Congenital Heart Defect Advocacy (Remastered)

Congenital Heart Defect (or CHD) Awareness is an extremely important issue. Congenital heart defects (heart defects present at birth) are the #1 Birth Defect. While a commonly reported statistic is 1 in 100 babies are born with a heart defect, that statistic does NOT include the most common CHD – bicuspid aortic valve. In fact, that statistic does NOT include a number of CHDs. That means that more than 1 baby in 100 is born with a CHD. Congenital heart defects also kill more babies than any other birth defect. In the United States, there are 40,000 babies born every year with a CHD. There will be one million babies born worldwide with a CHD and 100,000 of them will not live to see their 1st birthday. While these numbers are staggering, there are still many people who are unaware of the fact that babies can be born with CHDs. We must raise awareness to stress the importance of funding research to prevent future generations of children from dying and suffering from this birth defect.

Transcript

spk_0:   0:01
Welcome friends to heart to Heart with Anna is your guest host Alex Gorsky and I'm honored to host today show Congenital Heart Defect advocacy. This is the 14 type, assertive, even one, and the show, originally aired on February 11th 2014. Today's guest are Jody Lee, Mack's Amy Baskin and John Regions Junior, and we'll discuss issues related to raising awareness about congenital heart defects. Now let's enjoy today Show and remember a friend. You are not alone.

spk_1:   0:38
Welcome

spk_2:   0:44
to heart to Heart with Anna, featuring your host Anna Dworsky. Our program is a program designed to empower the CH D or congenital 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 Anna Gorski,

spk_3:   1:08
14th at the Apart Heart with Anna, a show for the congenital heart defect community. Our purpose is to empower members of our community which resource is support and advocacy information. This show on congenital heart defect awareness is extremely important on a number of levels. Why do we have to worry about promoting awareness? I think the biggest reason is because congenital heart defects are the number one birthday sex. Currently, the Centers for Disease Control has been showing a new statistic with us. One in 33 Children is born with a birth defect that's one in three Children. We also know that one in 100 Children are born with a heart defect. But did you know that that statistic does not include Children born with bicuspid, aortic valve or some other heart conditions? That means that more than 1% of our Children are born with a congenital heart defect. In the United States alone, there are 40,000 babies born every year with a congenital heart defect. And worldwide, there are one million babies born with heart defects and, worse, Annette. Congenital heart defects is the number one cause of birth related deaths in Memphis, one year of age and under. According to the Children's Heart Foundation, 100,000 of the one million babies born each year won't live to see their first birthday. With all of this information easily found on the Internet, why is it so few people actually know that babies and young Children can have heart defects with more than 40 different types of congenital heart defect. One would think that the public would want to know more about what causes these potentially fatal problems. Yet we're still trying to figure out what causes it and what can prevent most congenital heart defects, while finding the cure and prevention of congenital heart defects is important, presenting the loss of life that probably would have been most important things we can do right now In the United States, twice as many Children die from congenital heart defects each year from all forms of childhood cancer combined. Yet Fun day for pediatric cancer research is five times higher funding for congenital heart defects. Something is very wrong with that statistic, and it's up to each of us in the heart world to work on changing their statistics. The only way we can make a difference is to become an advocate, and that's why today's show, congenital heart defect advocacy is so important. Today we will meet three individuals who have first hand knowledge of being an advocate for the congenital heart defect community. On our show is heart mom Jody Lee Max, who will share her experience and advice, is the national program coordinator of Mended Little Heart. We will also have another heart mom in the basket who's also the president of the Pediatric Congenital Heart Association. And finally, we will need a heart warrior, John Ritchie Junior, who will be joining us today to share his experience dealing with lawmakers and how everyone's story matters. Judy Lee Max discovered five months into her pregnancy that her son would be born with a severe hurt, the effect that would require a complex operation as soon as he was born. Before Joshua was even born, Jody and her husband, Mark, were thrust into the role of advocates for their son. First, they fought with medical policies in their insurance company. Now Jody is fighting as an advocate in a different way. As the national program coordinator for one of the largest pediatric congenital heart defect support groups, she has become a strong advocate. Mended Little Heart has worked together with the Children's Heart Foundation, the American Heart Association and the American College of Cardiology. Is Cardio Smart program to spread awareness of educational issues of importance in the heart world to help raise money for pediatric congenital heart defect research, and spread awareness of congenital heart defects. Dirty also sits on the Executive committee for the Congenital Heart Public Health Consortium. We'll meet any basket and John reaching later in our show. Thank you, Jody, for coming on our show. Thank you,

spk_4:   4:53
Anna. And I really appreciate you inviting me here and for all you D'oh!

