Sports and Boys with Critical CHDs (Remastered)

Boys born with critical congenital heart defects are frequently not able to participate in sports like their heart-healthy peers. Because of the multiple surgeries needed, the frequent need for pacemakers or the concern about arrhythmias and the other complications that can accompany critical congenital heart defects, survivors of these defects frequently have to avoid contact sports or sports that are intensely aerobic in nature. How does this affect sons' relationships with their fathers? How can they still enjoy sports together despite medical restrictions? This show will feature the father of a young son as well as a father/son pair who have experience with this topic.

Transcript

spk_1:   0:05
Welcome 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 an ID your Dworsky.

spk_2:   0:31
Welcome to today's encore presentation of sports and boys with critical congenital heart defects. This is a topic that is of great importance to ah, lot of parents who worry when they're sold. Their baby will be born with a heart defect that they won't be able to enjoy sports to sit back and enjoy today's presentation. Spoken to the fifth episode of the second season of Heart to Heart with Anna, a show for the congenital heart defect community. Our purpose is to empower members of our community with resource is support and advocacy information. It's been all over the news lately. Hampton goalie Cameron Raveena set to return after heart surgery Baylor draft prospect Isaiah Austin diagnosed with career ending condition, mother encourages her screenings after son's sudden death embroidered Crest athlete who survived potentially deadly heart defect graduates. What do all of these headlines have in common? They all deal with boys or men with congenital heart defects, boys or men who were athletes. Critical. Congenital heart disease is a term that refers to a group of serious heart defects that are present from birth. Although babies with T C H D critical congenital heart defects may appear healthy for the first few hours or days of life sciences, symptoms soon become apparent. Children with DC HDs needs surgery or other procedures within the first days. Our first year of life. They're at risk for death or disability if the heart effect is not detected soon after birth, the heart defects classified A PhD may include but are not limited to one or more of the following conditions. Court, Station of the order Double outlet right ventricle, The transposition of the great arteries at scene anomaly. Hyper plastic left heart syndrome, interrupted aortic arch pulmonary atresia within tax septum. Single ventricle. Total anomalous pulmonary venous connection. Tetralogy of fellow bicuspid, atresia and trinkets or curious is how does having a C C H d affect athletes? The athletes in the news headlines I just read. All had different part effects today labile on Lee with boys with critical congenital heart defect. Which is why our topic today is sports for boys with a PhD to discuss this topic. Our guests today are Heart Dad, Tommy Jake Lee CHD Survivor, Richard at and Heart Dad. Can it tell me Jack Lee married Stacey Jack Lay on August 21st 2004. He is the father of two beautiful Children. His son, Kellan, is three years old and was born with a critical congenital heart defect. Hypoplastic left heart syndrome. Tommy is also data Kalen Ah, heart healthy five year old daughter and older sister to kill him. Tommy is an average sports. As a kid growing up, he played soccer, volleyball and basketball. He is a huge Philadelphia sports fan. He worked for MLB dot com online and now works for the sports authority. Tommy helps. Helen's heart defect doesn't prevent him from being able to achieve any athletic ALS he makes for himself. He's already playing ball with Tommy. Tommy dreams of the day when perhaps Callen will be the first age related survivor. Could be a pro soccer, a baseball player Hi, Tommy. How are you today?

spk_4:   3:32
I'm good. How are you doing?

spk_2:   3:34
I am doing great. Welcome to her To hurt with Anna.

spk_4:   3:37
Thank you for having me.

spk_2:   3:38
Well, I loved reading about Callen, and I especially loved seeing his pictures on your Facebook page. He is just simply adorable. Can you? Exactly. But heart defect she has, because we all know that hypoplastic left heart syndrome is different for every person who has it.

spk_4:   3:54
He is just diagnosed with hypoplastic left heart syndrome. The left ventricle was severely underdeveloped and able to function on its own. So he just had to go through the standard three surgeries. He was born December 21st 2010. He had his Norwood at two days old at Children's Hospital of Philadelphia, Pennsylvania. He then had the Glen in six months old. And then, just this past April 2014 he had his Fontana three years old.

spk_2:   4:20
So he is done with his scheduled surgeries for right now.

spk_4:   4:24
Yes, that's correct.

spk_2:   4:25
And it seems like from the pictures on the Facebook page Anyway, he looked very healthy. He looks great.

spk_4:   4:31
Yeah, he's doing very, very good. We're just a little over two months since discharge and definitely getting back to his typical three year old boy self, which is great.

spk_2:   4:42
It takes a lot of contacts in the Fontana such a major operation. What have the doctors told you about the killings? Prognosis.

spk_4:   4:50
They told us that every kid is different. There's no hypoplastic left heart syndrome kid that's going to be the same. And he'll set his own limits. Is the best Weather described it. They told us that we can't let his diagnosis defined him. Basically, you know he'll push himself. When he hit that limit, Holo went to kind of draw back a little bit, and we noticed that from time to time, especially pre upon Tam, we definitely noticed it. And then now post Montana. He definitely is pushing himself a little a little harder. The best thing that we heard was his surgeon, Dr Gaynor, and he said they do these surgeries to give them a chance of having a normal life. And as parents were, the ones that need to just let him live that life and our jobs just to let him live it, you know, push himself.

