September 26, 2025 • 46 mins
What happens when a grandmother's love collides with a broken system? When Christy Pace's grandson Hunter was diagnosed with Hypoplastic Left Heart Syndrome before birth, she found herself thrust into an unexpected role – not just as a supportive grandmother, but eventually as a visionary determined to transform how the CHD community connects.
Our conversation pulls back the curtain on the rarely discussed perspective of grandparents in the CHD journey. Christy's raw honesty about her emotional response – moving from shock to protection, anger to fear – reveals the complex ripple effects when a heart diagnosis enters a family. When COVID restrictions prevented her from being present for Hunter's birth or even meeting him until he faced a life-threatening cardiac arrest at two months old, Christy's determination only grew stronger.
The isolation heart families experience emerged as a central theme in our discussion. As Christy watched her daughter retreat from social gatherings to protect Hunter between surgeries, she recognized a hard truth many relatives miss: this isolation isn't a choice but a survival strategy. "This isn't 'I don't want them to get a cold,'" Christy explains. "This is life and death." Her passionate plea for extended family to keep inviting, even when the answer is consistently "no," offers valuable perspective for anyone supporting heart families.
But what makes this conversation truly special is how personal trauma transforms into purpose. After years of searching for resources to help her daughter and grandson, Christy grew frustrated with the scattered nature of CHD support. Rather than starting another foundation, she's created something revolutionary: CHD Connects Hearts, a distraction-free ecosystem bringing together patients, families, organizations, and researchers in one private community without the noise of advertising or algorithms.
Whether you're a heart parent, grandparent, or supporter, this episode offers both emotional validation and practical hope. As Christy reveals her vision for united progress in the CHD world, you'll be inspired to consider how connection might be our most powerful medicine.
Link to CHD Connects Hearts: https://chdconnectshearts.com/home
Anna's Blog: https://www.heartsunitetheglobe.com/hug-blog/moving-beyond-facebook-joining-forces-with-chd-connects-hearts
Become a supporter of this podcast: https://www.spreaker.com/podcast/heart-to-heart-with-anna--1256958/support.
Our conversation pulls back the curtain on the rarely discussed perspective of grandparents in the CHD journey. Christy's raw honesty about her emotional response – moving from shock to protection, anger to fear – reveals the complex ripple effects when a heart diagnosis enters a family. When COVID restrictions prevented her from being present for Hunter's birth or even meeting him until he faced a life-threatening cardiac arrest at two months old, Christy's determination only grew stronger.
The isolation heart families experience emerged as a central theme in our discussion. As Christy watched her daughter retreat from social gatherings to protect Hunter between surgeries, she recognized a hard truth many relatives miss: this isolation isn't a choice but a survival strategy. "This isn't 'I don't want them to get a cold,'" Christy explains. "This is life and death." Her passionate plea for extended family to keep inviting, even when the answer is consistently "no," offers valuable perspective for anyone supporting heart families.
But what makes this conversation truly special is how personal trauma transforms into purpose. After years of searching for resources to help her daughter and grandson, Christy grew frustrated with the scattered nature of CHD support. Rather than starting another foundation, she's created something revolutionary: CHD Connects Hearts, a distraction-free ecosystem bringing together patients, families, organizations, and researchers in one private community without the noise of advertising or algorithms.
Whether you're a heart parent, grandparent, or supporter, this episode offers both emotional validation and practical hope. As Christy reveals her vision for united progress in the CHD world, you'll be inspired to consider how connection might be our most powerful medicine.
Link to CHD Connects Hearts: https://chdconnectshearts.com/home
Anna's Blog: https://www.heartsunitetheglobe.com/hug-blog/moving-beyond-facebook-joining-forces-with-chd-connects-hearts
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):
I'm realizing how much of my own trauma if pulled
up into this, and why I want to fix it
for so many people. Welcome to Heart to Heart with Anna.
Speaker 2 (00:20):
I am Anna Schworsky, part Mom to Hope, my amazing daughter,
and host of your program. Today's episode is extra special,
and I'd like to begin with a personal reflection.
Speaker 3 (00:32):
After I published my book, Hypoplacic.
Speaker 4 (00:34):
Left Art Syndrome and Handbook for Parents, I.
Speaker 2 (00:37):
Began receiving hamwritten letters, holiday cards, birth announcements, and emails
from families who found it helpful. I was so grateful
for what my child's surgeon had done that I gave
him permission to reprint the book in the hospital print shop.
He continued having copies printed and distributed it.
Speaker 4 (00:57):
Long after my own supply ran out.
Speaker 3 (01:00):
The book has been out of print for years now,
and I keep meaning to.
Speaker 2 (01:03):
Revise it, but thanks to doctor dark Calhoun, I'll never
know how many parents ultimately received copy. What I do
know is that every card and note are received meant
the world to me. I've saved all the snail mailed
cards and letters and a binder in my office, a
tangible reminder of the community we share over the past
(01:25):
thirty years, those messages have slowed, so when I make
a new personal connection, it feels like a true gift.
Just last week, the mother of a thirty one year
old AHLHS Warrior reached out after hearing our episode with
Steve Hutchison. After a few private messages.
Speaker 3 (01:42):
She told me she'd also listen to Tyler Shydock's interview
and found both of them inspiring. Feedback like that fills
me with gratitude and reaffirms why I do this work.
Community building has always been at the heart of what
I do, whether it's creating the heart of an anthology
which features the voices of mothers and grandmothers, fathers and grandfathers,
(02:05):
or Heart warriors like my own daughter Hope.
Speaker 4 (02:08):
I have loved creating.
Speaker 3 (02:09):
Hearts U Nite the globe, growing our network to include
four different podcasts. Even though it's been a lot of work,
it's also been so delightful. Our shared stories are priceless,
and I'm honored to help amplify them. Today, you'll hear
from a remarkable grandmother whose love and perseverance shine through
(02:30):
the difficulty she's faced. Like me, she's determined to strengthen
our community, but First, let's turn to the news. For
today's PhD news. I am thrilled to share that my husband.
Speaker 2 (02:46):
Frank, and I will be attending the Cure Gallo twenty
twenty five in Denver, Colorado. Frank even rented at Text,
something he hasn't done since.
Speaker 3 (02:57):
Our wedding thirty nine years ago.
Speaker 4 (02:59):
He jo that it feels a bit like the.
Speaker 2 (03:01):
Prom we never attended together in high school, except this
prom carries a far deeper purpose.
Speaker 3 (03:08):
The Black Tie Gallant raises funds for children.
Speaker 2 (03:11):
Or and Wade publics part disease, and will feature both
silent and live auctions, an elegant played at dinner, live entertainment,
and the presentation of the prestigious Cure Awards.
Speaker 4 (03:24):
What excites me most.
Speaker 2 (03:25):
Is the chance to hear from the world renowned researcher
under Doris Taylor.
Speaker 3 (03:30):
Whose groundbreaking work uses stem cells to.
Speaker 4 (03:33):
Build entire human parts.
Speaker 2 (03:36):
The possibilities of her research are breathtaking, and I can't
wait to hear the latest updates from her. Lap. Like
our upcoming guest, the Building the Care Foundation shows what's
possible when a grassroots effort takes hold and refuses to
wait for change, real progress won't come from government action alone.
(03:58):
It happens when members of the PhD community pull together,
engage philanthropists, collaborate and make innovation a priority.
Speaker 3 (04:09):
And now let's turn to a conversation that embodies that
same spirit of community and determination, my.
Speaker 4 (04:16):
Interview with Christie Pace.
Speaker 3 (04:19):
This content is not intended to be a substitute for
professional medical advice, diagnosis, or treatment. The opinions expressed in
the podcast are not those of Hearts 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.
(04:43):
Christie Pace is a devoted mother, grandmother, a businesswoman whose
life took a.
Speaker 5 (04:48):
Heart to heart with Anna. Is a presentation of Hearts
to Unite the Globe is diet and it's part of
a podcast network Syndrome Hearts Tonight. The Globe is a
nonprofit organization to go to providing resources to the congenital ladys,
power and rich the lives of our community members. If
you would like access to free resources.
Speaker 3 (05:06):
Contending to the PhD community.
Speaker 5 (05:08):
Please visit our website at www. Congenderpartdfix dot com. For
information about HD the hospitals that treat children of PhD,
summer camps for HD survivors, and much much.
Speaker 2 (05:20):
Wirelessly to ensure no family walks the CHD path alone.
Speaker 3 (05:26):
Welcome to Heart to heart with Anna Christy.
Speaker 1 (05:29):
Thank you, Anna. I'm so grateful to be here today.
Speaker 3 (05:33):
I'm so grateful to be talking to you today and
to learn about your experience having a grandchild with a
heart effect. Can you tell me what it was like
for you the moment you heard that Hunter had the
hypoplastic left heart syndrome diagnosis.
Speaker 1 (05:52):
When I first heard, honestly, it's the little blanked out.
She called me. She had gone by herself, and I
was in shock.
Speaker 3 (06:05):
Yeah.
Speaker 1 (06:06):
I went from I think fear to protection the mama bear,
to anger to fear, confusion, looking for his solution, looking
for a way to fix it. I think all of
(06:26):
that happened in probably fifteen seconds. Yeah. Do you remember
going over to her house and seeing her. It's not
a fair situation to see her twenty one year old,
pregnant with her first child, who has been so happy.
