Hey everyone, this is Dresden. Before we jump in, a quick note, this is Part 1 of a three-part series. Today, you're going to hear an incredible story from 1952. Let's get into it. This is The 1% Heart, a podcast about the millions of people living with congenital heart defects. In this episode, we have the opportunity to speak to William "Bill" Kasi, the longest living open heart patient. Before we begin, here is my normal quick disclaimer: Nothing said here constitutes medical advice. These are our own opinions, experiences, and stories. I also want to include a trigger warning as we will discuss medical-related problems. Listener discretion is always advised. With that fun out of the way, Bill, thank you so much for joining me here today. Drezden, thank you for having me. Now, I have struggled a lot with how to properly introduce you because you have done so much, and you have seen so much for open heart patients, or for congenital heart patients in general. Do you mind giving a brief introduction and your relation to the community? Sure. Well, I currently reside in Washington, D.C. I've lived here for almost 60 years. I was born and raised in Baltimore in 1949, and I was fortunate to be born in Baltimore because of my congenital heart condition. I was living about 3 miles from the Johns Hopkins Hospital. The other reason I was very fortunate when I was little was that my mother was a nurse. She was an Army nurse in World War II. In fact, she was a Captain in the Army during World War II. My father was a Sergeant in the Army. So my mother always used to say that she always outranked my father both in the military and in life generally. But when I was born, my mother could tell fairly quickly that something wasn't right. I wasn't like any other normal three, or four, or five-month-old baby. I seemed to be a little slower than normal. I wasn't crawling around, and she was going to watch me carefully because she could tell something was wrong. She had a suspicion that maybe I had a congenital heart problem because I had the classic blue baby symptoms. I had bluish fingernails, blue lips, and she suspected it's some kind of a congenital heart problem. But she watched me closely, and after about two years, she could tell that things were going downhill pretty quickly. I was not walking and moving around. I was lethargic. I wasn't responding quickly to stimuli around me. So she decided to take me to Hopkins, and I had an appointment with a pediatric cardiologist by the name of Helen Taussig. Dr. Taussig was probably, at the time, the number one pediatric cardiologist in the world. She had worked very closely with another Hopkins doctor named Alfred Blalock to develop what was known as the Blalock-Taussig blue baby operation. Dr. Taussig was truly a remarkable person. She had her own incredible life story beyond just medicine. In fact, there's a biography that has just been written about her, a great biography by Patricia Meisel. Dr. Taussig was born basically deaf, and I think she had scarlet fever when she was little. So when she examined me, she didn't use the stethoscope because she couldn't hear. She used her fingertips to hear my heart murmur, and she diagnosed correctly that I had pulmonary stenosis. My pulmonary valve wasn't functioning properly, and I wasn't getting the proper level of blood supply between the heart and the lung. That's why we were called blue babies because we weren't getting enough oxygen in our blood, and our blood wasn't bright red; it was a bluish red. Dr. Taussig saw me and followed me very closely for about a year. She could see that I was quickly going downhill, as most babies two and three years old at that time were who had pulmonary stenosis. She went to Doctor Blalock, and they were obviously very close already. She said, "You really need to operate on this kid. He's got pulmonary stenosis. It's clearly a bad pulmonary valve, and I want you to see if you can go in and fix it." Blalock, according to what Taussig later told me, looked at her and said, "Helen, I don't do three-year-olds. They don't survive the anesthesia." And she looked back at him and said, "Well, you know, if you don't operate on him, he's going to die anyway." He said, "Yeah, I guess you got something there. Let's do it, Helen, for you, I'll do it." So on April 5th, 1952, which happened to be Blalock's 54th birthday, a Saturday morning, they took me into the operating room at Hopkins. Dr. Taussig was there as well because she was very interested in my case by that point. Of course, with Dr. Blalock was Vivian Thomas, who was his surgical assistant that had worked with him for probably over 10 years. There's a great story of how Blalock hired Vivian Thomas, and if we have time, I'll get to that story as well. But the three of them were there. This is before the heart/lung machine; the heart/lung machine wasn't developed until about '55, '56. They put me on a block of ice to get my heart rate down. Blalock knew he only had about, at most, maybe 15 minutes to do what he had to do once they opened me up. So once they got my heart rate down, he did his signature horizontal incision and got to my pulmonary valve. They could see that