Congenital Heart Defect Awareness 2015!

Congenital heart defects (or CHDs) are the number one birth defect and yet, this is one of the best-kept secrets! How do members of the CHD community change all of that? Our Guests today include a young woman born with a critical congenital heart defect and her mother. For over 30 years this dynamic duo have been dealing with congenital heart defects -- beating the odds and surviving at a time when most babies didn't make it. Listen today as my Guests tell us what they are doing to raise awareness of CHDs in 2015 and how you can help, too.

Transcript

spk_0:   0:03
Welcome

spk_1:   0:06
to Heart to Heart with Anna, featuring your host Anna Dworsky. Our program is a program designed to empower the CH to York and genital heart defect community. Our program may also help families who have Children who are chronically ill by bringing information and encouragement to you in order to become an advocate for your community. Now here is an edge or seek a heart defect community. According to the Children's foundation around the world, one million babies are born with each year. At least one of 100 Children will be born with

spk_2:   0:44
a heart defect. Some Children will never know that they have a heart defect because they may just have innocent holes that will close up on their own. Some Children won't learn about their heart defects until they fail a physical for a sport they're trying out for. Some people don't find out that they have a heart defect until they collapse on a playing field. More than 50% of the Children born with a heart defect will need some surgical intervention at least once in their lifetime. Sadly, 100,000 babies around the world die each year because of their heart defects. The number of people who could benefit from life saving surgery has risen dramatically over the last several decades, with improved surgical techniques, medications and diagnostic tools. More people than ever before are being diagnosed, treated successfully and living productive and happy lives. There are currently over two million congenital heart defect survivors alive, and their numbers are growing. For the first time in history, the number of adult survivors outnumbers the number of babies being born with congenital heart defects. I'm very excited about our show today. Congenital Heart Defect Awareness 2015 and Today's Guest or Rita and Victoria Scoggins. Rita Scoggins Rights. Until 1983 my knowledge of congenital heart defects was pretty much non existent. I knew something about holes in the heart, but I never imagined that a baby could be born with important parts of the heart missing. When our daughter was born, my family was suddenly dressed into a new world. The world of closed and open heart surgery performed on babies with a heart the size of a walnut. In 1994 I was finally able to connect with other heart parents through this new thing called the Internet. Since that time, I have tried to offer help, support information and hope the other parents starting and traveling on this heart journey. Last year, Victoria decided to do something to raise awareness about congenital heart defects. That it's how the wear Purple Campaign got started. Welcome back to heart to heart with Anna Rita.

spk_4:   2:45
Thank you. And thanks for having me here.

spk_2:   2:47
Well, I'm always happy to have you on the show. And as our longtime listeners know, this is it a second time on this show. And Rita is also a contributor to a book that I put together quite awhile ago called The Heart of a Mother and read A wrote a wonderful essay about Victoria when she was in high school. And that was an essay I wanted so much to have. When Alex was a baby, I wanted to know that my Fontane survivor could live to be a teenager. So thanks again Rita for writing that as they and giving me hope and giving so many other people all around the world hope for their teenage Monty honors.

spk_4:   3:24
It's a great book. I've enjoyed all the essays in it.

spk_2:   3:28
I know. Me too, I feel personally touched by every single one of them. Well, read in your bio. You told us that you're our mom, but can you tell us a little bit more specifically? What victory is hard to fix? Heart.

spk_4:   3:41
Well, Victoria wasn't diagnosed until she was a month old and we were rushed to Houston to Texas Children's Hospital and she was diagnosed with hyper plastic right ventricle due to try custard atresia. She also had a cart ation of the aorta and a S d and the V S d. All those things that I knew nothing about at that time, I didn't even understand the terms they were using. Learn really quickly, though,

spk_2:   4:09
don't you? You know, I think it helps that that you are a teacher by trade. You're used to picking things up quickly. And there's nothing more important that we need to know that what our Children are dealing with, don't you think?

spk_4:   4:24
Correct. So that first trip there when we were a month old, she had a co arc repaired and a p a banding of her pulmonary artery because she was getting too much blood to her monk. So that was the first surgery she had. And then in 1989 she had the Fontane,

spk_2:   4:44
right? Right. So she was, what, six. When she had her. Wow, that seems so old Now doesn't every week in the time had liquor

spk_5:   4:54
on me and I didn't really wanna hold.

