Heart to Heart with Anna

Heart Sister, Heart Warrior and Heart Mom!

January 08, 2018 Steffe Becker Season 11 Episode 2
Heart Sister, Heart Warrior and Heart Mom!
Heart to Heart with Anna
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Heart to Heart with Anna
Heart Sister, Heart Warrior and Heart Mom!
Jan 08, 2018 Season 11 Episode 2
Steffe Becker

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Steffe Becker is in a unique position. She is the sister to a brother with a congenital heart defect (CHD). She was born with a heart defect herself and she is the mother of twins. One of the twins was born with a heart defect. Tune in to today's program to hear what life was like for Steffe growing up in the 1970s and 1980s with a heart defect and what it was like to have children in the 2000s -- one with a heart defect and one heart healthy. She has a unique historical perspective and she shares with Anna what it was like to grow up in a "heart family" and what is normal for her and her family.

We appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!

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Steffe Becker is in a unique position. She is the sister to a brother with a congenital heart defect (CHD). She was born with a heart defect herself and she is the mother of twins. One of the twins was born with a heart defect. Tune in to today's program to hear what life was like for Steffe growing up in the 1970s and 1980s with a heart defect and what it was like to have children in the 2000s -- one with a heart defect and one heart healthy. She has a unique historical perspective and she shares with Anna what it was like to grow up in a "heart family" and what is normal for her and her family.

We appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!

Support the Show.

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

Social Media Pages:

Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
Website

spk_1:   0:00
Theo

spk_2:   0:03
Theo. The 11th season of Martyr

spk_0:   0:05
with Anna. Our theme nous season is Heart were your siblings, and we have a great show for you today. Today's show is Heart Sister, Heart Warrior and Heart Mom and Our Guests. To Steffy, Becker will be talking with stuffy about her brother, who was born with a congenital heart defect and the fact that she has twins, one with a heart defect and when without Steffy. Becker was born in 1968 without an aortic valve and with co rotation of the aorta and a ventricular septal defect, or VSD. She has had seven open heart surgeries and multiple pacemaker generator changes due to write bundle branch block. Steffy is a mom of twins Alexander and Zach, who are now 17. Alexander was born heart healthy, while his brother, Zach was born with bicuspid, aortic valve and multiple other heart conditions. Several also has a brother who was born with a bicuspid aortic valve, an aortic stenosis. He received a mechanical about over 40 years ago and has been very healthy without additional interventions. In fact, Stephen's brother prefers not to talk about his heart conditions at all. So welcome to heart to heart with Anna Steffy.

spk_3:   1:17
Well, thank you. Thanks for having me.

spk_0:   1:19
I'm very happy to have you on the program today. And I'm so curious about your brother. So can you tell us? First of all, is your brother younger or older than you?

spk_3:   1:29
He's two and 1/2 years older than me.

spk_0:   1:31
And do you remember your brother having surgery or did he have it before you were even born?

spk_3:   1:38
He had surgery six and 1/2 months prior to mind when I was 11.

spk_0:   1:42
Oh,

spk_3:   1:42
that was his first surgery. He was 13 when he had his first surgery. I was away. Sleep away camp, so I don't remember the process.

spk_0:   1:50
But he was already a teenager before he had his surgery. So I guess it wasn't a condition that bothered him too much as a youngster growing up,

spk_3:   1:59
correct. He had a bicuspid aortic valve that leaked, but it wasn't a severe leak. And as he got older and obviously as he grew, the heart grew. The leaking became more significant. And by the time he was 13 it was scheduled, as opposed to an emergency surgery. So they were able to monitor it You know, back in the sixties, early seventies, we didn't really have echoes like we have a

spk_0:   2:22
date, right?

spk_3:   2:23
No, it was more guesswork.

spk_0:   2:26
That's right. So you said that you had surgery right around the same time your brother did. But that wasn't your first surgery, was it?

spk_3:   2:33
No, that was my third.

spk_0:   2:36
How old were you when you had your first surgery?

