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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 Dworsky. Welcome to heart are within a I am an intra Borski and a host of this radio program. This is the fourth episode of Season seven of Heart of Heart, with
our theme this season is congenital heart defects around the globe. I'm very excited for today's show to future. Ah, heart Dad in Israel, I've known Michael even for almost 20 years, but this is the first time for us to actually talk to one another. Most of our communication has been over the Internet because we belong to some of the same heart grapes. We used to belong to a group called Petey Heart, and it was 18 years ago. It's just part of believe we're finally having a show together. I'm really, really excited. Michael is the father of Leo leaving Well, I was born with double outlet right ventricle or D O. R V and of a trick Euler Septal defect, or VSD. In her life, she had a pulmonary artery banding arrest Ellie, a conduit later replaced with the Conte great conduit for a total of three heart surgeries and four heart cats. At age four, Leah was diagnosed with autism and then it H 13 with epilepsy. Leo was a stunningly happy child who loved music and creative activities. She was happy every day of her life, and the only thing she totally hated was epilepsy and the total lack of control that engendered. At age 13.5. She had gone to live in a home with other autistic Children, many of whom also had epilepsy, so they were not surprised when she developed it. Nobody, however, expected that one morning it would simply take her without warning. However, Leo would not have gotten this far. She did it if it wasn't for all the help and support she received from doctors, donors and the Israeli health system. Michael is a filmmaker for about 18 years. He's hot in both high school and the Hebrew University of Jerusalem, he taught television production in filmmaking. Michael and his wife, Leora, have been married for 28 years, and they also have two other Children. You Don and Sapir who were wonderful siblings to Leo. So welcome to heart to heart with Anna Michael.
Well, thanks for having me. This is really excited to finally hear your voice.
It is exciting. I'm so happy that you're talking to us all the way from Israel. And I guess the first thing I have to do is to express my condolences. Because when I knew you or met you 18 years ago, Li l was a baby and you were telling us and sharing with us all the different things that she was going through. And I don't think we've really talked a whole lot since you lost Leo.
So we haven't actually, I've been out of touch with the community. I still get all the P D heart connections, but very
well, I'm glad that you're in touch with me today and that we can talk about the health care system in Israel. I don't know anything about it. So why don't you start by telling us a little bit about Leo and her surgeries and how all of that took place in Israel.
Well, that's a very long and complicated story. Essentially, the health system is socialized medicine, but everybody has to have coverage, and there are different competing private companies. And so you choose the company that you want, and they all have to give same basic service, and then each company can offer additional service is for more money. So we all have the basic pay, and then we can get this much. It's not that expensive. It's quite doable. One of the best things I think that for Leo in her life was that she was born here, that she had really great health coverage and that despite all of the things that she was born with, there was no problem with anything, any preexisting condition. In fact, it often gave her a pass. So, for example, if you had a paved like Buck and I have to see a doctor and maybe $5 to see a specialist, she paid a buck and 1/2 to see the specialist because she had a pre existing conditions and because she needed extra. It's counterintuitive to what you think insurance company would D'oh on. She got brakes and she got better prices. And all along, this surgery was always there. The finest hospitals were always there on dhe to her great benefit. Everything she needed, she had and it didn't break us. So it's a lot simpler than you would think
it really is. I don't think I've ever heard of any surgeons or hospitals in Israel doing open heart surgery, and she had the rest only. So that is not a simple operation. That's a fairly complicated operation. So where did she have her surgeries? And it sounds like you all have state of the art facilities there
we d'oh! And one of the good things that her first cardiologist was a guy who, among other places, have studied and spent some time in Boston Children's. So he really is the Children's cardiologists of Children's cardiologists. He's really was the top one, and at the time it was a smaller community of families and so he was actually everybody's doctor, even though there were other doctors at the same hospital, all sort of funneled through him. Now it's a bit larger at the time. Also, there were two hospitals that were doing surgery for pediatric cardiology. Hadassah Hospital across town from where I live, and another hospital in Petah Tikva, which is a city near television. So the coverage was really very good, and it was a toss up as to which of the hospitals were better There, actually, both excellent today in Jerusalem is at least one more hospital that I know of that's doing it for pediatric cardiology. Hadassah Hospital, where we were for many years now, has opened up a new unit for adults with CHD so that you don't have to the hospital. You just moved from one department to another apartment. When you're any team, it's getting better. It's getting more widespread, and some of the best surgeons air really right here. It's amazing, actually, we're very lucky.