(06:48):
She did everything right, She graduated early, she married her
high school sweetheart, and they're building their event else. She
started a career in real estate, working in the firm
with me, and then just he's knocked out from underneath her. Yeah,
as mom, it's hard to accept the diagnosis, but it's
(07:12):
also my baby.
Speaker 3 (07:14):
Well, sure you wanted to be there for your daughter,
so you knew you just had to put your own
feelings on the back burner for a little bit to
be there for your daughter.
Speaker 1 (07:25):
I imagine very much, very much so. And of course
I had one hundred things running through my head that
I wanted to say. But she's married now, right, and
this was between her and her husband, so I needed
to wait for her to ask questions. That was hard
to It was definitely on the sidelines and yet right
(07:46):
in the middle at the same time.
Speaker 3 (07:49):
Yeah, I get it. You are always your child's parent.
That doesn't change even if your child does get married,
and if your child becomes a parent, it doesn't change
the fact that that's still your baby. But you can't
hover over them, and you can't make the decisions, and
(08:10):
you can't give too much an ask for advice or
also just tune you out. So it does really change
the type of relationship you have with your child. It
forces that adult adult relationship, don't you think Christy very much.
Speaker 1 (08:29):
So the dynamic is very different, especially in a scenario
like this, because I think she even struggles, what I
want my mom to be my mom, but it's on me.
I think it even created a struggle for her.
Speaker 3 (08:44):
I imagine it did. I didn't find out until after
my baby was born. I can't imagine finding out in utero.
That would be so hard to continue the pregnancy knowing
that something is wrong.
Speaker 1 (08:58):
That is a challenging part, because it is she went
through the do I do a baby shower, do I
not do a baby shower? Do I put the nursery together?
All of those things that we take for granted in
a normal pregnancy, there were all big question marks for her.
She would ask me, what do you think? So I
want you to do the baby shower? But then if
(09:20):
you do and it doesn't turn out, well, then you've
got that on top of I mean, oh, there's no
right answer.
Speaker 4 (09:28):
There is no right answer.
Speaker 3 (09:30):
You're absolutely right, there's no right answer. I guess if
I were in the same position, I would say, follow
your heart, do what you think is right for you.
But yeah, a big part of you wants to believe.
Speaker 4 (09:45):
Everything's going to be okay.
Speaker 3 (09:47):
How early was she diagnosed in utero?
Speaker 1 (09:50):
She was about twenty four weeks.
Speaker 4 (09:52):
Oh that's pretty early, it is.
Speaker 3 (09:55):
I mean there's still a lot of weeks left to go,
a lot.
Speaker 1 (09:58):
Then, of course, the longer the pregnancy goes, you start
feeling the movement, sure, and the reality that I want
to hold you, that you're safe here. The moment you're born,
you're no longer safe.
Speaker 3 (10:14):
You're not as safe as you are inside your mama's belly.
Speaker 1 (10:17):
That's the mindset, sure, right, That's that internal conversation and
struggle that these moms go through. It's torturous.
Speaker 4 (10:25):
Yeah, yeah, it really is.
Speaker 3 (10:28):
Every minute probably feels like an hour in some ways.
I thought for sure I would have to have a
c section. I didn't have confidence in myself. I was
really afraid. And I wasn't twenty one either. I was
twenty eight when I had my first one. So I
can't imagine being as young as she was and knowing
that the baby is going to have problems. Did she
(10:50):
have to go to a different hospital to have the
baby than what she was intending to go to to
begin with?
Speaker 1 (10:56):
She did. She was three hours away at vanderbil at
Monroe Junior and She actually relocated a month before Okay
into a hospitality house and then went into labor and
she did end up having a sea section. I had
(11:17):
really hard time with pregnancies and deliveries and had emergency
sea section on my first one and on my second one,
and had several miscarriages. As a mom, you always want
for your children what you didn't have. I think that's
just a universal thing. We want better for our children,
(11:39):
And since I had such a hard time with pregnancies
and deliveries, I just wanted my girls to be able
to have a normal experience. I had a lot of guilt,
not that it was anything I did, but I experienced
that guilt. Did I pass this problem down? What did
I do? Was this something I did? I battled that
(12:01):
same thing in a different manner, but the emotions are
very similar.
Speaker 3 (12:05):
I wonder if you had a little bit of PTSD
as well, if you experienced difficult deliveries yourself, and knowing
what your daughter was in for. She was far from home,
so she was not in the environment she thought she
was going to be. She was far from you, although
(12:26):
knowing you you were there.
Speaker 1 (12:28):
I was in town, but it was during COVID and.
Speaker 4 (12:32):
She gave birth during COVID.
Speaker 3 (12:35):
What did that mean for you?
Speaker 4 (12:36):
Were you allowed to be in the hospital with her?
Speaker 1 (12:40):
No? No, When they were doing the delivery, I was
in town. Several of her family members were in town,
banane us could be there, so we were close by,
sitting at the coffee shop three minutes from the hospital.
It was as close as I could get.
Speaker 4 (13:00):
Sure.
Speaker 3 (13:02):
Wow, oh my gosh, So you're sitting near where you're
pacing because you can't do too much of any one
thing for too long. When did you get the call
that the baby had been born?
Speaker 1 (13:15):
September thirtieth, twenty twenty. She did have to do sea section.
They didn't want to do any more stress on him
sure through the delivery, so they did ce section, And
I hated that because I had C sections and I
knew what she was going through. I hadn't really thought
about the PTSD, but I'm certain that played out. And me,
(13:38):
now that you've spoken those words to.
Speaker 3 (13:40):
Me, Yeah, it's amazing what we go through without even
thinking about it. Because our focus is on our child
or a grandchild. It's not on us. It's what we
want to be for them, what we want to do
for them. It's not on ourselves.
Speaker 1 (13:57):
Yep, me and my children were very connected to well
know if something's wrong. Sure, I could feel a lot
of it. That was very hard. I'm glad Anthony got
to be there for the delivery, he got to hold
Hunter that she did not until I think the next day,
(14:18):
which is the same thing I experienced with my first And.
Speaker 3 (14:23):
I just saw history being repeated.
Speaker 1 (14:26):
I didn't and that feeling.
Speaker 3 (14:29):
The empty arms, the arms that are aching to hold
your baby.
Speaker 1 (14:35):
For me, mine was just in the next room. I'm
going to cry for hers. It was in a completely
different wing. You know. That just broke my heart for
her even more because I knew Andrea, my oldest, was
just in the next room, although I hadn't seen her yet,
that Haunter was a long ways the way. And it's
(15:05):
really hard what these moms go through. Yeah, And it's
amazing to me, Hannah, because I've wondered why I've had
such a drive and a push for this, and as
we're talking here, I'm realizing how much of my own
trauma if pulled up into this and why I want
(15:30):
to fix it for so many people. Yeah, because I
experienced it, and I never wanted my children to experience it.
Let's go back to COVID. It wasn't allowed there, and
then he had at first surgery and then it too much.
Speaker 3 (15:45):
Wait a minute, Wait a minute, Wait a minute, wait
a minute. Okay, I understand you not being allowed to
be in the room with her, But after the baby
was born, you weren't even allowed to go stand in
the hallway and look at the baby through the glass windows.
Speaker 1 (15:58):
Oh no, no, we weren't allowed in the house little period.
Speaker 3 (16:01):
Oh my gosh, Christy, Yeah, okay, but to see your
daughter after she gave birth, you weren't allowed to do
that either.
Speaker 1 (16:09):
Nope, not till she was discharged.
Speaker 3 (16:11):
Oh my gosh, Okay, that would be unbelievably hard.
Speaker 4 (16:17):
Wow.
Speaker 1 (16:18):
And they were also in this stage of only one
parent being able to be there at a time. They
got a few waivers for big events like surgery days
where both could be there. If there was a procedure
or something, they both could be there, but the majority
of the time it was one parent or the other.
Speaker 3 (16:40):
Wow.
Speaker 1 (16:41):
But they had to alternate.
Speaker 3 (16:43):
Were you driving the three hours to be as close
as you could or did you have a hospitality room yourself?
How did that work out?
Speaker 1 (16:53):
Now? I drove and I was in an hotel. Okay, yeah,
I would drive down and day in a hotel.
Speaker 3 (17:01):
How old was Hunter before he had his first surgery?
Speaker 1 (17:06):
Two days?
Speaker 4 (17:07):
Oh? Wow, it was fast.
Speaker 1 (17:09):
It was very fast.
Speaker 3 (17:12):
How long was he in the hospital after he had
his first surgery?
Speaker 1 (17:17):
Unfortunately he had some complication. He was in for total
of five months.
Speaker 3 (17:22):
Oh my gosh.
Speaker 5 (17:24):
Yeah.
Speaker 1 (17:24):
He came home on Christmas Day.
Speaker 4 (17:26):
Wow.
Speaker 1 (17:28):
Yeah. So he went into cardiac arrest at two months.
And that's the first time I got to meet Hunter
because they weren't sure if he would make it, so
they did a twenty four hour wafer to allow the
family members to come in and meet him.
Speaker 4 (17:46):
Oh my goodness.
Speaker 1 (17:48):
And so I got to meet him.
Speaker 3 (17:56):
Well, talk to me about seeing that grand baby for
the first time. Were you able to hold him?
