speaker 2 (21:25):
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.
Speaker 1 (21:34):
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 thirty five days
in a nick you just because he was early.
Speaker 2 (21:53):
It was really hard.
Speaker 1 (21:54):
Yeah. He was due Thanksgiving Day twenty nineteen, and he
was induced on September twenty nights.
Speaker 2 (22:02):
Oh yeah, sinduced because your wife was having issues.
Speaker 1 (22:08):
Or yes, the placenta had torn in center. It was
basically emergency c section. So yeah, I gave us a
boyumps of kind of that newborn health scare. Even though
it was not heart disease. It was a very scary cord.
But he did very well and he's an excellent health today.
(22:32):
So it was more of just being early and getting
strong than being sick. He was always very strong.
Speaker 2 (22:39):
Well that's a huge blessing. Wow. Yes, Well that gave
you a better idea, probably than anything else 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, right.
Speaker 1 (22:55):
Yeah, because there was definitely that torn feeling of making
the girls did not feel abandoned, you know, being old
with the girls, while also trying to maintain time in
the hospital with him. So thankfully it was no longer
than thirty five days, but it was a long months,
you know for sure.
Speaker 2 (23:15):
Yeah, Oh, I'm sure that was probably the longest month
of your life. Hospital time is not fun time.
Speaker 1 (23:23):
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, right.
Speaker 2 (23:36):
Oh, I know, my heart just aches for the families
who had to go through any nick you pick you
or time in the hospital anywhere, because they were so restrictive.
If you would let a parent in there at all,
it was usually one at a time. Parents were not
given to kind of support that they really need when
you're dealing with having a child with the chronic illness
(23:57):
in the hospital. So yeah, wow, that was a blessing
that it was before COVID hit.
Speaker 1 (24:03):
Yeah. Absolutely.
Speaker 2 (24:07):
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.
Speaker 1 (24:17):
We do. Yeah, we've got a full plate for sure.
Mainly is 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,
(24:41):
so we have a community of help around us, which
I'm so thankful for. We help one another out, and
my parents had been a great help with our kids,
and my brother's kids and my brother and sister in
law help us out. We help them out when we can.
It is a battle. It's definitely say, make all the
(25:02):
work and the school and everything fit together and going
to church on the Lord's Day and all the things
that you feel like. So you need to fit in
and make time for and set priorities. Sometimes it gets
hectic and busy that just remembering what's important and trying
to set reminders for what truly matters that yeah, I
(25:25):
mean there's time who it feels overwhelming and they and
you just have to set that balance for sure.
Speaker 4 (25:38):
Heart to Heart with Anna is a presentation of Heart
to Unite the Globe and as 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 pretending to
the PhD community, please visit our website at www. Congenitalheartdefifts
(26:02):
dot com for information about CHD, the hospitals that treat
children with CHD, summer camps for HD survivors, and much
much more. 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
(26:24):
Anna Jaworski at Anna at Heart to heartwith Anna dot com.
That's Anna at Heart to Heart with Anna dot com.
Now back to Heart to Heart with Anna.
Speaker 2 (26:38):
Steven. What do you want your children to understand about
your condition and your experience of growing up with that
congital heart defect?
Speaker 1 (26:48):
That number one, I'm not able to do everything that
I may like to do. I played sports where I
was younger, and my oldest daughter 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 of years. My son played t ball, so there's
(27:10):
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 where I can do physically,
and I think that they're at a point now where
(27:32):
they get that. 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 to
try to get them to understand that without crushing them.
Speaker 2 (27:49):
You know, right, and you don't want to scare.
Speaker 1 (27:51):
Them, right, Absolutely, I would try to do things, but
then help them understand. You know, I've got to take
a break. I can't be out in this heat or
whatever it will 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,
(28:14):
but in the best scenario that they can comprehend, and
I think that they do now. Obviously my son is
still much younger and still kind of 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
(28:36):
the hospital. They understand that something is continually wrong with
my heart and that one hospital stay is not going
to fix it ongoing say yeah, and that was hard.
Speaker 2 (28:51):
I'm sure your parents experienced the same thing I did,
which is you bring your baby home from a hospital
and people are like, oh, good, is everything fixed? Now.
You hate to burst people's bubbles, but it's it's not.
It's never going to be perfectly fixed until they're with
God and their heart is the way God made it
and it's perfect for them, but it's not like ours.
Speaker 1 (29:15):
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 relocate somewhere when we're not just looking
at the heart, we're looking at the liver, and it's
going to be both of them. And even with that,
(29:35):
it's still not a perfect fix because you're replacing one
set of issues with another one, and 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
(29:57):
and telling them this is what's going on, 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 oath to tell us
the truth of what's going on.