You are really lucky. And it's so good to know I wanted the listeners of the radio show from all over the world to know what kind of resource is were available. And so now we know that there are some state of the art programs right there, not only for Children with congenital heart to fix, but even for the adults that they grow into, and it's a joy, Michael, to see so many of our early survivors making it. That's what makes it so heartbreaking for me to talk to you about Leo because she didn't make it. But it doesn't sound like it was her heart that caused her demise. It sounds like
that's exactly right. Her heart resection find she had a pacemaker on the pacemaker was working fine, but she had a very serious epileptic seizure and she didn't breathe. So I asked about that because the pacemakers working with the problem and so will the heart can be. But if there's no oxygen coming in from the lungs, they're spasm that it's just running on empty. And that's what happened. So the heart was fine and the pacemaker was fine on the part that scared everybody. But where she lived was not eventually what took her. And that's just the way it breaks. You don't know. Tomorrow we're going to get up or not, and it's just the way it was. Not a lot of people in the epilepsy community or aware is a thing called Sudip. S u D E P sudden, unexpected death in epilepsy course, the morning it started. I called my pediatrician and she recognized it right away. And I think essentially what they did was it started on Friday morning at about quarter six, and they brought in the paramedics and they actually stopped. The process is probably dying right there, and they stopped it and they got into the hospital with a low blood pressure. But some blood pressure and a low heartbeat but some heartbeat, and they held onto it for a few days while the rest of it slowly went down. And my feeling is that really she was having sudden, unexpected death, and they just found a way to drag it out. All the wayto was Sunday or Monday night. So these are things that happened, and this is what life is about. And sometimes things go south and there's really nothing to do that.
I think that's one of the things that draws us Heart parents so close, don't you think, Michael? Because we all know that any day could be the last with our Children.
Well, that's absolutely right, because I remember thinking, which was much younger, that we're actually living under that specter every single day and We spent a lot of time worried about the heart, and that's the part that hurts so much because we were so fixated on the heart for a long, long time. And then after autism came on, which was much more visible on a parent, we were fixated on autism when this came totally surprised, totally surprised and caught completely off guard. But it's the sort of thing that we know about every day. I guess if you think about it, the spectre is there for everybody. But we just are so much more aware of our Children and Children with heart defects that I don't want to say. I wasn't surprised. That was totally shocked was saying that we sort of every day we know this could be it. There's something else I want to say about that because a lot of people told me that the first reaction is when you lose a child is every time it's wrong because child shot live apparent. But you know what? That's not necessarily true. It's only true in the last maybe 50 60 100 years since we've been curing diseases left and right, right? People in the Middle East tend to have 10 12 Children because this is part of the world where polio vaccines didn't come as release. That came to other places and vaccines and other things. That and other cures disease didn't come as early. And why did why? Traditionally, people here have so many Children so that a few will survive. My mother in law was born in Yemen, and she is one of nine brothers and sisters. But her mother gave birth or nearly gave worth 18 times.
Okay, so if you think about it, ours is the spoiled generation. We expect our Children don't live us. And that's not necessarily correct in terms of just the way people live. So we have two very, very thankful for what we have because we don't always realize we take for granted our Children and that they're going to outlive us. Not for sure you're
right. That's absolutely true. And you're right. 100 years ago, that wasn't even the case in the United States.
So you're right. That is a huge change, and you're right. There are so many families that did have many, many Children because so many of them didn't survive the first year, and that's kind of a sad note for us to go to commercial. But let's take a road quick commercial break. But don't leave yet listeners, because when we come back, we're going to talk to Michael about how Leah was diagnosed with autism and what service is air available for Children with autism in Israel and advice that he would have for other Israeli parents of Children with autism. We come back after this brief commercial break.
Anna 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 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 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.