spk_2:   5:35
Exactly. I love especially that they said, Don't let his heart defect. Define him. I have a son who has hypoplastic left heart syndrome as well. And I can tell you that everything you just said is true. I'll be lamenting. Yeah, and my son is is 19 years old now and I've seen what a difference stages in his life. And he even got a black belt in taekwondo. So it's wow with these kids who are labeled with a Julie just can do if, like your doctor said, we allow them to live a normal life. Now that doesn't mean that every child with a jelly just will have the stamina to be able to earn a black belt. And let me tell you, it was very difficult for Alexander that he was able to do it, That's all. I have so much hope for your sake, I think many years later, they're doing surgeries a little differently. They've learned a lot because of people like my son, and, like our guests will be coming on later. Richard. They kind of the pioneers to help these kids actually see adulthood, so they're paving the way for your son. So as an athlete yourself, Tommy What do you think about when the doctors tell you about the seriousness of killings? Heart defect? Does it scare you?

spk_4:   6:47
Obviously, Initially, we just wanted to meet personally, actually, just wanted to make sure he was just healthy, see his face, be there and then just go through the steps of surgeries and do everything possible in our power to let him live a normal life in the initial reaction. Obviously, when you first get the diagnosis is there's all these things flying through your head. You don't even know what these terms are because you're just introduced to this right there, that second. And they just bombard you with so much medical terminology and information right away. And you're just trying to process what you can and you're picking words out and trying to understand things, so, you know, it's definitely the shock of it. But then once you take a step back and try and read everything and you start doing your own research and trying to get an understanding such the kind of piece together, and then you can kind of formulate your game plan going forward, especially the surgery.

spk_2:   7:36
Yeah, I really felt like my life was on hold until after we got past the Fontanne. And then I felt like Okay, now we can move forward like our life was kind of in a holding pattern until then because we knew that ultimately he was going to have to have all those surgeries.

spk_4:   7:52
Exactly. I think for me, especially the Fontane. Even when you first heard about the surgery's, the Fontana was gonna be the hardest one, even thinking about it three years ago because you have built that relationship. You know, you have that all that time between the Glenn and the Fontane to see him swing in and, you know, playing baseball, kicking a soccer ball, little things that a father will d'oh! And then once you get your date and that rapidly approaches and you're going with that whole process again, it definitely took its toll on me a little bit. But yeah, I completely agree. Now that we're post on tan, he has his routine appointments, still has his meds and so on and so forth. But there is no hurdle. Another major surgery coming up that we know is in the immediate future.

spk_2:   8:35
So you have been playing with him. He's been playing ball with him a little bit. What sport do you hope he will want to do some day? Honestly,

spk_4:   8:43
whatever. You know, whatever he wants to pursue, he loves the watch. You know, obviously the World Cups going on right now. Woke up 2014. So we've definitely watched a little bit of U. S. A soccer that will play a little soccer in the basement. His sister gone toe soccer camp. And we took him one day and he was kicking the ball, the goals and stuff. So he has a little basketball hoop that he shoot baskets with. And then we'll go outside and Little Toy Golf Club around the golf ball at the golf club and play catch with footballs. Honestly, whatever. He kind of just picks up and kind of runs. Well, we're not gonna push him into any sport, or we're not gonna let a child just cycle possible apart syndrome. Put a fear in him. If he gets hit in, the chance of the ball is going to be okay again. It's just gonna let him kind of grow into whatever sport he wants. And then he knows his limits, and he'll control how much effort and everything he can put into it.

spk_2:   9:34
It was a three year old is pretty easy because they are so self limiting. I remember Alex get tired. He just yeah, there's there's no peer pressure. But when he gets older, it's the peer pressure that can be so concerning. So have your doctors talk to you about well, in the future? We're not gonna want him to do certain sports. The only thing that

spk_4:   9:55
they really hit home, that fact of he will limit himself. They told us they don't really anticipate him being a power lifter, just with the amount of force and stress that it puts on your chest in general, just lifting weights. But again, they didn't rule out him not lifting weights just for like, physical fitness lies. And then I'm almost positive, they said, about changing and pressures like scuba diving and things like that. That could definitely play a factor, you know, with the lungs and the heart and all that. But outside of that, if he wants to run track, they said, let him on track. If he wants to play baseball on a play baseball and that's kind of just the mentality that I'm taking into it.

spk_2:   10:33
What's the worst part about being an athlete yourself? But having a son who has such a critical congenital heart defect,

spk_4:   10:39
that's a really good question. I just go back to that philosophy of just not letting that diagnosis make the rules for him. Basically the impact on it, obviously, you know, it is a severe condition. He'll have it the rest of his life. But I'm just gonna teach him everything that I was taught from playing ball with my dad and, you know, hopefully something that he picks up in life, he ends up. Maybe he just might not end up enjoying sports, and he wants to get into a theater or something else. It's totally his discretion, but I'm not going to allow the condition to affected mentally. I'm just gonna let him play it out like a normal kid. In any sport, you play who high school that. I mean, you have your bar scene, you have your J V team. See, there's tryouts. There's all those different levels that you have to go through, so there could be a sport that he wants to play that he's just not gifted enough to have the talent to play the sport and has nothing to do with this condition. That's just like the mentality that I'm just gonna take with him.