spk_3:   2:38
I was five hours old when I had my first surgery. And then I had another repair five weeks old, and that took me until I was 11. Which was when I got my mechanical valve.

spk_0:   2:51
Okay, so then both you and your brother had mechanical valves. Put in it about the same time.

spk_3:   2:56
Yeah, six and 1/2 months apart.

spk_0:   2:57
Wow. Was your recovery similar?

spk_3:   3:01
No. I believe he was home within, like, 10 days after surgery again. I was a camp, so I wasn't there for, but I believe he was home about 10 days after surgery with no complications, I went into a right bundle branch block and being 11 going on 12 in the late seventies, early eighties. They weren't keen on putting pacemakers and Children right away,

spk_0:   3:26
right? They didn't have them small enough, did they?

spk_3:   3:29
No. Sorry. About 67 months in the hospital with an external pacemaker that came out of my left arm waiting for it to reverse itself.

spk_0:   3:39
Oh, my gosh. So it sounds like your condition was much more severe than what? Your brother's waas. So did your parents treat you and your brother very differently?

spk_3:   3:49
No. We kind of a raised in a world of you live life to the fullest that you could tow, whatever your capacity, Waas. But we didn't know any different. You know, our normal was all we knew,

spk_0:   4:02
right?

spk_3:   4:02
So we did everything as quote unquote normally, as any other kid would. I mean, we were lucky that we were well functioning to some extent that we went to sleep away camp. We played extracurricular activities. Things didn't really change as faras restrictions until after surgery. And again, you're talking about a generation where we knew very little compared to what we know today.

spk_0:   4:29
Well, that's absolutely true. That's absolutely true. And so I imagine things would be very different if your parents were raising you today because they would have so much more information. Did your parents have any kind of support network.

spk_3:   4:42
There was no support network. I mean, the only other time I actually saw kids that had any kind of heart defect was when we went to the cardiologists. We didn't have anybody in our community that we knew of. There was no community connection as far as a support network for camp, for PhD kids or anything like

spk_0:   5:02
that. At the

spk_3:   5:03
time, we went to a traditional sleepaway camp and nobody thought anything of

spk_0:   5:06
it. That wouldn't be the case anymore. So now you're really a strong advocate in a congenital heart defect community. Is your brother awesome evolved in the heart community?

spk_3:   5:19
No, he doesn't really talk about it. I mean, he got his mechanical valve at 13 and that 40 plus years ago on DDE, he's never had any further issues with it. I mean, his biggest change was going on coming in, and he just lived his life. He had no restrictions, no issues, nothing as he grew, so he doesn't really acknowledge it.

spk_0:   5:44
Wow. Is that hard for you? Considering how severe your heart defect is, it's not like you can ignore yours.

spk_3:   5:51
Well, you know, I think everybody copes and lives with their CHD differently. And I think the effect that R. C H D has on us as far as debilitating us or

spk_4:   6:03
encouraging us is different for everybody. Just like anything in life, you know how it affects you is going to be different for everybody. So it doesn't really bother me. Part of me was to see him involved just because I think he would give so many parents and young kids hope because to go 40 years with your original mechanical vow and no further issues and nothing inhibiting you is really something. It's really something, you know, to knowledge.

spk_0:   6:29
So I think it's remarkable

spk_4:   6:31
you hear about the number.

spk_0:   6:33
Yeah, that's really remarkable. I think you're absolutely right. So do you think that maybe as he gets older, if he has to have that valve replaced, that he may become more involved with the community?

spk_3:   6:46
I don't know.

spk_4:   6:47
I mean, you know, when you're going strong at almost 53 you know, with your original valve, I don't even think he gives a thought any more to it as to ever having to have it replaced.

spk_0:   6:56
Wow, Does that worry you

spk_4:   6:59
every six months so That's a good thing.

spk_0:   7:00
Yeah. Yeah, does it? Where were you? Because you have had your valve. Replace, haven't you?

spk_4:   7:06
Four times.

