The Miracle of Growing Up with a CHD

When children survived the early heart surgeries of the 1940s, ‘50s and 60s, it was often considered miraculous. It is because of amazing doctors Dr. Robert Gross, Dr. Helen Taussig, Dr. Alfred Blalock, Dr. William Rashkind (and far too many others for me to mention) that we now have over 1 million adult survivors of congenital heart defects in the United States alone. Today’s show is The Miracle of Growing Up with a Congenital Heart Defect and features Diane Pucci, an adult born with a congenital heart defect who has seen pediatric cardiology grow and change as she has grown and changed.

Transcript

spk_0:   0:03
Welcome

spk_1:   0:06
to Heart to Heart with Anna,

spk_2:   0:08
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 edge or speak.

spk_3:   0:31
Welcome to the fifties and a heart to heart with. Our season is nearly do happen, and we have a great show today. According to Dr Jacqueline Noon on nature dot com, When Dr Robert Grove Sly, gated Peyton doctor in 1938 pediatric cardiology is discipline was born by 1961 pediatric cardiology became the first subspecialty board in pediatrics years has brought enormous progress. Credit, ultrasound, car flowed opera and magnetic resonance imaging has made diagnostic credit catherization necessary. Instead, interventional cardiac catherization rapidly developed and is already able to replace surgery in the treatment of a member of cardiac defects. In the 19 booty that both worked with Dr Alfred Blaylock to develop an operation to save blue babies, Sharon created bears their name. The Block section. Tom Baker is frequently referred to as the mother of pediatric cardiology. By the mid 19 sixties, open heart surgery was being carried out in many hooks centers throughout the world. However, very little man regarded the natural history of congenital heart disease. So there was controversy over early indications. The timing of repair. It was not until the mid 19 seventies that the mortality rate for surgery and infants decrease sufficiently for the procedure to become common. In 1966 Dr William Rash Kind introduced a very important palliative procedure. Balloon intro. Yep, tossed to me. The doctors were instrumental in solving Children who would otherwise have died due to the effects from complications caused by the heart defects, according to a Toronto star. Health around this article. 1/2 century ago on Lee, 20% of those born with a heart defect survived, two adopted. But with medical advances today by the late 95%. When Children did survive the early surgery in the 19 forties fifties and sixties, nothing considered miraculous. Thes amazing. Doctors have fortune, any others for me to mention in 1/2 hour show, but we now have over one million about survivors of congenital heart defects in the United States alone Show is a miracle of growing up with genital her perfect and features Diane Peachy and adults born with a congenital perfect that being pediatric cardiology grow and change. He has grown and changed. They impeach. He loves to adventure of life and learning and meeting new people, her big Italian family and great friends. When the best of her time professionally, she reported a teacher to Children with special needs. Prior to that, she was tried like specialist, dedicated, committed in the name of Children and families in health care settings. She was Peter Better of degrees from Bridgewater State College in her master's that rule a college. She has a birth certified theater analyst and a certificate of the dance study in special education of malnutrition. She has lived in work in Chicago, New York and Florida and her present life. She is in constant pursuit of traveling and exploring the foods and customs of other cultures Can she speaks in time for her love of reading movies, cooking and theater. Importantly, he has a dedicated advocate about containment Heart association for a ch a welcome her banana Diane. Hi. How are you. I'm doing great. How are you doing, Diane?

spk_4:   3:47
Okay, A So with Thio, you can hear Roco and Gravel too

spk_3:   3:55
much. Well, Diane, I so enjoyed meeting you in Boston at the Body, Mind and Spirit Conference. I was taken aback by how many changes you have seen occur in cardiology over your life band. So why don't you tell us about when you were born and let your heart defects were

spk_4:   4:13
running the best time in the 19 fifties. Sci Tech Revolution Age Huge advances in medicine and cardiology. Good. Mad men develop in all kinds of wonderful things that has allowed us to have fabulous quality of life. I was in Boston right across from Children's Hospital in Boston, actually placed a lineman and walk across the street. There was something wrong. I have t g a left transposition of the growth robbery, which was closed, and I have some residual pulmonary stenosis. I suffered a complete heart block at age nine on that was in my room one of the first Children that they implanted a pacemaker in

spk_3:   5:06
wow a block of age nine. Well, that's just amazing that you said you were among the first Children to receive a pacemaker, just putting them in

spk_4:   5:19
adult. And it was going to be a very accepted procedure and starting to if I hadn't put a little Children yet. Dr Brand over the Children, women leading people, a small group of about nine or 10. And I was one of the first to put a post after my heart block and put it on the exterior. There was a box on my arm for a couple of days just to see if it would work. And then they took that off and then talk to my parents about Oh