Speaker 1 (18:03):
No, he was some paralytics okay and on echmo.
Speaker 3 (18:09):
Oh he was on echmo too, Yeah.
Speaker 1 (18:12):
So unfortunately we could not hold him. That's the first
thing I asked, is can I touch him? And Caitlyn
pointed to his foot, and so you can touch his
foot because it was the least amount of wires and
tubes and everything. So I would touch his foot and
I talked to him and spent some time with him.
(18:35):
We all went to dinner, and after dinner, I went
back to the hospital and sat with him, just me
and him, and I had a long conversation.
Speaker 3 (18:50):
What did you tell him?
Speaker 1 (18:55):
Told him that his mama needed him to be strong
and I knew he could, and that we needed him
to fight, and that I loved him, And I was
sorry I wasn't there, but I promised him that things
(19:18):
were better than just this in life. I told him
all sorry I was that he had to go through
all of these things, but there were so many good
things that he could look forward to.
Speaker 5 (19:36):
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 pretending to the PhD community,
(19:56):
please visit our website at www. Congenital hear Artdefects dot
com for information about CHD, the hospitals that treat children
with PhD, Summer Camps for HD survivors, and much much more.
Speaker 3 (20:14):
Embark on a heartwarming odyssey with Baby Heart's pressure gateway
to uplifting stories for the 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 her father, and my brother
needs an operation. Books celebrating strength, love and familiar support.
(20:36):
Visit babyheartspress dot com and be part of our loving
community uplifting hearts one story at a time.
Speaker 5 (20:46):
You 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 heartwith Anna dot com.
Speaker 6 (20:58):
That's Anna at.
Speaker 5 (20:59):
Heart to Heartwanna dot com. Now back to Heart to
Heart with Anna.
Speaker 3 (21:09):
Christy. When I heard you telling the story of what
you said to Hunter, tears immediately sprang to my eyes
because I remember telling my baby the same thing. And
I felt guilty because I told my baby before the
first surgery that she was going to have to fight
(21:33):
and I couldn't live without her, which felt really selfish,
but I just knew I wouldn't be the same person
without my baby. I was so glad that she was
such a fighter. And it sounds like Hunter also has
that fighting spirit. Remember that when Hunter is a teenager. Oh, yes,
(21:58):
because sometimes it's a double edged sword.
Speaker 1 (22:02):
Yes it is.
Speaker 3 (22:03):
And I had to remind myself many times that you
want your child to be a fighter, Anna.
Speaker 1 (22:09):
Yes.
Speaker 3 (22:10):
But I think one of the things that surprised me
in the hospital was the support I got from people
I wasn't expecting to get support from.
Speaker 1 (22:21):
Did you feel that at all? From the other parents,
and that whole.
Speaker 3 (22:26):
Adult from parents, from the woman who was cleaning the
floors when I told her thank you.
Speaker 1 (22:33):
I didn't get to experience that. But yeah, that my
daughter did, okay, And she connected with several parents on
the floors and some of the nurses, and yes, some
of the cleaning personnel. She did mention several of them.
I think you're right. I think that's definitely part of it.
Speaker 3 (22:54):
Yeah, you find community and connection in places that are
sometimes unexpected. Yeah, I'm curious what support you received. My
mother was in the hospital with me when we were
having that for surgery, and she met other grandparents. It
meant a lot to her to be able to speak
(23:15):
to other people who were going through the same thing
she was.
Speaker 1 (23:20):
Honestly, I didn't have much support outside of an immediate
friend and family. It was interesting watching some people's reaction.
Now people deal with it. You've got a large group
that like, oh, I'm glad you've made it through his surgery.
I'm glad it's fixed. It's hard to explain to people
(23:41):
that it's just stable.
Speaker 4 (23:43):
Yeah, it's not fixed.
Speaker 3 (23:45):
And now I had so many people say to me, now,
everything's okay. As much as I wanted to tell them, yes,
everything's going to be okay, I couldn't lie to them.
Right I knew that things are okay for today, and
that's what I would say, Yes, things are okay for
right now, But I couldn't promise them that things were
always going to be okay.
Speaker 1 (24:06):
And that have a lot of pressure on you as well.
Speaker 3 (24:12):
Yeah, I think the whole family feels a need to
protect and yet it's not protecting people to keep the
truth from them. So how do you gently share the
truth without scaring people or making people upset?
Speaker 4 (24:27):
Everybody that you meet is going.
Speaker 3 (24:29):
Through that, your best friend, your next door neighbor. This
has a ripple effect that I think a lot of
people don't realize absolutely.
Speaker 1 (24:39):
And then you have where some people are scared sure
and are afraid to touch them, raid to be alone
with them. Some people don't want to get connected because
they're afraid that they'll get hurt. Yeah, if something happens,
just watching the loss. Most people got through the normal
(25:01):
transition of getting married and then having children around. You
outgrow a lot of friends in that phase, and then
there's other ones that are on that same trajectory issue,
so you stay connected, but with them now your child
not like their child, grandchild's not like their grandchild. And
(25:25):
then the isolation that's experienced is huge.
Speaker 3 (25:30):
Let's talk about the isolation because I think that's a
big issue and it's an elephant in the room nobody
wants to talk about.
Speaker 1 (25:38):
Here is get the isolation. Even without COVID, you've got
the phase surgery and inner stage is the very tricky stage,
so dritical stage. Yeah.
Speaker 3 (25:51):
I was told that we had to do everything we
could to keep the baby as healthy as possible to
be a candidate for the next person.
Speaker 4 (26:00):
Otherwise there was no moving on.
Speaker 1 (26:03):
Correct and the level of isolation and fear that that places,
you know, you're afraid to go out. You're afraid to
go to a family dinner, you're afraid to have other
people around. I watched Caitlin. She was petrified to let
go because what if her action actually created a situation
(26:32):
where he got sick and died. That's where her mind's going, right,
and so she says, I can't. I want to, but
I can't. This internal battle of isolation, it's not a choice.
Speaker 3 (26:47):
You don't feel like it is a choice. I agree
with you, one hundred percent. Yeah, And yet your family
feels that it's a choice and that you're continuing to
exclude them from your life, and that it's not what
you're trying to do. What you're trying to do is
provide the best opportunity for your baby to survive. So
(27:08):
there'll be many more tomorrows with the family.
Speaker 1 (27:11):
Yes, a lot of family does not understand that there
were family members within our family that just wanted to
stop inbiting because there was always a no. I don't
care if it takes two years of nos, you don't
stop in biting. You accept that that's for circumstance and
it's not personal. This is life and death. This isn't
(27:32):
I don't want them to get a cold. If life
and death.
Speaker 3 (27:36):
This is what a lot of people don't understand. If
there was some running nos, I couldn't take a chance
that it was just allergies because that could land my
baby in the hospital and my baby could die exactly.
Speaker 1 (27:49):
Yeah, So the isolation is very big, the mental anguish
that it creates for these parents.
Speaker 3 (27:57):
Yeah, I can't imagine going through all of this and
COVID because that was another threat that made everything even
more exacerbated. And talk to me about Hunter, Talk to
me about how he's inspired you to have a whole.
Speaker 4 (28:19):
New mission in life.
Speaker 1 (28:22):
Definitely seeing him after his cardiac arrest and having that
conversation with him, not being my first meeting with him,
and him pulling through all of that and coming home,
my gosh when he came home even more so, just
wanted the most for him. Sure, I like to research.
(28:45):
I've always been that way. I died deep into things
I want to understand as much as I can. Part
of it's just being able to have a little bit
of a feeling of control with it, just by knowledge power.
Speaker 3 (28:58):
Yeah, you've got to look at what you can do,
and that was something you could do.
Speaker 1 (29:04):
Yes, I spent a lot of time doing that, joining
groups and looking for help, for connection and for resources,
and was very frustrated with the process. It's not that
I didn't meet good people in the process. I did,
but oh my gosh, it was so scattered that I
(29:28):
was like, what is this? And over the next several years,
I just continued to look and watch. I'm looking at
the progression. I'm not looking at just today Caitlin, my daughter,
and Hunter are stuck in Today. Kaitlyn's surviving with Hunter,
and I'm helping as much as I can. But I'm
looking at the future. I'm looking down the whole path
(29:50):
of this community and realizing that there's too many aisles
to walk down. It's like this big maze and it's
not clear enough. There's not a clear direction. There's not
a clear path for resources, supports, and the direction to
(30:18):
travel with HD.
Speaker 3 (30:21):
I see things a little bit differently than you do
because I've been.
Speaker 4 (30:24):
On this path for thirty years. But you're right that things.
Speaker 3 (30:28):
Are very scattered, and it's amazing to me.
Speaker 4 (30:31):
This is the number one birth defect, and.
Speaker 3 (30:33):
Yet we are not more cohesive, We're not more unified.
There are some of us.
Speaker 4 (30:41):
That have found each other and clung to each other
that we're each other's support network.
Speaker 3 (30:47):
The American Heart Association pays a little bit more attention
to us than they did three decades ago.
Speaker 4 (30:54):
But you're right, it is.
Speaker 3 (30:56):
Better than it was three decades ago. It's still not
where I think it should be. But their focus is
on a quieteart disease and their mission is stroken heart attacks.
There was a very different mission. Yes, we don't have
that one all encompassing organization.
Speaker 4 (31:14):
That brings us all together. Yes, I agree.