Welcome back to our show Heart to heart with Anna, A show for the congenital heart of that community today show is hearts around the globe, Israel, and we're talking with Michael. Even Michael is a bereaved father to Leo. Alia was born with complex congenital heart defects that required multiple open heart surgeries and catherization sze. She was also eventually diagnosed with both autism and epilepsy. So, Michael, it seems to me that here in the United States, we keep hearing the word autism a lot more than we ever did 20 years ago. And you said that Leo was diagnosed with autism. So can you tell me when she received the diagnosis and what that meant to your family?
Sure. Official diagnosis. I think she was already four, but by then we had sort of been aware of it. She was already in special ed because she had physical issues, muscle tone, and that's everything. But the school noticed that she was showing some other difficulties. And I questioned if maybe she was hard of hearing because sometimes we call her and she'd be disinterested and she wouldn't come and look at us or anything like that. And as it turns out, she actually was deaf in one hear. But they picked up that there were some communications issues. We added a communications expert to be with her in class and to help her. And then we got the official diagnosis, and I think that was pretty. That was pretty massive for us because we had been concentrated on physically keeping her alive for so long. So we were concentrated very much on the heart issues, and then they were hearing issues and side issues and other things. But one thing I think we fear was just nothing like that. No, not autism, of course, didn't know the difference between autism or other difficulties of their mental difficulties. We didn't no difference between what do you know? And just not that I remember also typing in the group, I said, Just not the a word. So that, of course, is what we got. And it's devastating because now you're completely in unknown territory. There's no doctor that tells you what to do, and everybody with autism is different. So she's not on anybody's radar because things that you wouldn't expect she's really good at, and she's good at math and she likes to be around people. But then other things just completely, not good at socially and every other way. So we have to go out and pretty much invent the wheel. That was really hard on the other kids, too, because seven Lee now we needed more help. So we had to grow the kids up, make them adults much, much faster than they were. Well said She was four. So done seven Superior with six, and suddenly we needed kids to be home at four o'clock to help with Leo when she came off the bus. We need kids to be home to help with the l just to get things straightened around the house. The older Leo got, the more difficult it was for me to take care of her, but if personal needs, she needed, so we needed disappear. We need another girl on the house to do things, and the result is my kids sacrificed a portion of their childhood but became responsible adults when they were nine, which is a good trade off. But it's still a trade off and and something that I feel really bad about it. We'll always feel about about having deprived them. On the other hand, today is adults. They're stunningly wonderful people.
I think that our Children are given certain challenges just like we are as adults, and that that helps to define who they really will become
absolutely disappeared today is running a small business on the Internet. She's living with her blusher, and she's 20 years old and she's acting like she's 35. Well, it's true and she can do it A because when she was a kid, all girls like to pretend to be adults and they moved their hands and sit that way like they're all grown up. But she means that she's not faking it. This kid is 35 she's but but in a good way. I mean, she's a totally wonderful adult human being and completely at age 20 out of my hands and out of everything. She's just another great person that I know and start to think of. Her is my child because she's not a child anymore,
right? Right. I have two adult Children to Michael, so I can totally relate What kind of service is were available to help me out after she was diagnosed with the autism? Like you said, there wasn't a doctor saying, Here's what you do now But you said she was already in special ed. Did they have special service is for autism in the public school system.