spk_0:   7:07
That's amazing. So you're in the same family. You both have problems with your valve, but it seems like you've had so much more trouble with yours than he has.

spk_4:   7:18
Well, I had more defects, too. When I was born, I mean, he had stood by custody, ordered vowels that basically ordered stenosis, So that was it. And aortic stenosis is so common with a bicuspid aortic valve because the pressure it puts on that aorta, so granted in his year they didn't know it was common is today a bicuspid aortic valve is a relatively

spk_2:   7:39
common sex farce. All the defects, right? Right.

spk_0:   7:42
Bicuspid aortic valve is the most common congenital heart defect

spk_4:   7:48
here is

spk_2:   7:50
she always needed a lot of attention. She had strokes. Even though it's a national inclination to withdraw from the CHD community, I think being a part of it, help me be part of the solution.

spk_5:   8:04
Heart to heart with Michael. Please join us every Thursday at noon. Eastern. I'm Michael even on. I'll be your host. As we talked with people from around the world who have experienced those most difficult moments

spk_2:   8:22
forever by the Baby Blues sound collective. I think what I love so much about this CD is that some of the songs were inspired by the patient's many listeners will understand many of the different songs and what they've been inspired. Our new album will be available on iTunes. Amazon dot com. Spotify. I love the fact that the proceeds find this CD are actually going to help those with congenital heart defects. Join music Home

spk_0:   8:51
Tonight forever,

spk_5:   8:56
huh?

spk_1:   8:58
Okay, you are listening to heart to heart with Anna. If you have a question or comment that you would like to dress down show, please send an email to Anna Dworsky at Anna at heart to heart with anna dot com. That's Anna at heart to heart with anna dot com Now back to heart, to heart with them.

spk_2:   9:17
Steffy. We just finished talking to you about Have

spk_0:   9:20
Your brother has a much less severe heart defect than what you do, but we didn't really get to talk a whole lot about exactly what your heart defect is. And while I think probably a lot of people who are listening. Know what aortic stenosis is? And bicuspid aortic valve? Probably not. A lot of people know what right Bundle branch block iss. So can you talk to us a little bit? About what? That ISS

spk_4:   9:44
All right bundle Branch block is a block in the electrical system, so your ventricles pick up on an impulse, which allows them to pump when the right bundle branches blocked. Your right ventricle is not picking up on those impulses, so it's not activating, so therefore, it's not pumping on that side. That's what I started with today. Neither ventricle picks up on those impulses. Have, ah, three lead pacemaker, which controls both the ventricle in the atrium,

spk_0:   10:13
and you've had your pacemaker since you were 11.

spk_4:   10:16
That was 11.

spk_0:   10:18
I bet you've seen pacemakers change a lot over the years.

spk_4:   10:22
They have. I mean, I can't say they changed somewhat inside today, which I don't have that they now have a very, very tiny pacemaker. That's wireless, but I still have the traditional generator with the leads they change today. There m r. I compliance. For years, pacemakers were never Amara compliance. Originally, you couldn't go near the old microwaves and today there are still some issues of conviction oven, but as technology changes, we're getting some amazing technological changes in pacemakers they now record. When you transmit, they can actually read the pacemakers, sort of show them any electrical problems that are occurring.

spk_0:   11:02
Wow, that's great. So you don't have to wear Holter monitors or anything because they can see exactly what your heart has been doing, thanks to your pacemaker. Correct. While so I'm kind of curious. It seems like your brother had one operation and then it was done. He's like a completely normal life, a ce faras having to be in a hospital in having operations. Whereas you've had more than your fair share and you've had one operation after another, you've had multiple devices put inside of you. How has having all of these surgeries and all of this attention on your heart? How has that affected you growing up

spk_4:   11:43
then? 11. 12 year was hard because that was a big surgery and a lot of time, you know, 67 months living in a hospital and we didn't have a Children's hospital, you know, they were not prevalent like they are today. So I was living at Mount Sinai in New York in the C I. C U unit, which was mainly adult based. So that changed things a little bit. And then I kind of went back to normal childhood, so to speak. It was young adulthood that had significant changes compared to other age groups. I guess you could say at 2120. And when you go off to college, those are the ages that I really saw the difference. People that didn't know what CHD was didn't understand it. I was no longer in the community. I grew up in with friends that I went all through high school. With that, we're used to the fact that I had a scar on my chest. Things like that.