spk_3:   5:56
my God, so high. You were nine years old. You're old enough to understand what was going on and to see that box on your arm tomorrow. But that's what was pacing your heart if you needed it. That seems strange. So

spk_4:   6:11
cool, like a little like that. Strange. That's the business of my life. Strange and cool, right? Sounds a little bit like science fiction, of course

spk_3:   6:33
you should. I mean, it's amazing that you were born like an optimum time for when pediatric cardiology was exploding and it was just really getting started. And yet how scary your kind of one of the pioneers that helped everything get off the ground. You didn't have a switch procedure. We didn't have the muster procedural bill just corrected your VSD. So that was when you were an infant. Wrote about to

spk_4:   7:01
surgery because the heart lung machine you needed to be fairly strong and big for that. We have the technology to do it on running me to grow a little, so little to do any surgery on me. And I was nine years of age.

spk_3:   7:23
Wow, You have a problem of being blue when you were little And were you allowed to go to screw and be around other Children? Or did you have to stay home?

spk_4:   7:32
I want to go to school. They watched me. I didn't participate in the Professor Jim come through for us. Really participate in germ. That was very limited. I would get wilder than turn blue very, very easily hard in that respect, that kind of different and special, very different in left around with kids, especially on a cold trend Blue. And I heard it was right for it to be over because I would be so cold.

spk_3:   8:10
Did they make you go out fly, you just have to stand around outside.

spk_4:   8:14
You did, but it wasn't like torture, but it wasn't like they were unaware. I never asked to go in there that I run around. I know every time I went to the nurse's office, everybody with and then when I was a great wanted me. So after one Chevy had to go to the nurse's office like out this way, comical because I was just lying there staring at the ceiling like these, because

spk_3:   9:02
happening that close them to realize that you needed the pacemaker and that they needed to grow up in heart surgery on you.

spk_4:   9:11
Well, this is a day that I had the heart block. I will got all remember coming with a stomach ache. And then I was out because most Asian went around the neighborhood and loving care that everybody was down for good. Well, I remember this sort of working out that the doctor's office, and that's coming. My brother tells me we're on the move, and I think it. And luckily for us to move with, it was in the area way, so they sort of get out. There was something wrong with my heart and put me with a station wagon and took me to the local doctor. I know that I had to go to Children. Seemed that I was involved with Children. But my dad came and picked me up and drove in the end. Airlifted

spk_3:   10:02
Diane Oh, my God. You survived. I clinic for Oh, my God, you were in heart block. So I guess you finally arrived, Children.

spk_4:   10:13
That's when they put the external pacemaker on and play that that because of that, my grades dropped Friday. That medication probably to Jackson, that I put out my I'm not without my heart way. My heart rate, I think 40 50 for a little kid Anybody, right? Right. So you know, when you talk about how prior to the seventies, so many of us And that's why we have these terrible way hard way

spk_3:   11:03
writing on your neighbors, your origin and having to be transported that that could be considered smooth sailing. But you and America. And that's what this show is all about. We need to take a quick commercial break, But don't leave because when we come back, we're gonna talk to you saying about some other miracles that she has witnessed or experienced growing up both a congenital heart defect will be right back.

spk_1:   11:26
Dworsky has written several books to empower the Congenital Heart Defect or C H D community. These books could be found at amazon dot com or at our website, www dot baby hearts press dot com. Her best seller is The Heart of a Mother, an anthology of stories written by women for women in the CHD community and as other books, My Brother Needs an Operation, The Heart of a Father and Hypo

spk_2:   11:51
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_3:   12:01
Welcome back. You are still heart to heart with Anna Show for their congenital heart defect community topic of the miracle of growing up with a congenital heart defect in our show. Future KMPC and adult born with a congenital heart defect who had seen pediatric cardiology grow and change as she has grown and changed. We just finished talking with Diane about what her heart defect when she was born in one of the changes have already seen such as not having to wear a pacemaker on her arm but actually having one in her body. And so now we're going to talk a little bit more about some of the other miracles that Diane had witnessed or experienced. The show is all about Mira Cope and being the to survive that one transport when you had passed out by being in hardback, that was probably not even the first, but definitely one of the major miracle has occurred in your life. Thea,

