Silent Cries: Moving from Philanthropist

Congenital heart defects are the number one birth defect yet there are few movies depicting members of the congenital heart defect (CHD) community or CHD themes. "Silent Cries" is a movie written by the father of a child with hypoplastic left heart syndrome. What makes "Silent Cries" so touching is how it has brought the CHD community together in ways unforeseen when it was first conceptualized. One of the ways it has brought people together is by turning its key handlers from being a philanthropist in the CHD and nonprofit communities into an executive producer for this show. A new team brought with it new collaboration and a new title. Find out who this producer is, how she became involved with the movie and why "Silent Cries" need to be silenced no longer.

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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 ski

spk_2:   0:33
season is tales from the trenches. We have a great story today. People born in the 19 seventies with complex congenital heart defect for great ribs

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surgeries to repair congenital heart defects, or CHD, had only been around for a few decades. And certainly not all CHD had surgical intervention available. One of the first surgery available to help babies born with complex congenital heart defects beginning in 1944 thanks to Dr Helen Tosic, Dr Alfred Blaylock and Vivian Thomas was a procedure to help blue babies. Blue babies were baby too had hard to fix, which had oxygenated blood and de oxygenated blood mixing due to malformations in the heart. There was a movie made about the development of this surgical procedure called something the Lord Made, starring Alan Rickman as Dr Blaylock must step as Vivian Thomas and Mary Stuart Masterson is Dr Helen Taussig the surgical procedure appropriately and that is named after the two doctors responsible for saving the lives of countless blue babies. The Blaylock toxic shunt is often the first procedure. A newborn baby with tetralogy of follow endures. How appropriate for us to be discussing this historic surgical procedure captured in a touching movie today, when we will be interviewing a tetralogy of fellow Survivor who is also producing a film for the congenital heart defect community. There are few movies featuring members of the congenital heart defect community. Something's Lowered Made was an award winning movie and was made in 2000 and four. Gatica was produced in 1997 and Start. Ethan Hawke, who played a character born with a heart defect who wanted to travel to space. Returned To Me is a movie starring Minnie Driver is a woman born with the C H. D. Who discovered her transplanted heart originally belonged to her new boyfriend's wife, and it was released in 2000. And in 2000 and two, Denzel Washington started a father desperate to save his son's life in the movie John Q. As Faras documentaries. Partners of the Heart is the documentary which inspired the movie Something The Lord Made. The Children's Foundation produced the documentary entitled The Heart of the Matter in 2000 and 12. But Treacher Chris O'Donnell is a host, and most recently, Philip Wolf created a documentary entitled Silent Cries, a movie inspired by a book he wrote about his child being born with hypoplastic left heart syndrome. In 2000 and 11 Barbara Walters hosted an ABC special entitled A Matter of Life and Death, which took viewers on her journey of having her a order court valve replaced and had interviews with people who had various types of heart diseases. I am so excited about our show today. Silent cries moving from philanthropist to producer. You will learn more that silent cries from today's guest, Nicole Vickery. Nicole's degree was born in 1970 with tetralogy of Hello. She was extremely cyanotic for Blue and had her first pediatric cardiology appointment at seven days of age in Birmingham, Alabama. Nicole attended the University of South Alabama, majoring in business finance with a minor in public relations. Currently, Nicole resides in Huntsville, Alabama, where she devotes herself to congenital heart defect education through public speaking engagements in the use of social media. More importantly, she spends time with her daughter, who was adopted from China in 1996. Nicole is currently the executive producer and producer of Silent Christ, a Wolf entertainment production documentary prior to becoming a producer in a close, spent years in the nonprofit sector frequently is a board member. While Nicole had a great deal of education, a real life training which has helped her in her role as producer, perhaps what makes her the best person for the job that she herself is a C H E survivor? Welcome to heart to heart with them in Nicole.

spk_4:   4:17
Thank you for having me.

spk_3:   4:19
I'm so excited that we are together. We've been Facebook friends for about a year, but now this is the first time for us to really talk one on one

spk_4:   4:28
like this. Now I'm excited and talk to your viewers. Well,

spk_3:   4:32
in your bio, you said that your first pediatric cardiology appointment happened the first week of your life. So when did you have that first surgery?