He did, and it's wonderful. One of the reasons is a certain government minister whose name I probably shouldn't mention. At the time one of his Children was diagnosed to be on the spectrum, very high functioning went to school down the block from here, but because he needed help, the city of Jerusalem got really, really good at giving that don't help, and we were very lucky to have that. What they do is at the time there were eight. Now I think it's more like 12 or 15 classes of communications issues, various points on the spectrum of autism and the classes are in public schools spread out around the city. So together it's one big school. But the school itself is spread out all over town. Now that is good, because geographically, kids don't have to travel that far. The classes are also made of kids of similar abilities. It's all very specifically worked out for child's. It's wonderful, the educators air really well trained. There's a tremendous amount of adults around the room at one point. We all had a shadow, actually sat with her and worked with her in class. It's really very good. The educational programming for kids with autism is just great. School is out in late June, and they stay in the call it camp. They stay in until almost the last week of August. They're out to get, like, a one week vacation, and they go right back to school whenever this school vacation for a long holiday. They have camp. They go to school anyway. When they were teacher strikes, special Ed stayed in, so they got all the benefits of striking and everything they needed. But the kids didn't suffer, and the parents of the kids didn't suffer because there was a strength. This is really know how to strike well, so is far as I remember for public education. There's no extra charge just reading a public school, and the bus picks her up on the bus brings air back. There were additional service is that we did pay for. We found an afternoon program, a religious organization ran afternoon program for kids with all kinds of difficulties and challenges, and they would pick her up from school a couple times a week and then bring her home, and that costs money. But it was very, very affordable. It's all graded by how much you want. Andi. They don't want you to be hurt. They want youto have assistance that you need, and that's how it's always been. So it's always been like
That's really amazing. Well, what is the best advice than that you can offer Israeli parents whose Children have been diagnosed with autism? Or maybe the Children haven't been diagnosed yet, But the parents feel something's wrong.
First of all, there's a very good organization here for families with autistic Children. They fight the political fight that get service is that we need. Don't ever be alone. You don't have to be. You don't have to invent the wheel. Thousands of families have already invented it for you. The best advice is get into a group, get into any kind of organization, locally or otherwise. Make sure your kid is on the way to the right school and with the diagnosis and speak to other families, don't be afraid. You are not alone. You should never have to be alone, and it's always somebody who's been there. And as I said, although every kid is completely different, the families go through the same twisting and the same tournaments and the same working it out like everybody else talked to. People take the advice. It's okay to listen. A lot of people don't want to do that, and they should. Really, The best thing is just get into groups and be with people.
Would you be willing to share the name with us of the organization that you said It's so good.
Absolutely. It's called a loot A L. U G. I'm sure it's an acronym, and I don't remember what it supported is. But a lute works to provide money for education. They get the school's going. They have meetings with parents and group sessions and group therapy's. They are just fantastic. This private organization that we sent it to for the afternoon every now and then they would take her for a weekend, take her on a trip, give us a weekend to just relax and normalize at home and everybody else. These air great organizations pollute has spent a lot of time and a lot of energy in the world of politics and apartment they've been pushing for service is for autistic kids, and they're getting it because, as you said before, we're hearing that word a lot more than ever before. And it's not necessarily that there's more autistic kids and they're everywhere, but it's reported much more. It's out of the shadows, and people were scared in more traditional communities. You don't want to tell people that you have a child with a disease or a difficulty, because it might affect your other Children getting married. And that's a real issue for a lot of religious families. And there are a lot of religious families here, so it was in the shadows for a very long time. It's coming out. It's OK. People are aware. People talk some of the best organizations I've seen for any kids with any difficulties by the religious organizations. They bring it out to bring it to the front, and they don't let you be alone, which is the most important thing because as a loan is autistic kid looks because he or she is sort of locked away somewhere that families locked away right with her. We're just as closed off from our friends and neighbors as she is, because suddenly, is the bubble around us. You could break that bubble. You don't have to be alone.
I love that. Let's break the bubble. Well, let's take a quick commercial break. Don't leave yet because coming up next, we're going to talk to Michael about what he's learned about epilepsy after his daughter received that diagnosis. And what help is available for Children with epilepsy in Israel? We'll be right back after this quick commercial break.
Anna Dworsky has spoken around the world at congenital heart defect events, and she is available as a key note or guest speaker. For your event. Go to heart to heart with anna dot com to learn more about booking Anna for your event. You can also find out more about the radio program. Keep up to date with CHD Resource Is and information about advocacy groups as well as read Ana's Weakly Blawg. Anna wants you to stay well connected and participate in the CHD community. Visit heart to Heart with anna dot com Today
Welcome back to our show Heart to Heart with the Ana, a show for the congenital heart defect community Today show is hearts around the globe. Israel and we are talking with Michael Lee Been Michael is the bereaved father to Leo, and she was born with complex congenital heart defects that required multiple open heart surgeries and even a pacemaker. But that's not what took her. What ended up taking her was epilepsy, and she was diagnosed with both autism and epilepsy. We just finished talking about her autism diagnosis. So, Michael, let's talk about this epilepsy. She was diagnosed much later in life with epilepsy, and it sounds like that was just a horrible thing for you and your family to have to deal with. So why don't you tell us what happened? What transpired that brought you ought to that new diagnosis.