spk_4:   4:56
Yes, her doctor really wanted her to wait until she was 10 at that time. Um, mainly because he wanted them to have Dunmore fund hands, But she just couldn't wait that long. She was getting too blue and purple. E holder, right way Always called

spk_2:   5:15
for today's show, isn't it? Purple is the color to remember my listeners. This is the color that we want to focus on. It was a good reason for that. And even though she was purple were kind of glad that she was purple because she was still alive. But really wanted her to be pink again,

spk_4:   5:34
right? Definitely. Although there are still times when she turns purple so well, although she usually

spk_2:   5:41
work effect. And yeah, I was gonna say I don't have a heart defect in when I get really cold. We Texans, we're just not used to the cold weather, and I turned shaping up purple, But I do from blues. Uh, well, you and I are old parents here. We both are parents of adult Children. And I just want you to give a little bit of history about what the Internet did for you when all of a sudden in the 19 eighties, this whole new world opened up for you.

spk_4:   6:10
Well, it's more like the 19 nineties when the Internet.

spk_2:   6:13
That's right. It was a few nineties. No,

spk_4:   6:16
I think I probably started talking to some people in 93 but in 94 there were enough people on the Internet that were heart parents, that we're talking to one another that a list serv was started. And so I jumped on that right away, of course, to become part of that and it was just wonderful to finally have people to talk. Thio had Children who were like my own and

spk_3:   6:40
night.

spk_4:   6:41
It was

spk_3:   6:42
something I

spk_2:   6:42
think you and I met in 96 because I think Alex was two before we got Internet out where I lived and it was dialogue back then you're in the right way. The world wait to hear it. I know you don't open that like you said, it opened up a whole new world for us. We were able to reach out. I remember those serves. I remember us reaching out, and at first we were like 20 of us. That ain't you correspond on a regular basis, and then I really have it. It just exploded,

spk_4:   7:19
right? I actually have some of those lists of things that I printed out of different topics that came up that I was interested in so I would put him out. And so I've got some of the really old one.

spk_2:   7:30
Wow, that's so neat. Yeah, I've seen that. The messages that I wrote that change pigments are that I seem to refer to over and over again. I even put on my Web site for a while. They're not there anymore, but yeah, there are some topics that are universal, and they seem to come up over and over again. It is so much fun to talk to you, though, because I remember those early days and we were also scared. There were so many uncertainties. We didn't know if our kids were gonna be able to go to college or if they would graduate from high school and what kind of challenges they would face and look at us now. But our kids have college degrees. Your daughter has a masters, which is amazing. I'm amazing. So we have grown and changed. Our Children have grown and changed. That's what I want to talk about today, though, is how we've grown and changed his advocate. So can you tell me how you've changed as an advocate in the PhD community reader?

spk_4:   8:26
Well, I've become a little more involved. I think I've always tried to be involved, like through the list serves. And when we first started with the congenital heart defect Awareness Day, Jeanne M. Paretti, she started that and force right away. I wrote a letter to our governor and got a proclamation to make February 14th PhD Awareness Day. It was just a day back then when it first started, so I was involved with that. And of course, now that we have Facebook, I'm involved with many of the heart groups on Facebook. I am a co chairman of the congenital Heart Walk here, where we live in Harlingen, Texas, and I'm also a board member of the Children's Heart Foundation here. in Texas. So

spk_2:   9:12
issue are you are a busy woman.

spk_4:   9:15
Well, I try to be I love all

spk_2:   9:18
the different ways that you're involved. And that gives an idea to our listeners of different ways that they can be involved. They could be involved strictly on the Internet. Like you're saying that face Loker with serves. There aren't many listservs around now as they used to be because a lot of people are on Twitter or on Facebook, and that's the way they connect instead of remember the Yahoo groups that we used to belong.

spk_4:   9:39
Thio, there was something a little more personal about that back then. These here to get to know everybody. But this works too. When you reach out to more

spk_2:   9:50
about this is all the pictures we get to see photos of Rod, you know, And I love that. Yeah.

spk_4:   9:56
Remember, we talked about how neat it would be if we could all meet, you know? So

spk_2:   10:00
now absolutely. But several of us did plan get together. I remember when I was living in Florida, we all met one that we all but Jean and karate came all the way from Connecticut. Her and her family and we met in Orlando and I met Carol Self and her grandson and yeah, it was really, really neat. Was so exciting to meet so many people And we were from all over because

spk_3:   10:23
I

spk_2:   10:23
was originally from Texas. We were just in Florida for two years while Frank was in school, but yeah, we did plan get together. So I got to meet Linda and Rob Spring, um, and some awesome, awesome parents in Florida. And then, of course, here in Texas, I've had a chance to meet more, and you and I have met personally and on which was so much fun, Yeah, we met it, take capital. And so that was really, really cool. So there are so many different ways. I love the way you said that you're involved with the Children's foundation and you're helping with the congenital heart defects. One off it. There's so many different ways that parents can get involved and can help raise awareness about congenital heart defect. What we're doing has a potential to save a life, and that is of crucial importance. Great. What? We have to take a quick commercial break. Can't believe it's time already, but it is because coming up next to a park to Rita's daughter Victoria, to see why she created a special event Or could you have a heart defect awareness week and what it ISS? I'll give you a clue. It has something to do with the color we were talking about, and we'll talk about that when we return to heart to heart with Anna.