spk_3:   4:58
It's such a pleasure. Definitely. The pleasure is mine. I think it's so empowering how you have grown for being an advocate for just your child to an advocate for all Children and adults born with congenital heart defects. Can you tell us a little bit about how you became involved with mended little heart and even became the national program coordinator for the group? Sure, you know,

spk_4:   5:19
everyone has a day or maybe more than one day, that changes the course of that person's life. And mine was on February 3rd, 2003 at one o'clock. Kim. It was a Monday when I was told that my third son would be born with severe and fatal congenital heart defect. I believe that most parents, when hearing this news, feel a lot like I do. They feel shocked, they said they're angry and probably really terrified, and I also felt very alone during this time, I desperately wanted to see another kid with the same heart defect. I wondered what they looked like, how they were doing and whether they, in fact, were what I would say normal. And I also wanted to talk to another mom who could give me some assurance that I would make it through this because I really felt as many times that I wasn't going to. And unfortunately, at that time, many little heart wasn't even in a defense until 2000. For so in 2005 when I was approached to start a local Minute Little Hearts group in Reston, Virginia. Even though I had a lot of concerns about starting the group because I was trying to care for my three kids, I felt like I didn't want any other parents feel like I did and not have someone to talk to or not have someone to give them support. And so I started a local group in 2005 and then in 2007 I was invited to become staff to amend a little hurt, and my background is in leadership consulting in law. But I I knew I could make a bigger difference if I accepted the position and he's been a challenge and one that I loved and sometimes has been scary and filled with opportunities for growth. But I am currently still the only full time staff, and I know what men a little bit does is making a difference all of the nation.

spk_3:   6:55
So I know it is, too. I love how you all have been working with other organizations. It's by uniting with all of these other organizations. That's how we're going to make a difference.

spk_4:   7:06
Yes, absolutely

spk_3:   7:08
well. Many parents, grand parents, relatives, friends of Children born with heart defects. They wonder how they could become an advocate for the heart world. To what advice would you give a volunteer who wants to get involved?

spk_4:   7:20
I would tell them that anyone could be an advocate, and advocating is actually what creates change, and people often think that all advocacy has to do with working with legislators, and that's not true. Every parent or caregiver can start learning to be an advocate for further child, and they could do this by making sure they ask questions that doctor's appointments until they really understand the answer and they feel comfortable with it. If they don't agree with something, they could be sure to speak out. Think it more than one opinion on some of the bigger issues that they need to address in bigger decisions that they need to make. They can also educate themselves by listening to shows like this one, or by looking at other resource is about their child's condition. These things not only make a difference in their child care, but they can also educate medical professionals about what parents want and need to know to make the decisions. And people can also join their families, the Hospital Family Advisory Council, if one exists. This is a valuable tool for hospitals because they can learn what parents need and certain directly from people who truly understand that have been there. And finally, if people do want to get involved in legislative advocacy, either many great organizations to get involved with this one being your next Amy Baskins organization, the Pediatric Congenital Heart Association. We also work with American Heart Association, especially on funding for medical research and Pulse act legislation and CPR schools In addition, we're working with the Adult Congenital Heart Association on their CHD Advocacy day on February 26 27 2000 fourteen's

spk_3:   8:51
Jody. You have been working so hard in the heart world for such a long time. Now can you share with us what your favorite advocacy moment was?

spk_4:   8:59
Well, I'll be honest with you and tell you that I don't really care for legislative advocacy, but I do feel it's vitally important. Having parents, caregivers, patients and medical professionals and others come together to help make a difference is energizing and exciting. I think one of the things I love bested the senator and cooperation that happens that because he had done so, why don't have one particular favorite moment, terrible moment of coming together are my favorites.

spk_3:   9:26
I agree. I love getting to meet other heart mom, part dad, grandparent's survivors. It just boost me up. I love what you said at the very beginning, how you so desperately wanted to see another child who had the same heart defect that your baby would be born with. And you wanted to meet another mom who had already traveled the path that you knew. You were going to be traveling. I think the fear of feeling like it's only happening to you and nobody else knows how you feel. I think that exacerbated when you don't know anybody. And when we do get out of our shell and we do get a chance to meet these other people, it's exciting, don't you think?

spk_4:   10:02
I absolutely think so. It's one of the things that makes me love what I d'oh when people come together. A lot of times, the congenital heart defect world can be fraction, and people can be doing great things. But not necessarily working together. And add isn't the advocacy events or awareness events. I see a coming together. That's why I love Paige the awareness week so much because people come together and they create awareness about congenital heart beat backs and all the issues that surround them.