it was working, but the valve itself wasn't working clearly. It wasn't smooth. Blalock turned to Vivian Thomas, who was always over his right shoulder, and he said, "Vivian, take a look. What do you think?" And Vivian looked at it and he said, "Let me try something." He took his baby finger, because he had surgical gloves on, he took his baby finger and he manipulated the valve. He poked you in the heart. Yeah, right, right in the heart. He manipulated the valve, and they then watched it for about a minute, and he could see that he got the valve to function, what it looked like to be normal, and it just needed a kickstart, that's what I always say. After they looked at it for about a minute or so, Blalock said, "I think that looks pretty good." And they sewed me up. Of course, when they... I forgot to mention, when they did my surgery, they had to break my sternum to get to my heart, which they did to a lot of kids back then. So they broke the sternum, they didn't cut it. Yeah, I think they... I don't know whether they cut it or I don't know how they broke it, but it was damaged because I had a second surgery about that in itself. But they finished the surgery. They sewed me up. Blalock went to his 54th birthday party after that, and I went to the recovery room. The experience in the recovery room is my very first recollection ever. It was Easter time. I was in a crib in the recovery room. To me, now thinking about it, it was like a boxing ring, but I'm sure it was just a baby crib. There was somebody running around dressed up like an Easter Bunny, and it scared the hell out of me. That's my very first recollection ever, being in that baby crib in the recovery room with that Easter Bunny. So what a way to be introduced to the world, right? I think there's something poetic about your life beginning after the surgery. Well, I've always regarded Easter as one of my favorite holidays because of that. So it happened that I recovered very quickly. Of course, I would see Dr. Taussig periodically after the surgery. She followed me very closely. I'm sure I was seen by Dr. Blalock a couple of times after my surgery, although I don't have a recollection of that. I don't have a recollection of ever meeting Blalock other than in the operating room, and I don't even remember that. But I was followed by lots of cardiac surgeons and cardiologists at Hopkins over the years after that. My mother, of course, who was a nurse, she followed me very closely too. My mother realized, I think, that not only was I coming out of a medical surgery experience, but that there were always mental health experiences that went along with that. She told me from the first days I can remember, she said, "Look, you indeed are very different. You've got a scar to show it from other kids, but you're not special and you're not better than other kids. So just grow up to be a normal kid. Take care of yourself. Make sure that the doctors look at you every now and then and listen very carefully to them, but just remember you're just a normal kid." That stayed with me. As I grew up through my early years and into elementary school, I just tried to blend in with every other kid that was there. Now, I knew I was different because I had a scar, and every now and then kids would look at my scar, and I would be aware of that. But it really didn't bother me. I was very active. I have lots of friends. I was very engaged in elementary school. I played a lot of sports, went on into high school. I played baseball in high school. The only thing I found that I had a physical limitation to doing was swimming. I just, for some reason, well, I guess the reason was obvious, I just didn't have the heart-lung capacity that you need for swimming. And I never was a big swimmer, but I would run, play ball, and do all the other things that kids would do. I'm going to, before we go to the next part, I'm going to jump in here. Just for those of us who don't know, the Blalock-Taussig-Thomas procedure, the three doctors you mentioned, Thomas getting his honorary doctorate afterwards, is a very big deal for the congenital heart community. Their procedure, their approach, I mean, before this approach was happening, patients like you and other cyanotic, other blue babies, would live very short and limited lives. Am I right in saying that? Oh, absolutely. I think most of them died within the first year or two. And this, if they... if they survived surgery at all. And what blows my mind, just as a comparison, my open heart for a repair of my pulmonary valve was on April 15th, 1996. That is, what, 40... You said yours was '52? '52, yeah. So that is 45 years afterwards. 