spk_2:   11:33
That sounds very healthy. It sounds like the perfect way for you to handle this situation with your sense, whether he had a heart defect or not. And it seems like sports seem to be even more competitive now than when I was a kid growing up. You see people putting their kids and sports camp at 4567 years old when I was a kid. You didn't go to the sports camp until you were in middle school or high

spk_4:   11:57
school. Yeah, I mean, I just saw something on ESPN of the day. There is a girl again, completely heart healthy, But she's nine years old and she is playing at varsity level in school, and she received a scholarship already. I think it was from Syracuse University. That's the media, that social media, that's just the spot like that. Sports is in your right. Pressures on these kids are just meant. It's just something that you just have to kind of take in stride. And just like I said, I'm just gonna let him kind of dictate and determine his sport's future. If it's something he wants to move forward with him there 100% support and obviously being very medical, cautious with everything and, you know, taking all that into consideration. But I'm just gonna let him make the rules.

spk_2:   12:38
Well, that sounds perfect. Thank you so much for coming on the show, Tommy. And for sharing your experience in your face with us. I think it's a different world now for parents than it was when we were starting out almost 20 years ago. It's hard to believe that my son is that old I remember so vividly when he was three years old and just kicking a little ball around. He had the Little Tikes basketball hoop in our living room. You would?

spk_4:   13:02
Yeah, I'm looking at it right now, but I

spk_2:   13:04
think all the boys have that nowadays in the US anyways, that brought back a lot of memories for me as you were talking about it. But we do need to rent a commercial break, but don't leave because coming up we have an adult CHD survivor, and we'll find out how he dealt with his heart defect and other conditions, which made it impossible for him to participate in sports the way he wanted to. When we return the heart to heart with Hannah,

spk_6:   13:27
Anna Dorsey 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 Web site, 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_2:   14:04
Welcome back to our show. Heart to Heart with Anna, A show for the congenital heart defect community. Today we're talking with hard dad Comey, Jackley th the survivor Richard and Heart Dad Kenneth about sports for boys with C. C. H. D. We just finished talking with Tommy about his experience of having assembled with a critical congenital heart defect and how that diagnosis has affected Tony's outlook on his friend's condition, especially related to sports. Now we will turn our attention to Richard. Richard is a 22 year old with hypoplastic left heart syndrome. He has had three open heart surgeries to lung surgeries and a tracheotomy. Before he was five years old, his surgeries were done in Queens, New York Although he now lives in Massachusetts, Richard celebrated his first birthday in the hospital. His 1st 2 surgeries went well, but he spent 10 months in the hospital after his third surgery. He loved sports, especially baseball. When Richard was a teenager, he went to the Madden Open Heart Camp, which was established in 1960. Thanks to the generosity of Edward J. Madden, the campus place for young heart patients can enjoy nature, sports and recreation. The sport Richard enjoys must is baseball, and the team he and his father cheers for is the New York Mets. We will meet Richard, Father tennis and our next segment. So welcome to you, heart to heart with their new Richard.

spk_5:   15:24
Thank you. I'm happy to be here. Well,

spk_2:   15:26
I am very happy to have you on the show today. And you had a lot going on. Medically, I have not heard of too many people who have to lung surgeries on top of all of the heart surgeries. Why did you need to have lung surgery?

spk_5:   15:40
I just ran through so many complications after my surgery. And it was very well. I was born.

spk_2:   15:46
Yeah. Things were different over two decades ago when they were doing the surgeries. You and Alex and the people before you, they were kind of still experimenting on you all to see what would work and what wouldn't work. And a 10 month hospital stay. Your poor parents and you. Do you remember being in the hospital for that long a period of time? Or were you still very young?

spk_5:   16:08
I was very young. I was probably about three or four times. So I don't remember any of

spk_2:   16:14
that's a blessing, because I'm sure your parents remember We'll talk to your dad about that here in the next segment. So you were three or four. So you don't really remember that. Of course you don't remember your first or second surgery since you had those Even before that the wind was it that you first realized that you couldn't run and play like the other Children?

spk_5:   16:30
I did, Jim. I just had a lot of limitations. Glad of extreme here. The extreme cold, like in the beginning. A gym, These run laps. I really couldn't do it. And people always make fun of me for what quality is, kid? I'm really not affected by it. How

spk_2:   16:48
so? Even when you were a little boy, even when you were in elementary school, do you notice that you couldn't keep up with the other kids?

spk_5:   16:54
Yeah. Keep up with the other kids. Watch. I'm

spk_2:   16:57
sure you noticed you had this big scar on your chest. Did your parents go to the school and talk to your P E teachers about your heart condition?

spk_5:   17:07
College is storm,

spk_2:   17:10
so they didn't make a big deal about it in front of you. What sports did you like to do when you were young? What did you like best?

spk_5:   17:16
But it was for his baseball. When I was really young, I was probably maybe six or seven. I started watching baseball. My dad and I really didn't understand anything. He taught me the rules signals. He told me everything.

spk_2:   17:29
So I saw that you're an avid Mets fan. Is is your father. So, do you collect stats on the Met? Do you have a favorite player? Can you tell me a little bit more about the mess?