spk_3:   10:29
I love that. Absolutely. We do need to come together and like you, this is the time that I didn't see all of us coming together and working towards the same cause, which is saving lives. Really. When you get down to it, what we all want to do is see no more Children ever be born with a heart defect, right? Absolutely. Do you have any parting words of wisdom to our parents of Children with congenital heart defect regarding how they can help teach their Children at a young age how to be an advocate for themselves?

spk_4:   10:58
I would say my most significant and important piece of advice, but to tell appearance that always focus on what your child can d'oh! And never on his or her limitations. Often we think about all the things their child is not gonna be able to dio. I remember when I found out about Joshua was hard. The fact I thought that he could play football. He's not gonna do marathon running, and in reality, he plays baseball. He called. He's completely happy doing that. There are many things he can d'oh, and I always want him to feel like he's empowered to do many things and the things he wants to D'oh!

spk_3:   11:34
That's exactly what I want for my son Alexander to. I want him to feel empowered. All of us have certain kinds of limitations on five foot one. I'm never gonna be a basketball player, Okay? We all have certain limitations, but That doesn't mean that we can't enjoy and appreciate this strength that we do have. And I love it that you said back When is the doctors who was on our show recently said exactly the same thing that when they were analyzing all of the Children drink the weaknesses that while it's important to know what the weaknesses are, so we can help them to overcome those weaknesses cheap out? The most important thing to do was to focus on what our Children strength work. But I love it that you brought that up. I think that is something that we need to get out there. That's a message that all parents need to hear. Your Children are special and unique, and they do have some strength. Let's focus on what they can do. Jody think it's so much for coming on my show and sharing so much valuable information with my listeners. Thank you

spk_4:   12:31
again, Anna, for having me here. I appreciate it.

spk_3:   12:34
Now It's time for a commercial break, but don't leave yet. Coming up, we have ah, heart mom, who will share with us how she went from working for a national heart group, too starting our heart group of her own. Find out what her new organization isn't. What she hopes to accomplish when we return a heart to heart

spk_6:   12:50
with takes his heart into street. We're offering us a mechanical hot, and he said, now that I've had enough to give it to someone who's worthy My father promised me a golden dressed world held my hand and asked me where I wanted to go. Whatever stripe for conflict that we experienced in our long career together was always healed by humor. Heart to

spk_2:   13:25
heart With Michael Please join us every Thursday at noon, Eastern as we talked with people from around the world who have experienced the most difficult moments. Anna Dworsky has written several books to empower the congenital Heart Defect or C H D community. These books can 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, you are listening to heart to heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Gorski at Anna at heart to heart with anna dot com. That's Anna at heart to heart with anna dot com. No back to heart to heart with Anna back to

spk_6:   14:38
our show. To start with Hannah,

spk_3:   14:39
a show with congenital heart defect community We just finished talking with Heart Mom and national program coordinator of Mended Little Heart. Jody Lee Mack, who shared really valuable information with us about how individuals can become advocates in the heart community and how parents can train their Children to become advocates themselves. Now we will turn our attention to Amy Baskin. Amy Baskin was thrust into the world of congenital heart disease, or C H D, nine years ago with the birth of her son Nicholas. The 1st 3 days of his life included three hospitals, a helicopter ride and heart surgery to repair a severe correct ation of the aorta. While Nicholas was an infant, Amy told her story to lawmakers in Washington, D. C. She then realized the power of the individual story and the positive impact it can have on others. Amy has led congenital heart disease advocacy efforts for many of the largest CHD organizations coalitions. Her accomplishments include the introduction, passage of funding of the Congenital Heart Futures Act, the development and growth of the Congressional Congenital Heart Caucus, as well as coordinating national messaging for the critical Ghd screening movement. Amy recently became president and CEO of the Pediatric Congenital Heart Association, which will unite and amplify the voices of those in the heart world. Please make sure you visit her website. It's www dot conquering CHD dot org's. Thank you, Amy, for coming on heart to heart with Anna.

spk_5:   16:10
Thanks, Anna. First, let me take this opportunity to thank you for all the work that you're doing. Your efforts to spread awareness are remarkable, and hopefully we'll stand to inspire others when you truly are an advocate for congenital heart disease.

spk_3:   16:23
No, thank you. I think we've hurt moms Are moms on your mission, wouldn't you say?

spk_5:   16:27
Oh, absolutely. I think that's how I started out. Has this simple mom on a mission and nine years later, working with others in uniting others to help make a difference.

