The Miracle of Giving Back

Those who have been through the trauma of having open-heart surgeries and dealing with all of the situations that accompany them have many choices. They can choose to be positive and to see the bright side, even when things get difficult or they can choose to feel negative and like what is happening to them is unfair. Survivors can choose to let their heart defects define them or they can choose to live a quality life despite their difficulties.Sometimes a person used her personal trauma to empathetically reach out to others. That's what this show is all about. Tune in to hear how a CHD Survivor has used her experiences to reach out to others -- specifically to children with learning and medical disabilities. Discover the miracles she has witnessed over the years and the good that can come of living a challenging life.Today's show, "The Miracle of Giving Back" features CHD Survivor and special education teacher Catherine Scavone.***Thanks to Stuart Miles of FreeDigitalPhotos.net for the illustration***

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Transcript

spk_0:   0:03
Welcome

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to heart to heart with Anna, featuring your host an urge or ski. Our program is a program designed to empower the

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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 edge or speak.

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Look into the fifth season of heart to heart with Anna are penises and this male clothes do have been. We have a great show planned for you today. Over one and 100 babies are born with a congenital heart defect. What happens

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after these babies were born? How many of them survive childhood With advances in medical technology, improved surgical techniques and follow up care and a vast array of drugs and devices, more and more Children are surviving not only their charted but into adult show deals with one such a survivor who has not only survived the chosen to lead a life of service to others. Thanks to the trials and tribulations, Katherine has survived. He's an empathetic soul who strives to get back to the others today. Show the miracle of giving back featured Katherine Skull Bone Conference Given is a 28 year old special education teacher who has undergone four open heart surgeries, including a pulmonary valve replacement in 2000 and 12. She worked in special education for six years. She has also served is the new teacher mentor, presented at conferences served as great chair and sponsor of Buddies Club. Catherine's mother, also a teacher, gave her a love of teaching. However, she wanted to work with students with special needs and those who have medical conditions capturing understands her students needs and released to their parents, who are concerned for their Children. As a child, Katherine played competitive fucker. She attended the University of Georgia and received a kidney May Taylor scholarship this past winter. She graduated with her master's degree from Graceland University and mild and moderate intellectual disabilities, and she also married her husband, Max. They're in the process of building their first home and can't wait to start their lives in the new city. Welcome to heart to Heart with Anna Catherine. Thank you so much for having me on Are excited to be here. Well, I'm so excited to have you on the show. And what an exciting time of life for you. You just finished your masters and you've got him married. And now you're ready to start in your life with a new house. Oh, my God. You must be out. You know, my parents

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always say I take too much on and I do it all at once. But they move into our new home and hopefully we'll have it furnished by the time we move in.

spk_4:   2:41
Well, that's because it would be really good, because it helps to have a chair to sit on our bed to sleep in. But it's such an exciting time for you to do. You already have a job, or is that something else that's new for you? I actually got a job and a new district

spk_5:   2:55
in fall, so I will be only like, a 15 minute drive for our new house. So here, really early. So I actually

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weak. Oh, my goodness. I'm so lucky you came on the show. When you do, you have a little bit of time. I'm really curious, Catherine. When your appearance discovered that you actually had a congenital heart defect And what pregnant they were given.

spk_5:   3:18
I was born an identical twin and back that I didn't do ultrasound as much that they do now. My parents really had no idea that I had a congenital heart defect. My sister and I were born B A C section and, of course, the operating room. They doctors those people in there, including a pediatrician. So I was the 1st 1 born, and when I was born, I was born that blue baby syndrome. I was completely brew. And then I was given oxygen, and they actually transported me immediately to the Children's Hospital in Atlanta. So my mom had a day at the hospital where we were born at, which is about an hour away with my identical twin sister. She got to see me and passing as they with me away and really call my Yeah, it was really tough on my mom. They told my that they I thought it was a pulmonary heart defect, but until there that more testing done, they really couldn't confirm it. So my dad paid to stay with me in the hospital, and the day after I was born, they did, ah, heart cast on me and they did have pulmonary atresia and also on underdeveloped left ventricle until burglary. So they waited a few more days. So I ate became a little bit stronger, and I was admitted to the I c U where I stayed for almost the 1st 3 weeks of my life.

spk_4:   4:44
Oh, your poor mom. It

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was difficult, but luckily, her parents came to stay with that lives with the 1st 6 months after my sister and I were born to help her and juggle between the hospital