Speaker 1 (31:19):
My first thought was, well, I'm starting a nonprofit. And
I started researching that and started seeing all of these
out there.
Speaker 3 (31:27):
There are a lot of nonprofits out there.
Speaker 1 (31:29):
There are, and they're started with passion, absolutely, and I thought,
we don't need another foundation. That thought, it's what I
said to myself. Last thing we need is another foundation
to pull more run the entirety. Then I started going, well, okay,
(31:52):
then what's the fix because this group's doing great things.
That group's doing great things, but it took me four
years to find them. Yeah, and that's with me as
a researcher. When I started digging, I found a bunch
more these moms and dads who are in the throes
(32:16):
of it. They don't have the time, the energier space
to be searching like I did.
Speaker 3 (32:25):
I've been doing this for thirty one years, and there
are things that I've missed too, because everything is not
easily found. I think you're absolutely right there there are
a lot of hidden gems. Yes, how do we come together?
How do we make everybody found? I have over one
hundred pages on my website jest of resources, over one
(32:49):
hundred pages. A lot of organizations folded after COVID.
Speaker 4 (32:53):
It was really really hard.
Speaker 3 (32:57):
How do we come together? Let's talk about HD nextparts.
Speaker 1 (33:01):
I went through what's the solution? And I thought long
and hard, and I went down rabbit holes. I realized
that there's so much good out there and we're missing it.
But it made more sense to me to create an
actual ecosystem, and it would be a place where the
(33:22):
organization can be there, the foundations, the researchers, and all
the people in the community affected by PhD, family members, patients, parents, grandparents,
and the people who want to be involved. It's not
a support group, although they would get support within that community.
(33:45):
It's an actual ecosystem. It's the CHD world. Is the
way I envision it and this is the spot that
you go. If we're all in one hub, then everyone
can be touched or connected. In the hub. There's a
search parimeter, so if you're looking for something specific, you
(34:08):
can search that key word and it's gonna pull up
everything that has to do with that. If Anna has
a podcast that she wants to do, she can announce
it to the entire community. If there is a researcher
trying to do clinical studies or get new information out,
(34:28):
they can announce it to the entire community. And it's
a private community. There's no advertising, there's no algorithms, there's
no AI playing in it.
Speaker 3 (34:40):
It's so funny because I'm watching history repeat itself. Well,
if we first had our diagnosis, there was nothing. I
don't even exactly know how we found each other, but
we've found each other online and we did have AOL chats.
It was only people at a heart our community, and
(35:01):
we had list serves. It was no advertising. It was
only her parents and that was it. As it got
bigger and bigger, there was so much to try to
keep up with. Then my kids were into sports and
there was a homeschool mom. We did volunteer work in
the community, and I took a step back from the
(35:24):
heart community for about ten years. When I came back,
everything was different. You're talking about, let's go back to
the way it was before. Let's just have our tiny
little community. I'm kind of laughing while I'm listening to this,
because I'm thinking, Yes, that's the way it used to be,
and everybody knew who everybody was. It was a homogeneous
group of people who were all together. We all understood
(35:47):
each other's concerns. We didn't have to explain things like
we did to our friends who didn't have kids with
heart defects. And that's what you're talking about doing, is
recreating that.
Speaker 1 (36:01):
It sounds like it. It really does now. Did you
have the organization from the foundation in there as well?
Speaker 3 (36:07):
No, okay, no, not that I know of.
Speaker 4 (36:11):
I didn't have my five, one, C three.
Speaker 3 (36:13):
Back then we were living through it. We hadn't created
those organizations yet. We certainly didn't have those organizations reaching
out to us. And that's what's different with CHD Connects Hearts.
Some of our organizations have been around for a while
now and we do have resources.
Speaker 4 (36:32):
There really was not much of anything for us back then.
Speaker 3 (36:36):
We just had each other, which is beautiful.
Speaker 1 (36:40):
It is, it really is. You've got this cumulative level
of experience now and there is so much available to
help parents, but we need to have it readily available
to them.
Speaker 3 (36:55):
We had a different type of organization, yes, not like
a foundation. Organization is in being organized heavy, one place
where things can easily be found, people can easily be
connected to without distractions. Yes, there are so many distractions.
I find it so hard to focus when I'm online
(37:16):
now compared to what it used to be for me.
Speaker 1 (37:20):
I've noticed that even since AI came out, that the
online experience has been very different.
Speaker 3 (37:29):
Yeah, I feel like everything is attacking me to try
and get me to spend money there that's great money
or time, and my time is as precious or more
precious in a lot of ways than my money, and
I get sucked into these black holes of videos and yeah,
I am embarrassed. I can't go on Pinterest anymore because
(37:51):
it sucks so much time out of my life.
Speaker 4 (37:54):
And I look up and there's.
Speaker 3 (37:55):
Three or four hours that are gone and I was
just looking at fun recipes and craft product So I
want to do with my sister.
Speaker 1 (38:02):
I bet you ended up somewhere else too. If I
started one spot and I come about the other end
going how did I get there?
Speaker 3 (38:08):
Yes? Yeah, it's hard to stay focused and it would
be nice to have something that's a little more simplified.
Speaker 1 (38:16):
I like the word you used as organized. Yeah, I
think that's the key. It's funny when I'm driving down
the road, I have these visions of billboards in every
town that says the HD connects hearts. If you or
your family is affected by congenital heart defects, here's your home,
and have this vision of it. And it's not for me,
(38:41):
it's for the community. It's for progression, it's for collaboration.
It's for pushing us forward, taking us to that next level,
and taking this chaos and making it organized chaos in
the system. There's a place for affiliates, and that would
be where the organization and foundations have their own chats
(39:05):
that they could actually say, Hey, we're wanting to work
on this project. We might have two or three other
foundations or organizations already working on that. What if they
would collaborate and do it jointly. What can be produced
from that? That, to me, it's just beautiful. That's where
we're at in society, and at this stage of life,
(39:30):
there's so much information and so much happening that if
we can collaborate, we can actually make progress. And that's
what I want to see. I want to see progress,
and in order for my grandson to get progress for
his future, then everybody's got to have it.
Speaker 4 (39:50):
Yeah, I agree.
Speaker 3 (39:51):
Tell me how people can find HD connects hearts.
Speaker 1 (39:55):
It's chdconnectshearts, dot com, backslash homes and now it'll take
you strength to the site and get a little more information.
Speaker 3 (40:06):
What does it cost to be a member?
Speaker 1 (40:09):
We have that two dollars technology fee. We want this
to be community driven, not foundation driven, not organization driven.
I want it to be owned by the people. Therefore,
we're going to have the community coming to us instead
(40:32):
of us trying to go out there and seek them.
The only way to do this is technology and staff.
I've already got the technology. I've invested just about every
penny I have. I'm now paycheck to paycheck because of it,
and no regrets. Of course it's scary, but no regrets
(40:52):
and so much I believe in it. And I've got
the staff already and I'm paying them every month, just
to keep it going even though it's still new. It's
worth it and now it can happen.
Speaker 3 (41:07):
You can't even get a cup of coffee for two
dollars a month, so that's totally reasonable. Technology does cost money,
especially if you do want to keep the information private,
you don't want to have advertisers. The affiliate program, friends,
is not what you might think. It's not like the
Amazon affiliate program that sends you to another place so
(41:30):
that she'll spend money and money comes back to Christy.
Speaker 4 (41:34):
Just the opposite.
Speaker 3 (41:35):
The affiliate program is Christie bringing all of these organizations
together so that we can reap the benefit of being
a community. So there's no money coming to Christy from
the affiliates. And in fact, if I'm not mistaken, Christy,
you're taking a little bit of the technology fee and
you're going to be sharing that with some of the affiliates.
Speaker 4 (41:57):
Isn't that right?
Speaker 1 (41:58):
That is correct. So any of the Elliott that signs up,
and anyone who signs up under their code as a member,
then they don't get ten percent of that many.
Speaker 3 (42:10):
So nobody's getting rich here because it's not about the money.
But we don't want Christy to go broke. And having
this platform for us where we can have our privacy
and we won't be inundated with ads and things that
have nothing to do with the heart.
Speaker 1 (42:26):
This is the one.
Speaker 3 (42:26):
Place where you can come and be in a safe
space with other people who understand your heart woes and
your heart joys like nobody else does. You can still
go to all the other places that are out there,
but there you're having a lot of other things vying
for your attention. Here at PhD Connects Hearts, it's just
(42:47):
focused on the heart, and I think it's going to
be a beautiful community. I hope everybody will read my blog.
I'll be putting a link to the blog and to
Christy's platform in the show note.
Speaker 4 (43:00):
But I'm going to be.
Speaker 3 (43:01):
Having a cup of tea once a week on Tuesdays,
and I'm going to invite people to chat with me
on THCHD connects Hearts, and I have a feeling I'm
going to be going out there more than on Tuesdays,
but I'm starting with once a week for thirty minutes
before I start my work. I'm just going to be
on the platform talking with other people, meeting some new people,
(43:23):
and developing those new relationships in a heart community.
Speaker 4 (43:26):
So if you want to join me, please do.
Speaker 3 (43:28):
You can use my affiliate link, or you can just
go to her homepage. It doesn't really matter. What matters
is that we come together and we can share and
talk with one another. I received a lovely message today
from a mom who also has an adult in her thirties,
and she and I have been chatting in private messages.