spk_4:   4:40
Well, I have actually around my first birthday in May of 1971. And the incision looks like the same that they did for the bloody lot shunt which, coincidentally, my daughter's father had done. He's a tautology patient as well, but I had what they called a Waterstone shut. At that time, doctors were producing shots left and right and very blood tohave my, who performed it correctly. They don't even teach the Waterston in medical school

spk_3:   5:13
anymore. Wow. So you were married to somebody who also had a congenital heart defect

spk_4:   5:21
to travel. He is a tetralogy patient. Yes, I had. Okay. Is that no money in

spk_3:   5:30
there? Okay, you almost see this. If you're looking at the slide show, there is a heavily tattooed gentleman who is in the picture with the call. You know, your your faces are pressed together. So I wondered if that was your has been and I hadn't seen that he's a toe. Let me dio

spk_4:   5:51
I get that

spk_3:   5:52
a lot. Yuri, Tetralogy of fellow Survivor. Your husband is a tetralogy of fellow Survivor is the diary that you adopted from. Okay, I'm sorry. You're accepted. Is your daughter also a heart survivor?

spk_4:   6:07
No, she's not. She was the answer to my prayer that when in the nineties I learned that I could not carry a child. If I did, I wouldn't be able t o take care of her or him. So I had to make the decision to not have Children because of the impact on my heart.

spk_3:   6:26
It taxes the heart more than a lot of people realize. And so it's not just giving the birth, which of course, is called labor for a good reason. It's the whole nine months where your heart is also doing the work of pumping the blood through the baby's body as well. And when it's teeny tiny, it's not as much of, ah, taxation on the heart. But if the baby gets bigger and bigger, it puts more and more pressure on your heart. And if your heart has significant malformations, then yeah, it's not a good idea, because what can happen is it can weaken your heart so much that your heart can't recover and then you wouldn't be able to take care of your baby. And you might not even survive so that we did a show on heart to heart with Anna, where we talked about options that women had who were born with congenital heart defects. And for some people of having a baby. Naturally, it's just not the best way to become a mother. But adoption is a beautiful way to become a mother. And I'm so excited for you that you had an answer to prayer and getting your daughter. That just is wonderful. How many surgeries have you had, Nicole?

spk_4:   7:30
C four major ones. And I can't count the number of catherization lost count years ago.

spk_3:   7:38
Married. All right, But you've had four open heart surgeries. Yes. Yeah, that's a lot to go through. And so that definitely makes you an expert in the producer. For our executive producer For cries. I'm just so excited to be talking to you. It seems that you have been involved in the nonprofit sector for many years as well in helping the adult Congenital Heart Association and also being a counselor to America. Small businesses with score, which I just learned about. Thanks to you, it looks like a wonderful organization. Can you tell me why you have felt drawn to work with these nonprofits? Well,

spk_4:   8:16
what happened is I got lost in transition which is a big topic right now. Kids age out of their pediatric cardiology office and they have nowhere to go. And when I went to college in Mobile, Alabama, I was very diligent, funny and cardiologists trying to stay upstate with my help. But I went into right heart failure because the pulmonary valve I was born with was only 10 millimeters, and when I was five, they extended at three millimeters, but that was still only half the size of a normal human heart pulmonary valve. So because I was in contested heart failure for about a decade before they finally caught it and did a surgery in 2007 replacing it I can't work anymore. Stars a 9 to 5 job. I used to go guns blazing and had

spk_3:   9:13
to

spk_4:   9:13
find a way to be able to work from home and make your contribution. I learned a lot of lessons that I'd like to impart upon the youth of today and their parents, one being taught to your cardiologists long before you decide to get pregnant. Not when you're 25 ready to start a family and two when you transition to college, find an adult congenital heart location so that you can carry your treatment forward. Even if they say that you're fixed, something will probably pop up in your adult life.