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and baby, Katherine here were in the room with a buddy for nine months. And then all the sudden, you're whisked away from all the sounds that you were used to your mother's heart. Beat your sister. I just can't even imagine that. I mean, wow, that was your mother able to come up to the hospital after she was discharged and bring your twin. She was

spk_5:   5:19
with the convent. See us. They mostly juggled a lot back and forth, and she had to go back. She had a great team at her elementary school that really helped out and started a scholarship fund to help me and help with all of the medical expenses while I was in the hospital.

spk_4:   5:36
Wow, What a story. What a beginning. Beginning. So there was definitely a rough beginning. Your dad have you travel back and forth and probably uncertain where he should be at any given time. And in the days before cell phones, everybody. So it wasn't even like you could keep in touch while you were going back and forth in place? No, not at all. Wow. Well, the fact that you are an identical twin and you have this major hurt effect and your sister didn't give pause to whether or not congenital heart defects are genetic with one twin who has a serious heart defect like rubber, plastic, left heart syndrome, or pathology of furlough. And their twin is completely unaffected. It's pretty amazing.

spk_5:   6:23
It is. And I've taught several students, which is so weird to me that the twins and one was born with Down syndrome and one is a completely normal developing twin, and it baffles me, but it really does show how much could be affected. I have multiple birth.

spk_4:   6:41
Well, absolutely. And how complicated the human body is on women giving birth, that just developing attunement inside of us. It's not all what's ring in science books, is it?

spk_5:   6:53
No, it's definitely not. And my mom has such a bond with me as she does with my thing. My dad and I have a stronger bond. He spent more time with me in the hospital. He was the one that had to hear all the medical news and relay it to my

spk_4:   7:08
mom. Yeah, well, it's amazing, even if infants we may not have really memories of what happened at that time. But I think our brain knows, and I think that we do develop that for you. It was probably a great sense of security, that one voice that you have been hearing while you work that was being inside your mother's womb when voices near that was familiar. It wasn't all unf Amillia voices, and I just think that's fascinating. But you called me in our correspondence. You had three open heart surgeries in the 1st 18 months of your life, what your parents told you about the surgeries or about your early years. What do you remember? I don't remember too

spk_5:   7:48
much about my early surgery because they were just when I was so young. From what my parents have told me, my first surgery was when I was what they decided to do. Being diagnosed with pulmonary atresia is to grasp the pulmonary bow so that the blood could flow freely in my heart. And the surgery went well. However, leaving so young, I aspirated some of the milk from my stomach into my long, And at that point I became in critical condition. So that night my cardiologists actually spent the entire night by my bedside because I know that he was. And how critical Eye Woz. And then two days after my surgery, they had to go back in and put in a shunt, help my left ventricle because I left. My heart was so underdeveloped. Then during that surgery, my long started filling with fluid. So my first Christmas was actually in the I. C. U way still have today in my house. Around Christmas time, my mom put out the Christmas card that the nurses had made for me for my family, and I you

spk_4:   8:59
how sweet is that? Oh, my goodness. And that your mother has cherished that over all of these years. Wow, that's really special. So you went through a lot. Did your left ventricle respond to the shunt? Did it start to grow? It did.

spk_5:   9:14
My left ventricle responded, and when I was 18 months old, I had the third surgery. So that's when they decided to take the shot out. And the surgeon also wanted to rework that you have done on the grass and the surgery was successful. However, I had difficulty coming off bypass, and they actually had you open me back up, put me back on bypass. And Stephen, I see you with my chest open, just in case they had to go back in for more surgeries. And my mom said that was a long time. A couple weeks in the hospital, she told me I was scared of everybody that came into the room like that really proactive person now, because how much I had to be pricked and poked when I was a kid that I became the very proactive person like my mom said. Her favorite time was when we got there, rides with the wagon in the hospital. So if you remember Cuddy, Lux win. No. Yes, and she said that was my favorite. I think of you in the hospital with you. Grab the wagon and listen to the Teddy Ruxpin story.

spk_4:   10:22
Cute. Interesting. I just had a guest on and we were talking about the very same thing. And here you were in Atlanta, and there he was in Australia. The same thing. The only thing he really remembered from his open heart surgeries was being in the little red, white and being pulled around. And the little old leg isn't that funny? That got everybody listening. Who works in the hospital? Make sure you have plenty of wagons because these kids look forward to that and respond to that. But, my gosh, pity Rex and I haven't thought about him in years, but that was a very popular toy for a while. And how comforting to have that soft bear to snuggle with. And, yeah, you tell stories and sing songs that you need. You don't really remember that you were just a baby. I mean, maybe you do remember the rides in the teddy Ruxpin, but I imagine maybe some of those memories from your parents telling you about it.