spk_5:   17:40
Well, I was a kid. My favorite player was like Viasa. Now I'm a big David White fan and came 2000 song load of the World Series and they lost to the Aggies. Was

spk_2:   17:50
what? I was unforgivable that were you and your dad together when you watch that.

spk_5:   17:57
Yeah. I remember watching the World Series in 2000. I bawled my eyes out. They were lost. It was a letter came for you.

spk_2:   18:05
I love the photo that she sent me. That I'll be putting up on my website that has you and your dad at the Mets game. How often do you and your dad get a chance to do that?

spk_5:   18:13
We will watch twice. You at least

spk_2:   18:16
do you think that watching the Mets together has brought you and your dad closer?

spk_5:   18:20
Absolutely. You love sports kid, And every day you get home from work, I'd watch the games with them. We talk just watching baseball, especially with my dad.

spk_2:   18:30
There is something special about that. I know my dad like you, is an avid sports fan, and he especially loved baseball, and when he was a little boy, you could watch it on TV. But you could listen to it on the radio. And he told me stories about sitting with his grandfather and listening to the sporting events on the radio, and that was something special they did without fail. Nobody was allowed to talk when the baseball game was all because they were sitting there just glued to the radio. So I can imagine what it's like for a father and son in today's day and age, where you can not only watch everything, but there are so many people who have this TVs that have the screen in the screen, you can actually watch to ball games at the same time. If you want to technology, how do you feel that your heart defect has affected your ability to get close to your dad through sports? Do you feel that it has intimidated you? What do you feel that you and your dad just found a healthy other way to get close.

spk_5:   19:27
I think that a lot. I didn't even very quality, even with my all condition. Call it my Little League team for about a year or two. That was fun. You know, we always had catches in the backyard. You always hit balls made. It didn't really love is when I was a kid and then my, that's middle school and high school. I realized that it was too dangerous for me to fly.

spk_2:   19:48
But when you watch the games together and you probably talk sports together right

spk_5:   19:53
old on well,

spk_2:   19:54
it sounds like you have handled that in a really healthy manner. And I so appreciate you coming on the show today. Richard.

spk_5:   20:01
Thank you. I just wanted to say one more than that. Hard cans and great Barry. No, I won't go on theirs, and I encourage Tommy's trying to go their ways. Air. Hi. It's really far lover.

spk_2:   20:15
That's great. We have another minute or two before we have to go to commercial break. Can you tell us more about this camp if it costs money? How long you go? Do you spend the night that kind of stuff?

spk_5:   20:26
Overnight camp. My first line went for about a week, and then when I was a teenager, I went for two weeks. It's lots of fun. There's a swimming pool, Liza. Long hikes, canoeing, play sports. You got movies and stuff like that. Fortune press. It's really a lot of fun

spk_2:   20:42
now. Does that camp also have them nurses or doctors who are there that they understand the seriousness of the heart defects the Children have? Who attended?

spk_5:   20:50
They have the nurse 24 7 She dispenses all medication, stuff like that,

spk_2:   20:55
and you felt safe the whole time, and your parents felt safe with having you there.

spk_5:   20:59
It's really wonderful. I encourage anyone with a heart.

spk_2:   21:03
I'm so glad that you told me about this. I can't believe it's been around since 1960. That's probably one of the oldest art camp that we have here in the United States. Now we'll be providing a link to that on my website. Heart to heart with anna dot com. I'm really glad you encouraged Tommy Vietor that for his son, Kellan, because he's only three now. But the time goes by so fast. Kids grow up so fast. Before you know it, he'll be eight years old, and that will be something that he can look forward to doing. I'm really glad you had a good experience. Well, now it is time for a commercial break. Thanks again for coming on, Richard. We do have Richard Dad coming on next. You can find out what he was told when his son was born regarding sports participation and what his prognosis is less when we returned the heart to heart with Anna.

spk_6:   21:48
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 that information about advocacy groups as well as read Ana's Weakly plug. Anna wants you to stay well connected and participate in the CHP community. Visit heart to heart with anna dot com today

spk_2:   22:22
Welcome back to our show Heart to Heart with Anna, a show for the congenital heart defect community today. We're talking about sports for boys with T. C H. D. We just finished talking with Richard about his experience growing up with a critical congenital heart defect. And, as a matter of fact, this heart defect was the same. Heart defect. Hypoplastic left heart syndrome has Tommy's little boy killing head. Now we will turn our attention to Richard Kenneth. Kenneth is a proud dad, Richard. When Kenneth first heard about Richard being born with a rare heart defect, he felt like he was having a bad dream. It seemed real to him. Can I quickly realized that the nightmare was real and that he and his family had a lot to be a whip. When Kenneth was younger, he was quite active in basketball and baseball. Despite Richard's medical condition. Can it always shared his love of sports with his son? Today, Kenneth thinks his son might be even more sports minded than he is himself. From an early age, Kennedy realized that Richard wasn't going to be a star athlete. Kenneth remembers asking a surgeon if the day would come when he would be able to roll a ball to his son on the floor. The surgeons but so discouragingly about Richard's pregnancy that even that seemed unlikely. Richards gym classes had to be modified in school, but he was able to play Little League and we heard Richard talk a little bit about that. Cannot even Coach Richard for one or two of those years. Richard tried talker, but he never really liked it. His heart defect prevented him from tolerating extreme temperatures very well and limited his stamina. Every now and then, Richard and Kenneth catch a Mets game together or tell the boss one another. So welcome to heart to heart with Anna. Can it?