Speaker 2 (30:15):
Yes, so your girls are teenagers now, right? Did you
say both of them are teens or do you have
a teen.
Speaker 1 (30:21):
And a twein thirteen in eleven?
Speaker 2 (30:23):
Yes, 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.
Speaker 1 (30:34):
I don't know that they necessarily have for school that
My oldest daughter, Zoe, she's the thirteen year old, she
has recently expressed a little bit of interest in cardiology
really for a possible career paths. 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
(30:57):
about cardiac nursing or cardiac nurse practitioner or something like that.
So we'll see what. Who knows what the future holds
for with where they might take it.
Speaker 2 (31:09):
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 want to get back. I
think when you've had a good experience in your child
is one of the survivors, you want to get back.
My way of giving back is podcasting because when I
(31:31):
see blood, I faint. So I would not make a
good doctor. Nobody wants me in the operating room, trust me,
so as being a father shaped the way you view
your health and the way you care for your health
differently than before you had children, I.
Speaker 1 (31:50):
Would say to an extent, but I think I have also
just always been cautious. I can't say I'm always cautious
in everything that I do and eat. I try to
make healthy choices at times, but then there's also the
times that life just gets busy and you eat on
the run. So I can't say that my diet is
(32:11):
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.
(32:35):
And 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 to balance. For sure. Obviously, there's going to
(32:56):
be times when all you need to do is just
sit down in the chair and rest. It just kind
of goes back to understanding your body and what you
need to do at that moment.
Speaker 2 (33:05):
Yeah, and it's okay to sit down in your chair,
grab your kid and pop them in your lap and
read a book. 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
(33:27):
in a very real way that's not quite as physically
active or taxing when you've already been active all day at.
Speaker 1 (33:34):
Work, for sure. Yeah. Yeah, just being there and being
present and doing what you can do to participate in
to be with the family. Sure, how do you.
Speaker 2 (33:45):
Cope with the mental and emotional aspects of living with
a child, just especially since you just told us the
possibility of transplant is out there, that's something that can
really weigh on people.
Speaker 1 (34:00):
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 help has not been the best. Right now,
(34:21):
I feel like I'm in a pretty good situation physically
and mentally, but there have 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
(34:41):
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 me, I think, to
(35:01):
talk with people who understand and get it. You know. Yeah,
they're trying to pay a counselor who has never been there.
Speaker 2 (35:09):
So by that fond One conference that you went to.
Speaker 1 (35:14):
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 sometimes the therapy and the medications and stuff out
there are the greatest go to that there's other outlets
that you can find. Sometimes it's just finding Abby's and
(35:37):
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.
Speaker 3 (35:49):
Yeah.
Speaker 2 (35:49):
For me, writing is my best therapy, but prayer, meditation,
lighting a candle, saying a prayer for somebody else always
helps me. Stephen, Yeah, yeah. Ali Hinkle Heart Foundation has
a special program called Ali's Branch where they actually have
counselors who work with people like us, work with families
(36:10):
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. Yeah, Because you're right. If you
go to the hospital or a clinic and 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
(36:32):
actually have seen a couple of counselors 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.
Speaker 1 (36:46):
It's tough.
Speaker 2 (36:47):
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 gathers, nations, being on
a transplant list. It's a never ending stream of different
types of obstacles I have to be overcome, and yet
(37:09):
I'm so impressed with the resilience I see in people
in our community.
Speaker 1 (37:15):
It inspires me absolutely.
Speaker 2 (37:17):
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 from a big storyteller, and I love hearing other
people's stories for sure.
Speaker 1 (37:37):
Yes, and again, thank you so much.
Speaker 2 (37:41):
Oh well, I wasn't fishing for that, but thank you
for saying that.
Speaker 1 (37:45):
Yeah.
Speaker 2 (37:46):
I loved listening to you talk at the fun One conference,
and I'm so glad that that was virtual as well
as in person. But Stephen, now I'm feeling like, Okay,
we have to go, Stephen, because there is so much
of an advantage it's kind of like summer camp for
grown ups. Yeah, go to a conference like that. We
get to learn, we get to share stories with each other,
(38:07):
we get to give real hugs, not just virtual hugs.
So yeah, I think I'm going to have to go
buy my ticket and plan on going. I've never gone
to that conference before. I've gone to the ACCHA, I've
gone to Mend It Little Hearts, I've gone to a
variety of art conferences, but that's one that I have
not been to yet.
Speaker 1 (38:24):
Yeah, it was a great experience.
Speaker 2 (38:25):
We have to meet and I have to meet your wife. Yes, Okay,
we're going to 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 HHS 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
(38:46):
to those parents?