spk_0:   12:34
Yeah,

spk_4:   12:35
You became more aware of the lack of education about it out there,

spk_0:   12:40
right? Right. So did people treat you differently? Who knew that you had that scar on your chest?

spk_3:   12:47
I don't know that

spk_4:   12:48
they treated me differently so much as because I always had it. And traditionally you go through school pretty much with the same kids all the way through,

spk_0:   12:57
right

spk_4:   12:58
from kindergarten on. So I don't know if they treated me differently or if it just wasn't an issue because it was always there. When you go off the college, people that are unfamiliar with it there like a what's that? And, you know, dating is a whole new dynamic. And there's just all kinds of new dynamics to it.

spk_0:   13:16
Absolutely. That would be really challenging, especially if you spent your entire childhood in one place. It doesn't sound like you moved around. Is that right?

spk_4:   13:26
No, I didn't. I did not move around, so it was interesting in that respect. And even though we lived a normal childhood as faras after school activities, extracurriculars going to camp, all those people were aware that I had this. So it was never a question,

spk_0:   13:42
right? Yeah. They probably had you under their wing. And we're just kind of watching you from afar to make sure everything was okay, but it doesn't sound like they made a big deal about it. Is that right?

spk_4:   13:52
Absolutely. Absolutely.

spk_0:   13:54
But then when you became a young adult, you left home. Everything changed?

spk_4:   13:58
Yeah, we're the only

spk_0:   13:58
world. And now do you only have this one sibling or do you have other brothers and sisters

spk_4:   14:05
No, I only have one sibling.

spk_0:   14:06
Okay, so yeah. So then you did enter into a whole new world when you left home, and I imagine said, your brother's older. He left home before you?

spk_4:   14:16
Yes, he did. He left home before me. I don't know what kind of effect, if any, it had on him.

spk_0:   14:22
Was it a little bit different for you when all of a sudden, you were the only one home alone with your parents?

spk_4:   14:28
No. Nothing changed at all. Like just kept going on. And I mean, it's hard, heart wise. Nothing really changed.

spk_0:   14:35
So what kind of relationship did you have with your brother? Was that the typical sister brother relationship where he would pick on you and treat you like older brothers do? Or do you think he treated you a little bit more gently because he knew you had the heart defect?

spk_4:   14:50
No, I think it was traditional brother sister relationship. He didn't treat me any. I mean, no, I got no grace

spk_0:   14:56
period. Okay. I could just imagine when he was probably like with you and there was probably a lot of teasing and everything. It just normally goes on between brothers and sisters, right?

spk_4:   15:11
I don't know. It didn't play a major factor, you know? I mean, it did play a major factor, obviously when something went south. And, you know, you ended up having to go to the hospital and doctors or whatever, but once the prices was over, it was like nothing happened.

spk_0:   15:24
Wow, you were in the hospital. You said for six months, when you were 11 and he was 13 back then, they did not have Children's hospitals. And you said you were at a hospital that treated both Children and adults. Did they let your brother come and visit you while you were in the hospital? Yeah. Oh, did they? Okay, so was that something that you have fond memories of? Yeah.

spk_4:   15:48
I can't say that it was bad. I mean, that became like a party room. I mean, my cousins would come and aunts and uncles and friends from school would come on the weekends. And it wasn't great by any stretch of imagination. But it wasn't the worst thing in the world either. It was tolerable. Nurses were nice. I mean, I spent my 12th birthday there, so, you know, they had

spk_0:   16:08
a party.

spk_4:   16:09
It was okay. It was okay.

