July 30, 2025 • 34 mins
What happens when your child needs heart surgery, but the operation keeps getting postponed? How do you navigate a complex healthcare system while still supporting other families going through similar struggles? Candice Swartland takes us deep into this reality from Cape Town, South Africa.
Candice's journey began when her son Riley was diagnosed with Tetralogy of Fallot shortly after birth—despite monthly ultrasounds during pregnancy that detected nothing wrong. Through three open-heart surgeries and the constant waiting for a fourth, Candice discovered strength she never knew she had. "Despite whatever you are going through," she shares, "you and your family and your kid with heart disease, you are still there for the next heart parent."
The striking differences between CHD care in South Africa versus more developed nations become clear as Candice describes the waiting game for surgeries, where emergency cases repeatedly push Riley's procedure further down the list. Yet amidst these challenges, something beautiful emerges: a global community of heart families connected by shared experiences that transcend borders.
Perhaps most inspiring is how Riley defied medical expectations. Doctors predicted he would never attend a normal school, yet today he's a top student in his class. Even more remarkable, both Riley and another heart warrior have become advocates themselves, running awareness programs at their school.
This conversation reveals the universal truths of the CHD journey: the fear, the faith that sustains us, and the power of community. As Candice powerfully states, "Your child is my child. Together, we are one." Her words remind us that whether in South Africa or anywhere else in the world, heart families share a profound connection that makes us stronger together.
Links discussed in the episode:
The Cure Gala: https://www.buildingthecure.org/events
Brave Little Hearts South Africa: https://www.facebook.com/BraveLittleHeartsSA
Become a supporter of this podcast: https://www.spreaker.com/podcast/heart-to-heart-with-anna--1256958/support.
Candice's journey began when her son Riley was diagnosed with Tetralogy of Fallot shortly after birth—despite monthly ultrasounds during pregnancy that detected nothing wrong. Through three open-heart surgeries and the constant waiting for a fourth, Candice discovered strength she never knew she had. "Despite whatever you are going through," she shares, "you and your family and your kid with heart disease, you are still there for the next heart parent."
The striking differences between CHD care in South Africa versus more developed nations become clear as Candice describes the waiting game for surgeries, where emergency cases repeatedly push Riley's procedure further down the list. Yet amidst these challenges, something beautiful emerges: a global community of heart families connected by shared experiences that transcend borders.
Perhaps most inspiring is how Riley defied medical expectations. Doctors predicted he would never attend a normal school, yet today he's a top student in his class. Even more remarkable, both Riley and another heart warrior have become advocates themselves, running awareness programs at their school.
This conversation reveals the universal truths of the CHD journey: the fear, the faith that sustains us, and the power of community. As Candice powerfully states, "Your child is my child. Together, we are one." Her words remind us that whether in South Africa or anywhere else in the world, heart families share a profound connection that makes us stronger together.
Links discussed in the episode:
The Cure Gala: https://www.buildingthecure.org/events
Brave Little Hearts South Africa: https://www.facebook.com/BraveLittleHeartsSA
Become a supporter of this podcast: https://www.spreaker.com/podcast/heart-to-heart-with-anna--1256958/support.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Despite whateva you are going through you and your family,
and you'll feed you with old disease. You'll all Stoley
for the Nicks, Old ben ugn shee your story and
ba Biganopol for the Nicks.
Speaker 2 (00:15):
So one, Hello friends, and welcome back to Heart to
Her with Anna, I'm so glad you're here with me today.
I'm Anna Towrsky Heart, mom to an amazing adult with
a single ventricul heart who turns thirty one years old
in August twenty twenty five. Hence this episode, we're taking
a trip halfway around the world to hear from Candace
(00:37):
Schwarzlin Afrid mom from South Africa. Candace shares her powerful
story about her son's congenital heart defect and the challenges
of navigating the healthcare system in her country, and how
she became a volunteer for Brave Little Heart South Africa.
When re recorded this conversation, she was still anxiously awaiting
(00:59):
persons next open heart surgery, which was yet to be scheduled.
But I'll have an exciting update about that a little
later in the show. First, let's take a moment for
the c HD News. If you've got your calendar nearby.
Go ahead and mark this one down. The Cure Gala
(01:19):
is happening on September twenty seventh, twenty twenty five, at
the Cable Center in Denver, Colorado. This is the third
annual black tied charity ball benefiting children born with congenital
heart defects. The evening will feature silent and live auctions,
the prestigious Cure Awards, live entertainment, and an update on
(01:40):
groundbreaking research by doctor Doris Taylor, who is working to
build an entire human part from stem cells. Yes you
heard that right. This is science fiction turned science fact.
Sponsorship opportunities are still available, so if you're looking for
a meaningful way to give back and enjoy a night
(02:01):
of elegance with others in the PhD community, this may
be the perfect event for you. I'll include a link
in the show notes so you can learn more. Before
we dive into today's conversation, I want to take a
moment to share a little bit of what's been going
on behind the scenes. You may have noticed that twenty
twenty five has been a bit rocky in terms of
(02:23):
podcast consistency, and I appreciate your patients more than you know.
After breaking my wrist. Earlier this year, my usual routine
was completely thrown off. The all nighters I used to
pull to meet podcast deadlines, they have been replaced by
some forced dressed and believe me, rest is not my
(02:44):
strong suit. On top of that, I've been traveling more
often to Florida to support my son, and like many
of you, I faced some painful family challenges, including grandparent alienation.
I won't go into the details here, but I will
say that if you're walking through something hard right now,
you are not alone. Despite it all, we're still committed
(03:08):
to four episodes a month, and we're making a small
change in how we do that. From now on, we'll
continue to bring you two brand new episodes each month,
one live show for our amazing patrons and volunteers, and
we're moving our community chat from Discord over to Zoom
for a more.
Speaker 3 (03:26):
Accessible and interactive experience. And when I need to recharge,
I head out to my garden. If you've seen the
latest pictures on Facebook, you.
Speaker 2 (03:36):
Know my Molineaux roses are in full bloom, along with
the other antique roses in my front yard and my
Julia Chad roses on the side of my house. Since
last year's tornado destroyed our beautiful ash tree. I've added
some Texas lilacs and a red blud tree in memory
of a very special HD angel. Now on to the backyard.
(03:58):
That's Frank's domain. That's where Juwarski Park comes alive with
umbrella plants, elephant ears, lantana, and a fig tree so
big you could probably qualify for its own zip code.
And of course it's all guarded by a six foot
tall t rex, a baby triceratops, a few velociraptors, and
are ever watchful of a raptor. Our poor pterodactyl was
(04:21):
knocked out of its purge by last year's tornado and
is currently undergowing some much needed repairs. But it'll be
flying again soon. Life may not always go as planned,
but like any good garden, it still grows surprises and delights.