spk_3:   16:37
Now that's one of the things I love about you. Point. You just jumped right in really early. I've been around for 19 years that it feels like it was kind of a slow beginning for us to start uniting people. But, you know, way back when when Alexander was born, we didn't even have the Internet. So I think having the Internet has really helped us to find each other, wouldn't you think?

spk_5:   16:57
Oh, absolutely. The Internet has been a great resource to connect people and spread information a lot more quickly. And through social networks, people can share their concerns but also have avenues to use their story in a constructive and positive way.

spk_3:   17:11
And that's what I want. First of all the years of story I talked about in your bio, how you went on the hill that seems so intimidating to so many of us. Can you tell us about your first experience telling your story and maybe how other people in the heart community can feel comfortable going out and doing the same thing

spk_5:   17:31
I have to confess. I was scared to death. I was invited. Nicholas is six months old when I was first invited to go to Washington D. C. And share my story with lawmakers and we were still dealing with regular doctor's appointments. Nicholas was recovering well from his surgery, but it was still a very overwhelming time as a family adjusting to having a kid with special medical issues. And my emotions were just below the surface. The entire time I was preparing to go to Washington, and I think I cried for the for 20 minutes. I was on the airplane when I got to Washington D. C. I was united with several other advocates, so I felt comfort in the fact that I didn't have to go alone. However, when it came time to telling my story, I realized that was very much out of my element and really didn't feel comfortable at all. Through encouragement and support of the other advocates, I told my story to the lawmakers, and again my emotions were bubbling at the surface and in fact I did break down halfway through my story. But the reaction from the lawmakers staff watching her get engaged in my story, and seeing the tears in her eyes in response to my experience really made me realize that my story made a difference. My story was able to impact someone else and that someone else was actually a pretty powerful person who was able to affect change. And while we were there to talk about research, my only responsibility is an advocate was to share my story and let other people know that as a mom, I'm experiencing things that are scary and difficult and challenging. And by sharing that with others, I am allowing them to be better educated and make decisions that can impact millions of people with congenital heart disease.

spk_3:   19:13
Absolutely. You gave a face to what congenital heart defects was all about. Now, when people who had spoken to you think about congenital heart defects, they think about Amy Baskin and they remember Amy Story. I don't think there's anything wrong with the fact that you broke down. I've been doing this for 19 years. Like I said, I went last year and I met John Richie's and I met you there, and I was nothing, too. Even though I've been in Toastmasters. Even though I've given speeches around all of North America still getting up and talking to people who had some opportunity to actually do something, I didn't want to say the wrong thing. I didn't want to do the wrong thing, but I knew that in the end, the most important thing is that we had our story told and people now, instead of just thinking about something abstract, congenital heart defects, they knew Alex's story. They knew your son's story. Thanks to Jodi, we know Joshua's story, and I think that the power of that story is that it gives people something to focus on when they think about something. It's complicated as congenital heart defects.

spk_5:   20:15
Absolutely living with congenital heart disease isn't easy, and advocating is a great way to take that tough story and use it to make a difference. And since that first visit, I have become much more practice that telling my story and it has gotten easier, and I have heard back from many lawmakers that the power of the story is really what makes a difference. The statistics will be there and they will always be there. But it's the story that gets remembered when it comes to making a decision and making a change. And

spk_3:   20:42
I love you. Just sit there because what people need to know Anybody thinking about going to Washington or even if you're thinking about meeting with your governor, your next door neighbor, for heaven's sakes? Anybody who needs you know about heart defects. It doesn't matter if you're perfect, you don't have to be perfect. Your story doesn't have to be perfect. It has to come from your heart and people leave when you're genuine and they see the compassion you feel for your child. And now that we feel for all Children and adults who are in the heart world, I think that that the message that comes through, don't you think? Amy? Yes, absolutely. So you've taken part in a number of advocacy awareness of Ben. Can you tell our listeners ways that they could also take part in different events to share information about congenital heart defects?