spk_0:   16:12
Well, it's good that you can say that. And I hope that any nurses who might be listening to this show realized you guys were so important. Because this the nurses are the people who are there with the patients all the time, and it sounds like they did it. Okay. Job of not making it seem too scary for you to be there.

spk_4:   16:31
No, they were huge. They were a huge part of it. I don't know. I mean, I credit my parents. I was raised in an environment with This is life. And you have two choices. You either live it or you sit in a corner and cry. It's your choice what you're gonna do with it, right? And so you just always make the best of a bad situation.

spk_0:   16:48
Yeah. Oh, my gosh. A parent. Sound amazing

spk_4:   16:52
how we still live. You know, you

spk_1:   16:54
make the best of the best. Not every day is gonna be a great day. But he put

spk_2:   16:58
him through. I love it. I

spk_0:   16:59
love that positive attitude.

spk_2:   17:01
I am with origami l jewelry and we personalized lockets. It has helped me heal so much by having that locket. I've had other friends and customers who have created lockets. They'd love their lockets, and they gift lockets to people who are bereaved or they're celebrating somebody to get your own origami. Our luck it contact Nancy Jensen on Facebook for her website. Dancey dancey me dot origami owl

spk_6:   17:35
heart to heart with Emma 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 and power and enrich the lives of our community members. If you would like access to free resource, is pretending to the CHD community. Please visit our website at www congenital heart defects dot com for information about CHD, the hospitals that treat Children with CHD summer camps for CHD survivors and much, much more.

spk_0:   18:10
Steffy. It's been so interesting to hear how you and your brother had sounds to me like a completely normal relationship growing up, Even though your parents had two Children, both of them had heart defects. Both of them had valves replaced at young ages. I think your parents and your whole family sounds amazing. But who would have thought that when you started your own family that you would be dealing with heart defects in your own Children was at a complete surprise for you?

spk_4:   18:37
No. You know, I was always told not to have Children. So careful. Wasn't careful enough, obviously. But given my history and the change in times between 1968 1999 they knew to look for it. So we watched and we waited and we did ultrasounds. And we did all the traditional.

spk_0:   18:59
So the doctors told you not to get pregnant, but it sounds like you defied them. Is that true, or was this an accident?

spk_4:   19:07
Well, I didn't I didn't defy them on purpose,

spk_0:   19:10
Okay?

spk_4:   19:10
I didn't defy them on purpose. And my doctor's growing up. Of course. We're in New York, and I was now on the West Coast. Well, I wasn't really on the West Coast. I was in Texas, and the cardiologists there wasn't 100% thrilled, but at the same time, she specialized in congenital heart defect, women and pregnancy. So, you know, we made it happen.

spk_0:   19:33
Wow. I think that's really inspiring. I think there are a lot of parents who are listening today who are parents of Children with heart defects similar to what you have, who are wondering, Well, my child, be able to have a baby, especially if it's a girl. So if it's a boy, it's not quite a serious consideration. But certainly if you have a daughter, this is one of the things that she wonder about. So the fact that you were able to have a child and do twins run in your family were you surprised to see you had not one but two babies

spk_4:   20:04
now twins? I was surprised, aren't I Wasn't surprised when

spk_0:   20:10
that that would actually not surprised me because twins run in my family. And both times I got pregnant. I thought for sure I had twins. When we did the Ultra sent, I thought, sure, one of those babies was hiding. Yeah,

spk_4:   20:23
I know they did. My homie, it was twins. And there could be Maura, and I was

spk_0:   20:27
like, Oh, no, they can't. Oh, my gosh. What do you mean there could be more? Why would they think it could be a little

spk_4:   20:33
line? Sometimes the heartbeat high. And, um, I was so early on when they didn't ultrasound to find it. And I was so early on, which ended up being a really good thing, that it allowed me to get cardiac in an O b g y n care really early on.

spk_0:   20:53
That is good that you did that. So did they find the twins? It Zach, right? Who has the heart defected? They find out in utero.