spk_0:   24:00
Thank you so much for having me, eh? I'm really enjoyed listening, Thio. Tommy speak of the experiences that he went through. It kind of takes me back when we all started some 22 23 years ago.

spk_2:   24:10
I know it goes by fast, doesn't it?

spk_0:   24:13
I didn't realize you had a

spk_2:   24:16
Yes. In fact, next month Alex will be 20. The time goes by very fast in My son also has hypoplastic left heart syndrome. I was saying to my husband I should have said it's sports for boys with hypoplastic left heart syndrome. That's all of the boys that will be talking about today. That artistic they have. And when I read your bio, you said Rare heart defect. That's what we were told to you that HHS was very rare. And yet I'm astounded how many people I am meeting, especially over the Internet, whose Children have aged. Just

spk_0:   24:46
it's for, like, one a lot just from the Internet, and you do realize as rare as it is. I mean, it could just be me. But it seems to be more prevalent. ***, we're just feeling more about it. Richard was born in you, too, and I remember meeting with the surgeon. He was diagnosed before. He's even born. He's telling you all this stuff, and it's almost like you're not bury me. He's talking to you about what, the next couple of years to get a hold, and it almost seems surreal. It can't be happening, and nothing was ever done, like mentally emotionally prepare you for what

spk_2:   25:19
Lee and you found out in utero. That's very unusual. We did not find out until after Alex was born, even though I had three ultrasounds, so you really win. Richard was going to be born and he had a choice. I

spk_0:   25:31
want to say she was probably really into 1/3 trimester.

spk_2:   25:36
Wow, you had really good doctors and really good ultrasound equipment. If they were able to pick that up, did that help you decide where you wanted to have the baby?

spk_0:   25:46
Well, when we met with surgeon, he basically I can't thank you enough for everything you've done for us. But typical surgeons really don't have the best bedside manner. I'm sure you're aware that he basically said, Well, we could do the operations here, or you can go to California with him. And he was going on this to say, Well, they have a different philosophy with us by the work with the heart and fix it mended, molded. Do what we need to do in California and other states. They up for transplants,

spk_2:   26:18
right? You they were probably talking about sending it Melinda,

spk_0:   26:22
right? Exactly. And they were saying, basically exchanging one set of issues. Problems for another.

spk_2:   26:30
That's exactly what surgeons e terminology. They teach them to say that Yeah, that's funny. That's exactly what he said when we did talk about transplant. Alex was actually sick when he was finally diagnosed that he wasn't eligible for a transplant. the only option for him was a surgical rap. You decided instead of going all the way to California to stay in your home state and have surgery there. Is that true? Yeah.

spk_0:   26:59
I mean, the world he was explaining it was he had to be awaiting the board for the heart to become available and with new boys. It's very rare for a heart to become available, right, so it would be in a waiting list. Then he had to be put on medications to prevent the body from rejecting the heart. He broke down so many different scenario of what could happen. Now we're going back. 22 years ago, we were told that that had he was born in 19. So had he been born in 82 there would have been nothing they could have done, been born in the nursery with all the other Children. Within 24 to 48 hours, he would have turned blue, and it would have been a scrambled supply that what was causing it and it would have passed,

spk_2:   27:45
right? It's amazing the difference a decade can make. And here we are, 22 decades later, talking with Tommy and I have a feeling that what you heard from your surgeon is not exactly the same thing that Tommy has heard from his surgeon. How the jury surgeons talk to you about Richard being able to do sports when he grew up.

spk_0:   28:05
There was a time there will be first met with the surgeon where the way he was making it sound like, What are we gonna have? You know, we were having a boy. But, I mean, what were his limitations? Is he gonna be able to even walk or crawl? So I'm beginning to think, OK, well, maybe the most we could hope for is somebody actually. Just hold Rolla, Balto, and that will be it. But fortunately for us, he's capable of doing things. He's holding down a job. Just as recently as maybe years ago, he got his driver's license, which is every time, even in the best of circumstances, where the child you fear driver's life but that fears everything's a little more escalated no matter what they do, no matter what the attempt, Your anxiety level is heightened just because of the condition he's on accommodating with the blood thinner. So my fears he gets into an accident, he starts bleeding and he just kept bleeding. But everything, every activity, everybody thing. It's different now. He has a younger brother on the younger sister. Unfortunately, a perfectly healthy and its difficulty because I always tried, for the most part, anyway, treat him no differently than the others. But you can't always do that

spk_2:   29:22
well, and Richard was your first born. Is that correct? That you were learning how to be a parent with a child who didn't have a healthy heart? 10 months in the hospital after the Fontana?