This content is not intended to be a substitute for
professional medical advice, diagnosis, or treatment. The opinions expressed in
(04:44):
the podcast are not those of Hearts to Night the Globe,
but of the hosts and guests, and are intended to
spark discussion about issues pertaining to congenital heart disease. Or bereavement.
Today's says Candace Falcon Swortland from Cape Town, South Africa,
Cannavast and her husband our parents to Riley and Chase.
(05:08):
Riley had his first heart surgery at twenty days old
and has had three open heart surgeries. He is currently
waiting for another heart repair. Canvas represents Brave Little Heart
South Africa, a local congenital heart defect or CHD nonprofit
run by Rodia Matthews and Radia is our producer today.
(05:30):
So thank you Rodia for producing the program today. Thank Canada.
Speaker 1 (05:34):
I'm very happy to be well.
Speaker 2 (05:36):
I'm so happy to have you here because after we
record this program, friends, we are going to record our
first show in Afrikaans and Radia will be the guest
host and I will be the producer for that program.
But first let's get to know Candace. Welcome to Hard
to Heart with Danna Candas.
Speaker 1 (05:56):
Hi, I'm happy to be you.
Speaker 2 (05:58):
Oh, I'm so happy to talk to you, sweetie. Let's
start by learning a little bit more about Riley. Candice,
what is the name of his heart.
Speaker 1 (06:06):
Defect tetronog of Belen and his valves are blocked and
ye a holo.
Speaker 2 (06:15):
Okay, Tetralogy of Philow is a very common heart efect
and it was one of the first critical congenital heart
effects that children were operated on successfully, and it was
also known as blue baby syndrome. I mean, but.
Speaker 1 (06:32):
Used to say that he's smuffed because they used to
be blue.
Speaker 2 (06:36):
Yes, yes, you see. Nobody wants to hear that their
baby's a smart baby. But we all know exactly what
you mean. It's funny because my daughter was not born
with tetrology of Philow. However, when she was about ten
years old, she was doing taekwondo and she would be
(06:59):
running laps in the dojo. Her heart was not doing
as well at that time as we would have liked
it to have been, so by the time she did
the second or third lap, the tip of her nose
turned blue and her fingertips turned blue.
Speaker 1 (07:12):
Okay.
Speaker 2 (07:13):
Plus, she was also on the swim team, and when
she would go into really cold water, her nose would
turn blue and her lips would turn purple, and I
would have to snatch her out of the water and
warm her up with the towel. Then when she was
warm enough, I could let her go in. Finally, after
complaining about it to some other heart moms. Somebody said,
(07:34):
why don't you get a wet suit? So I asked
the swim coach if she could have a wet suit,
and he said, well, she can have a wet suit
when we're practicing, but if she wants to go to competition,
that would give her too much of an unfair advantage.
And she said, I don't have to compete. I just
want to swim with the local kids. As soon as
(07:57):
I got her that wet suit, oh my gosh, it
made such a huge difference for her. Now, your child
is black, do they look blue the same way that
I mean? I'm very white, So the blue is really
blue for.
Speaker 1 (08:13):
Now you can actually see it like he usually turns
blue at the fingertips and at times if it is
really bad. Didn't stung even.
Speaker 2 (08:24):
That's what I had heard was that you could tell
in the mouth more easily when a child is dark skinned. Interesting.
So we learned in the introduction that Riley has had
three open heart surgeries. Can you tell me about what
kinds of surgeries he's had and where he had them?
Speaker 1 (08:43):
Yed one on the lead and one on the right
of his sides of his robes, and then ed two
in the middle of his trees. Currently is three shanks,
but only two or current blue work. That's why he
is awaiting to have result.
Speaker 2 (09:03):
Repeat, Oh my goodness.
Speaker 1 (09:06):
And you're waiting for a few years already because at
first he was too small yet to gain some white
and ye had to growl. But right now they're saying
it's perfect. Now he's got the weight. He is grown.
But now each time when it's it's not like it's
(09:28):
an emergency. So children that need to go for emergency
surgeries or seen before him. So each time a kids postponed,
so this is probably not as urgent as an urgent
case to be done. So we just got to have patients.
Speaker 2 (09:51):
Where is he having a surgery? Is it there in
South Africa?
Speaker 1 (09:56):
Just in South Africa at the Red Cross Children's Hospital.
Speaker 2 (10:00):
Okay, it must be scary for you to be sitting
on pins and needles waiting to see when they're going
to do the supper.
Speaker 1 (10:10):
Really, because each time you prepare yourself mentally, sure and
things you can prepay yourself, and then when it's your time,
there not canceling it because it needs to be done.
But then they all postponing each time.
Speaker 2 (10:26):
Oh my goodness, that actually happened to me with the
second surgery for my daughter, but it was my fault, Candice,
and I was terrified. We had the second surgery scheduled
and it was springtime in central Texas, so I went
outside to mow the grass because you could be gone
for weeks and I didn't want to come back to
(10:47):
a jungle. I had three quarters of an acre. I
know how high the grass can row in springtime, so
it was a beautiful spring day. I had all the
windows open and I mowed the grass. And the next
day my little one woke up with a runny nose
and ill. It was allergies. I knew salergies because I
(11:08):
had just moaned the grass and there was no fever,
no vomiting, nothing, And we still had a week before
the surgery. I didn't know it the day before. We
still had a week. But I called the nurse that
worked with the surgeon and I said, look, I really
think it's just allergies. I don't think it's a big deal.
She said, we'll go to the pediatrician, but I can
(11:30):
tell you already, if there's a running nose, the surgery
will be based done that year. He is and I said, really,
if I took my baby to the pediatrician and had
the pediatrician check her out, there was nothing, he said,
it's just allergies. I wouldn't worry about. There's no fever,
there are no other signs that there's an infection. It
didn't matter. It didn't matter. They postponed it by a month,
(11:54):
and I worried every single day.
Speaker 1 (11:57):
That does it feel like anything?
Speaker 2 (12:00):
I'm worried what if something happens to her? And it's
all because I mowed the grass. So I did not
mow my grass. After that, I was like, you know,
what can you be joungle? I don't care. I told
my next door neighbor what had happened, and she saw.
I was just devastated because the surgery had to be
have spouned. And when I came home, my grass was
(12:22):
all known. One of my neighbors came over while we
were gone. Then it's so awesome, and they never came forward.
I don't know who did it. People are pretty amazing sometimes. Okay,
So I know from working with Global Arch that most
children in Africa who have heart defects don't survive childhood.
(12:46):
Can you give us a piece of helpful advice to
those parents who are in Africa and have a child
with a heart defect.
Speaker 1 (12:54):
That these very very scary the first sto years. But
if we were in and out of hospital a lot,
so it was very scary because it was something new
as well. So whenever he even just said runny nose,
I wouldn't just take him to the normal pedia attention,
(13:17):
I'll taking straight to hospital and we would get there
and I just knew we are going to be admitted.