spk_5:   11:18
Yes, definitely. I don't remember too much, really. Most of my memory comes from going to doctor every year that we were a lot of my memory of having a heart condition, but my mom would always make it a really fun time for us. She took the day off when we knew we had a cardiologists appointment, and we make that little shopping trip after the appointment and make it a day with two

spk_4:   11:43
need and something very special, because it sounds like you're probably in a pretty full house, having you and your sister born at once do you have older siblings? You

spk_5:   11:53
have an older brother who is 18 months older than me. So we definitely had the full house and lot going on. So that was kind of special times together.

spk_4:   12:03
That's really need. I have a son who was born with a heart defect whenever he had his appointments, and they were every six months. I tried to make it special for him and Joey because I homeschooled my kids. And so the three of us were like three Musketeers going everywhere, and I tried to make it fun, too. I think parents don't realize how stressful that can be. I mean, it's stressful for the parents that they think kids are oblivious to it, but they're not pick up on that. If you can make it fun, then it's not quite frightening later when they know they have to go back, because that's one thing. You guys have a lot of doctor's appointments

spk_5:   12:37
most of the time we have to go and your lead. But it would be an all day long appointment and then he never knew you had to get scheduled for an M R I. So that was another baby taking off. And though we have never knew, my mom did a great job of really making it kind of like a little special time with

spk_4:   12:56
that's really need. So what do you think with a difficult thing that you had to deal with and growing up with a congenital heart defect? I think one of

spk_5:   13:03
the most difficult things was the waiting game after I had my surgery at 18 months. Well, at some point they were going to have to replace the pulmonary valve. We just didn't know when, so it was kind of an every year thing of going to the doctor being what the echo showed and then determining if I needed more tests to see if I had surgery. My cardiologists was, like, you know, don't live in scent of our land because this is gonna happen. We just don't know when. And I can remember in fifth grade going to the doctor and the Echo didn't work so great. And he's like, I think the summer is this summer. We're gonna have to replace your valves. And I just remember sitting in the office of them just crying, cause I have no idea what to expect. But luckily, we lend more additional tests, and I was in such good shape that they didn't want to do it. Because, of course, with any kind of valve replacement is you get a new valve. The time starts ticking when you're gonna have to have it replaced again. So definitely always being cautious and knowing that this may happen, the surgery may have to happen, I think, also being born an identical twin and having that healthy twins. I always kind of felt a little different, and we both played competitive and knowing I could never take a day off. The team had a two week break. Most girls to go without training in that two weeks, and I know if I had to stay up to that stamina I had to work out during those two weeks during all my time off. So that was also a little difficult. Just come and always knowing you couldn't take the brake like everybody else could. My body would take longer to get back in shape than everybody else.

spk_4:   14:49
Wow. Well, they say after 36 hours of not exercising, you start to lose some of the tone that you have. And that's why it's so difficult for Olympic athletes to take a break for the very same reason. But, wow, I'm still just even amazed that you could compete competitively with something like soccer. That's pretty amazing. That's a very strenuous sport.

spk_5:   15:12
My parents were always big supporters of us playing a sport, and my brother and I were very involved in competitive soccer. My dad was gone a lot with my brother team and my mom stayed with my team and it gave us a great foundation toe live that physically fit lifestyle. And I definitely do appreciate that now, looking back on it,

spk_4:   15:34
yeah, they're too many lessons to be taught and to be learned from being in a competitive sport. I think it's amazing that you were able to considering the pulmonary valve is what helps us to breathe breathing. It's kind of important when you're running a pit down a soccer field and you were able to do that. That, to me is one of the miracles that I think we've identified already that you were able to do something like that. How old were you when you stopped competing?

spk_5:   16:00
I actually stopped competing my senior year, possibly looking into going to play in college. But my brother played in college, and when I saw how much time he dedicated to it, I wanted to have a different college experience. So when I decided to stop playing,

spk_4:   16:16
Wow, you went all the way through. Don't leave yet, but we do need to take a quick commercial break. When we come back, we're going to talk to Katherine about the other miracles that she has experience. We already talked to that one, and that is her. Playing sports competitively despite having three open heart surgeries have been having a pulmonary about the head issues. That's really, really quite amazing, but stay tuned and you can hear even more. The miracles that Katherine has experience will be right back.