spk_4:   12:54
Every time I've been hospitalized, I consider it a clue. A miracle because you've been through the changes have been phenomenal, Remember? Certainly. Do you arrive at that village and at that time, a 50 50 chance and they put me on the heart lung. Even man was a very different place. You think about movies from the early 19 sixties, where all the equipment looked like glass. Ivy bottles have a little oxygen tent. If you run a fever, that would put you on a nice pad and it did not have I'd be any bionic. I got shot a little to keep getting shot to shot four hours, and some of it was a lot that I think of the advances 30 years and then I think about each progressive hospitalization. And the first time I got a pacemaker I was putting right. You stayed a week. Now I'm lucky if they keep you overnight Developments created so much talk about Medical E. I am forever grateful for how much good thing in my life before the next one, when I was thinking my thirties so in the first record was very dramatic and a lot of shots in the second room had antibiotic therapy in my house, and I did myself and live a little water come upon my parents anniversary party

spk_3:   14:40
friends. Oh my, But still, at age four, you looked so tiny, too. I'm sure they will really, really concerned about you have Ananda crude itis for those of our listeners who don't know, endocarditis is inflammation around the lining of the heart, and it can be fatal if not treated thing, either afraid of and it's not uncommon for our Children who develop endocarditis to have to do a little in the hospital. So very very condition. And that's amazing to me that in your forties you're either give yourself the antibiotics at home, that you didn't even have to be hospitalized for that. Wow, How many hospitalizations have you had, Diane?

spk_4:   15:26
I to Mercury ones. I had the broken heart surgery in the 1st 9 to 66 a seven sexual women, and they did. I'm not sure that completed the repair go. I have those two original paint smoker's laugh about a whore. One of them ever lasted about six months in the early stages of having a pacemaker. I was hospitalized repeatedly. The pacemaker changes, and, like I said, it would begin to live for a much bigger deal. And the way they started out being about five inches for my father and mother, the little bigger.

spk_3:   16:15
Yeah, open heart surgery every time they did the pacemaker

spk_4:   16:22
or good, Good. Well, no. But the first time was pretty smooth because I'm trying to change the wires, and that was 11. Probably had is that the pacemakers left, but the wires would corrode and snap, and I did have an episode of fat for my wires needed to be replaced

spk_3:   16:51
when those wires needed to be replaced. It's not like it's something you see. How did they know,

spk_4:   17:04
I kind of way out pretty quickly that with pacemakers were doing something from the lab. Looks like something out of science fiction movies. I just a little over my coast maker ever can transmit all my information to my doctor

spk_3:   17:37
at the conference. And I was just amazed that you don't even into your doctor's office anymore, that you have the ability to transmit that information for miles and miles away. Which, to me is another musical call of modern science. Our biggest challenge that you have faced growing up with a congenital heart defect I am.

spk_4:   17:59
The biggest challenge was getting my sense of self, a regrettable that seemed to do on the floor because grand, I couldn't do we. So everybody said the movie was going around with a bigger part of my memory. I was with the heart condition and through the years, how that in my life, another running it to play a major low. I have to say that about people with congenital heart defects doesn't are you periodically in my tracks when I least expected nothing, madam having to incorporate that into my larger life, which at some point that's even part of normal development for most people have to incorporate. Have everybody seems to have something Wait. I have nothing but one of the challenges way Come, something happens. That probe flew out of my life, right? Light writers went You have to stop. It's the weekend. No, that's not the Oh, that that any time sometimes you would be looked out of your life. Moocher health issue.

spk_3:   19:51
Yeah, Anybody take our good health for granted most of the time. But as we get older, you enter into new decades. You turn 30 u turn for you turn all the sudden you take for granted before now you can't because your body hurt that you didn't even know you have. I could relate to that little Do you think you're hurt? Effect played in relation to all of your passions, your love of travel and a food and books that did your heart defect playing that

spk_5:   20:24
Do you think

spk_4:   20:28
that shapes you? Really? I love how fragile we are way Anything can happen at any time, way, together, way travel, Absolutely way the thinking with food. Well, that part I remember from that Italian background that isn't the same thing. I was hospitalized, and you have to be NPR can eat something right. Morning food, hospital food, everything good, not

spk_3:   21:27
normally what she would want, but when you can't tell anything. Even hospital

spk_4:   21:36
I really loathe, comes from that. Probably travel people everywhere things, I think, certainly knowing that again, that anything can happen in any shoot. Much pity completely. That's something that quickly come around to a doctor I am. And how short, my kind like surprised, considering the way and good shape.

spk_3:   22:27
I love that I love that. And Alex, when he had his last open heart filled with 17 on after to provide that, and he had been held back the 26 days, which to a 17 year old field like for effort and it felt like forever. I was so hard for him to get out of there tomorrow, like tomorrow was never going to come. But it's funny because that's his new baseline. Whenever something seems difficult or something seems unpleasant, she pauses and hell, you know, at least it's not open heart surgery. New perspective

spk_4:   23:05
Exactly many times face difficult things I think is really nothing

spk_3:   23:14
way need to take another quick commercial break but don't leave out listeners, because when we come back, we're gonna talk to Diane about what advice he has to share with a belt and parents alike.