spk_4:   21:01
They found out in utero. We did the normal ultrasounds and then given my history, the cardiologists recommended that we do an intra uterine echo and we didn't interview Doran Echo, and that's where we found his defect. Alex's heart looked perfectly normal. There was no 100% guarantee that they missed something because the hardest, so small at that point, it's hard to see. But it gave us a clue as to what we'd be facing. No.

spk_0:   21:28
And so you knew right away it looks like Alex is okay. When I said sure about Zach, were they able to pinpoint what the defect was? Or did they just say No? We can tell there's something wrong.

spk_4:   21:39
Oh, no, They pinpointed it. We knew right away he had a bicuspid aortic bow.

spk_0:   21:43
That's amazing.

spk_4:   21:44
They weren't sure about the cyanotic level of the aorta or the aortic root or anything, because that's hard to see, and that continues to grow as the baby develop.

spk_0:   21:55
Mmm. And you found out early. How far along were you when you discovered that Zach did have a heart defect?

spk_4:   22:03
They didn't see it on the 18 week ultrasound, but at the 19th week we did the intra uterine echo when we saw it, or they thought I should say, not weak.

spk_0:   22:13
Well, you were in the same. I'm sure you looked up my butt and it's so Teoh. I just can't believe they could see something that tiny that they could identify it that well 17 years ago. That's pretty remarkable, don't you think? You must have gone to a great sense memory

spk_4:   22:30
teen years ago.

spk_0:   22:31
Yeah, So what center did you go to?

spk_4:   22:34
I was at ST Luke's Episcopal. If they use the medical center, the Texas Medical Center in Houston.

spk_0:   22:39
Wow. Okay, so yea, Texas. And of course, everybody who's listened to the program knows I'm from Texas, so I have to cheer that hospital for 18 years ago to be able to identify in utero, a bicuspid aortic valve. That's pretty remarkable. I guess it was really expensive to have the interrogator and Echo, and they probably didn't want to perform that too often. So did you only have it that one time yet? And then as soon as the baby was born, did they was came away to do more tests on him.

spk_4:   23:08
As soon as he was born, he went to Texas, Children to the nick, you to do some testing, but also because he wasn't clearing out his lungs, which turned out to be pure laziness.

spk_0:   23:19
Oh, no, you just don't wanna cry. Okay, so now you have a pair of Children who won, Has a heart effective one does not mean it's a little bit similar to your situation growing up since your brother's heart defect seem so minor compared to yours, do you see that your boys have the same kind of relationship you had with your brother, where they pretty much just treat each other normally? Or do you see where one favors the other or worries about the other?

spk_4:   23:52
Their relationships a little bit different because their dad passed away when I was 27 weeks pregnant. So it's always just been the three of us. So they do have the normal brother relationship when something goes wrong or Zach's not feeling well or something like that. Alex does jump in as more of the caretaker worries about him. Keeps an eye out for, um, being a school or anywhere. So it's a little bit different than just the standard normal relationship. But they definitely have a normal relationship. I mean, they still throw each other around, wrestle and

spk_2:   24:25
even a 17

spk_4:   24:26
and 1/2.

spk_0:   24:27
Oh, my goodness, I have two sons. They're not twins, But they definitely had a normal relationship, too. And my boys were in taekwondo together. And yes, they threw each other around and kicked each other.

spk_4:   24:40
I mean, I don't know

spk_0:   24:40
what it is

spk_4:   24:41
about poking each other, but they

spk_0:   24:42
love the folk,

spk_4:   24:43
each other one screens, and then they're punching each other. And who knows what.

spk_0:   24:47
It's just typical guys stuff, I guess.

spk_4:   24:50
I bet

spk_0:   24:51
I have one more question for you, Steffy. I can't believe how quickly our time together has gone. But the last question I have for you is how does being ah, heart warrior and a heart sister affect your relationship with the twins? Are you closer to Zach because you've walked in his shoes?