44, I can do math, I promise. They didn't put me on a block of ice. They didn't cut my chest horizontally. They didn't manipulate anything with their finger. They went straight down my chest. They cut through my sternum. They repaired the valve with synthetic material to fix the pulmonary, pulmonary valve stenosis. This was, I was six months old when my mom said to my dad, "Does he look blue to you?" And by the next day, it was done. There was no waiting, watching, following up. I was six months old; they found the issue, they took me to one hospital, they found the issue, they air-vac'd me to a second one. And I have a funny story there where my dad hopped in his car and beat the helicopter to the second hospital from one part of Phoenix to another. But that's, that's something I probably shouldn't say. The change in 40 years, from deciding whether or not to do your surgery, saying you wouldn't survive anesthesia, slowing your heart by putting it on a block of ice instead of a bypass machine. Just the comparison is blowing my mind. Then the next, and so what I touched on there was the importance of this procedure. There's actually a great, is it, *Something the Lord Made*, with Alan Rickman in the movie about this? Yes. Very, very good movie. Alan Rickman is Severus Snape, for those that don't know. You talked about your mom's approach to mental health. A big part of what got me involved in the congenital heart community was how my parents were not told about mental health. Not told. We were always told I was one in a million. No one ever told us that there were one in 100 kids born with congenital heart defects. If it was not for my little brother, I think I would have been a lot different because my little brother was barely a year younger than me, and he gave me someone to keep up with and compare myself to. So while my parents were, I'll say this gently, they had their own trauma from the surgery and the lack of resources they got afterwards. I think if it was up to them a lot of the time, I would have been put in a plastic bubble, and me and my little brother just didn't let that happen. But that takes me to the mental health aspect. I'm wearing my Cardiac Neurodevelopmental Outcomes Collaborative shirt right now. They are a great research and provider organization that the doctors and PhDs, nurses, anyone who does work in the CHD mental health space, and the problems they're attacking now, are remarkable. Making subtle changes during the early, during surgeries and during the early life of a patient to keep their brain healthy and keep their mind healthy both physically, physiologically. But it sounds like your support consisted of your mom telling you you were normal and that you're not special. Is that what I heard? Absolutely. My mother did not put me in a bubble. She pushed me out into the street and she said, "Get out there and live your life and be, you know, be thankful that you're alive because a miracle did happen to keep you alive. But just be like any other kid and you'll have a much better life." I followed that guidance, and it was one of the most important things, I think, my mother and my father, you know, taught me. Yeah, you mentioned the movie. You know, there are two movies about the Blalock-Taussig-Thomas shunt. One is called, one is based on Vivian Thomas's memoir, *Partners of the Heart*. It's his autobiography. In fact, there's one page in the autobiography where he shows about how he used his finger to get valves to operate. So I'm not making it up. And then PBS turned it into a movie, *Partners of the Heart*, which you can still get on YouTube. But let me tell you something about Dr. Taussig before I forget. She was truly a remarkable woman. She was, I think, the first woman to graduate from Hopkins Medical School. She tried to get into Harvard Medical School, and they wouldn't let her in because she was a woman. She had a fabulous garden at her house. She was almost a professional gardener. She was always very, very interested in her patients, not only at the time of their medical interface with her, but after their surgeries and how they developed. I remember one story, 1973. Now this is 20 years after my surgery. I was up in Baltimore. I was at my parents' home, and they happened to have a TV on in the background, I'm not sure why. Dr. Taussig had just retired from Hopkins, and she was being interviewed on a local television show. Of course, I stopped and sat down and watched with all and wonder. That night, I wrote her a letter, before email and all that. I wrote her a letter, and within a week she wrote me a letter back with her 88-cent Eisenhower stamp on it, and I still have the letter, of course, right here. I just want to read a part of it to you. It's dated October 11th, 1973. And it says, "My dear William," she always called me William. "My dear William, your letter to me after watching my profile on television was one of the nicest letters I have ever received. You're quite right that learning from my former patients that they are fine and doing significant work," and she underlined the words "doing significant work," "means the world to me. Thank you for taking the time to write. You truly, you truly warmed my heart. Sincerely, most sincerely, Helen Taussig." So not only did she fix my heart, I was very happy to be able to warm her heart. Needless to say, I have this letter today. I keep it stuck between the two big volumes of a box set called *The Alfred Blalock Papers*. I've always been a book collector all my life, and I was at a book auction many, many, many years ago. It's probably been almost 40 years now. I noticed a big two-volume box set sort of on the floor. I went over to take a look at it, and lo and behold, it