spk_3:   9:50
I think that's very eloquently stated. And that is something that a lot of us parents, especially parents of adults, worry about, is that once our kids, especially when they age out of our insurance and we can't cover them anymore, how are they going to be able to continue to care that we know they need? And so, yes, you do have to stay on top of it. There aren't as many cardiologists trained to work with adult congenital heart defects survivors, but the number is growing because the need is growing. And so it's good to see that And you're right. It really does help to go see somebody who understands congenital heart defects, not a cardiology who is only accustomed to you acquired heart defects that that's just priceless. They understand the pediatric congenital heart defect. Doctors know so much more about what to expect long term, now that so many of you are surviving to adulthood, there are patients that have gone decades without having any problems, too All of a sudden you have a liver problems. They're going into congestive heart failure. They do have valve problems and having somebody who understands the pediatric population and what congenital heart defects look like versus acquired is just without compare.

spk_4:   11:07
You're absolutely right. And I got lucky. I was on the brink of death in 2007 and I finally got a cardiologists here in Huntsville who said, I've got a friend Ed called in over a year. Maybe he meant toward under my pediatric cardiologists stocked bars. You're on. So I am in really good hands now, and I never missed a check up. Good for you that I probably worry, Adam, buddy,

spk_3:   11:35
but I should. Well, if you're taking care of yourself and it sounds like you are, then hopefully you won't be causing them any undue concern. It's so nice to meet somebody else who is like minded as I am as far as being a philanthropist, and you really have given back to your community in so many ways through helping small businesses to help in the adult with Congenital heart association. And now, with this wonderful movie project, I can't tell you how good it feels to reach out to somebody else who has the same mission in life to help others. Can you tell me how having, ah, heart defect yourself made you want to give back to your community

spk_4:   12:16
as we reach adulthood, especially middle aged? The answer. Start coming together. And I thought, I feel driven to impart what I've learned. Surgery is solved that can help me and medication. But there are lessons I've learned along the way that had a known better. My quality of life now would be better than it is, and that's what led me to it. I'm motivated purely by passion and wanting to help younger Children coming up and younger adults.

spk_3:   12:51
That's beautiful. And I'm so glad that there's someone like you out there, somebody who has lived, which having a congenital heart defect and who knows all that that entails and wants to reach out and help educate others, inspire other, share your story with others. That's what this show is all about. To you is us reaching out to others in the community to let them know about advances that are happening in science, to let them know about movies that are coming out, but consider coming out. I feel like I have the best job ever. I get to be the one who announces all these fabulous things that are happening. Just last week, we talked to a woman who made act for their smartphones that can help people. And this is just so much fun to be able to spread that information into the university, that with the Internet, you can go just about anywhere and let people know what is available, because it's almost overwhelming now how much information we get bombarded with. And so this is one quiet little place. For 30 minutes a week, people can come and get something hopefully of value to them in the congenital heart defect community. So it's almost time for a commercial break. And when we come back, I really wanted to talk about silent cries. But can you tell me what the biggest challenges you have faced far working with no profit organizations, especially in the DHD community?

spk_4:   14:06
Well, I

spk_3:   14:07
would say with the CST community, we had a

spk_4:   14:11
lot of factions, and by that I mean there's a different chapter of a different group organization in every city town state, and we're not being able to raise the funds that we need to get research going into continue what they're researching presently that can help Children not have to have many open heart surgery. It's kind of a gold mine to bring us all together, get us

spk_3:   14:40
on the

spk_4:   14:41
same page and speaking the same language like any other cause for group like we celebrate in October or other months, so that our voice can be heard as one. And until that happens, most of the organizations are place for people to go and tell their story. And usually it's parents trying to one up the other. No list a bunch of things wrong with their kid. And I'm like, Well, that's challah J just say it. And so I'd really like for us to be positive and start looking towards the future and have hope. I want to give parents hope. I've met a woman with a five year old tetralogy patient and her kid was running around outside so I can't get slowed down, and I said, Don't don't make her limit. Kids are resilient, they're good. We adults. We could take a lesson from that and when she said, You're 45 said nearly. And she said, I've never met a tetralogy patient over 18. So it's no, it's like that that really and for me to keep going and pushing forward our mission. I

spk_3:   15:48
do think it's a challenge that we do seem a little disjointed in some ways in the heart community. And I'm hoping that through the radio show through your documentary through a lot of different organizations out there that do seem to be reaching out hands to join hands together. So we do form one voice. I'm very hopeful that we can become united so that we can have a much louder voice, get more money for research. Have the government pay more attention to us so they can make laws that will be helpful to our community. And you're right. It's only by working together and not being selfish. But keeping your eye on the big picture, which is the big picture, is all of us helping one another and making the quality of life for survivors the best that it can possibly be and eventually to totally eradicate congenital heart defects just like polio is almost completely gone, you'll still see places that will have a case here or there, but really polio you hardly ever hear about. I would love some day for people to hardly ever hear about hard to fix. We can do it if we work together, and I think that's a great way for us to go to commercial work. Being in firing like that, that's perfect. We're going to go to a quick commercial break and then we'll be right back.