spk_3:   25:08
No, I don't think

spk_4:   25:09
I'm closer to him. I mean, I I think we all have our part of this journey. I can empathize with him more because I've walked in his shoes. But both of those kids have been amazing. We hear about the mom's a deal with the kids. We don't hear so much about the kids to deal with the parents and then obviously only having a single parent. So they've already lost their dad before they were born and make spent 17 years watching me be life flighted away or sitting in a hospital with me. And most recently, last December, watching me just die on the couch because my pacemaker failed.

spk_0:   25:46
Oh my goodness. So

spk_4:   25:47
I think, you know, I think they grow up a lot faster. So I think our relationships a lot closer. So many of those dynamics and the fact that together we started the nonprofit and we worked back together, and we all have our peace in that I think it's just a closer relationship for so many different dynamic But I don't think I'm closer to one over the other.

spk_0:   26:07
No, it sounds like you're really tight knit, and all three of you look out for one another and help one another. It sounds like a really beautiful family.

spk_4:   26:16
We do what we can and we raise awareness and help others get through it because you can live through it. It's all a matter of what your perspective on it is.

spk_0:   26:23
Absolutely so let's give a plug to your nonprofit.

spk_4:   26:27
We started Pocketful of Heart for many reasons. We started one because families need help. The cost of having a PhD child or being a PhD patient is enormous. Insurance is constantly changing, which leads personal liability, changing all the time. So we try to help the families. We've been very lucky. I mean, right now we're in the process of actually making a car payment for somebody so they don't lose their transportation to get back and forth to their other kids and the hospital. We also started it. A very, very long term goal that we're working on is to raise funds that we can build a heart research center that strictly for congenital heart, pediatric and adult and has the ability not to turn anyone away, regardless of the insurance debacle or financial debacles that anybody has. That's our main goal in it is that there are people behind it that have walked the journey that understand it, that have been there, so that when we look at somebody and say we know where you are it's because either we've been a mom watching it or we've been the patient whose chest has been cracked or it's very bland when someone looks at you said, I know what you're going through when in fact they haven't experienced any of it on any level. Maybe being the doctor first, who cares for it and not diminishing? Because we have wonderful doctors and nurses that we couldn't get through this without

spk_0:   27:47
right? Right? But it's that statement. I know what you're going through when they don't really know where, as this sounds like with your nonprofit, your people really understand because I've been affected one way or another. Why don't you tell everybody what your website iss

spk_4:   28:00
it pocket full of hard pocketful with one l A pocket full of heart dot org's everything and everybody that has participated in the setting up of the foundation is Ah, heart family. Our logo was designed by a heart Mom and Dad. Our Web site was built by a heart Dad. Everything we do involves our community and every dollar we raise ghost our community, nobody gets paid. It's strictly 100% volunteer.

spk_0:   28:29
I love it. I love it. Thank you so much for coming on the show today, Steffy.

spk_3:   28:34
Well, thank you for having me with a lot

spk_4:   28:35
of fun. And I'm glad you know, whatever awareness we can raise, we're doing it.

spk_0:   28:39
I love it. Yes, and that's what this show is all about. And it sounds like that's what you're non profit is all about for all part of a community. And I think one of the biggest things is to know that no matter what your income level is, if you can just reach out and do what stuff he was saying help with the website, Do some artwork. My organization horse tonight the globe is the same way The people who work with us volunteer so many hours to help us to do what we d'oh and so reach out to pocket full of hearts or reach out to hearts unite the globe You never know how you can make a difference. So that concludes this episode part art with Anna. Thanks for listening today. Friends. Please come back next week on Tuesday at noon Eastern time. Until then, please follow our show Heart to heart. With Anna on YouTube, you'll find the show by looking under my name and age or

spk_2:   29:30
C J W O R S k. I remember my friends. You are not

spk_1:   29:35
alone. Thank you again for joining us this week Way Hope you have been inspired on Empowered to become an advocate for the congenital heart defect community Heart to heart with Anna With your host damage, Dworsky can be heard every Tuesday at 12 noon eastern time.

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