spk_0:   29:35
Yes, we were in there for 10 months

spk_2:   29:37
and they don't even imagine that

spk_0:   29:39
he had the reason why he had a crate, and the long operations was at one point lowering the hospital 10 month period he was having trouble towards. He was just building a float. He literally look at one point like a beach ball in the bed, and he had chest tubes and they were draining him, and it was just I can't even begin to describe it. I got really quit. My job took advantage of the Family Medical Emergency Leave Act, and you just basically stayed by his bedside we ate. Thank you. I don't Which That experience on anybody. So his lungs had collapsed from other fluid? Exactly. I mean, I remember one night it was a weekend, right? I think I think it was My ex was just there, and she just happened to notice. He was sitting on a small puddle of blood, Henry. One of his chest tubes came out and there was nobody. Never provided. And immediately. And we were literally holding him down with no anesthesia, no pain killer, no nothing. And it was not good. We're staying at the Ronald McDonald House, which is an organization with, if anybody is looking for a really good organization to donate money to. That is one of them. And I know Richard was on earlier and he was discussing this Madden open our camp unquestionably the greatest place. So you send your child or a summer who has a heart condition. It doesn't matter which heart condition it is. It could be. And I don't mean to be a little bit. Could be relatively minor. One could be a major one and anything in between and very well versed. There was a nurse on staff. The activities they do with these kids are amazing. It's a two week session. I think they have 32 weeks sessions for the kids. They sleep there. It's just a great, great, great place, and I realize we're getting way off.

spk_2:   31:30
We are getting off topic a little bit, but the sports they do to have the recreational sports there, and that is something that I think it's important. I think you know a lot of parents, especially nowadays They send their kids to sports camp even when their elementary school age. They don't even think anything of it. But we hunt parents. We have to think about that. That's something really major for us. And unless you can be a parent who's there constantly overseeing your child care, you're afraid to believe them. But it sounds like this camp, and there are a number of other wonderful camps. If you go to my website congenital heart defects dot com, I actually have a listing of summer camp, so any of you listeners who are looking for a camp for your kids took out www dot congenital heart defects dot com and check out the page that has the camp for kids because those are specially made for kids. Like are kids who need the extra nurse doctor, somebody there who, in case something does happen. They don't freak out. They know what to do. They have the medications there and they can take care of our kids. I'll make sure I just made a note that I also put a link to the Ronald McDonald House. That is a godsend, especially for the families to have to be away from home. You're at a time that you can't afford a hotel and the back. 20 years ago, most of the hospitals did not allow rooming in. Now it's really common that parents can stay in the hospital. But 20 years ago, they didn't want his parents there 24 7 a totally different world. I'm really happy to see that, even though Richard wasn't able to play baseball the way he would have wished, he could thatyou wantto still were able to use baseball to get close to each other. Can you give some advice to parents who today have just found out that they're gonna have a baby with a Chili Jeffs or some other critical congenital heart defect. So they know that even if their child can't play a sport, they can still find a way to become closer to each other. Three sports.

spk_0:   33:26
Oh, absolutely. 22 years ago. It's a lot different than it is today. Justin Perry Commune and his experience. The advancements are amazing, but it's for a sports. They're concerned. I really like what time said about letting your child trying to dictate his limitations. But I know where they are. I remember him saying something about Well, you know, after each surgery, he kind of like, took it to the next level. And, you know, if he feels he's had enough, he kind of pulls back. I was saying that when Richard to don't let the diagnosis, I don't want to say, not concerned. You frighten you. Of course. I think when we're scared, we're more courses. But don't let it be a death sentence. I guess what I'm saying. Years ago, I mean, when we first met with the surgeon, he says, Okay, well, we're gonna have the first operation, and his percentage of making it through is this. And if he makes it through that, then his percentage of making it to the next operation. Likelihood of surviving the next one is this. It was bleak with advancements. Who knows? Maybe we will someday have a great athlete who was a really, really, really don't know. But I mean, I was talking to his cardiologists not too long ago, met a week ago. He goes for his routine visits, and she's like, No, there's gonna come a day where Richard other Children might be candidates her transplant or they might be candidates for this, that the other thing. I mean, they're talking about a pacemaker for him in a few years and that that's what needs to be done with what needs to be done. But you need faith. You need just believe what this hope is. Chance thing. That's what always got me family.

spk_2:   35:06
I love that, and that's that's the theme for the show this season is that there is hope, and I think we do need that faith in that belief that our boys can make it through and they can be happy and live a healthy life. And you don't have to be a professional baseball player to live a healthy life and Kevin because there would be lots of heart healthy little boy who would also be crushed because it's so competitive and difficult to make it as a pro athlete. But our boys can still enjoy the sport. You guys can go to games together. You can talk shop. No, all the stats about your favorite players and I can still bring you closer together. And that's what I wanted to talk about with the show was that there is hope. Even if our kids can't be pro athlete, they can still enjoy sports with their fathers or their mother's. My sister is a huge sports fan, and I know that my niece and my sister enjoyed many sports together. So there is definitely hope there is hope for our boys. Well, thank you so much for sharing your experience with us. I can totally relate to your experience a little bit more than tell me just because we were raising our Children in the same decade and we were hearing those dismal dismal. Back then, it was one in four Children who were born with Rachel A just survived to see age five. Now 90% actually make it that far that hard to believe or what?

spk_0:   36:22
Just 20 years. There really is

spk_2:   36:26
a much more favorable.