Well, it started one morning. She was 13 and she apparently had a seizure, and none of us had ever seen it before. So there was some panic and called an ambulance. By the time they came, she was over it most. Caesar's heir. Very short there. Less than a minute, maybe 23 minutes, maybe half a minute. And I didn't see a lot of it because I was running around trying to get the ambulance, but she had a seizure and then, of course, we had to do any e g, which is kind of fun. Did you have to do any E G if there's been a seizure? But if there isn't a seizure going on during the e e G, it will never find it anyway. And we need it anyway because she was about to move up north to that home for autistic kids where she was gonna live. So we needed in the E G anyway as part of the application process. So that was fine and they said to us this don't worry about it. A lot of times people have a seizure and then it's over and doesn't come back, and that's the end of it. And it seemed that way for about a year, and then she suddenly started having a lot of seizures while she was up there in the home, and that was pretty scary. We were laughing when they accepted her because they were nervous about her pacemaker. They've never had a kid with heart disease. We fell over when they said epilepsy and at the home they said, don't worry about it Every second kid with autism developed epilepsy. As a teenager, we can handle that. So they calmed us down immediately, and she was balanced for about a year, year and 1/2 and everything was fine. She had had a lot of seizures at school. She fell over left, but she'd never seriously got hurt and everything was fine. And we were relaxed because they said that would be it. And then a couple of months before the end, she started having really massively big seizures, and she was clearly out of balance. So it takes time to get a kid back into balance. And while they were considering what medicine to give her and want to do, it's just took her one morning just pretty much like that. Without warning. We didn't have a whole lot of time through late epilepsy. It was something again here. We thought the end of the world was autism, and then this happened. And then they calm you down and epilepsy don't worry something you live with, and it's not a real problems. Not like it used to be, but they were on and we just didn't know.
But, you know, there was controversy for a while about what quote unquote caused autism. And now I think that professionals are pretty much all on the same page that it is a neurological disorder. And of course, epilepsy is too. So it wouldn't be surprising if Children with true autism also developed the epilepsy. I guess so. She might have been having some petit mal seizures even when she was much younger, but because she had that autism diagnosis, you will probably maybe just thought she was spacing out and didn't even realize that she was having a seizure. Is in that tree.
I don't know, because when she had the first seizure of 13 we really knew. We really knew and it was shaking. And she just was not herself in any way that we had ever seen her before and is also a certain amount of pain with seizures. I think this was screaming. She was visibly upset. As he said in the opening is really the only thing I could she ever hated. Because of the total loss of control of her body and everything that she do, I tend to think that there was nothing until she was 13 and then we had that one seizure, and then it was quiet again for about a year before it started massively happening. I mean, you might be right, I've never seen it. And I would Maybe you're right. Maybe I wouldn't have recognized it, but I don't really think so, because this is still completely different. I don't see how we could have missed it,
Right, Right, right. This sounds totally different. I actually have some friends who have Children with epilepsy, and my nephew has had a problem with epilepsy, too. And we didn't know what was going on with Nicholas at first. And they said that sometimes the doctor could tell, just with the way he would blink his eyes, that he was having maybe a little seizure. And it wasn't as a parent is, which was saying What you're saying is readily apparent if there's pain involved or if all of a sudden there's a loss of consciousness. But with some of the other Children I've known who have milder cases of epilepsy, it's just like they space out for a small period of time and they're able to refocus, but for a little while they're not ableto focus and that's when they're having these itty bitty seizures. I think it's very complicated, Michael. Obviously, it must be complicated because of this institution that you're talking about was accustomed to dealing with Children with autism and epilepsy. And yet Leo was taken like she waas. They weren't prepared either. I don't know
if they could have been prepared anymore,
learned from it. Now is they keep oxygen close by. But I don't think that would have mattered,
right? Yeah, I don't think so either. I think sometimes when there's enough disruption in the brain, even if she were in the hospital, there wasn't really something that could be done. It's just that devastating.