spk_1:   17:05
Anna Dworsky has written several books to empower the Congenital Heart Defect, or CHD 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 his 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.

spk_2:   17:40
Welcome back to our

spk_3:   17:41
show Heart to Heart with Anna, A show for the congenital heart defect community Today. Our topic is Silent Cries movie from philanthropists to producer in Today's guest is Nicole Victory. We just finished document to call about her experience with being born with a congenital heart defect and how she has been a philanthropist over the years, especially in helping nonprofit organizations. So, Nicole, when I started doing research for this episode, I was impressed with how many changes finally cries has gone through over the years. Tell us why you decided to get involved with them.

spk_4:   18:14
Oh, it has evolved. You're right. Over many years, it really happened quite by accident. I have been building a particular community on Twitter, and I try to keep it to the controller heart community, and I just happened to me. Philip Wolf, the owner of Wolf Entertainment Productions, and I helped them last year finish out an Indiegogo campaign. And then I don't know, here we are a year later, and we've re storyboard everything. It's gonna be a fantastic movie. It really is. I'm so excited about it. I think that to me we were gonna tell the right story, and we're gonna tell the right way there's gonna be some sad, but there's gonna be some happy just like life. And it felt like the right project for me. And you're We are? Yes. I'm going to Dallas once we've travelled to the Mayo Clinic. We've been to Los Angeles, and the gentleman in the picture with me is Mark the fight start Miller. He is the only person in the mixed martial arts to ever come back to the ring After open heart surgery. He had a congenital heart defect. He also has a book out. So, yeah, that was a post production photo shoot. That's really cool. So we're telling his story. We've got baby leave. God really run the gamut from birth all the way through me, old lady,

spk_3:   20:01
Are you about an old lady? That's so Freddy. But you need to go to the website. There's little trailer there. You'll get to see Mark the fight Shark. Miller. That's so funny. I haven't heard that name before, but yes, you'll get a chance to see Mark actually working out at the gym and he looks tough. It doesn't look like a week person at all. So to know that he was born with a heart defect should hopefully inspire others. And yes, I also saw there were some Children that were featured on the website, so that's wonderful. It looks like it'll be a beautiful story.

spk_4:   20:38
I think it was gonna be a good journey.

spk_3:   20:41
Yeah, I think it will be a good journey to I think it's interesting how the producers, from Silent Cries, decided to partner with from the heart production. It seems such an appropriate name for the organization that helps people generate money to create a film that's from the heart. So can you tell our listeners more about this partnership and how they can get involved? Well, what from the

spk_4:   21:02
heart production does is they give us a nonprofit status. We're under their umbrella. And so anywhere from a Kickstarter campaign to just going to our website www silent cry movie dot com and making a donation that allows the donation to be, ah, 100% tax deductible. And it's really been a good partnership. It helped out a lot. We never asked our heart patients, families who are in the hospital to donate. Obviously they're welcome to, but we look more towards grand parents or people who know people who have been touched by the for raising funds in order to get our movie produce. Yeah, there were a

spk_3:   21:51
lot of expenses in producing a movie, so I'm sure today would like to donate that that would be most welcome.

spk_4:   22:01
And we have at the website little trinkets you can buy. I mean, you make a donation and we send it to you, but still, your donation is 100% deductible. And just to share our trailer with their network social media to email anywhere to raise awareness that this film is coming. And when we finish stunning funding will have it made and out, Hopefully by next year. It's an exciting. That'll be

spk_3:   22:29
terrific. It is exciting. So it looks like silent crisis actually morphed into collisions, rocking the scars. That's what I saw in the trailer that she sent to me. So can you tell us again how people can watch the trailer? And can you let them know how they can share that trailer with others?