It doesn't meant how serious it was. Wow, mild was
I just knew we are staying like that was home
away from home.
Speaker 2 (13:37):
Wow.
Speaker 1 (13:38):
Really even his first birthday was celebrated in hospital, but
it was not said. But at hospital we went to
development clinics and they said it's going to be very
slow and he would never be able to attend the
normal school. And I said, at the end of the day,
(13:58):
it's also not to what the doctor say. Because we
believe in our creator and esperience. We pray, yes, Hi,
pray all that he attainds a normal school. He is
currently in grade four and it does very well at school.
He's one of the top students in scholars.
Speaker 4 (14:24):
Heart to Heart with Anna is a presentation of Hearts
Unite the Globe and is part of the hug podcast network.
Hearts Unite the Globe is a nonprofit organization devoted to
providing resources to the congenital heart defect community to uplift, empower,
and enrich the lives of our community members. If you
would like access to free resources pertaining to the HD community,
(14:45):
please visit our website at www. Congenitalheartdefects dot com for
information about HD, the hospitals that treat children with HD,
summer camps for HD survivors, and much much more. You
(15:05):
are listening to Heart to Heart with Anna. If you
have a question or comment that you would like to
addressed on our show, please send an email to Anna
Jaworski at Anna at Heart to Heart with Anna dot com.
That's Anna at Hard to Heart with Anna dot com.
Now back to Heart to Heart with Anna.
Speaker 2 (15:27):
I learned from Radia Matthews that you're one of the
volunteers that works with Brave Little Heart South Africa. So
can you tell me, Candice, when you first became involved
with that nonprofit and why.
Speaker 1 (15:42):
I actually meet Radia and her husband at the hospital.
They called the group already and they were always offering
hell even if it was just a kind word to
other more appearance at all people, and that is when meeting.
(16:02):
But Radia was always a behind of scenes kind of person.
Husband was always the one doing the talking. Yes, but
that is actually when it really started. But that wasn't
that active. Then things just developed over the years.
Speaker 2 (16:24):
So did you get involved before COVID or after COVID?
Speaker 1 (16:28):
Off the COVID But that's been thought of the group
since before COVID.
Speaker 2 (16:33):
Already, Okay, so for quite a while. Then, Yes, that's
wonderful And I can totally understand why you got involved
because I met for Reid before I met Radya. I
met him online. I never had the pleasure always Milan, Yes,
I never had the pleasure of meeting him in person.
Unfortunately I did it to meet Radia in person, and
(16:56):
we'll be talking about that later. But he was just
such a personality, wasn't he. I mean, he just the
most ample, Yes, very harmful, but very passionate, and he
wanted to change things in Africa. I was so proud
of him. He was one of the first people I
(17:17):
met from Africa who was really actively doing something to
change yeah, flight of children in Africa, especially South Africa.
So what do you believe is the biggest challenge that
people in your country face if they have a child
with a heart condition.
Speaker 1 (17:37):
I would think that most people don't know when children
is old condition because it's not a visible Yeah, I
was thinking child is normal, not finances because outside hospitals
does provide the medical key, but it is stuff. A
(18:01):
lot of parents do lose hope also because perhaps they
don't have the kind of support they wed with private adults.
Speaker 2 (18:11):
Yes, it isn't visible artifact. And do you feel that
all of the pediatricians are aware of heart effects and
know what to look for and babies who might have
a heart effect.
Speaker 1 (18:26):
I'm not true. I don't think so because I was
not attending a state hospital during my pregnancy with Riley.
I was private and medical hospital and they told me
my baby is perfectly fine and healthy. And in the
(18:46):
day it was born, that is when we discovered the
is of condition.
Speaker 2 (18:53):
Oh wow, did you have ultrasounds then?
Speaker 1 (18:56):
Yes, every man, Oh my goodness, everything yes. And they
even did do the town syndrome tiaste and all of that.
They said, everything is perfectly fine. Wow, And he was
born a few monutes, no, he was born. And then say,
(19:19):
about two hours after he was born, the pediatrician came
to me and said, it's something wrong with your baby,
and I said what, and they said, something wrong with
your baby's ord. And I just started crying because how
can they be something wrong when everything was perfectly fine.
(19:40):
I did not know what was HD back then, because
how can a baby every old condition. I just thought,
isn't that normally what happens to adults.
Speaker 2 (19:52):
Yeah, I think that's what most people think. Most of
us who don't have a trouble with our heart effect
associate heart attacks with people who are older, who are obese,
who smoke, who drink, and of course our baby hasn't
done any of those things. Yes, yeah, I had three
(20:13):
ultrasounds and they never detected anything was wrong with my
baby either. But my baby's thirty so they were very
grainy ultrasounds. They were not very good. They just written
as far as technology back then. So I'm shocked that
you had one every single month and it was not
(20:34):
picked up. Did you ever go back to the doctor
and say, here's the interesting thing with my last ultrasound.
The only reason why I had one was because we
were disputing when the baby was stue. They did one
more to beat the measurements, and they gave me, because
this is how long ago that was, they gave me
(20:56):
a VHS tape ordering that bar EHS. Yes, now it
would be on a CD, or it would just be digital.
It wouldn't even be on a CD. Yes, but I
had a VHS tape. And when we switched pediatric cardiologists
when she was new, he asked me about that. He said, oh,
(21:19):
I would love to see that ultrasound and I said okay.
So I brought it into her next appointment and I said,
could you see something? And he said, Anna. The only
reason why I could see it was because I was
looking so intently for it. But they didn't ducked that
ultrasound specifically looking at the heart. You know. We saw
(21:42):
the heart was beating. And I even remember that there
wasn't a whole lot that was identifiable, the head, the feet,
the hands, but you could see the heart beating. But
it wasn't like the kind of ultrasounds they do nowadays.
Good heavens, my granddaughter.
Speaker 1 (21:59):
Something is at all well.
Speaker 2 (22:00):
They have three D three D ultrasounds. I mean I
could see my granddaughter's face before she was born. It
was so precious. I'm shocked that it was not picked up,
and I must have been devastating for you.
Speaker 1 (22:15):
It was, it really was. It made me very strong
as well.
Speaker 2 (22:21):
Yes, it does, doesn't it. We find a strength that
we didn't even know we had.
Speaker 1 (22:26):
Yes.
Speaker 2 (22:27):
What is the most important lesson, Candice, that you have
learned by being an advocate with Brave Little Hearts?
Speaker 1 (22:35):
Despite whatever you are going through, you and your family
and your kid with all disease, you are stoldy for
the knicks, old bearent. You can see your story and
be a big enough hold for the nicks one.