(43:51):
It's been so nice to have somebody else who really
understands what I'm living through because she and I were
experiencing the same things at the same time. This is
what we can have on this platform. So I hope
you'll join us on THCHD Connects Hearts. Christy, thank you
so much for sharing part of your CHD journey with us, part.
Speaker 4 (44:14):
Of your life with us.
Speaker 3 (44:16):
We shared a few tears, and I think we also
shared some laughters. So thanks for coming on a program
with me.
Speaker 1 (44:23):
Thank you, Anna. I have really enjoyed this.
Speaker 4 (44:26):
I did too, Christy.
Speaker 3 (44:26):
I feel like I know you a lot better now.
Speaker 1 (44:29):
Many layers, many layers.
Speaker 3 (44:31):
I'm so honored to have had Christy Pace on my
podcast today. Today's episode began with memories of the handwritten
notes and heartfelt connections I received after publishing my first book,
reminders of how powerful community can be. In PhD News,
I shared my excitement about the upcoming cure Gala, a celebration,
(44:53):
a research and collaboration, and in our conversation with Christy Pace,
we saw those same themes come alive as she described
creating HD connects Hearts a place where families can find
one another without distraction. If Christie's vision inspired you, I'd
love you to keep that spirit of connecting going. Join
(45:14):
me every Tuesday at eight thirty am Central Time on
PhD connects Hearts for a relaxed half hour of sharing
and support, much like those early days before Facebook, but
we simply told our stories from the heart. You'll find
a link to Christy's platform in the show notes so
you can easily sign up and join a conversation. Let's
(45:35):
keep building the kind of heart centered friendships that truly
sustain us. Until then, Remember, my friends, you are not alone.
Speaker 6 (45:51):
Thank you again for joining us this week.
Speaker 5 (46:07):
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'm realizing how much of my own trauma if pulled
up into this, and why I want to fix it
for so many people. Welcome to Heart to Heart with Anna.
Speaker 2 (00:20):
I am Anna Schworsky, part Mom to Hope, my amazing daughter,
and host of your program. Today's episode is extra special,
and I'd like to begin with a personal reflection.
Speaker 3 (00:32):
After I published my book, Hypoplacic.
Speaker 4 (00:34):
Left Art Syndrome and Handbook for Parents, I.
Speaker 2 (00:37):
Began receiving hamwritten letters, holiday cards, birth announcements, and emails
from families who found it helpful. I was so grateful
for what my child's surgeon had done that I gave
him permission to reprint the book in the hospital print shop.
He continued having copies printed and distributed it.
Speaker 4 (00:57):
Long after my own supply ran out.
Speaker 3 (01:00):
The book has been out of print for years now,
and I keep meaning to.
Speaker 2 (01:03):
Revise it, but thanks to doctor dark Calhoun, I'll never
know how many parents ultimately received copy. What I do
know is that every card and note are received meant
the world to me. I've saved all the snail mailed
cards and letters and a binder in my office, a
tangible reminder of the community we share over the past
(01:25):
thirty years, those messages have slowed, so when I make
a new personal connection, it feels like a true gift.
Just last week, the mother of a thirty one year
old AHLHS Warrior reached out after hearing our episode with
Steve Hutchison. After a few private messages.
Speaker 3 (01:42):
She told me she'd also listen to Tyler Shydock's interview
and found both of them inspiring. Feedback like that fills
me with gratitude and reaffirms why I do this work.
Community building has always been at the heart of what
I do, whether it's creating the heart of an anthology
which features the voices of mothers and grandmothers, fathers and grandfathers,
(02:05):
or Heart warriors like my own daughter Hope.
Speaker 4 (02:08):
I have loved creating.
Speaker 3 (02:09):
Hearts U Nite the globe, growing our network to include
four different podcasts. Even though it's been a lot of work,
it's also been so delightful. Our shared stories are priceless,
and I'm honored to help amplify them. Today, you'll hear
from a remarkable grandmother whose love and perseverance shine through
(02:30):
the difficulty she's faced. Like me, she's determined to strengthen
our community, but First, let's turn to the news. For
today's PhD news. I am thrilled to share that my husband.
Speaker 2 (02:46):
Frank, and I will be attending the Cure Gallo twenty
twenty five in Denver, Colorado. Frank even rented at Text,
something he hasn't done since.
Speaker 3 (02:57):
Our wedding thirty nine years ago.
Speaker 4 (02:59):
He jo that it feels a bit like the.
Speaker 2 (03:01):
Prom we never attended together in high school, except this
prom carries a far deeper purpose.
Speaker 3 (03:08):
The Black Tie Gallant raises funds for children.
Speaker 2 (03:11):
Or and Wade publics part disease, and will feature both
silent and live auctions, an elegant played at dinner, live entertainment,
and the presentation of the prestigious Cure Awards.
Speaker 4 (03:24):
What excites me most.
Speaker 2 (03:25):
Is the chance to hear from the world renowned researcher
under Doris Taylor.
Speaker 3 (03:30):
Whose groundbreaking work uses stem cells to.
Speaker 4 (03:33):
Build entire human parts.
Speaker 2 (03:36):
The possibilities of her research are breathtaking, and I can't
wait to hear the latest updates from her. Lap. Like
our upcoming guest, the Building the Care Foundation shows what's
possible when a grassroots effort takes hold and refuses to
wait for change, real progress won't come from government action alone.
(03:58):
It happens when members of the PhD community pull together,
engage philanthropists, collaborate and make innovation a priority.
Speaker 3 (04:09):
And now let's turn to a conversation that embodies that
same spirit of community and determination, my.
Speaker 4 (04:16):
Interview with Christie Pace.
Speaker 3 (04:19):
This content is not intended to be a substitute for
professional medical advice, diagnosis, or treatment. The opinions expressed in
the podcast are not those of Hearts 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.
(04:43):
Christie Pace is a devoted mother, grandmother, a businesswoman whose
life took a.
Speaker 5 (04:48):
Heart to heart with Anna. Is a presentation of Hearts
to Unite the Globe is diet and it's part of
a podcast network Syndrome Hearts Tonight. The Globe is a
nonprofit organization to go to providing resources to the congenital ladys,
power and rich the lives of our community members. If
you would like access to free resources.
Speaker 3 (05:06):
Contending to the PhD community.
Speaker 5 (05:08):
Please visit our website at www. Congenderpartdfix dot com. For
information about HD the hospitals that treat children of PhD,
summer camps for HD survivors, and much much.
Speaker 2 (05:20):
Wirelessly to ensure no family walks the CHD path alone.
Speaker 3 (05:26):
Welcome to Heart to heart with Anna Christy.
Speaker 1 (05:29):
Thank you, Anna. I'm so grateful to be here today.
Speaker 3 (05:33):
I'm so grateful to be talking to you today and
to learn about your experience having a grandchild with a
heart effect. Can you tell me what it was like
for you the moment you heard that Hunter had the
hypoplastic left heart syndrome diagnosis.
Speaker 1 (05:52):
When I first heard, honestly, it's the little blanked out.
She called me. She had gone by herself, and I
was in shock.
Speaker 3 (06:05):
Yeah.
Speaker 1 (06:06):
I went from I think fear to protection the mama bear,
to anger to fear, confusion, looking for his solution, looking
for a way to fix it. I think all of
(06:26):
that happened in probably fifteen seconds. Yeah. Do you remember
going over to her house and seeing her. It's not
a fair situation to see her twenty one year old,
pregnant with her first child, who has been so happy.
(06:48):
She did everything right, She graduated early, she married her
high school sweetheart, and they're building their event else. She
started a career in real estate, working in the firm
with me, and then just he's knocked out from underneath her. Yeah,
as mom, it's hard to accept the diagnosis, but it's
(07:12):
also my baby.
Speaker 3 (07:14):
Well, sure you wanted to be there for your daughter,
so you knew you just had to put your own
feelings on the back burner for a little bit to
be there for your daughter.
Speaker 1 (07:25):
I imagine very much, very much so. And of course
I had one hundred things running through my head that
I wanted to say. But she's married now, right, and
this was between her and her husband, so I needed
to wait for her to ask questions. That was hard
to It was definitely on the sidelines and yet right
(07:46):
in the middle at the same time.
Speaker 3 (07:49):
Yeah, I get it. You are always your child's parent.
That doesn't change even if your child does get married,
and if your child becomes a parent, it doesn't change
the fact that that's still your baby. But you can't
hover over them, and you can't make the decisions, and
(08:10):
you can't give too much an ask for advice or
also just tune you out. So it does really change
the type of relationship you have with your child. It
forces that adult adult relationship, don't you think Christy very much.
Speaker 1 (08:29):
So the dynamic is very different, especially in a scenario
like this, because I think she even struggles, what I
want my mom to be my mom, but it's on me.
I think it even created a struggle for her.
Speaker 3 (08:44):
I imagine it did. I didn't find out until after
my baby was born. I can't imagine finding out in utero.
That would be so hard to continue the pregnancy knowing
that something is wrong.
Speaker 1 (08:58):
That is a challenging part, because it is she went
through the do I do a baby shower, do I
not do a baby shower? Do I put the nursery together?
All of those things that we take for granted in
a normal pregnancy, there were all big question marks for her.