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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 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 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_4:   17:21
Welcome back to our show her to heart. Madonna, A show for the congenital heart defect community today show the miracle of giving back features Katherine's Carbone, a congenital heart defect survivor. And we just finished talking with Catherine about her initial diagnosis and the first surgery that she went through and what her parents were told to expect, which was pretty much unknown. And many of us have been in that situation where we just don't know what's going to have the next and we have to play the waiting game, which Catherine said was one of the more difficult things that she experienced. I completely concur with that. We went through that with my son as well for six years being told that at any time he may need surgery and that is a difficult thing to live through. But now they're going to get a chance to talk to Catherine about miracles that she has experience. You know that this season, our show is all about miracles, and I know as a special education teacher myself that you have probably witnessed quite a few miracles. Can you tell us about a couple? I definitely think just a

spk_5:   18:20
special education teachers every day is a miracle with our students growing up with a congenital heart defect. They really didn't know if I myself would have a learning disability or anything, all the trauma that I went through it. But I think that's why I really identified with special needs students miracles. Every day in my classroom, I had thought several students with heart defects, and when I sit down with the parents at the beginning of the year we go through their medical conditions, we can share the story and then I myself can say I'm a survivor of having multiple heart surgeries. I think they feel at ease knowing that on there, every day with their child, the child is safe with me. I've had several students that were born premature, some the size of a co pan and just be them out on the playground, interacting with typical peers. It's just a miracle enough,

spk_4:   19:17
it really is. And I think when you are especially teacher and for those of our listeners who don't know I was also a special education teacher, you have a much greater appreciation for how intricate the human body is for all the different things that can go wrong. But more than that for the human spirit and how these kids are so resilient and how they can overcome what seems like insurmountable obstacles, One of the joys of my life really was being a teacher of the deaf and hard of hearing and being a witness to Children who really were miracles.

spk_5:   19:51
I completely great every day, just seeing the little things that my students could do whether or not they make a basket when we're in the gym or the one in the hill and can generalize that when we go out community with them. All of those little strides are what I value, and also their parents value well.

spk_4:   20:12
Oh, I'm sure the fact that you had pulmonary valve problems and you had problems with your left ventricle. All of that is related to pumping oxygen rich blood out to the body. So no wonder why the doctors may have been concerned that you would have a learning disability. I know that's something that a lot of parents are concerned about even today, with Children who are born with congenital heart defects. Did you struggle at all in school? Really, I do not struggle in

spk_5:   20:37
school. I definitely had my moment where classes got hard. And luckily, since my mom was a teacher, she was always right on top of our school rock and making sure that we were understanding everything. So I graduated in the top 10% of my high school class, and you also go on and finish my undergraduate masters. Now, map was not my favorite subject, definitely had the work a little harder in it. But I definitely did not experience any of those learning disabilities that a lot of people today.

spk_4:   21:09
Yeah, and I didn't. And of itself is a miracle. Yes, yes, I have a miracle and a blessing that you were able to do that. It almost makes you wonder. And I didn't ask you if you work with sugar. If you feel this place, just jump out there. But I know what my son. I had one son, and it sounds like your mother, too, who have heart healthy. And then I had a child of the heart defect, and it was a totally different experience. But I really wondered if when God gave me Alex, he also gave me a mission. And that mission was to use my education and to use my abilities to help others in the th the world. And I never would have expected that I didn't have any exposure to congenital heart defects. As far as I know, none of my deaf students had heart problems. If they did, it wasn't anything that was brought to my attention. So I felt like I was in a whole new world. And it sounds to me like maybe you were given this condition so that you could be there to minister to these little ones whose parents were probably terrified and hear their teacher understands. Probably like nobody else can, Exactly what they're facing. Yeah, I definitely

spk_5:   22:17
think so. And even my mom has experience that when she was a teacher, she actually got a live baby fat. And the mom requested that my mom

spk_4:   22:28
teach her son because he

spk_5:   22:29
had a congenital heart defect and she wanted a future that was familiar with that. So Ruffle was one of her last student in her class before she was hired. And that was just a blessing that my mom good help Russell out, and that, also with Mom, could feel safe knowing that he was at school with somebody who knew to start

spk_4:   22:50
and then that his mom feel that was a miracle, that she could have a teacher who had a child with a heart defect as well, and that she could rest a little bit easier knowing that he would be watched by somebody who knows what to look for.

spk_5:   23:03
Yes, it was a great blessing and knowing that your child was at school.

spk_4:   23:09
Yeah, I love that story. That's so amazing. I can't believe how fast time is going to rain. We need to take another quick commercial break. But listen, there's don't leave yet because when we come back from commercial, we're going to have Katherine tell us Some advice that she has to offer parents and adults with congenital heart defects will be right back.

spk_1:   23:27
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 C H D community. Visit Heart to Heart with anna dot com Today.

spk_4:   24:00
Welcome back to our show Heart to Heart with Anna, A show for the congenital heart defect community today show the miracle of giving back features. Katherine's given a congenital heart defect survivor, and we're just talking with Catherine about the miracles that she has experienced and miracles that she has witnessed in her life. And I just have loved our shows so far have had so much fun talking to you. But in a slash segment, I would love to know. First of all, if there's anything that you wanted to say that you haven't had a chance to say in the 1st 2 segments. But in addition to that, I'd love to know what it's why she would have for a couple just finding out. But they're about to have a child with a congenital heart defect.