Speaker 2 (22:51):
I love that. That is beautiful. Embark on a heartwarming
odyssey with Baby Hearts Pressured Gateway to uplifting stories for
the sea 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
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(23:13):
celebrating strength, love and familiar support. This is it, Baby
heartspress dot com and be part of our loving community
uplifting Hearts one story at a time. Henders, I'm sure
that you're a busy mob. Since you have two children
under the age of ten, how do you find the
time to volunteer.
Speaker 1 (23:34):
It's very odd. I am currently working in Riktaila as well.
Speaker 2 (23:39):
Well.
Speaker 1 (23:39):
It is very thick, but we do that.
Speaker 2 (23:43):
What kind of work do you do as a volunteer?
Like the laws?
Speaker 1 (23:50):
They had a advocacy program at Ralei's school. Ali Enza
Kira was running the show.
Speaker 2 (24:00):
Oh how awesome are them? Yes, not only are you advocating,
not only are you volunteering, but Riley's doing it too.
Speaker 1 (24:12):
Yes, he speaks for himself.
Speaker 2 (24:16):
Oh my goodness, And it's amazing what these kids pick up,
isn't it. Yes, very he's friends with Bakara.
Speaker 1 (24:27):
Yes, that's all of them. At first they used to
be very shy mm hmm, but as they grew older
they came out of this shell.
Speaker 2 (24:40):
Mm hmm. I think it helps our kids when they
know they're not the only one.
Speaker 1 (24:46):
Yes.
Speaker 2 (24:47):
Are there summer camps for children with heart defects in
South Africa?
Speaker 1 (24:52):
No? They are not, not that I know of.
Speaker 2 (24:56):
Mm hmm. We do have some here in the Uni States.
My child never wanted to go to them. There weren't
a whole lot when she was young. And she didn't
want to be singled out by her heart condition, even
though I know it would be good for her to go.
We actually went to one that was for families called
Camp Joy in Ohio one year, and I was this speaker.
(25:19):
And the great thing about that was they had sessions
for parents, they had sessions for the siblings, and they
had sessions for the heart warriors. And the heart warriors
actually made a quilt. They finger painted, they put their
handprints on cloth, and then they had volunteers who were
going to make all of the handprints into a quilt.
(25:42):
And I thought that was really something special, something sweet.
Speaker 1 (25:46):
That's all.
Speaker 2 (25:48):
It really was neat. And I hope that maybe that's
something that will happen in your country, because I think
there is strength for the children when they come to
know others who have this same condition. It kind of
takes away the stigma because, like we said, this isn't invisible.
Speaker 1 (26:07):
Like they don't also want to be singled out. Oh.
Speaker 2 (26:12):
I know, Hope hated it when I would pull her
out of the water because she was too blue, or
Master Schultz would pull her aside because she got too
blue when she was running. She hated that she was like,
I can do it. I can do it, but we
just didn't want her to have a heart attack or
pass out because she wasn't obviously getting enough oxygen and
(26:34):
that's why she was turning blue. So it does help
when there are other children who have the same kind
of restrictions and they see the other kids having to
have spone or slowed down a little bit, and there's
nothing wrong with them, it's just that their heart is
going them. Hey, gotta take it easy for a minute here. Yes,
(26:56):
what advice would you give to other people who are
interested in volunteering with an organization but just don't think
they have anything to offer.
Speaker 1 (27:06):
You've always got something to offer. Don't think like that,
Just remember they could be someone. Then. Also things that way,
like no one keys or there's no support, no one
knows what they are calling through. Don't even feel like
it because there's always someone. You might not always know
(27:27):
what to say, but you can be there to listen.
Speaker 2 (27:33):
And sometimes that's all you need.
Speaker 1 (27:35):
Yes, and never lose your faith neither. Just keep on train.
Speaker 2 (27:41):
Yeah, I think that's so important. I had my Bible
with me at the hospital, and many, many, many prayers
were said for my baby, not just at my church,
but my neighbors were different religions, and I would get
cards in the mail from other churches telling me they
had as said in my child's honor. Yes, that meant
(28:03):
so much to me. I agree. I think this challenges
our faith, Yes it does. But I think if you
can hold on to your faith, that can help you
to get through. I think ultimately we come to realize
we're not in control, or we candice.
Speaker 1 (28:22):
Yes, we're no.
Speaker 2 (28:25):
And I think if you think you're in control, it'll
make you crazy. Yes, the whole And it's hard because
as a parent, what is our number one job keeping
our children safe? Here? Yeah, we can't keep them safe
from this. All we can do is be there and
provide as much love and support and medical attention as
(28:49):
we possibly can. But I know, especially in Africa, there
may not be a hospital close by that can provide
the kind of care that you were lucky to receive
for no matter how long or how short their life is.
With us, that life matters. Yes. Indeed, raising awareness of
(29:12):
heart effects is something that so many of us are
trying to do, and yet it seems that there are
still a lot of people who have never heard of
congenital heart effects. What advice would you give to a
new advocate on how to spread the word about congenital
heart effects.
Speaker 1 (29:31):
Your child is my child, Kiki Lulio one.
Speaker 2 (29:37):
I love that. Can you tell me something special that
you've done with Brave Little Hearts South Africa that you
think helped to spread awareness to others in your community.
Speaker 1 (29:52):
When Farid was still alive, Radya's husband, when he was
still alive, they used to do this thing on Facebook.
For example, Riley is going into surgery tomorrow. You'd post
like you would speak to the parents or the family first,
and you would ask if it's okay if you said
something on social media and you'd post about it. Then
(30:15):
you would give a background of Riley's story and you'd say, okay,
he's running into surgery. Not nearly every day he would
update on the social platform and wow, you would get
so much response on the and priests of loved ones
and even people you don't know, strangers, even it was
(30:40):
just so encouraging. You just never felt alone, You never
had the time to feel alone. That men were just
so awesome, really one of a kind.
Speaker 2 (30:51):
And that's how I got to know him was because
of Facebook. I saw him making those posts. You was
just awesome, my salaries feast. Yes, I just loved him
so much, his passion and starting this support group with
his wife and this nonprofit and knowing that this was
(31:15):
something that he felt he could make a change. Yes,
I love it that you got involved with for Reid
and that you are now helping his wife Rodia, and
that you're here on my prof Grada because this is
another way that we can spread the word. Thank you
(31:36):
so much, Candace for sharing your story with me in English,
and I can't wait for you to share your story
in Afrikaans as well.
Speaker 1 (31:45):
You're very welcome.
Speaker 2 (31:49):
Wasn't that an incredible conversation. I am so grateful to
Candace Swortland for sharing her heart with us. For me
everyday challenges of raising a child with a PHDN South
Africa to the uncertainty of frustration of waiting for surgery
and the inspiring choice to become a volunteer with Great
(32:10):
Little Heart South Africa. Her resilience and love were so
palpable during our interview. And now, just as I promised,
I have some wonderful news to share. Since we recorded
this episode, Candace's son Riley has had his open heart
surgery and he's doing great. In fact, Riley's recovery has
gone so well that he was even featured on the news.