spk_5:   21:29
Absolutely many people, when they think of advocacy, they think it only happens in Washington, D. C. And while one of the most powerful gestures you can make is to make the effort to travel to Washington and visit with your lawmakers. There is much, much advocacy work that can be done right at home. Advocacy really is about developing relationships, and those relationships need to be nurtured all year long. But I do want to highlight some of the things that we can do in February and all your long as an advocate. We can work together to establish state and federal proclamations and resolutions. You simply need to write your state legislators and ask them to highlight the fact that February 7 through the 14th is Congenital Heart Awareness Week, and they can create a proclamation or a resolution. And one of the things that you can do then, is to request a public signing for that proclamation or resolution. Which is another way to unite your local heart defect community and travel to the state capital for a very public awareness event surrounding advocacy. Other things that you can do just simply involve educating your lawmakers in February. It's a great time to write a Valentine's Day card. You can either write them by hand and send them in the mail, including a picture of you or your child. You can write a brief statement about your story and why Valentine's Day and congenital heart disease awareness is important to you. You can make a phone call and wish them a happy Valentine's Day. You can also send them an email on their website so it could be a simple as making a phone call or sending an email. It can be a complicated and challenging is traveling to Washington D. C. But I want people to understand that they're very simple things that you can do immediately in the uniting your local community or whether it's joining with people across the country. Advocacy is something that everybody can. D'oh!

spk_3:   23:21
Oh, I love that advocacy is something everybody can do. Even the Children who are survivors, Children as young as 567 years old.

spk_6:   23:30
They know

spk_3:   23:30
that their hardest special. They know when they look down on their chests and they see that scar that nobody else has. That something happened to them. And I took my son Alexander to my niece is cool when she was doing the Jump rope for heart program, and we talked to her class about how even Children can have heart defects. Alexander, completely unprompted by me, lifted up his shirt to show everybody. So yes, even our Children can be advocates. Alex, one of the Children in Megan's class to see Hey, look, I have a scar. I've had heart surgery. He was just a little kid when that happened that he was able to be an advocate for himself and for others.

spk_5:   24:07
And I think what you've pointed out to, I want to capture that idea. That advocacy doesn't necessarily mean just talking to your lawmakers. As Jodi said, Advocacy is empowering your child to be able to conquer his fears and achieve all that he wants to accomplish. But it's also for parents toe advocate amongst their doctors, to get the appropriate health care and for adult patients to get appropriate health care. But it's also simply spreading awareness among peers. Classmate office made at your church there many different opportunities to advocate and educate the community about issues related to congenital heart disease that might not directly impact on legislators and other ways to do that would also include letters to the editor publishing something in your church newsletter, asking that something be added to your community and newsletters. The countless different ways that you can bring awareness and advocate to the community into your peers.

spk_3:   25:01
All of those suggestions is so perfect. Well, Amy, we only have about a minute left, and I know everybody wants to know about your new organization. So please tell us why you started your new organization and what your mission is.

spk_5:   25:14
Absolutely. The Pediatric Congenital Heart Association kind of grew out of my work with all of the other incredible congenital heart disease organizations. And over the last several years, it became evident that there really needed to be a united effort towards advocating for pediatric, congenital heart disease and congenital heart disease across the life span in Washington, D. C. So our mission at Pediatric Condell Heart Association is simple. We just want to conquer congenital heart defect, and we hope to accomplish that by uniting the community. We are developing opportunities to bring organizations together. We've developed opportunities to bring federal agencies together, and now we're also working on bringing the community at large. The power of one voice can be magnified tremendously when it's united with other voices. And that's our goal is really to just continue the momentum that's been built by all of these other wonderful folks and be the flagship that drive it forward so that we can hit a home run.

spk_3:   26:10
Well, I, for one, can't wait to see what you come up with. I saw your newsletter yesterday, and it made me so excited about what you're doing. And I hope that I can take a little part in what you're doing. And I'm so happy that through the radio show we can let other people know about what you're doing.

spk_5:   26:27
Well, thanks, Donna. And I encourage people to find us on Facebook. You can join us in partner with us through our Web site online and getting our newsletter you mentioned is probably one of the best ways to get a behind the scenes peek and ways to get involved.

spk_3:   26:40
Terrific. Wanted to give the address for your website one more time, and then we're gonna have to go to a commercial break.

spk_5:   26:45
It matches our mission. So its conquering C h d dot or ge.

spk_3:   26:50
Well, thank you, Amy, So much. I've really enjoyed our sessions.

spk_5:   26:53
Well, thank you and again. What a privilege to be a part of this great effort that you have going. Thank you for inviting me,

spk_3:   26:59
but it's been my pleasure. Now it's time for us to take a commercial break. But don't go, boss. Stay tuned to find out what an adult survivor of congenital heart defects has been to become an advocate for the DHD community and whether or not he thought it was a good idea when we returned the hard

spk_2:   27:14
way. 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 her 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 Hypo Plastic 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

spk_6:   28:06
way forever Baby Blues collected. I think what I love so much about this is that some of the songs were inspired by the patient. Many listeners will understand many of the different songs and what they've been inspired by. Our new album will be available on iTunes. Amazon dot com. Spotify I love the fact that the proceeds from that TV are actually going to help those with enjoying music

spk_3:   28:40
night forever.