spk_1:   23:30
Nagorski 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

spk_2:   23:57
the CHD community. Visit Heart to Heart with anna dot com today.

spk_3:   24:03
Show her to her Madonna show for the congenital heart defect. Community Topic is a miracle growing up with a PhD, and it features Diane Peut and the dope born with a congenital heart defect team. Pediatric cardiology. Growing changes have grown and changed, and we just finished talking with her about her love of food, and I think she loves trouble so much and how technology growing change has been a fascinating show. Talking with you today, Diane. I've absolutely loved it. But now I'd like to end the show by asking what advice you have for a couple who just finding out that their unborn child will be blue heart defect. What do you think these parents need to know? Diane?

spk_4:   24:45
First of all, the booming. Even better time Frances Air so great, and that having a heart defect is a big deal not to minimize its terrifying for apparent, but that they shouldn't know that the medical advances air there. The car will be finally grow up, and they have no reason to believe that the trouble have a which life ahead of them and do everything you want.

spk_3:   25:14
I love that because I can't believe that the hand that there are still parent you are encouraged to abort their Children who have serious congenital heart defects and the parents of Children with Down syndrome who often have heart defect. They're still encouraged to a bird, and it it breaks my heart because you have a chance to live a full and rich life

spk_4:   25:37
I Korea can answer for everyone has been one of the biggest brooms. And today that they consider mine your surgery

spk_3:   25:48
because they can do it in utero. They don't even have to do it to me. Talk about a miracle. Being able to have your heart capital with me is miraculously. It's come in now that you long term survivors are getting older for new problems. Crop up. We were just talking about even for people like me who don't have a heart defect as I get older. When you were born with a congenital heart defect because you have more considerations, you may have a pacemaker. You may have medications that you take regularly a long term survivor so that they'll continue to have a good quality of life

spk_4:   26:33
hooked up with a good team of doctors. I said that all along. Like you a cello at our toes with adult congenital heart. I believe mouth, they're actually going to be certifying process. I think I've read that from doctors, so I hooked up with a good team because you do need my phone care. It's more of a plane and going to your regular doctor get hooked up with a great team. There's no reason not to have a good life with minor interruptions. I

spk_3:   27:07
like that especially when you said that it's a lifelong care. This is not something that anybody ever

spk_4:   27:16
doctor, who really understand. The difference is in your heart. Let the congenital right and how to treat those special. There are teams in the growing and train as many doctors as we can and get them out there

spk_3:   27:36
because we are seeing so many more of you survive 95%. When I read that article on the Internet and they did, 95% are now surviving, I thought, Theo Higher percentage congenital heart defect population really is getting older, and many more are surviving that if we don't train specialist is really going to be a problem. But I love the fact that cardiology will always be on the cusp of training new people and recognize the Net made for ongoing training of doctors so that they are prepared for what's gonna happen. Because we've ever, though, what is gonna happen next? You have loved your adult life in perfect other leader, the teacher or a child by specialist, and I'm wondering what it'll do. Growing up with congenital heart defect play in your choice of a profession. The

spk_4:   28:27
first years working with specialist on, and that was a direct connection when I was in the hospital, the child, you could only have visitation. Princeton have looming in and a couple of hours in the afternoon or evening, and there was a problem, and that was a pretty important. But we felt kind of normal. And so when I got over, I wanted to be one of those people that worked in the prison in a more specific professionals trained in their colleges like Rock'em Utica, but have to Gray's entire life. I spent a lot of time in the trial, especially the one of the things I'm most proud of is during my first years is Charlie specialists working with the Association for the Care of Children House, which is good because it that is a much needed one of the things we did it. We pushed photo to be room for there to be a 24 hour that and did all the hospitals and talk about advances and miracles. Doctors and the medical profession understand the booth developmental needs of Children through the years, so that is very, very direct connection. In terms of teaching. I'm not exactly sure. I just sort of gravitated into that head of information. How people become the people they are, especially if I get up. I understand that

spk_3:   29:54
kid. Yeah. More alien to you, don't you think? Light talking todo coming on to me. And that concludes that the third party hope Kanan, Thanks for listening today. Please come back next week on Tuesday at noon Eastern time. Until then, please find out like a something heart within a dot com and our cafe press batik Follow a radio show on blood Kark radio and speakers. And remember, my friends, you are not alone.

spk_0:   30:36
Thank

spk_1:   30:41
you again for joining us this week. We hope you've

spk_2:   30:43
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