(32:32):
I'll include a link in a show notes if you'd
like to see this segment for yourself. It's such a
beautiful testament to Riley's strength and to Candace's unwavering advocacy.
If today's episode moved you, or if you've found comfort, encouragement,
or community in the podcast, I'd like to invite you
to consider becoming a patron or volunteer. Our patrons help
(32:55):
keep this show going with their monthly support. In our
volunteers the heart of everything we do behind the scenes.
You'll also get access to our monthly live shows and
have a chance to connect more deeply with others in
our Heart to Heart community. You can find more information
in the show notes or visit our website to learn
how you can get involved. Thank you, as always for
(33:17):
being part of this journey. Whether you're tuning in from Texas,
South Africa, or anywhere between, your presence here matters. You
remind me week after week that none of us are
walking this path alone. I'm Ana Jaworski, and this has
been Hard to Heart with Anna, or we share stories,
celebrate victories, and hold space for every part of our
(33:39):
PhD journey until next time. Remember, my friends, you are
not alone.
Speaker 4 (34:06):
Thank you again for joining us this week. We hope
you have become inspired and empowered to become an advocate
for the congenital heart community. Heart to Heart with Anna
with your host Anna Jaworski can be heard at any
time wherever you get your podcasts. A new episode is
released every Tuesday from noon Eastern time
Despite whateva you are going through you and your family,
and you'll feed you with old disease. You'll all Stoley
for the Nicks, Old ben ugn shee your story and
ba Biganopol for the Nicks.
Speaker 2 (00:15):
So one, Hello friends, and welcome back to Heart to
Her with Anna, I'm so glad you're here with me today.
I'm Anna Towrsky Heart, mom to an amazing adult with
a single ventricul heart who turns thirty one years old
in August twenty twenty five. Hence this episode, we're taking
a trip halfway around the world to hear from Candace
(00:37):
Schwarzlin Afrid mom from South Africa. Candace shares her powerful
story about her son's congenital heart defect and the challenges
of navigating the healthcare system in her country, and how
she became a volunteer for Brave Little Heart South Africa.
When re recorded this conversation, she was still anxiously awaiting
(00:59):
persons next open heart surgery, which was yet to be scheduled.
But I'll have an exciting update about that a little
later in the show. First, let's take a moment for
the c HD News. If you've got your calendar nearby.
Go ahead and mark this one down. The Cure Gala
(01:19):
is happening on September twenty seventh, twenty twenty five, at
the Cable Center in Denver, Colorado. This is the third
annual black tied charity ball benefiting children born with congenital
heart defects. The evening will feature silent and live auctions,
the prestigious Cure Awards, live entertainment, and an update on
(01:40):
groundbreaking research by doctor Doris Taylor, who is working to
build an entire human part from stem cells. Yes you
heard that right. This is science fiction turned science fact.
Sponsorship opportunities are still available, so if you're looking for
a meaningful way to give back and enjoy a night
(02:01):
of elegance with others in the PhD community, this may
be the perfect event for you. I'll include a link
in the show notes so you can learn more. Before
we dive into today's conversation, I want to take a
moment to share a little bit of what's been going
on behind the scenes. You may have noticed that twenty
twenty five has been a bit rocky in terms of
(02:23):
podcast consistency, and I appreciate your patients more than you know.
After breaking my wrist. Earlier this year, my usual routine
was completely thrown off. The all nighters I used to
pull to meet podcast deadlines, they have been replaced by
some forced dressed and believe me, rest is not my
(02:44):
strong suit. On top of that, I've been traveling more
often to Florida to support my son, and like many
of you, I faced some painful family challenges, including grandparent alienation.
I won't go into the details here, but I will
say that if you're walking through something hard right now,
you are not alone. Despite it all, we're still committed
(03:08):
to four episodes a month, and we're making a small
change in how we do that. From now on, we'll
continue to bring you two brand new episodes each month,
one live show for our amazing patrons and volunteers, and
we're moving our community chat from Discord over to Zoom
for a more.
Speaker 3 (03:26):
Accessible and interactive experience. And when I need to recharge,
I head out to my garden. If you've seen the
latest pictures on Facebook, you.
Speaker 2 (03:36):
Know my Molineaux roses are in full bloom, along with
the other antique roses in my front yard and my
Julia Chad roses on the side of my house. Since
last year's tornado destroyed our beautiful ash tree. I've added
some Texas lilacs and a red blud tree in memory
of a very special HD angel. Now on to the backyard.
(03:58):
That's Frank's domain. That's where Juwarski Park comes alive with
umbrella plants, elephant ears, lantana, and a fig tree so
big you could probably qualify for its own zip code.
And of course it's all guarded by a six foot
tall t rex, a baby triceratops, a few velociraptors, and
are ever watchful of a raptor. Our poor pterodactyl was
(04:21):
knocked out of its purge by last year's tornado and
is currently undergowing some much needed repairs. But it'll be
flying again soon. Life may not always go as planned,
but like any good garden, it still grows surprises and delights.
This content is not intended to be a substitute for
professional medical advice, diagnosis, or treatment. The opinions expressed in
(04:44):
the podcast are not those of Hearts to Night the Globe,
but of the hosts and guests, and are intended to
spark discussion about issues pertaining to congenital heart disease. Or bereavement.
Today's says Candace Falcon Swortland from Cape Town, South Africa,
Cannavast and her husband our parents to Riley and Chase.
(05:08):
Riley had his first heart surgery at twenty days old
and has had three open heart surgeries. He is currently
waiting for another heart repair. Canvas represents Brave Little Heart
South Africa, a local congenital heart defect or CHD nonprofit
run by Rodia Matthews and Radia is our producer today.
(05:30):
So thank you Rodia for producing the program today. Thank Canada.
Speaker 1 (05:34):
I'm very happy to be well.
Speaker 2 (05:36):
I'm so happy to have you here because after we
record this program, friends, we are going to record our
first show in Afrikaans and Radia will be the guest
host and I will be the producer for that program.
But first let's get to know Candace. Welcome to Hard
to Heart with Danna Candas.
Speaker 1 (05:56):
Hi, I'm happy to be you.
Speaker 2 (05:58):
Oh, I'm so happy to talk to you, sweetie. Let's
start by learning a little bit more about Riley. Candice,
what is the name of his heart.
Speaker 1 (06:06):
Defect tetronog of Belen and his valves are blocked and
ye a holo.
Speaker 2 (06:15):
Okay, Tetralogy of Philow is a very common heart efect
and it was one of the first critical congenital heart
effects that children were operated on successfully, and it was
also known as blue baby syndrome. I mean, but.