spk_1:   28:50
You

spk_2:   28:53
are listening to heart to heart with Anna. If you have a question or comment that you would like a dress on our show, please send an email to Anna Gorski 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 Anna

spk_1:   29:15
back Parts of Heart with on

spk_3:   29:17
a show for the congenital heart defect community. Today we have been talking with two wonderful women, and I've so enjoyed meeting Judy Lee Max and Amy Basket, and I hope you listen first to segment. Now we get a chance to meet heart warrior John Rich ings. Hemorrhaging is a 42 year old father who was born with pulmonary atresia and the small but functional right ventricle. He has had three open heart surgeries and over 30 cardiac catheterizations. He has had a repaired bow, a replaced valve, part of his heart removed, and an implantable cardio murder defibrillator, which is known as an icy, be placed in his heart to make his heart beat. In his time, he has had more than a few opportunities to advocate for his own health. More recently, in 2000 and 13 he attended an advocacy day function in Washington, D. C, representing not only himself but others in the congenital heart defect community. He has also so Britain letters to congressmen and senators. He uses his personal Facebook page to promote congenital heart defect awareness and also shares how he lives a normal life. He monitors a Facebook group called Adult congenital Heart Defect Patients and three Ph. D parents questions. It's a myth to help parents understand what it's like growing up with a PhD and to help them advocate for their Children's health. John, you and I got a chance to meet a Washington D. C. Last year, and I want to welcome you to the show. I'm so excited you could come on today.

spk_7:   30:45
I'm excited to be here, and I really appreciate you asking me to do this. I think it's awesome what you do,

spk_3:   30:50
but thank you and I think it's awesome that an adult survivor traveled all the way to Washington, D. C not only speak for himself, but to speak for others. So tell me whether or not that was your first time to ever go to an event like that and what lessons you learned from your experience.

spk_7:   31:06
It was my first time, and I had an absolute blast doing it. I wasn't the only adult congenital heart patient there. I met a lot of people that I talked to on line, and I learned a lot of things. I think the two most important things that I learned for realized is that one. You know, you go talk to the senators and your representatives, and you sort of have this feeling almost like freaking chocolate for, you know, any kind of public figure. But once you sit down and talk with him, realize these. These are just people. They have families. They have wives and Children and have live so they can really relate. They've had problems in their life, too, so they can relate to the problems you have, so you don't need to be nervous talking to him. They're just regular people who have a very important job. The second thing I learned is really I've worked in retail sales for years and years, and advocating is failed. I mean, what you're doing is you're selling your story. You're telling people your story so that they remember you. You know, they're gonna forget all the statistics. What? They're gonna remember you in your story and that's all you're really doing. You're going and you're telling your story. It really makes a huge difference. It really does.

spk_3:   32:09
And I think that we're not doing it by ourselves. We had a lot of people in Washington. It was just one or two of us.

spk_7:   32:16
No, in effect. When we went, they sent us out in groups. So you were with three or four other people and they were all telling their story as well. So it wasn't a matter of having to go in alone. You had people there backing you up, people that could relate to what you're going through.

spk_3:   32:30
They're just people, but they are people with very important jobs, and there are people who can influence changes in our society. So it is an important time. We really don't have much time, do we, John?

spk_7:   32:41
No. And that's absolutely goes back to the sales thing. You want to go in there and know what you want to say and be able to say it because you're right. They don't give you very much time. You go in, you have a few minutes for each person and then you're out the door again. But they are just people that I mean, you're correct. There have a very important job. They're the ones that can do what we want done. But it'll have to be super nervous facing them because they're relatable people. They understand all that stuff you're going through

spk_3:   33:06
just right. I can relate to people who have health issues that they're dealing with really fundamentally. That's what we're talking about, people who have some very serious health issues. President, just about everybody I can relate to, something like that. Don't you been thrown?

spk_7:   33:21
Absolutely. I'm sure all of them have had somebody somewhere in their family has had to go through some sort of surgery or some sort of health problems. So yes, they absolutely can relate to you. And it's important to kind of remember that going in,

spk_3:   33:34
I think it reduces your nerves a little bit when you realize they're just another person. But when you've seen that on the newspaper, you've seen him on television, they are to remember that they're just another person. John, I see you on Facebook all the time, promoting understanding between parents and their Children and what their Children maybe experience and even help adults making sense out of what's happening to them. How do you feel we can use? Facebook is the tool to inform people outside our heart community about congenital heart defects.