She would ask me, what do you think? So I
want you to do the baby shower? But then if
(09:20):
you do and it doesn't turn out, well, then you've
got that on top of I mean, oh, there's no
right answer.
Speaker 4 (09:28):
There is no right answer.
Speaker 3 (09:30):
You're absolutely right, there's no right answer. I guess if
I were in the same position, I would say, follow
your heart, do what you think is right for you.
But yeah, a big part of you wants to believe.
Speaker 4 (09:45):
Everything's going to be okay.
Speaker 3 (09:47):
How early was she diagnosed in utero?
Speaker 1 (09:50):
She was about twenty four weeks.
Speaker 4 (09:52):
Oh that's pretty early, it is.
Speaker 3 (09:55):
I mean there's still a lot of weeks left to go,
a lot.
Speaker 1 (09:58):
Then, of course, the longer the pregnancy goes, you start
feeling the movement, sure, and the reality that I want
to hold you, that you're safe here. The moment you're born,
you're no longer safe.
Speaker 3 (10:14):
You're not as safe as you are inside your mama's belly.
Speaker 1 (10:17):
That's the mindset, sure, right, That's that internal conversation and
struggle that these moms go through. It's torturous.
Speaker 4 (10:25):
Yeah, yeah, it really is.
Speaker 3 (10:28):
Every minute probably feels like an hour in some ways.
I thought for sure I would have to have a
c section. I didn't have confidence in myself. I was
really afraid. And I wasn't twenty one either. I was
twenty eight when I had my first one. So I
can't imagine being as young as she was and knowing
that the baby is going to have problems. Did she
(10:50):
have to go to a different hospital to have the
baby than what she was intending to go to to
begin with?
Speaker 1 (10:56):
She did. She was three hours away at vanderbil at
Monroe Junior and She actually relocated a month before Okay
into a hospitality house and then went into labor and
she did end up having a sea section. I had
(11:17):
really hard time with pregnancies and deliveries and had emergency
sea section on my first one and on my second one,
and had several miscarriages. As a mom, you always want
for your children what you didn't have. I think that's
just a universal thing. We want better for our children,
(11:39):
And since I had such a hard time with pregnancies
and deliveries, I just wanted my girls to be able
to have a normal experience. I had a lot of guilt,
not that it was anything I did, but I experienced
that guilt. Did I pass this problem down? What did
I do? Was this something I did? I battled that
(12:01):
same thing in a different manner, but the emotions are
very similar.
Speaker 3 (12:05):
I wonder if you had a little bit of PTSD
as well, if you experienced difficult deliveries yourself, and knowing
what your daughter was in for. She was far from home,
so she was not in the environment she thought she
was going to be. She was far from you, although
(12:26):
knowing you you were there.
Speaker 1 (12:28):
I was in town, but it was during COVID and.
Speaker 4 (12:32):
She gave birth during COVID.
Speaker 3 (12:35):
What did that mean for you?
Speaker 4 (12:36):
Were you allowed to be in the hospital with her?
Speaker 1 (12:40):
No? No, When they were doing the delivery, I was
in town. Several of her family members were in town,
banane us could be there, so we were close by,
sitting at the coffee shop three minutes from the hospital.
It was as close as I could get.
Speaker 4 (13:00):
Sure.
Speaker 3 (13:02):
Wow, oh my gosh, So you're sitting near where you're
pacing because you can't do too much of any one
thing for too long. When did you get the call
that the baby had been born?
Speaker 1 (13:15):
September thirtieth, twenty twenty. She did have to do sea section.
They didn't want to do any more stress on him
sure through the delivery, so they did ce section, And
I hated that because I had C sections and I
knew what she was going through. I hadn't really thought
about the PTSD, but I'm certain that played out. And me,
(13:38):
now that you've spoken those words to.
Speaker 3 (13:40):
Me, Yeah, it's amazing what we go through without even
thinking about it. Because our focus is on our child
or a grandchild. It's not on us. It's what we
want to be for them, what we want to do
for them. It's not on ourselves.
Speaker 1 (13:57):
Yep, me and my children were very connected to well
know if something's wrong. Sure, I could feel a lot
of it. That was very hard. I'm glad Anthony got
to be there for the delivery, he got to hold
Hunter that she did not until I think the next day,
(14:18):
which is the same thing I experienced with my first And.
Speaker 3 (14:23):
I just saw history being repeated.
Speaker 1 (14:26):
I didn't and that feeling.
Speaker 3 (14:29):
The empty arms, the arms that are aching to hold
your baby.
Speaker 1 (14:35):
For me, mine was just in the next room. I'm
going to cry for hers. It was in a completely
different wing. You know. That just broke my heart for
her even more because I knew Andrea, my oldest, was
just in the next room, although I hadn't seen her yet,
that Haunter was a long ways the way. And it's
(15:05):
really hard what these moms go through. Yeah, And it's
amazing to me, Hannah, because I've wondered why I've had
such a drive and a push for this, and as
we're talking here, I'm realizing how much of my own
trauma if pulled up into this and why I want
(15:30):
to fix it for so many people. Yeah, because I
experienced it, and I never wanted my children to experience it.
Let's go back to COVID. It wasn't allowed there, and
then he had at first surgery and then it too much.
Speaker 3 (15:45):
Wait a minute, Wait a minute, Wait a minute, wait
a minute. Okay, I understand you not being allowed to
be in the room with her, But after the baby
was born, you weren't even allowed to go stand in
the hallway and look at the baby through the glass windows.
Speaker 1 (15:58):
Oh no, no, we weren't allowed in the house little period.
Speaker 3 (16:01):
Oh my gosh, Christy, Yeah, okay, but to see your
daughter after she gave birth, you weren't allowed to do
that either.
Speaker 1 (16:09):
Nope, not till she was discharged.
Speaker 3 (16:11):
Oh my gosh, Okay, that would be unbelievably hard.
Speaker 4 (16:17):
Wow.
Speaker 1 (16:18):
And they were also in this stage of only one
parent being able to be there at a time. They
got a few waivers for big events like surgery days
where both could be there. If there was a procedure
or something, they both could be there, but the majority
of the time it was one parent or the other.
Speaker 3 (16:40):
Wow.
Speaker 1 (16:41):
But they had to alternate.
Speaker 3 (16:43):
Were you driving the three hours to be as close
as you could or did you have a hospitality room yourself?
How did that work out?
Speaker 1 (16:53):
Now? I drove and I was in an hotel. Okay, yeah,
I would drive down and day in a hotel.
Speaker 3 (17:01):
How old was Hunter before he had his first surgery?
Speaker 1 (17:06):
Two days?
Speaker 4 (17:07):
Oh? Wow, it was fast.
Speaker 1 (17:09):
It was very fast.
Speaker 3 (17:12):
How long was he in the hospital after he had
his first surgery?
Speaker 1 (17:17):
Unfortunately he had some complication. He was in for total
of five months.
Speaker 3 (17:22):
Oh my gosh.
Speaker 5 (17:24):
Yeah.
Speaker 1 (17:24):
He came home on Christmas Day.
Speaker 4 (17:26):
Wow.
Speaker 1 (17:28):
Yeah. So he went into cardiac arrest at two months.
And that's the first time I got to meet Hunter
because they weren't sure if he would make it, so
they did a twenty four hour wafer to allow the
family members to come in and meet him.
Speaker 4 (17:46):
Oh my goodness.
Speaker 1 (17:48):
And so I got to meet him.
Speaker 3 (17:56):
Well, talk to me about seeing that grand baby for
the first time. Were you able to hold him?
Speaker 1 (18:03):
No, he was some paralytics okay and on echmo.
Speaker 3 (18:09):
Oh he was on echmo too, Yeah.
Speaker 1 (18:12):
So unfortunately we could not hold him. That's the first
thing I asked, is can I touch him? And Caitlyn
pointed to his foot, and so you can touch his
foot because it was the least amount of wires and
tubes and everything. So I would touch his foot and
I talked to him and spent some time with him.
(18:35):
We all went to dinner, and after dinner, I went
back to the hospital and sat with him, just me
and him, and I had a long conversation.
Speaker 3 (18:50):
What did you tell him?
Speaker 1 (18:55):
Told him that his mama needed him to be strong
and I knew he could, and that we needed him
to fight, and that I loved him, And I was
sorry I wasn't there, but I promised him that things
(19:18):
were better than just this in life. I told him
all sorry I was that he had to go through
all of these things, but there were so many good
things that he could look forward to.
Speaker 5 (19:36):
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 pretending to the PhD community,
(19:56):
please visit our website at www. Congenital hear Artdefects dot
com for information about CHD, the hospitals that treat children
with PhD, Summer Camps for HD survivors, and much much more.
Speaker 3 (20:14):
Embark on a heartwarming odyssey with Baby Heart's pressure gateway
to uplifting stories for the 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 her father, and my brother
needs an operation. Books celebrating strength, love and familiar support.
(20:36):
Visit babyheartspress dot com and be part of our loving
community uplifting hearts one story at a time.
Speaker 5 (20:46):
You 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 heartwith Anna dot com.
Speaker 6 (20:58):
That's Anna at.
Speaker 5 (20:59):
Heart to Heartwanna dot com. Now back to Heart to
Heart with Anna.