Speaker 1 (38:48):
Yeah, for sure, there's so much more hope today than
there was thirty five forty years ago. There's great sayings
going on that are really advancing the life of single
ventrical heart disease. I was in Rochester, Minnesota this past week,
to experiment with the skin punch study that they are
(39:12):
doing at Artworks.
Speaker 2 (39:14):
I'm so excited to hear you're doing that. I think
what they're doing with heartworks.
Speaker 1 (39:20):
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 are hoping to
do with that. I think it goes back to there's hope,
(39:43):
and there's say 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 sasod of giving
up on their child, it's hard because I was given
a chance thirty eight years ago, and I'm so thankful
(40:06):
for the lives that I've been given. I think that
is even more prevalent today with the advances since then.
I would say, don't always hope.
Speaker 2 (40:16):
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, Well, of course I
don't want my baby to suffer, but I want my
baby to live. I wondered, is my baby going to
(40:39):
hate me? Because we did have cathorizations and surgeries and
medications and restrictions and all the things that we just
talked about. Really with this show, yeah, we're dealing with
a life of uncertainty. But you know what, we all
have a life of uncertainty. Sure, we just don't realize it.
Having this condition makes us more aware, which is a
(41:02):
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 every day matters. And I think
in a way that's a gift.
Speaker 1 (41:20):
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 for the curst or cursed. Yeah, yeah, that's
the word maybe I was looking for. Yeah.
Speaker 2 (41:39):
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 parent's 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 LHS. It was just a fluke. I don't
(42:00):
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 and that's what makes you guys rare. Yet it's
(42:22):
a number one birth effect, so it's not actually that way. Actually, yes,
is the fourth most common simple holes in the hard
ASDs and BSDs. Those are the most common, and a
lot of them close up on our own, which is
sure love late, but that's not what happens with actually.
Speaker 1 (42:38):
Ches right yeah wait, a little.
Speaker 2 (42:42):
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 doctor Timothy Nelson has
been on my program. I'll put links to the Heartworks
episodes as well, because now the chief heard that Steven
is taking part in this program, you may want to
(43:04):
know more about it. They're doing revolutionary new work with
hard Works. 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 ventrical hearts and what
(43:24):
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
(43:48):
and trying 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
stem cells, which to me is just it's fiction turned facts. Stephen.
Speaker 1 (44:05):
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 skin table out there to be used
on anyone. It's going to come back to you, right,
That's incredible.
Speaker 2 (44:22):
Yeah. Absolutely. They had a program several years ago and
I had a mom come on to 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.
(44:44):
And that's one of the advantages of 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, because you're part
of my family now.
Speaker 1 (45:01):
Stephen, thank you so much.
Speaker 2 (45:03):
Thank you so much for coming on a program today.
Speaker 1 (45:07):
It's been great. I appreciate it so much.
Speaker 2 (45:10):
I have a feeling you'll be coming back. Maybe have
you come back on with your wife sometime. That would
be fun.
Speaker 1 (45:15):
Yeah, we love that, that would be great, would be awesome.
Speaker 3 (45:20):
I want to thank Steven for sharing his story today.
What struck me in both Stephen'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. Stephen shows us that living
with half a heart doesn't limit one's ability to be
(45:41):
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 years,
I never would have met Jessica, or interviewed Stephen, or
(46:04):
built the community that is no heart to 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
(46:25):
our upcoming virtual retreat in September twenty twenty five. 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.
Speaker 2 (46:38):
To Heart with Anna join our Patreon group and become
part of the Heart to Heart circle.
Speaker 3 (46:44):
You're not just a listener, You're a co creator and
a movement for real organic storytelling. The link is in
the show notes. Until next time, my friends, remember you
are not alone.
Speaker 4 (46:58):
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 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.
Popular Podcasts
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
My Favorite Murder with Karen Kilgariff and Georgia Hardstark
My Favorite Murder is a true crime comedy podcast hosted by Karen Kilgariff and Georgia Hardstark. Each week, Karen and Georgia share compelling true crimes and hometown stories from friends and listeners. Since MFM launched in January of 2016, Karen and Georgia have shared their lifelong interest in true crime and have covered stories of infamous serial killers like the Night Stalker, mysterious cold cases, captivating cults, incredible survivor stories and important events from history like the Tulsa race massacre of 1921. My Favorite Murder is part of the Exactly Right podcast network that provides a platform for bold, creative voices to bring to life provocative, entertaining and relatable stories for audiences everywhere. The Exactly Right roster of podcasts covers a variety of topics including historic true crime, comedic interviews and news, science, pop culture and more. Podcasts on the network include Buried Bones with Kate Winkler Dawson and Paul Holes, That's Messed Up: An SVU Podcast, This Podcast Will Kill You, Bananas and more.