spk_4:   22:50
That trailer can be seen. Believe it. Our website. I don't control it, so I'm not sure, but they can go to Facebook. We have a Facebook page Christ, and they can look me up. Nicole Vickery and I haven't posted publicly. They can share it with Facebook. Twitter having up shared it on Pinterest instagram. You name it and you can plug it anywhere. Yes, collisions. Rocking scars. We decided to be more of a docudrama instead of just talking. Heads were collecting interviews to be interspersed through a very interesting story that we've written. And I can't wait having more Miller helping us with this. It has been a blessing because he really shows you how tough you can be and how the body can take it. And we hope it inspires others. Parents toe, let their Children do as long as their doctor says it's okay, Let him do it. And, um, I can't say enough good about it.

spk_3:   23:59
Oh, I'm so excited. I love it. It's a very dynamic trailer, so I do hope everyone will check it out. It was there last night when I looked at it. So yes, it was on the website, and I also saw it on Facebook. And all of these links will also be on a heart to heart with Diana Page in the bio section for silent cries. So make sure you look for it there. If you want to just have a quick link to go to, you can do that. Or, as Nicole said,

spk_4:   24:22
there

spk_3:   24:23
were so many different places that you can find it. Facebook, Twitter, instagram, you go for it. There are lots of other ways, and frequently you will see a share, but in. So if you just click on that share button, that's a great way for more people to see this wonderful trailer. Well, it's time for another quick commercial break. When we come back, we'll have Nicole tell us what her plans are for 2015.

spk_1:   24:46
Anna Dworsky 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 Blawg. Anna wants you to stay well connected and participate in the CHD community. Visit heart to heart with anna dot com today, go back to our show

spk_3:   25:19
Heart to Heart With Deanna, a show for the congenital heart defect community. Today we've been talking with Nicole Vickery about how one person can really make a difference in her world, and I want to thank you, Nicole, for coming on heart to heart with Anna. I hope that people who listen to the show we'll check out silent cries and collisions, rocking the scars, maybe even contribute to this really creative project.

spk_4:   25:42
I will thank you for having me. It's been my pleasure. So

spk_3:   25:45
tell us we only have a minute left, but tell us what you have planned for 2000 and 15. Let's see,

spk_4:   25:54
I think produce a movie between that and traveling to see my daughter

spk_3:   26:01
stay on the

spk_4:   26:01
road quite a bit. People wonder how I can do that, but I don't work a full time job. It's a matter of managing my time, working a few hours, resting and pacing myself properly. Like I could go on a week trip that I come back and it takes me 34 days. Thio kind of catch up with myself. That's pretty much all I have planned. Aside from vacation time later this year, maybe Hawaii. Well, it sounds like a

spk_3:   26:30
great plan. Producing a movie is a huge goal. You said that one. She will had the funding that hopefully it would be done in a short period of time. Is there a magical member that you all are striving for?

spk_4:   26:45
There is a probably around 100 and 20

spk_3:   26:48
$1000. OK, folks. So all of you listeners, if you want to see this fabulous documentary come in, every penny counts. There are two million people with congenital heart defects that are in the United States alone. Surely, if everybody just donated a couple of dollars, I think about how quickly we would be able to get this movie funded and they would even have a little bit of seed money for the next documentary. So, Nicole, it has been a joy talking to you. Thank you so much for coming on the show.

spk_4:   27:22
Oh, thank you again. I can talk about this all day

spk_3:   27:24
long. E really didn't really like time is already up. Oh, my God. I never went so fast. Well, everything. Check out collisions rocking the car. Give us that website one more time. Nicole.

spk_4:   27:39
It's www dot silent cry movie dot

spk_3:   27:43
com Silent Cries movie dot com Please check that out and don't forget to go to the heart to heart with Anna website Look in the bio sections. If you want a quick link to any of the sites that we talked about today, come back next week at noon Eastern time to hear our next show. Until then, please find it like us on Facebook. Check out our website

spk_4:   28:02
heart to heart with anna

spk_3:   28:03
dot com and our cafe Press boutique. Follow our radio show and remember, my friends, you are not alone.

spk_0:   28:11
Thank

spk_1:   28:16
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