spk_1:   11:29
Anna Dworsky has written several books to empower the Congenital Heart Defect or C H D community. These books could be found at amazon dot com or at our website www dot baby hearts press dot com. Her best seller is The Heart of a Mother, an anthology of stories written by women for women in the CHD community and as other books, My Brother Needs an Operation, The Heart of a Father and Hypoplastic Left Heart syndrome. A Handbook for parents will help you understand that you are not alone. Visit baby hearts press dot com to find out more. Welcome to

spk_2:   12:05
our show. Heart to Heart With Anna, A show for the congenital heart defect immunity Today, our topic is congenital Heart Defect Awareness 2015 and today's guest, A Rita and Victoria Scoggins. We just finished talking with Rita about her experience with having a daughter born with a congenital heart defect in the 19 eighties and how she has been come an advocate over the years for the congenital heart defect community. Now we'll turn our attention to Victoria Victorian Scroggins, right? I was born on March 31st 1983. I was one month old before my parents knew I had a heart defect. After confirming that I had lost weight, the doctor took a chest X ray. The next morning we saw a pediatric cardiologists, and I was diagnosed with a bicuspid atresia, hyper plastic right ventricle court station of the aorta of Intrigue, Euler and Atrial septal defect. I was also in heart failure. We flew to Houston that night, and I had a subclavian repair for my co optation, and my pulmonary artery was banded. The next several years we put off the font here procedure until it was no longer considered experimental, and I was told during bigger before having the Fontana was in ballet tap the musical performance. Jax with Frank Reston. I had a hard time keeping up with my peers in high school. I joined the marching band like my middle brother had done. I'm touched my freshman through junior years. I have a master's degree in health care administration and have worked with the Veterans Health Administration for five years. Well, welcome back to hard to hurt between Victoria. Thank

spk_5:   13:33
you. Nothing for having me back.

spk_2:   13:35
I so loved talking to you on the show that we did with Alex and with Mark about extracurricular activities for congenital heart defect survivors. Do you remember doing it with me?

spk_5:   13:48
Of course. It was a lot of fun and very interesting to hear the other stories of kids like myself.

spk_2:   13:55
Yeah, it was. I can't believe that was over a year ago already. It went by so fast, but I loved the diversity of the activities that you guys talked about. It gave me so much hope for the younger generation coming up that they could hear a young girl like you being in dance and ballet and musical performance. And then listening to Alex talk about robotics and more talk about karate and it seems so normal. And that we are hoping to do is to let people know that even though your shop may have a heart defect and serious heart defects, all three of you had serious heart defect that you can still grow out, have a fairly normal childhood and take part in this same activities. Your cousins, your brothers other friends are taking part in. Even if you may have to rest a little bit more, you can still participate in those activities.

spk_5:   14:46
Yeah, Good to know. We can do quote unquote normal things.

spk_2:   14:52
Yeah, whatever normal is right. Exactly. Way learned it. Normal changes as we get older. Don't wait. I loved your mother's essay in the heart of a mother because she talked about how you went on your band trip and how you were in Colorado and you were having a little bit of difficulty. But there were two other students who didn't have heart problems. You were having just a much more difficulty than you were. And I thought, See, it doesn't just happen to our heart. Kids, everybody challenges they have to deal with. We just wait. More attuned to what? Your problems. Maybe so Let me go and talk about your master's degree because I'm so proud of you. I've known you for so many years. I've known you since you weren't high. Cool. I think maybe even before that. But your mom and I became really good friends while you were in high school. So can you tell us a little bit more about your journey in college? What you got your bachelor's degree in and where you went to school and all of that? Sure,