Speaker 1 (06:32):
Used to say that he's smuffed because they used to
be blue.
Speaker 2 (06:36):
Yes, yes, you see. Nobody wants to hear that their
baby's a smart baby. But we all know exactly what
you mean. It's funny because my daughter was not born
with tetrology of Philow. However, when she was about ten
years old, she was doing taekwondo and she would be
(06:59):
running laps in the dojo. Her heart was not doing
as well at that time as we would have liked
it to have been, so by the time she did
the second or third lap, the tip of her nose
turned blue and her fingertips turned blue.
Speaker 1 (07:12):
Okay.
Speaker 2 (07:13):
Plus, she was also on the swim team, and when
she would go into really cold water, her nose would
turn blue and her lips would turn purple, and I
would have to snatch her out of the water and
warm her up with the towel. Then when she was
warm enough, I could let her go in. Finally, after
complaining about it to some other heart moms. Somebody said,
(07:34):
why don't you get a wet suit? So I asked
the swim coach if she could have a wet suit,
and he said, well, she can have a wet suit
when we're practicing, but if she wants to go to competition,
that would give her too much of an unfair advantage.
And she said, I don't have to compete. I just
want to swim with the local kids. As soon as
(07:57):
I got her that wet suit, oh my gosh, it
made such a huge difference for her. Now, your child
is black, do they look blue the same way that
I mean? I'm very white, So the blue is really
blue for.
Speaker 1 (08:13):
Now you can actually see it like he usually turns
blue at the fingertips and at times if it is
really bad. Didn't stung even.
Speaker 2 (08:24):
That's what I had heard was that you could tell
in the mouth more easily when a child is dark skinned. Interesting.
So we learned in the introduction that Riley has had
three open heart surgeries. Can you tell me about what
kinds of surgeries he's had and where he had them?
Speaker 1 (08:43):
Yed one on the lead and one on the right
of his sides of his robes, and then ed two
in the middle of his trees. Currently is three shanks,
but only two or current blue work. That's why he
is awaiting to have result.
Speaker 2 (09:03):
Repeat, Oh my goodness.
Speaker 1 (09:06):
And you're waiting for a few years already because at
first he was too small yet to gain some white
and ye had to growl. But right now they're saying
it's perfect. Now he's got the weight. He is grown.
But now each time when it's it's not like it's
(09:28):
an emergency. So children that need to go for emergency
surgeries or seen before him. So each time a kids postponed,
so this is probably not as urgent as an urgent
case to be done. So we just got to have patients.
Speaker 2 (09:51):
Where is he having a surgery? Is it there in
South Africa?
Speaker 1 (09:56):
Just in South Africa at the Red Cross Children's Hospital.
Speaker 2 (10:00):
Okay, it must be scary for you to be sitting
on pins and needles waiting to see when they're going
to do the supper.
Speaker 1 (10:10):
Really, because each time you prepare yourself mentally, sure and
things you can prepay yourself, and then when it's your time,
there not canceling it because it needs to be done.
But then they all postponing each time.
Speaker 2 (10:26):
Oh my goodness, that actually happened to me with the
second surgery for my daughter, but it was my fault, Candice,
and I was terrified. We had the second surgery scheduled
and it was springtime in central Texas, so I went
outside to mow the grass because you could be gone
for weeks and I didn't want to come back to
(10:47):
a jungle. I had three quarters of an acre. I
know how high the grass can row in springtime, so
it was a beautiful spring day. I had all the
windows open and I mowed the grass. And the next
day my little one woke up with a runny nose
and ill. It was allergies. I knew salergies because I
(11:08):
had just moaned the grass and there was no fever,
no vomiting, nothing, And we still had a week before
the surgery. I didn't know it the day before. We
still had a week. But I called the nurse that
worked with the surgeon and I said, look, I really
think it's just allergies. I don't think it's a big deal.
She said, we'll go to the pediatrician, but I can
(11:30):
tell you already, if there's a running nose, the surgery
will be based done that year. He is and I said, really,
if I took my baby to the pediatrician and had
the pediatrician check her out, there was nothing, he said,
it's just allergies. I wouldn't worry about. There's no fever,
there are no other signs that there's an infection. It
didn't matter. It didn't matter. They postponed it by a month,
(11:54):
and I worried every single day.
Speaker 1 (11:57):
That does it feel like anything?
Speaker 2 (12:00):
I'm worried what if something happens to her? And it's
all because I mowed the grass. So I did not
mow my grass. After that, I was like, you know,
what can you be joungle? I don't care. I told
my next door neighbor what had happened, and she saw.
I was just devastated because the surgery had to be
have spouned. And when I came home, my grass was
(12:22):
all known. One of my neighbors came over while we
were gone. Then it's so awesome, and they never came forward.
I don't know who did it. People are pretty amazing sometimes. Okay,
So I know from working with Global Arch that most
children in Africa who have heart defects don't survive childhood.
(12:46):
Can you give us a piece of helpful advice to
those parents who are in Africa and have a child
with a heart defect.
Speaker 1 (12:54):
That these very very scary the first sto years. But
if we were in and out of hospital a lot,
so it was very scary because it was something new
as well. So whenever he even just said runny nose,
I wouldn't just take him to the normal pedia attention,
(13:17):
I'll taking straight to hospital and we would get there
and I just knew we are going to be admitted.
It doesn't meant how serious it was. Wow, mild was
I just knew we are staying like that was home
away from home.
Speaker 2 (13:37):
Wow.
Speaker 1 (13:38):
Really even his first birthday was celebrated in hospital, but
it was not said. But at hospital we went to
development clinics and they said it's going to be very
slow and he would never be able to attend the
normal school. And I said, at the end of the day,
(13:58):
it's also not to what the doctor say. Because we
believe in our creator and esperience. We pray, yes, Hi,
pray all that he attainds a normal school. He is
currently in grade four and it does very well at school.
He's one of the top students in scholars.
Speaker 4 (14:24):
Heart to Heart with Anna is a presentation of Hearts
Unite the Globe and is part of the hug podcast network.
Hearts Unite the Globe is a nonprofit organization devoted to
providing resources to the congenital heart defect community to uplift, empower,
and enrich the lives of our community members. If you
would like access to free resources pertaining to the HD community,
(14:45):
please visit our website at www. Congenitalheartdefects dot com for
information about HD, the hospitals that treat children with HD,
summer camps for HD survivors, and much much more. You
(15:05):
are listening to Heart to Heart with Anna. If you
have a question or comment that you would like to
addressed on our show, please send an email to Anna
Jaworski at Anna at Heart to Heart with Anna dot com.
That's Anna at Hard to Heart with Anna dot com.
Now back to Heart to Heart with Anna.