spk_0:   36:30
But I was just getting back to the Little League and he started off T ball and I coached him table. I actually pushing three years, but I mean, yeah, I mean, he wouldn't round the bases that quickly and position I think he felt most comfortable with was maybe first base. And he constantly had to rotate the kids as a coach. Couldn't able one head, but yeah, I mean, he got ahead, you know? He ran. He group somebody out? Yeah. When you get a little older, it became more competitive and

spk_2:   36:58
a quick commercial break. And when we come back, I'm gonna put you and Tommy and Richard all on together, and we will take calls. And we actually have a caller who's waiting to talk to you gentlemen. So I'm looking forward to that. Let's just take a quick break. And when we come back, like I said, we'll have our question and answer session. Please stay tuned. We'll be back in just 37 seconds. We're offering us a mechanical hot. And he said,

spk_6:   37:23
now that I've had enough. Give it to someone who's worthy. My

spk_2:   37:27
father promised me. A golden dressed twirling held my hand and asked

spk_4:   37:30
me where I wanted to go. Whatever strive for conflict that we experienced in our long career together was always healed by humor. Heart to

spk_6:   37:41
heart With Michael Please join us every Thursday at noon, Eastern as we talked with people from around the world who have experienced those most difficult moments.

spk_2:   37:49
Welcome back to our show. Heart to Heart with Anna Chauffeur The congenital heart defect in community today we're talking with our dad, Tommy Jackley Ch. The Survivor were assured us and hard at Kenneth. It's about sports for boys with C C H D. But as I was saying with Kenneth, it really should be sports for boys with hypoplastic left heart syndrome. That's all of our boys today. Do you have a Chile? Just We've had such a great time talking with Tommy of Richard and Kenneth, and now I'm going to try and put them all on together so they can have a chance to ask questions of one another or make comments. It's always a lot of fun to be listening, but there are times that my guests told me, Oh, I so much wanted to ask a question of one of the guests. And so for season two, we actually have a chance to do that. Welcome back, Tommy, Kenneth and Richard. And here we go. We are in the session together. I want to thank all of you gentlemen again. I think we've really touched on a subject that is so important when a lot of people find out that they are going to have a baby with a chili just because my first book would have a plastic left heart syndrome, a handbook for parents tend to hear from more parents who have Children with a jolly just then other heart defects. And usually one of the first questions that a dad will ask me is, What about sports? That's why I wanted to address this topic today. It's such a important part, especially in the American culture, or bothers incentive to do sports together. I'm really appreciative of the fact that all of you came on today to talk about that, Tommy. You got the top first, and now you've had a chance to hear Kenneth and Richard talk do you have any questions for these gentlemen that she would like that?

spk_4:   39:27
First off, it was absolute honor to be gone. And it was an honor to hear you guys. You share your stories. Thank you very much. It's amazing to hear, like and Kenneth, you're really hitting this point home of just different. You know what? 20 years ago to now is the conversations I'm having with our cardiologists and compared to what you were told. And Andy, you same thing with you. Just that 20 years ago. Just what a difference in the whole time, Honestly, that you guys were on. I just kept thinking where it's gonna be 20 years from now, which is going to be absolutely amazing, because at that time, in the canopy, 23 Richard will be given 40 still, at an age to be athletic in all that. So it's just absolutely amazing just to hear your story. And I appreciate the tip about that camp. I'm definitely going to look at that and, you know, do some research on that. Honestly, guys, thank you so much.

spk_0:   40:17
Really? Again. I mentioned this earlier hearing your story kind of takes me back 22 23 years ago, and I cannot stress enough the advancements. I really, really can't every time I go to our cardiologists like, Well, there's a new medication one of the things that Richard has, he has a very high pressure in one of his chambers, and they don't exactly know why it's there. They could do another catherization, but he's already had three. What? They're basically only one more access that is left to get to the heart. And we really didn't want to use that up just for the sake of going back. And then it'd be a just reason for doing it. And we really don't have one. And she's telling me now My cardiologists couple weeks back that there's a new medication that could alleviate that pressure in that particular chamber without having to go in and years ago, it would have been unthought up and a transplant. Even in years to come. He might be a candidate for self. If I stress anything, if I could drive anything home from today's show is advancements, advancements, advancements, investments, you know, and how far we've come in and you mentioned it to me, and that's when you know, your son was born and my son was born. It was very Blake. They gave you a very, very little yellow on very little hope. Very little known.

spk_4:   41:39
Just the fact that you said, you know, you were just hoping to be ableto just roll a ball. So I just played to that level. That was your ideal situation. For what? Basically, you were told. They're telling us if he wants to run track. Oh, run track. Just absolutely amazing. Thank you, said the advancements. And that's why any time that I could help out with any kind of fund raising for our Children's hospital Philadelphia. I mean, it's a nonprofit hospital which a lot of people don't realize. And, you know, I mean, that's one of the best Children's hospitals in the world. The advancements that keep coming out of just amazing. So I really look forward,

spk_2:   42:09
all indented. Yeah, we're definitely all indebted to chop because that is where Dr Norwood work perfecting his technique. I appreciate any efforts any of our her parents or people in the heart community or in the community at large make toward research. You're right. That is definitely where it is right now. It was very bleak 20 years ago. In fact, that's why I wrote my book Hypoplastic left Heart syndrome. A handbook for parents because there was nothing out there to give parents hope nothing. And they gave my son a 5% chance to survive his Norwood because he was not diagnosed in utero. And by the time they diagnosed his heart defect, he was in congestive heart failure. So talk about Leak. Yeah, we really didn't have much hope for him to make it, but there was no hope if he didn't have the normal procedure. So it's kind of like what Kennedy was saying. We had to put all of our faith in that we had to believe in the surgeon and in our son that they were here for a reason. But we do shoot a caller. So let me put, actually have two collars, and I've never put this many people on at the same time in my studio. I'm gonna be taxing my studio. But my husband and my son called in, and I'm gonna frank a chance to say something, and I like someone to give you a chance to say something right after your dad. Okay, so we'll start with you, Frank.