spk_5:   15:51
I went to ST Edward's University and Austin, Texas, which is about five hours from my hometown and my family. So that was a big move, not only for myself, but for my family. I had never been that far away, and I'm sure we all were a little apprehensive. Of what? If something goes wrong, what's gonna happen? How am I gonna handle it? How's our family gonna handle it? But I did well. And so I graduated with my bachelor's and business administration, and then I went straight into my masters and I got bad Texas Woman's University, which happened to be right across the street from Texas Children's Hospital, where I was actually treated. So it was nice to have Texas Children's or take Baker. Yeah. Yeah, I got to see the hospital every day for the next three years, I was taking classes for my health care administration masters. And so I knew that I wanted to go into the health care studying. I always felt comfortable in the hospital. Studying shirt has something to do with going in and out of hospital appointments, hospital stays. So I was comfortable in that atmosphere. The only thing I wasn't comfortable on Woz needles. So Oh, yeah, a definite fear of needles. And so I talked to my pediatrician about different options that were in the healthcare field. And that's how I was introduced to the business side of health care. And that's why I decided to pursue my degrees and administration.

spk_2:   17:27
Okay, let me explain why you didn't become a nurse or a doctor. It kind of made that. Now they are. I remember your mom telling us about her concern. Your fear of needles was very, very real and, you know, unfortunately Well, yeah. And unfortunately, it's one of those things that, unlike spiders and bugs and stuff like that, that you hopefully don't have to see, and you can just get raid out. If you have Thio right, you

spk_5:   18:01
know, and no one else can get the blood work done for me either.

spk_2:   18:06
I get the exterminator. It's not gonna work. You just have to do it. And she told us about how you went through that desensitization program where you met with the doctor. And for a while she just had a needle on the desk, and then she would hold it slowly. You started to be able to handle seeing needle without freaking out. It sounds like maybe you still don't like that, but perfectly adorable. Yeah, I try to

spk_5:   18:34
avoid them at all costs. But, you know, sometimes I'm not very and so God, can you get us to do it? I guess. Are you okay? I dont get my flu shot. It's more the taking of the blood or Ivy's knowing that that needle's gonna be in there for long.

spk_2:   18:52
Right? Right. That's the good thing about the flu. Shot is quick, but and it really so you know that it's kind of necessary. The getting the blood Sometimes it's necessary to you. But you're right. It does definitely take longer. So you chose still to work in the health care profession by working in the business end of it, which I think is brilliant. I mean, that's a great way for you to lend your expertise but having to deal with the hospital system and be part of the solution for so many people who require hospitalizations and require the kind of care that you can only get at a hospital. Has it been a rewarding career for you so far?

spk_5:   19:31
Yes. Originally, I wanted to work in a Children's hospital because I thought, you know, that would be the most rewarding. But I work for the Veterans Administration, so our mission is to take care of our veterans, and they sacrifice lot for us. And so I feel justice fulfilled working at the Veterans Administration, as I would at a Children's hospital. But

spk_2:   19:52
that's wonderful. And you're doing your part for the Children, especially Children born with congenital heart defects. By being an advocate, Can you tell us what you've been doing for the last couple years to raise awareness?

spk_5:   20:05
Sure, as you've talked to my mom over the years, you know, she's been a big advocate of control heart defect awareness, and I've never been the type of person that wants to put my face out there, wants to let people know that I have a control heart defect. I like to be behind the scenes, and so I've grown up, and I seen the fact of what awareness conduce to increase research, develop new therapies from that research and sometimes even cures. I know there will probably not be a cure for defects, but there are therapies and different medicines we can take that will help us along our journey. And so as I've grown up in this community, I've realized there's a lot of awareness on women's health, heart health, stroke, heart attacks. But there

spk_2:   20:57
really

spk_5:   20:58
wasn't anything specific for congenital heart defects. And so last year I casually mentioned to my mom that we should start an event on Facebook to try to bring awareness to control heart defects. And so she, of course, said, Well, yeah, why don't you do that? So I think that that right, so last year I created this event. It wear purple, first PhD, congenital heart defects, and we did it again this year, and I gotten several questions about why I chose the Color Purple, and some people thought it should have been red or blue, and I just felt that red is overused. It's used for women's heart health and its associated with American Heart Association.

spk_2:   21:47
I wanted

spk_5:   21:47
something different that represented us, so I chose purple because as I was growing up, I'm sure my mom has mentioned I have purple. It's purple finger tip toes, you name it. When I was out of breath, I was purple, and so I chose purple, and it was also my favorite color. So it made perfect.