I just think there are things that happen and sometimes people just die. And that's a very hard thing to think about debate, hard thing to realize. But that's just what happened, and as difficulties that is, you have to sit and find a way to go on. If there's any comfort in this at all, I don't know, but I just think it happened and there's nothing that anyone could have done to stop it. We don't help the school responsible. We don't anybody else responsible. We don't have any questions for the doctors that were answered. It just happens. And as I said 100 years ago, it just happened a lot more right, and
they didn't even know what caused it. A lot of times the kids would just fall down. They didn't know that the kids had cardio megally or had epilepsy. We didn't even know what was wrong and a lot of times on autopsy. You can't tell if it's an electrical problem with the heart. Anyway, I don't know if they can't the brain, but I just think there was still a lot of unknowns and you're right. We do. Heaven may be unreasonable expectation that our Children are all supposed to be healthier than we are, and they're supposed to live longer than we are. And that's not a given even today. That's not
nothing. I think it's anything is that not only to be expected to live longer than us, but if they're in trouble, we expect ourselves to fix it, and therefore there's a certain amount of guilt associated with What did we do wrong? We didn't do anything wrong.
right I think that's a really healthy thing for you to say, Michael and I think that's an important thing for parents to hear. Unfortunately, you and I know a lot more bereaved parents than anyone should have to know, because we were in the heart world for so many years. And unfortunately, a lot of the babies, especially 18 or 20 years ago. A lot of those babies didn't make it to adulthood. And I think you're right. I think unfortunately, there is a lot of guilt that goes along with that because we as parents, feel that our major job is to protect our Children. And the number one thing you want to protect your Children from is dying. Of course you
can. You can't think you cannot do. You cannot know you cannot do. I know
you're right. The last little question that I want to ask you and it is a short question is just what it why she would have for other Israeli parents who might have a child with epilepsy or who have a child who all of a sudden has been diagnosed with something and for seeing the autism that epilepsy, what advice can you give to those Israeli parents
if you have multiple issues like we had with the heart and everything else that came around that make sure that all your doctors are on the same page, make sure that all your doctors are talking to each other. Make sure you don't start some kind of therapy without checking with every other doctor down the line. One of the things that our hospital was not good at was getting all the doctors in one place at the same time on the same day. So if we had a cardiologists appointment, we weren't gonna have it on the same days we had a pacemaker deployment. That's unfortunate. There is another hospital, a Children's hospital in Patika, which is near Tel Aviv, where one of their specialties, one of the things they're known for, is that when you come in, it's one stop shopping. Your cardiology dr is there. Your pacemaker doctor is there. If you have other issues, they're all dead on the same day. So if you come from far away, it's all done. And that's the best advice is make sure all the doctors are working together. They're all on the same page. And please, please, please find other families to talk to and share experiences because you were not alone and they're not alone. And together you form a community and there's more strength in a community.
Absolutely wonderful advice. That's wonderful. Well, Michael, thank you so much for coming on the show today and for sharing your experiences in your advice with us.
Thank you very much. I've totally enjoyed this, and I'm not scared anymore.
Well, I'm glad you're not scared anymore. This is this way overdue. This has been so much fun. So if that does conclude this episode of heart to heart with Anna Thanks for listening today. Please come back next week on Tuesday at noon, Eastern time for a brand new episode. But tune in tomorrow because during the month of February, we will be having a radio show every single day and please find it like us on Facebook. Check out our website heart to heart with Deanna dot com and our cafe press boutique follower radio show on blunt talk radio and speaker. Please help this during the month of February by sharing information about this radio show with others and by following the radio show, especially on speaker. We're trying to get to 100 followers on speakers that we can petition I heart radio to carry the radio show. We know that congenital heart defects touch people all over the globe. But remember, my friends, you are not alone.
you again for joining us this week. We hope you've been inspired and empowered to become an advocate for the congenital heart defect community. Heart to Heart With Anna with your host Anna Gorsky can be heard every Tuesday at 12 noon Eastern time. We'll talk again next week.