spk_7:   34:04
Social media is a wonderful tool, both Facebook and Twitter, and the issue with it becomes when you become a member of the CHD community, you gain a lot of CH D friends, and it's great that that happens. It absolutely is wonderful, but that doesn't get your story out to other people. So you have to allow other people that aren't part of the community onto your page, which means you either have to make it public. Or at the very least, make all your posts available to friends of your friends so that your posts are getting out there to people that don't know about congenital heart defect. So you're educating the public every time you make a post about whatever it is you're doing that day. And that's my biggest thing, is really you have to be able to allow people. I see what you're putting on your page.

spk_3:   34:49
Scary because we lose our anonymity pictures of our Children in the hospital or us with our Children in the hospital. In a certain sense of anonymity, coming on the radio, you lose a certain sense of anonymity. But you're right. We have to sacrifice that. You let people who aren't even part of the heart world I know that we exist. I know that these problems are apparent not only apparent, they're the number one birth defect and that if we don't all work together and even the people who don't have a child with a heart defect, we need everybody to work together or else we're never going to get rid of this problem.

spk_7:   35:25
Yeah, absolutely. We can go as advocates and going, I can talk to the government. But when you have people that I know people that are in the situation involved in it now becomes even bigger now. It's not just this small group of people as as we tend to be thought of, I think, by the government now it's a whole bunch of people behind these people. It's not just them by themselves. And in order to do that, Unfortunately, yes, you do have to lose some of your privacy to do this. You know, you don't have to share your obviously your most private moments. But you know your average, everyday things that you do and even silly mistakes that you make in that kind of thing. You sort of have to put yourself out there to do that.

spk_3:   36:02
Not being you playing your instruments on Facebook that you give me hope for much said that as a survivor he'll be able to lead a normal life, unloved that that you're out there doing that and you are promoted not just the fact that you've been in the hospital or had 30 catheterizations, but after that hate I play an instrument. Hey, I'm a dad. I'm out here supporting my sense activities of my child activities. We are so much more than just our heart defects in our Children's heart defects, and I love how you use Facebook, Twitter, all of the different social media to help people to see that.

spk_7:   36:35
Well, yeah. I mean, you know, you talk about normal life and I think, and I tell parents, is quite a bit in my Facebook group What you consider not normal. Your child considers normal. I mean, the fact that he has to go to see the cardiologists twice a year. The fact that you know, he has 70 kg every time the fact he's been in the hospital, all that stuff is normal. Then he doesn't know him or hurt. He didn't you know, they don't know any different that is their life. And if you treat it like it's some huge major thing, which you know it is obviously but But if you treat it like it was traumatizing thing, then it becomes dramatizing if he treated as this is something we need to do, and then we can move on, then it becomes something that becomes empowering for them. It becomes part of their regular normal routine.

spk_3:   37:16
I always tried to street Alec and the fact that he had to take medications on a daily basis. As a matter of fact, if he had had diabetes, he would be having to take his blood, and he would be having to test his blood and blood sugar level. But if he had cancer, we would have a different set of things that we have to do for his heart defect. You're right. It was a matter of fact that he had to take medication he had to see and still has to see the cardiologists Twice a year. He has to do Holter monitors and echoes and all of these different things. It's a matter of course, and I love that. Don't make a big deal about it, and then your child won't make a big deal about it, either. They'll just know it's just part of who I am, but we only have about a minute left. So tell me what advice you would offer parents of Children with complex congenital heart defect that they do learn how to be strong advocates for themselves from a very young age.

spk_7:   38:07
My biggest thing. If you want to empower your kids to become advocates for themselves, you need to involve them in some sort of decision making process. In early age, you know, even something as simple as Do you want to take your medication before breakfast or after breakfast? Mental decision they can make. Obviously, it's going to be a small decision, but it's a decision that gets them involved. And once they're involved in an early age, they become much more able to advocate for themselves. When they get older, they're less likely to sit back and not ask the questions that they have. You know, when they're at the doctor's office, involved in early in small decisions and then let them as they grow, involved him in the more important stuff as they become old enough to engage in that kind of thing.

spk_3:   38:48
Absolutely. I remember when Alex was little and we were in the store picking up his what was then called Baby Aspirin. Now they call it late does aspirin. I turned to him and I said, Would you rather have the cherry or the orange? Now there wasn't a choice. Do you want it or not? That wasn't the choice. The choice. Would you rather have to Terry or the orange? And you're right. That did empower him. I didn't even think about that then, John, but right I wanted him to be vested in what we were doing to take care of his body. And this is something that we need to teach them from a young age. I love that advice. Spoken like a true heart warrior. Thank you, John. So much for coming on the show today and for helping us understand a little bit better what it was like for you to grow up with the hardest part.