spk_2:   22:10
Absolutely. That makes perfect said OK, well, now everybody else can understand also why we're wearing purple. You're right. There's a whole red dress program with the American Heart Association raising awareness for women and their heart health because that has been an issue in the past that has been sadly overlooked. And now they're doing a great job of raising awareness. So you're right. If we did read, it might look like how gay about women's health that we're not. We're talking about kids health, and so I think purple is a perfect color to raise awareness for congenital heart defect simply because so many of our kids do you have the mixing of the blood, which is what makes our Children look purple or blue. And so I just I love that. How many people do you think will be involved this year? And we're talking about 2015 that it's just started in 2000 and 14 So this will be in the archives. We never know when somebody's gonna listen to this. Victoria. So February 2014 is the first year you did it. This is our second year. Tell us how many people you hope will be involved and give us your l that they can go to to find out more information. Of course.

spk_5:   23:18
So I'm looking at Facebook page right now, and currently we have 2000 and 28 that have said they're going toe wear purple on February 13th 2015. Yea, yeah, I'm very excited. Our goal was 2000 by the end of the day, and we surpassed that. So I'll set a new goal and hopefully surpassed that one as well. Ha ha. Okay, so I know both my mom and I have reached out to celebrities that we know have come out as being affected in some way with control heart deeper. And so we've also posted it in different heart pages and on our walls, continuously, just trying to get the word out there about this event. So my vision is for it to go national and maybe even on a talk show or something that would be awesome. But for this year, they can search on Facebook, where purple for Ch D and then parentheses congenital heart defects on February 13.

spk_2:   24:21
That's more than enough. I was able to find it really quickly just doing the work. Of course. So many of my friends, your friends, I get it. Yeah, I had a connection already, but oh, my goodness, we're almost out of line. We need to take a quick commercial break and we'll be back, and we'll have you and your mom in the studio together. Don't leave yet friends. We'll have both Victoria and Rita in the studio together, and we'll talk.

spk_1:   24:52
Gorski has spoken around the world at congenital heart defect events, and she is available as a key note or guest speaker. For your event. Go to heart to heart with anna dot com to learn more about booking Anna for your event, you can also find out more about the radio program. Keep up to date with CHD Resource Is and information about advocacy groups as well as read Ana's Weakly plug. Anna wants you to stay well connected and participate in the CHD community. Visit Heart to Heart with anna dot com today. Welcome back. You are

spk_2:   25:25
so hard to heart with Anna a show for the congenital heart defect community. This show has just flown by. I have had so much fun talking to both media and Victoria. All three of us were in the studio together. Right now, we only have a minute left girls. So I want to ask both of you one important question. Rita, I would like to know how important do you think it is for parents to stay involved in the DHD community even after their heart Children become adults?

spk_4:   25:52
Well, I think it's really important because, like you mentioned that this is for Children. But really, it's also for adult because those Children do grow up to be adults and advocacy, never an awareness, never need to end for them,

spk_2:   26:10
right? Right And our kids, as they get older, face new challenges and the way that we can stay abreast of that is by being connected by continuing to rally for support so that medical science, they at least a step ahead, hopefully more than a step ahead of where our kids are so that they can continue to get the medical care they need, don't you think? Definitely. Okay. So, Victoria, how important do you think it is for a person who was born with a heart defect to help spread awareness? It sounds like you are a little bit late in getting to know you sound like my son Alex. He'd rather work behind the scenes to be the face of congenital heart defects. But now it seems like you're not shy about doing it, and you're happy to get yourself out there. How important is that for survivors? Well, I think we

spk_5:   26:59
have a personal connection with congenital heart defects. And so I think telling our friends, telling our family members about our experiences with living with this will help bring the story home and bring that awareness that is needed.

spk_2:   27:17
That's perfect. It's beautifully said Yes, you may not want to be the poster child for congenital heart defects that your stories bring a personal touch that everybody can relate to you. Well, thank you so much. Reed and Victoria, I love having you on the show today. Thank you. Well, that concludes this episode of heart to heart. With Ana, we will have a link to the Wear Purple Campaign will be under the bio sections. So look there. It'll be really easy, But otherwise, if you go on Facebook and just put wear purple 2016 it's so easy to find Victoria Page and everybody do it. Where? Purple on February 13th. Take a picture of yourself, put it on your Facebook page and encourage everyone else to do it and come back next Tuesday at noon Eastern time. Until then, find unlike us heart to heart. With Nana on Facebook, check out our website heart to heart with anna dot com in our cafe press boutique. Follow a radio show and remember, my friend, you are not alone.

spk_0:   28:17
Thank

spk_1:   28:22
you again for joining us this week. We hope you've been inspired and empowered to become an advocate for the congenital heart defect community. Heart to heart with Anna, with your host, Anna Gorsky can be heard every Tuesday at 12 noon Eastern time. We'll talk again next week