Speaker 3 (21:09):
Christy. When I heard you telling the story of what
you said to Hunter, tears immediately sprang to my eyes
because I remember telling my baby the same thing. And
I felt guilty because I told my baby before the
first surgery that she was going to have to fight
(21:33):
and I couldn't live without her, which felt really selfish,
but I just knew I wouldn't be the same person
without my baby. I was so glad that she was
such a fighter. And it sounds like Hunter also has
that fighting spirit. Remember that when Hunter is a teenager. Oh, yes,
(21:58):
because sometimes it's a double edged sword.
Speaker 1 (22:02):
Yes it is.
Speaker 3 (22:03):
And I had to remind myself many times that you
want your child to be a fighter, Anna.
Speaker 1 (22:09):
Yes.
Speaker 3 (22:10):
But I think one of the things that surprised me
in the hospital was the support I got from people
I wasn't expecting to get support from.
Speaker 1 (22:21):
Did you feel that at all? From the other parents,
and that whole.
Speaker 3 (22:26):
Adult from parents, from the woman who was cleaning the
floors when I told her thank you.
Speaker 1 (22:33):
I didn't get to experience that. But yeah, that my
daughter did, okay, And she connected with several parents on
the floors and some of the nurses, and yes, some
of the cleaning personnel. She did mention several of them.
I think you're right. I think that's definitely part of it.
Speaker 3 (22:54):
Yeah, you find community and connection in places that are
sometimes unexpected. Yeah, I'm curious what support you received. My
mother was in the hospital with me when we were
having that for surgery, and she met other grandparents. It
meant a lot to her to be able to speak
(23:15):
to other people who were going through the same thing
she was.
Speaker 1 (23:20):
Honestly, I didn't have much support outside of an immediate
friend and family. It was interesting watching some people's reaction.
Now people deal with it. You've got a large group
that like, oh, I'm glad you've made it through his surgery.
I'm glad it's fixed. It's hard to explain to people
(23:41):
that it's just stable.
Speaker 4 (23:43):
Yeah, it's not fixed.
Speaker 3 (23:45):
And now I had so many people say to me, now,
everything's okay. As much as I wanted to tell them, yes,
everything's going to be okay, I couldn't lie to them.
Right I knew that things are okay for today, and
that's what I would say, Yes, things are okay for
right now, But I couldn't promise them that things were
always going to be okay.
Speaker 1 (24:06):
And that have a lot of pressure on you as well.
Speaker 3 (24:12):
Yeah, I think the whole family feels a need to
protect and yet it's not protecting people to keep the
truth from them. So how do you gently share the
truth without scaring people or making people upset?
Speaker 4 (24:27):
Everybody that you meet is going.
Speaker 3 (24:29):
Through that, your best friend, your next door neighbor. This
has a ripple effect that I think a lot of
people don't realize absolutely.
Speaker 1 (24:39):
And then you have where some people are scared sure
and are afraid to touch them, raid to be alone
with them. Some people don't want to get connected because
they're afraid that they'll get hurt. Yeah, if something happens,
just watching the loss. Most people got through the normal
(25:01):
transition of getting married and then having children around. You
outgrow a lot of friends in that phase, and then
there's other ones that are on that same trajectory issue,
so you stay connected, but with them now your child
not like their child, grandchild's not like their grandchild. And
(25:25):
then the isolation that's experienced is huge.
Speaker 3 (25:30):
Let's talk about the isolation because I think that's a
big issue and it's an elephant in the room nobody
wants to talk about.
Speaker 1 (25:38):
Here is get the isolation. Even without COVID, you've got
the phase surgery and inner stage is the very tricky stage,
so dritical stage. Yeah.
Speaker 3 (25:51):
I was told that we had to do everything we
could to keep the baby as healthy as possible to
be a candidate for the next person.
Speaker 4 (26:00):
Otherwise there was no moving on.
Speaker 1 (26:03):
Correct and the level of isolation and fear that that places,
you know, you're afraid to go out. You're afraid to
go to a family dinner, you're afraid to have other
people around. I watched Caitlin. She was petrified to let
go because what if her action actually created a situation
(26:32):
where he got sick and died. That's where her mind's going, right,
and so she says, I can't. I want to, but
I can't. This internal battle of isolation, it's not a choice.
Speaker 3 (26:47):
You don't feel like it is a choice. I agree
with you, one hundred percent. Yeah, And yet your family
feels that it's a choice and that you're continuing to
exclude them from your life, and that it's not what
you're trying to do. What you're trying to do is
provide the best opportunity for your baby to survive. So
(27:08):
there'll be many more tomorrows with the family.
Speaker 1 (27:11):
Yes, a lot of family does not understand that there
were family members within our family that just wanted to
stop inbiting because there was always a no. I don't
care if it takes two years of nos, you don't
stop in biting. You accept that that's for circumstance and
it's not personal. This is life and death. This isn't
(27:32):
I don't want them to get a cold. If life
and death.
Speaker 3 (27:36):
This is what a lot of people don't understand. If
there was some running nos, I couldn't take a chance
that it was just allergies because that could land my
baby in the hospital and my baby could die exactly.
Speaker 1 (27:49):
Yeah, So the isolation is very big, the mental anguish
that it creates for these parents.
Speaker 3 (27:57):
Yeah, I can't imagine going through all of this and
COVID because that was another threat that made everything even
more exacerbated. And talk to me about Hunter, Talk to
me about how he's inspired you to have a whole.
Speaker 4 (28:19):
New mission in life.
Speaker 1 (28:22):
Definitely seeing him after his cardiac arrest and having that
conversation with him, not being my first meeting with him,
and him pulling through all of that and coming home,
my gosh when he came home even more so, just
wanted the most for him. Sure, I like to research.
(28:45):
I've always been that way. I died deep into things
I want to understand as much as I can. Part
of it's just being able to have a little bit
of a feeling of control with it, just by knowledge power.
Speaker 3 (28:58):
Yeah, you've got to look at what you can do,
and that was something you could do.
Speaker 1 (29:04):
Yes, I spent a lot of time doing that, joining
groups and looking for help, for connection and for resources,
and was very frustrated with the process. It's not that
I didn't meet good people in the process. I did,
but oh my gosh, it was so scattered that I
(29:28):
was like, what is this? And over the next several years,
I just continued to look and watch. I'm looking at
the progression. I'm not looking at just today Caitlin, my daughter,
and Hunter are stuck in Today. Kaitlyn's surviving with Hunter,
and I'm helping as much as I can. But I'm
looking at the future. I'm looking down the whole path
(29:50):
of this community and realizing that there's too many aisles
to walk down. It's like this big maze and it's
not clear enough. There's not a clear direction. There's not
a clear path for resources, supports, and the direction to
(30:18):
travel with HD.
Speaker 3 (30:21):
I see things a little bit differently than you do
because I've been.
Speaker 4 (30:24):
On this path for thirty years. But you're right that things.
Speaker 3 (30:28):
Are very scattered, and it's amazing to me.
Speaker 4 (30:31):
This is the number one birth defect, and.
Speaker 3 (30:33):
Yet we are not more cohesive, We're not more unified.
There are some of us.
Speaker 4 (30:41):
That have found each other and clung to each other
that we're each other's support network.
Speaker 3 (30:47):
The American Heart Association pays a little bit more attention
to us than they did three decades ago.
Speaker 4 (30:54):
But you're right, it is.
Speaker 3 (30:56):
Better than it was three decades ago. It's still not
where I think it should be. But their focus is
on a quieteart disease and their mission is stroken heart attacks.
There was a very different mission. Yes, we don't have
that one all encompassing organization.
Speaker 4 (31:14):
That brings us all together. Yes, I agree.
Speaker 1 (31:19):
My first thought was, well, I'm starting a nonprofit. And
I started researching that and started seeing all of these
out there.
Speaker 3 (31:27):
There are a lot of nonprofits out there.
Speaker 1 (31:29):
There are, and they're started with passion, absolutely, and I thought,
we don't need another foundation. That thought, it's what I
said to myself. Last thing we need is another foundation
to pull more run the entirety. Then I started going, well, okay,
(31:52):
then what's the fix because this group's doing great things.
That group's doing great things, but it took me four
years to find them. Yeah, and that's with me as
a researcher. When I started digging, I found a bunch
more these moms and dads who are in the throes
(32:16):
of it. They don't have the time, the energier space
to be searching like I did.
Speaker 3 (32:25):
I've been doing this for thirty one years, and there
are things that I've missed too, because everything is not
easily found. I think you're absolutely right there there are
a lot of hidden gems. Yes, how do we come together?
How do we make everybody found? I have over one
hundred pages on my website jest of resources, over one
(32:49):
hundred pages. A lot of organizations folded after COVID.
Speaker 4 (32:53):
It was really really hard.
Speaker 3 (32:57):
How do we come together? Let's talk about HD nextparts.
Speaker 1 (33:01):
I went through what's the solution? And I thought long
and hard, and I went down rabbit holes. I realized
that there's so much good out there and we're missing it.
But it made more sense to me to create an
actual ecosystem, and it would be a place where the
(33:22):
organization can be there, the foundations, the researchers, and all
the people in the community affected by PhD, family members, patients, parents, grandparents,
and the people who want to be involved. It's not
a support group, although they would get support within that community.