Speaker 2 (15:27):
I learned from Radia Matthews that you're one of the
volunteers that works with Brave Little Heart South Africa. So
can you tell me, Candice, when you first became involved
with that nonprofit and why.
Speaker 1 (15:42):
I actually meet Radia and her husband at the hospital.
They called the group already and they were always offering
hell even if it was just a kind word to
other more appearance at all people, and that is when meeting.
(16:02):
But Radia was always a behind of scenes kind of person.
Husband was always the one doing the talking. Yes, but
that is actually when it really started. But that wasn't
that active. Then things just developed over the years.
Speaker 2 (16:24):
So did you get involved before COVID or after COVID?
Speaker 1 (16:28):
Off the COVID But that's been thought of the group
since before COVID.
Speaker 2 (16:33):
Already, Okay, so for quite a while. Then, Yes, that's
wonderful And I can totally understand why you got involved
because I met for Reid before I met Radya. I
met him online. I never had the pleasure always Milan, Yes,
I never had the pleasure of meeting him in person.
Unfortunately I did it to meet Radia in person, and
(16:56):
we'll be talking about that later. But he was just
such a personality, wasn't he. I mean, he just the
most ample, Yes, very harmful, but very passionate, and he
wanted to change things in Africa. I was so proud
of him. He was one of the first people I
(17:17):
met from Africa who was really actively doing something to
change yeah, flight of children in Africa, especially South Africa.
So what do you believe is the biggest challenge that
people in your country face if they have a child
with a heart condition.
Speaker 1 (17:37):
I would think that most people don't know when children
is old condition because it's not a visible Yeah, I
was thinking child is normal, not finances because outside hospitals
does provide the medical key, but it is stuff. A
(18:01):
lot of parents do lose hope also because perhaps they
don't have the kind of support they wed with private adults.
Speaker 2 (18:11):
Yes, it isn't visible artifact. And do you feel that
all of the pediatricians are aware of heart effects and
know what to look for and babies who might have
a heart effect.
Speaker 1 (18:26):
I'm not true. I don't think so because I was
not attending a state hospital during my pregnancy with Riley.
I was private and medical hospital and they told me
my baby is perfectly fine and healthy. And in the
(18:46):
day it was born, that is when we discovered the
is of condition.
Speaker 2 (18:53):
Oh wow, did you have ultrasounds then?
Speaker 1 (18:56):
Yes, every man, Oh my goodness, everything yes. And they
even did do the town syndrome tiaste and all of that.
They said, everything is perfectly fine. Wow, And he was
born a few monutes, no, he was born. And then say,
(19:19):
about two hours after he was born, the pediatrician came
to me and said, it's something wrong with your baby,
and I said what, and they said, something wrong with
your baby's ord. And I just started crying because how
can they be something wrong when everything was perfectly fine.
(19:40):
I did not know what was HD back then, because
how can a baby every old condition. I just thought,
isn't that normally what happens to adults.
Speaker 2 (19:52):
Yeah, I think that's what most people think. Most of
us who don't have a trouble with our heart effect
associate heart attacks with people who are older, who are obese,
who smoke, who drink, and of course our baby hasn't
done any of those things. Yes, yeah, I had three
(20:13):
ultrasounds and they never detected anything was wrong with my
baby either. But my baby's thirty so they were very
grainy ultrasounds. They were not very good. They just written
as far as technology back then. So I'm shocked that
you had one every single month and it was not
(20:34):
picked up. Did you ever go back to the doctor
and say, here's the interesting thing with my last ultrasound.
The only reason why I had one was because we
were disputing when the baby was stue. They did one
more to beat the measurements, and they gave me, because
this is how long ago that was, they gave me
(20:56):
a VHS tape ordering that bar EHS. Yes, now it
would be on a CD, or it would just be digital.
It wouldn't even be on a CD. Yes, but I
had a VHS tape. And when we switched pediatric cardiologists
when she was new, he asked me about that. He said, oh,
(21:19):
I would love to see that ultrasound and I said okay.
So I brought it into her next appointment and I said,
could you see something? And he said, Anna. The only
reason why I could see it was because I was
looking so intently for it. But they didn't ducked that
ultrasound specifically looking at the heart. You know. We saw
(21:42):
the heart was beating. And I even remember that there
wasn't a whole lot that was identifiable, the head, the feet,
the hands, but you could see the heart beating. But
it wasn't like the kind of ultrasounds they do nowadays.
Good heavens, my granddaughter.
Speaker 1 (21:59):
Something is at all well.
Speaker 2 (22:00):
They have three D three D ultrasounds. I mean I
could see my granddaughter's face before she was born. It
was so precious. I'm shocked that it was not picked up,
and I must have been devastating for you.
Speaker 1 (22:15):
It was, it really was. It made me very strong
as well.
Speaker 2 (22:21):
Yes, it does, doesn't it. We find a strength that
we didn't even know we had.
Speaker 1 (22:26):
Yes.
Speaker 2 (22:27):
What is the most important lesson, Candice, that you have
learned by being an advocate with Brave Little Hearts?
Speaker 1 (22:35):
Despite whatever you are going through, you and your family
and your kid with all disease, you are stoldy for
the knicks, old bearent. You can see your story and
be a big enough hold for the nicks one.
Speaker 2 (22:51):
I love that. That is beautiful. Embark on a heartwarming
odyssey with Baby Hearts Pressured Gateway to uplifting stories for
the sea 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. My brother needs an operation. Books
(23:13):
celebrating strength, love and familiar support. This is it, Baby
heartspress dot com and be part of our loving community
uplifting Hearts one story at a time. Henders, I'm sure
that you're a busy mob. Since you have two children
under the age of ten, how do you find the
time to volunteer.
Speaker 1 (23:34):
It's very odd. I am currently working in Riktaila as well.
Speaker 2 (23:39):
Well.
Speaker 1 (23:39):
It is very thick, but we do that.
Speaker 2 (23:43):
What kind of work do you do as a volunteer?
Like the laws?
Speaker 1 (23:50):
They had a advocacy program at Ralei's school. Ali Enza
Kira was running the show.
Speaker 2 (24:00):
Oh how awesome are them? Yes, not only are you advocating,
not only are you volunteering, but Riley's doing it too.
Speaker 1 (24:12):
Yes, he speaks for himself.
Speaker 2 (24:16):
Oh my goodness, And it's amazing what these kids pick up,
isn't it. Yes, very he's friends with Bakara.
Speaker 1 (24:27):
Yes, that's all of them. At first they used to
be very shy mm hmm, but as they grew older
they came out of this shell.
Speaker 2 (24:40):
Mm hmm. I think it helps our kids when they
know they're not the only one.
Speaker 1 (24:46):
Yes.
Speaker 2 (24:47):
Are there summer camps for children with heart defects in
South Africa?
Speaker 1 (24:52):
No? They are not, not that I know of.