spk_7:   39:28
Well, thank you for having me, and I really appreciate it.

spk_3:   39:30
But now it's time for another commercial break. But don't leave yet. It's almost time for our miracle moment in today's miracle moment is an essay from the heart of the matter entitled Working With the Media. Find out how Jane Hunt found a way to get her message of friend of the media When we return The Heart to Heart

spk_6:   39:47
with Theo Hart with Emma is a presentation of Hearts, Unite the Globe and

spk_2:   40:07
is part of the Hug Podcast Network Hearts Unite The Globe is a nonprofit organization devoted

spk_6:   40:12
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 CHD community. Please visit our website at www Congenital Heart Defect. Stop Tom for information about CH D. The hospitals treat Children with CHD summer camps for CHD survivors and much, much more.

spk_2:   40:41
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 her website, www dot maybe Hart's press dot com. Her best seller is The Heart of a Mother, an anthology of stories written by Women for Women in the C H D community. Ana's other books, My Brother Needs an Operation, The Heart of a Father and Hypo Plastic 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. You are listening to heart to heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Gorski 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 Anna

spk_1:   41:46
back with 14

spk_3:   41:48
but with Anna, a show for the congenital heart defect community. How purpose is to empower members of our community with resource is support and advocacy inflammation. And I think we can definitely say for the first part of our show with Jody and Amy and John, we now know more about how to empower ourselves in our community. Thes three guests were just tremendous. They gave that absolutely perfect advice and shared such beautiful stories. I'm all pumped up. I'm ready to start writing letters and send out Valentine's. And I'm glad I could take notes during the show because these people have given me all kinds of new ideas ways that I could be an advocate in my community. Now let's go to our miracle moment. Today. Our miracle moment starts on page 200 in the heart of the Mother, and it's called Working with the Media. Jane. Huh? Jake Hunch is the mother of a child with severe, complex heart defect. Marcus, this heart defect summed up in the labels single ventricle, has been reconstructed through a number of operations, culminating in the front hand procedure ever since. Marcus is heart defect was identified. J has been his strongest advocate and shortly thereafter became a public advocate for all Children born with congenital heart defects. While thinking about what advocacy is and who seemed to personify advocacy, James Name popped into my head. First. Jane, a well educated, articulate woman, clearly states her concerns and needs the others. She impressed the doctors treating her son enough that they referred reporters to her. On a number of occasions, the cardiothoracic surgeon who treated Marcus chose Jane and her family to participate with him in the television spot sponsored by the American Heart Association. Regarding congenital heart defects in the spotlight, Dr Steven Dewan and James Hunt explained what it is like to have a child with a congenital heart defect. In those specific surrounding Marcus is complex heart, using a model of the heart, the reporter even going to the audience, how the heart is re plumbed. After the Monte on Operation, Jane was also interviewed for a hospital publication to share information about a mama grows a support group she helped to start. She advocated the need for parents to talkto others as well as an opportunity to continue educating themselves about lifelong effects of congenital heart defect. Patrick Finnegan and the Markets pediatric cardiologists was also interviewed for the article. He emphasized the importance of parents supporting each other by recognizing that families of chronically ill Children tend to have a high incidence of emotional problems and divorced. He felt that support groups could benefit families, which would in turn benefit the afflicted Children. Perhaps the most exciting activity James Pardon, came after market was selected to be the pediatric cardiology miracle child for the Children's Miracle Network. Bit of Central Texas region markets. This story was told by Jane and his doctors, and the CME N team put together an incredible presentation on him when viewing the presentation for the very first time, Jane found herself crying and marveling at the strength of her baby. Because Marcus was videotaped after his Fontane, Jane was struck with how far he had come and how strong he looked. The story of Marcus's life, reported by an unbiased stranger, the Jane Down Memory Lane and left her inspired James desire, has been to inspire, educate, support other parents as well as the community at large with the help of her child's doctors and nurses who run Milagros, the Children's Miracle Network and reporters have spread the news markets, inspires others. He is living proof of the miracles of modern medicine. His mother is proof that the power of a mother's love can change the world. And that concludes this episode of heart to heart with Anna. Please come back next week. Until then, please, like and find us on Facebook. Check out our website heart to heart with Anna. And remember, my friend, you are not alone.

spk_1:   45:35
Thank

spk_2:   45:40
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.