(33:45):
It's an actual ecosystem. It's the CHD world. Is the
way I envision it and this is the spot that
you go. If we're all in one hub, then everyone
can be touched or connected. In the hub. There's a
search parimeter, so if you're looking for something specific, you
(34:08):
can search that key word and it's gonna pull up
everything that has to do with that. If Anna has
a podcast that she wants to do, she can announce
it to the entire community. If there is a researcher
trying to do clinical studies or get new information out,
(34:28):
they can announce it to the entire community. And it's
a private community. There's no advertising, there's no algorithms, there's
no AI playing in it.
Speaker 3 (34:40):
It's so funny because I'm watching history repeat itself. Well,
if we first had our diagnosis, there was nothing. I
don't even exactly know how we found each other, but
we've found each other online and we did have AOL chats.
It was only people at a heart our community, and
(35:01):
we had list serves. It was no advertising. It was
only her parents and that was it. As it got
bigger and bigger, there was so much to try to
keep up with. Then my kids were into sports and
there was a homeschool mom. We did volunteer work in
the community, and I took a step back from the
(35:24):
heart community for about ten years. When I came back,
everything was different. You're talking about, let's go back to
the way it was before. Let's just have our tiny
little community. I'm kind of laughing while I'm listening to this,
because I'm thinking, Yes, that's the way it used to be,
and everybody knew who everybody was. It was a homogeneous
group of people who were all together. We all understood
(35:47):
each other's concerns. We didn't have to explain things like
we did to our friends who didn't have kids with
heart defects. And that's what you're talking about doing, is
recreating that.
Speaker 1 (36:01):
It sounds like it. It really does now. Did you
have the organization from the foundation in there as well?
Speaker 3 (36:07):
No, okay, no, not that I know of.
Speaker 4 (36:11):
I didn't have my five, one, C three.
Speaker 3 (36:13):
Back then we were living through it. We hadn't created
those organizations yet. We certainly didn't have those organizations reaching
out to us. And that's what's different with CHD Connects Hearts.
Some of our organizations have been around for a while
now and we do have resources.
Speaker 4 (36:32):
There really was not much of anything for us back then.
Speaker 3 (36:36):
We just had each other, which is beautiful.
Speaker 1 (36:40):
It is, it really is. You've got this cumulative level
of experience now and there is so much available to
help parents, but we need to have it readily available
to them.
Speaker 3 (36:55):
We had a different type of organization, yes, not like
a foundation. Organization is in being organized heavy, one place
where things can easily be found, people can easily be
connected to without distractions. Yes, there are so many distractions.
I find it so hard to focus when I'm online
(37:16):
now compared to what it used to be for me.
Speaker 1 (37:20):
I've noticed that even since AI came out, that the
online experience has been very different.
Speaker 3 (37:29):
Yeah, I feel like everything is attacking me to try
and get me to spend money there that's great money
or time, and my time is as precious or more
precious in a lot of ways than my money, and
I get sucked into these black holes of videos and yeah,
I am embarrassed. I can't go on Pinterest anymore because
(37:51):
it sucks so much time out of my life.
Speaker 4 (37:54):
And I look up and there's.
Speaker 3 (37:55):
Three or four hours that are gone and I was
just looking at fun recipes and craft product So I
want to do with my sister.
Speaker 1 (38:02):
I bet you ended up somewhere else too. If I
started one spot and I come about the other end
going how did I get there?
Speaker 3 (38:08):
Yes? Yeah, it's hard to stay focused and it would
be nice to have something that's a little more simplified.
Speaker 1 (38:16):
I like the word you used as organized. Yeah, I
think that's the key. It's funny when I'm driving down
the road, I have these visions of billboards in every
town that says the HD connects hearts. If you or
your family is affected by congenital heart defects, here's your home,
and have this vision of it. And it's not for me,
(38:41):
it's for the community. It's for progression, it's for collaboration.
It's for pushing us forward, taking us to that next level,
and taking this chaos and making it organized chaos in
the system. There's a place for affiliates, and that would
be where the organization and foundations have their own chats
(39:05):
that they could actually say, Hey, we're wanting to work
on this project. We might have two or three other
foundations or organizations already working on that. What if they
would collaborate and do it jointly. What can be produced
from that? That, to me, it's just beautiful. That's where
we're at in society, and at this stage of life,
(39:30):
there's so much information and so much happening that if
we can collaborate, we can actually make progress. And that's
what I want to see. I want to see progress,
and in order for my grandson to get progress for
his future, then everybody's got to have it.
Speaker 4 (39:50):
Yeah, I agree.
Speaker 3 (39:51):
Tell me how people can find HD connects hearts.
Speaker 1 (39:55):
It's chdconnectshearts, dot com, backslash homes and now it'll take
you strength to the site and get a little more information.
Speaker 3 (40:06):
What does it cost to be a member?
Speaker 1 (40:09):
We have that two dollars technology fee. We want this
to be community driven, not foundation driven, not organization driven.
I want it to be owned by the people. Therefore,
we're going to have the community coming to us instead
(40:32):
of us trying to go out there and seek them.
The only way to do this is technology and staff.
I've already got the technology. I've invested just about every
penny I have. I'm now paycheck to paycheck because of it,
and no regrets. Of course it's scary, but no regrets
(40:52):
and so much I believe in it. And I've got
the staff already and I'm paying them every month, just
to keep it going even though it's still new. It's
worth it and now it can happen.
Speaker 3 (41:07):
You can't even get a cup of coffee for two
dollars a month, so that's totally reasonable. Technology does cost money,
especially if you do want to keep the information private,
you don't want to have advertisers. The affiliate program, friends,
is not what you might think. It's not like the
Amazon affiliate program that sends you to another place so
(41:30):
that she'll spend money and money comes back to Christy.
Speaker 4 (41:34):
Just the opposite.
Speaker 3 (41:35):
The affiliate program is Christie bringing all of these organizations
together so that we can reap the benefit of being
a community. So there's no money coming to Christy from
the affiliates. And in fact, if I'm not mistaken, Christy,
you're taking a little bit of the technology fee and
you're going to be sharing that with some of the affiliates.
Speaker 4 (41:57):
Isn't that right?
Speaker 1 (41:58):
That is correct. So any of the Elliott that signs up,
and anyone who signs up under their code as a member,
then they don't get ten percent of that many.
Speaker 3 (42:10):
So nobody's getting rich here because it's not about the money.
But we don't want Christy to go broke. And having
this platform for us where we can have our privacy
and we won't be inundated with ads and things that
have nothing to do with the heart.
Speaker 1 (42:26):
This is the one.
Speaker 3 (42:26):
Place where you can come and be in a safe
space with other people who understand your heart woes and
your heart joys like nobody else does. You can still
go to all the other places that are out there,
but there you're having a lot of other things vying
for your attention. Here at PhD Connects Hearts, it's just
(42:47):
focused on the heart, and I think it's going to
be a beautiful community. I hope everybody will read my blog.
I'll be putting a link to the blog and to
Christy's platform in the show note.
Speaker 4 (43:00):
But I'm going to be.
Speaker 3 (43:01):
Having a cup of tea once a week on Tuesdays,
and I'm going to invite people to chat with me
on THCHD connects Hearts, and I have a feeling I'm
going to be going out there more than on Tuesdays,
but I'm starting with once a week for thirty minutes
before I start my work. I'm just going to be
on the platform talking with other people, meeting some new people,
(43:23):
and developing those new relationships in a heart community.
Speaker 4 (43:26):
So if you want to join me, please do.
Speaker 3 (43:28):
You can use my affiliate link, or you can just
go to her homepage. It doesn't really matter. What matters
is that we come together and we can share and
talk with one another. I received a lovely message today
from a mom who also has an adult in her thirties,
and she and I have been chatting in private messages.
(43:51):
It's been so nice to have somebody else who really
understands what I'm living through because she and I were
experiencing the same things at the same time. This is
what we can have on this platform. So I hope
you'll join us on THCHD Connects Hearts. Christy, thank you
so much for sharing part of your CHD journey with us, part.
Speaker 4 (44:14):
Of your life with us.
Speaker 3 (44:16):
We shared a few tears, and I think we also
shared some laughters. So thanks for coming on a program
with me.
Speaker 1 (44:23):
Thank you, Anna. I have really enjoyed this.
Speaker 4 (44:26):
I did too, Christy.
Speaker 3 (44:26):
I feel like I know you a lot better now.
Speaker 1 (44:29):
Many layers, many layers.
Speaker 3 (44:31):
I'm so honored to have had Christy Pace on my
podcast today. Today's episode began with memories of the handwritten
notes and heartfelt connections I received after publishing my first book,
reminders of how powerful community can be. In PhD News,
I shared my excitement about the upcoming cure Gala, a celebration,
(44:53):
a research and collaboration, and in our conversation with Christy Pace,
we saw those same themes come alive as she described
creating HD connects Hearts a place where families can find
one another without distraction. If Christie's vision inspired you, I'd
love you to keep that spirit of connecting going. Join
(45:14):
me every Tuesday at eight thirty am Central Time on
PhD connects Hearts for a relaxed half hour of sharing
and support, much like those early days before Facebook, but
we simply told our stories from the heart. You'll find
a link to Christy's platform in the show notes so
you can easily sign up and join a conversation. Let's
(45:35):
keep building the kind of heart centered friendships that truly
sustain us. Until then, Remember, my friends, you are not alone.
Speaker 6 (45:51):
Thank you again for joining us this week.
Speaker 5 (46:07):
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
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