spk_7:   43:27
All right. I have a question based on one of my own experiences. Alex, my 119 now with Agent Lee desk When he was a child tonight, at 10 years old, he was in karate while his older brother has over whether achieve his black belt. Now, it's really wanted to. But he worked up to the Brown Belt. He just couldn't push himself to go further than that. So he chose to quit. But a year, year and 1/2 later, he came back and made himself, by his own choice, pursue it and did achieve his black belt. I was wondering for you, Richard, are there still goals? You have athletic or sports goals you want to achieve in the future. Things you want to push yourself.

spk_5:   43:58
What am I really an athletic goal? But one of the calls I have is I'd like to take a trip to every baseball stadium in the majors. That's something I've always wanted to go.

spk_7:   44:08
Excellent. Like he

spk_0:   44:09
did. He did take karate kicking. Only got up to about a yellow belt from that shaken. But then he opted out of it.

spk_7:   44:17
Well, yeah. A lot of kids who are healthy decide they don't want to continue with karate for everybody. Yeah, that's like again my older son, my heart lt son competed state level in swimming and his brother Alex, with heart problems. He was on the team briefly, but it wasn't his thing. He didn't want to continue on a kid's heart, healthier with heart problems. They'll make choice. That's curious to Nico. You have that. I like that. But your dad

spk_0:   44:37
is all about doing that.

spk_2:   44:38
That is great. Well, Alex, do you have anything that you would like to contribute to the conversation? This is my son, Alex. He's 19 my type of plastic love. Tuck's in trouble. Oh, I

spk_3:   44:49
well, I did do karate, but that was back when I only had my first you fair do. He's done and I was able to finish my black belt, but I knew I couldn't really go beyond that at the time. I think now I would never have had my third surgery, the revised on tan and I know I'm much, much healthier. I am interested in picking up back up at some point It's just we can go a lot further with this stuff. Even with a heart defect, then there's one thing we can, but there are still limits. Sometimes

spk_2:   45:17
there are limits. Even if your heart healthy honey really, really has limits. Some people are just naturally gifted when it comes to athletics, and he waas. But you were so determined that you were able to achieve despite the fact that, yes, your brother did seem more naturally gifted because of your determination, you were able to go back to it. It wasn't actually a year. It was only six months while he did robotics for six nights and then he went back and it probably felt like a year or more because you had some of your forms. But the whole karate school was behind Alex. They were so happy to see that he came back and that he wanted to achieve that goal. He knew he wasn't done. He knew he hadn't quite giving it his all. But I think you're right, Alex. I think if you went back to do taekwondo now, since you've had the Fontane revision and since you've had the maze procedure, you do look Pinker. You do seem a little bit healthier. And I bet you could do it.

spk_3:   46:17
Yeah. Yeah, that's what I think they're. The surgeries are getting better now at how much they can do for us, you know, to make us closer to heart healthy kids. That good for anyone who has a new pen for trees, you know, absolutely mind. I

spk_5:   46:33
wanted to comment on a couple of months ago, I went to Boston to have my wisdom teeth removed, and I told him about my heart condition. They obviously knew what it was, but they told me that the normal procedure is being done on the new boys before they're even born, you know, being done in Boston.

spk_2:   46:49
They are doing an in utero procedure. It is amazing. Well, gentlemen, we are out of time. You guys have been so terrific and I can't believe it. I got all of the callers on here at the same time and

spk_4:   47:02
that I had one more thing. That's very important. Yes. One more things. All right. Staying on the sports topic, you were able to bring on a Philadelphia Phillies stand way conversation away. And now, granted, we both teams aren't having the greatest seasons you are able to bring together via the heart community, Mets fans and a Phillies fan. Anyone? Anyone listening on the coast, that is a tremendous accomplishment. I got a rough thing again, but I definitely needed to get that.

spk_5:   47:49
I don't want another holy about that.

spk_4:   47:56
That's another show. No,

spk_2:   48:02
I think way we probably could. But I'd like to do is to go to a ball game together. I think that would be a lot of what we might be on, Not all on the same side. I want to thank all of my guests, especially Tommy and Richard and Kenneth. You guys were so awesome. And Richard see, this just goes to show. Persistence pays off. Richard heard my show are heard about my show during the first season, and he wrote to me and he said, I want to be on your show and he wrote me two or three times and finally I said, You know what? I'm gonna make a show just for Richard, and so this is your show, Richard, Thank you for being such a great fan of the show and thank you for coming on in bringing your dad. This has been a terrific show. I hope all of our listeners will come back next week when we will be having our show at noon Eastern time. Until then, please find a like a some face. Check out our website heart to heart with anna dot com. And remember, my friends, there is hope.