was the papers of Alfred Blalock. Needless to say, I grabbed those up in a heartbeat, so to speak. I still have those books today, and I put this letter right between the two volumes of the book and that's where I keep it. My wife says I should get it digitized because it's, it's, it's seen a lot of, a lot of, a lot of sunlight. Getting that laminated. Do everything to preserve it. Right, so the other story I want to tell, then I want to come back to say something about my followup surgery at Hopkins. My wife and I, she's also had some medical issues in her life, so we are very conscious of staying healthy, of keeping fit, working out, trying to eat the right things. We usually do a combination of a short nap and a long walk every day. We always would go to a health resort out there. You're in Phoenix, right, Dresden? Nashville, but from Phoenix. Okay. Well, we would always go to a resort in Tucson called Canyon Ranch, and we would go like for a week every August or September. I remember one year I was out there, this has probably been about 20 years ago. We were out, and I was in the men's locker room changing to go do a workout. There was a guy in the locker room, and he kind of kept looking at me. I thought, "Well, you know, this is a little odd, but you know, I'll get dressed and I'll move on." That night we were in the dining room at Canyon Ranch having dinner, and the same guy walks over to our table and he looks at me. He says, "He says, I want to apologize for staring at you today in the locker room. But," then he said, "Did you have surgery by Alfred Blalock?" I said, "Yes, in fact I did." He says, "Well, I'm a cardiologist, and all cardiologists recognize the Blalock incision." Because it's horizontal instead of... Because it's horizontal. Right. Now, not to be, not to feel left out, I did eventually get a vertical incision because ten years later after my surgery, Hopkins said, "We think we can fix your sternum," since it caused a depression in my chest. In 1963, I had my second surgery at Hopkins, and this time it was performed by a doctor named Alex Haller. Dr. Haller was an incredible person. This is a doctor I do remember very well. He was, when I knew him for my surgery, he was about 45 years old. He was completely bald. He was from Southern Virginia, so he had this thick Southern Virginia accent. He had a great sense of humor. He was wonderful with kids. I was, what, 14 at the time, and he said, "I, we think we can, we can repair that sternum." Well, they operated on me. Unfortunately, they weren't able to repair it as much as they had hoped. But Doctor Haller became a lifelong friend, and sadly he passed away in 1991. So I had, not to feel left out, I have a vertical incision and my Blalock horizontal incision. Best of both worlds. I've had three surgeries. The first was open heart, but the other two, the stents, they went through my leg. They went through an artery in the groin and just one, maybe two stitches I think at most afterwards, and that, that was it. I mean metal in my heart, but in terms of the physical effect, the open heart scar is the only scar I can find. Well, Dresden, not to let you take the better of me, but I've also had that too, because about 20 years ago when I was going to the Mayo on a fairly regular basis, and I'll get to that as to how that, how it developed that I got to the Mayo. They apparently, I've always had a small hole between the chambers in my heart as a lot of CHD patients do. And Mayo, my doctor at Mayo, her name was Carol Warns, Dr. Carol Warns, she was the top cardiologist at Mayo. She said, "You know, Bill, you're here for your annual check-up. You want to stay a couple days extra because I think we ought to fix that." So they did. They went in through the groin and arthroscopically fixed that hole in my heart which they, they were able to close. So I've had all three, and I, I hope I don't add a fourth one to it. I'm really happy you mentioned that because your, your story means a lot to me. I mean, I mean, I don't think we've said this, but you are the longest living open heart patient, and in terms of the parallel, and you're 76, in case we didn't mention it. I'll be 77 in January. And I, I mention that because you don't sound like you're 77. And I want to make sure everybody listening now realizes just how impactful this all is, and I'm going to tell you why. I had the open heart for the pulmonary valve. I had two stents for the pulmonary artery, left pulmonary artery, but also the hole in the heart, the ventricular septal, ventricular septal defect—I had one between the two lower chambers that they stitched up during the open heart. So not only is, is this episode important because we're able to talk about how care has progressed over time and just how lucky patients today like me are, but the parallels are dramatic for me. So I'm thinking your job is to go from 77 to 100, 150, and my job is to beat you. Well, if I go, if I go to 100, we're going to do Volume 2 of this podcast. That's, it's a deal. It's a deal. And that's it for Part 1. Next time we'll hear what Bill did with the rest of his life after surgery. Thank you guys for listening, and I'll talk to you soon.