Speaker 2 (24:56):
Mm hmm. We do have some here in the Uni States.
My child never wanted to go to them. There weren't
a whole lot when she was young. And she didn't
want to be singled out by her heart condition, even
though I know it would be good for her to go.
We actually went to one that was for families called
Camp Joy in Ohio one year, and I was this speaker.
(25:19):
And the great thing about that was they had sessions
for parents, they had sessions for the siblings, and they
had sessions for the heart warriors. And the heart warriors
actually made a quilt. They finger painted, they put their
handprints on cloth, and then they had volunteers who were
going to make all of the handprints into a quilt.
(25:42):
And I thought that was really something special, something sweet.
Speaker 1 (25:46):
That's all.
Speaker 2 (25:48):
It really was neat. And I hope that maybe that's
something that will happen in your country, because I think
there is strength for the children when they come to
know others who have this same condition. It kind of
takes away the stigma because, like we said, this isn't invisible.
Speaker 1 (26:07):
Like they don't also want to be singled out. Oh.
Speaker 2 (26:12):
I know, Hope hated it when I would pull her
out of the water because she was too blue, or
Master Schultz would pull her aside because she got too
blue when she was running. She hated that she was like,
I can do it. I can do it, but we
just didn't want her to have a heart attack or
pass out because she wasn't obviously getting enough oxygen and
(26:34):
that's why she was turning blue. So it does help
when there are other children who have the same kind
of restrictions and they see the other kids having to
have spone or slowed down a little bit, and there's
nothing wrong with them, it's just that their heart is
going them. Hey, gotta take it easy for a minute here. Yes,
(26:56):
what advice would you give to other people who are
interested in volunteering with an organization but just don't think
they have anything to offer.
Speaker 1 (27:06):
You've always got something to offer. Don't think like that,
Just remember they could be someone. Then. Also things that way,
like no one keys or there's no support, no one
knows what they are calling through. Don't even feel like
it because there's always someone. You might not always know
(27:27):
what to say, but you can be there to listen.
Speaker 2 (27:33):
And sometimes that's all you need.
Speaker 1 (27:35):
Yes, and never lose your faith neither. Just keep on train.
Speaker 2 (27:41):
Yeah, I think that's so important. I had my Bible
with me at the hospital, and many, many, many prayers
were said for my baby, not just at my church,
but my neighbors were different religions, and I would get
cards in the mail from other churches telling me they
had as said in my child's honor. Yes, that meant
(28:03):
so much to me. I agree. I think this challenges
our faith, Yes it does. But I think if you
can hold on to your faith, that can help you
to get through. I think ultimately we come to realize
we're not in control, or we candice.
Speaker 1 (28:22):
Yes, we're no.
Speaker 2 (28:25):
And I think if you think you're in control, it'll
make you crazy. Yes, the whole And it's hard because
as a parent, what is our number one job keeping
our children safe? Here? Yeah, we can't keep them safe
from this. All we can do is be there and
provide as much love and support and medical attention as
(28:49):
we possibly can. But I know, especially in Africa, there
may not be a hospital close by that can provide
the kind of care that you were lucky to receive
for no matter how long or how short their life is.
With us, that life matters. Yes. Indeed, raising awareness of
(29:12):
heart effects is something that so many of us are
trying to do, and yet it seems that there are
still a lot of people who have never heard of
congenital heart effects. What advice would you give to a
new advocate on how to spread the word about congenital
heart effects.
Speaker 1 (29:31):
Your child is my child, Kiki Lulio one.
Speaker 2 (29:37):
I love that. Can you tell me something special that
you've done with Brave Little Hearts South Africa that you
think helped to spread awareness to others in your community.
Speaker 1 (29:52):
When Farid was still alive, Radya's husband, when he was
still alive, they used to do this thing on Facebook.
For example, Riley is going into surgery tomorrow. You'd post
like you would speak to the parents or the family first,
and you would ask if it's okay if you said
something on social media and you'd post about it. Then
(30:15):
you would give a background of Riley's story and you'd say, okay,
he's running into surgery. Not nearly every day he would
update on the social platform and wow, you would get
so much response on the and priests of loved ones
and even people you don't know, strangers, even it was
(30:40):
just so encouraging. You just never felt alone, You never
had the time to feel alone. That men were just
so awesome, really one of a kind.
Speaker 2 (30:51):
And that's how I got to know him was because
of Facebook. I saw him making those posts. You was
just awesome, my salaries feast. Yes, I just loved him
so much, his passion and starting this support group with
his wife and this nonprofit and knowing that this was
(31:15):
something that he felt he could make a change. Yes,
I love it that you got involved with for Reid
and that you are now helping his wife Rodia, and
that you're here on my prof Grada because this is
another way that we can spread the word. Thank you
(31:36):
so much, Candace for sharing your story with me in English,
and I can't wait for you to share your story
in Afrikaans as well.
Speaker 1 (31:45):
You're very welcome.
Speaker 2 (31:49):
Wasn't that an incredible conversation. I am so grateful to
Candace Swortland for sharing her heart with us. For me
everyday challenges of raising a child with a PHDN South
Africa to the uncertainty of frustration of waiting for surgery
and the inspiring choice to become a volunteer with Great
(32:10):
Little Heart South Africa. Her resilience and love were so
palpable during our interview. And now, just as I promised,
I have some wonderful news to share. Since we recorded
this episode, Candace's son Riley has had his open heart
surgery and he's doing great. In fact, Riley's recovery has
gone so well that he was even featured on the news.
(32:32):
I'll include a link in a show notes if you'd
like to see this segment for yourself. It's such a
beautiful testament to Riley's strength and to Candace's unwavering advocacy.
If today's episode moved you, or if you've found comfort, encouragement,
or community in the podcast, I'd like to invite you
to consider becoming a patron or volunteer. Our patrons help
(32:55):
keep this show going with their monthly support. In our
volunteers the heart of everything we do behind the scenes.
You'll also get access to our monthly live shows and
have a chance to connect more deeply with others in
our Heart to Heart community. You can find more information
in the show notes or visit our website to learn
how you can get involved. Thank you, as always for
(33:17):
being part of this journey. Whether you're tuning in from Texas,
South Africa, or anywhere between, your presence here matters. You
remind me week after week that none of us are
walking this path alone. I'm Ana Jaworski, and this has
been Hard to Heart with Anna, or we share stories,
celebrate victories, and hold space for every part of our
(33:39):
PhD journey until next time. Remember, my friends, you are
not alone.
Speaker 4 (34:06):
Thank you again for joining us this week. We hope
you have become inspired and empowered to become an advocate
for the congenital heart community. Heart to Heart with Anna
with your host Anna Jaworski can be heard at any
time wherever you get your podcasts. A new episode is
released every Tuesday from noon Eastern time
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