spk_5:   24:39
The child will have a congenital heart defect. It is scary. I can't even imagine that. I definitely think one of the things that my parents never held me back, even though I did have a congenital heart defect they never said I couldn't do things may be getting cat food, and the only limit that they involve me in sports made showed that I say physically food. And then I didn't feel any different from any other child growing up, and I definitely think that helped out. And even though there are some Children that do have more medical limitations. There are so many groups now in special sporting activities that they dio and that will make sure that they are not passing their medical invitation involved in the heart community. 28 years ago, there was not heart community that is now the terms of other surviving the surgeries and that are in adulthood. And there are so many communities that parents get involved in, You know what to expect for their child.

spk_4:   25:47
Oh, I love all of that. Absolutely. It is a different world today than it was 28 years ago, and it was not uncommon 28 years ago for parents not to know and be caught completely off guard when their baby was born blue, like what you were today, with the improvement in ultrasounds and the technology that they have for pregnant women, it is amazing. People are finding out very, very early whether or not their child has a heart defect. And you're right. There are so many support groups out there, especially on Facebook. There's a support group for just about any kind of heart you could think of. In addition to broad sweeping groups like Heart Mama's Hurt Mommy's on a mission, and there are so many fun group out there that I agree with you getting in touch with those groups and being a member of the community that's really special, but also not holding your kids back. I love that advice, and I love the fact that your parents let you do what your twin did lets you do what your brother did and didn't ever hold you back. I think that's wonderful advice. Well, what about for the congenital heart defect survivors and the fact that you have chosen to give back? How important do you think that is? I think it is

spk_5:   26:55
so important because not only are we giving back, but we're also sharing our knowledge and creating more awareness that there are people living with congenital heart defects being involved in the good things that now is the red dress campaign. Now five K heart walks involved that we can get back and help spread the awareness and get to meet more people who were going with congenital heart defects.

spk_4:   27:21
That's wonderful. I love that. Yes, there are so many different ways. There are heart walks and there are all kinds of events. If you want to get involved, there is a way for you to get involved. That is for certain, and I agree with you. I think it's important to get back. I think it's healthy not only for the people that you help, but I think it's healthy for the individual. I know I feel good as a mom when I can reach out and help another mom when I can reach out. Oh yeah, I've seen that before because I think one of the biggest scares is to feel that you're so alone.

spk_5:   27:49
I agree. And when I would be, then he made a favor scholarship. I got to meet other college students that were born with heart defects and share our experiences, and it was kind of like how were very similar and now, with the magic of social media, were able to stay in contact with each other. And that's just a wonderful thing that's been in a car years ago.

spk_4:   28:12
Absolutely, absolutely. Katherine, we only have a minute left, but in the last minute I would love to know the single most important piece of advice that you could give to young adults who are born with a congenital heart defect as they enter adulthood, especially in light of effect that you just recently got married and you're ready to start your married life. I think one

spk_5:   28:31
of the things that I have been so lucky is very open with others about my heart condition and my max. He was so wonderful and accepting my conditions, knowing what it meant for us in the future that things such as starting a family may not be as easy as everybody else, but just know that I had support and that he would be there throughout my adulthood. My heart defect meant a lot to me. Being open with others and finding and doctor and an adult congenital group is so important because they know what it's like Now. You're an adult with a congenital heart yet, and that is a totally different ball game than adults who have never had a heart defect before.

spk_4:   29:17
Absolutely, absolutely acquired hurt defects are totally different than congenital heart defects, and finding the right doctor can make all the difference in the world. I agree 100%. That was excellent advice. Look at it. Can you believe our time is over already. I can't believe I completely It really did so much. But thank you so much, Katherine, for coming on the show today. I really appreciate being

spk_5:   29:41
on and thank you very much, Sana.

spk_4:   29:43
Well, that concludes that the goat of heart to heart with Anna. Thanks for listening today. Come back next week on Tuesday at noon eastern time. And until then, please find it like a check out our website, heart to heart with anna dot com and our cafe. Press city. We have mugs. We have license plate covers. We have car magnets. We have all kinds of stuff. Please go and check it out and follow our radio show on block talk radio and speaker. And remember, my friends, you are not alone. Thank

spk_1:   30:17
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

spk_2:   30:27
your host, Anna Gorsky can be heard every Tuesday at 12. Noon eastern time. We'll talk again next week.