Turning the Tables: David Simpson Interviews Anna and Frank Jaworski

After 250 episodes and 6 years of broadcasting, Guest Host David Simpson turns the tables on Host Anna Jaworski and becomes the interviewer. David Simpson is a former Guest on "Heart to Heart with Anna" and he and his wife Helen had a chance to meet up with Anna in person when Frank and Anna were visiting Scotland and England. Tune in to hear these old friends reminisce about the early days of being heart parents, going through open-heart surgeries with their children, and then becoming advocates in the congenital heart defect community.

In this episode, you'll discover why Anna does what she does and what she has planned for the future. You'll also hear from her husband Frank as he shares with David what it's like to be a medical professional with a son with a complex congenital heart defect.

Transcript

Anna: 0:00

I feel like this is part of God's plan for me to reach out and help other people and I do feel so blessed that my son has made it as far as he has.

Opening Music: 0:20

[inaudible]

David: 0:20

Welcome to Heart to Heart with Anna. Today's episode is called"Turning the Tables." As you can immediately tell, this episode of Heart to Heart with Anna is a little different. Anna is here, but after six years and 250 episodes, I felt it was time that she became the subject rather than the interviewer. In today's episode, we'll also hear from Frank, Anna's husband, as he and I share being a heart dad and health professional in common. My name is David Simpson and along with my wife Helen, we recently met up with Anna and Frank, although we've had a much longer connection than that. Today I'm the Guest Host for Heart to Heart with Anna. I worked with Anna on a story for her book, The Heart of a Father and was a guest back in the early days of Heart to Heart with Anna. There's another longer connection in that in 1994 Anna's son Alex was born with the same heart condition as my son Alistair in the year 2000 it's hard to put into words the importance of the hope that the older children can give the parents of the children that follow. I hope in this session we can talk a little about Anna's own experience with Alex and also her experience of supporting the heart world over the years. I say hope because I've seen how much Anna's hard work and experience goes towards drawing out the best in her guests. My wife was one of her recent guests. Anyway, here goes my best efforts. Let's get on with the show with Anna and we'll hear from Frank in the third segment, so welcome to Heart to Heart with Anna to Anna.

Anna: 2:07

Thank you David. It's a joy to be here and to be interviewed by you. I can't wait to see what happens today.

David: 2:16

Yes, yeah, it, no, it should be interesting. I mentioned in the introduction how important it was to Helen and I to have the stories of the older kids when we were going through our time with Alisdair. But I guess you and Frank didn't have that with Alex when he was born. Can you tell us a bit about what your first days with Alex were like?

Anna: 2:39

I'm glad that you asked me that because I was really, really blessed when Alex's heart defect was identified and we were sent to San Antonio. There was another family in the hospital there who had a two-year-old son also with hypoplastic left heart syndrome. And while Alex was getting the very first procedure of the Norwood and Fontan procedures, this little boy was getting his Fontan. So I understand completely how important it was for you and Helen to have stories about older children because for me, Joshua was my hope. Seeing Joshua- because he was operated on by the same surgeon who was going to operate on my son- and so just seeing that he had already survived two surgeries, he was adorable. He had all these Sesame Street stuffed animals in his room. And I mean, he was acting just like a normal two year old. So it provided me with a lot of hope for my son.

David: 3:40

Yeah, it's amazing how much more you get out of actually seeing the child that you're hoping your baby's going to grow into. It's just so much more physical than just the statistics that the doctors give you.

Anna: 3:55

Absolutely. And Joshua's, mother was awesome. When she found out that we had a son with the same heart defect that her son had, she came over and introduced herself to me and she said, you know, I'd really like for you to see what Joshua looks like so you're not too shocked when Alex comes out of surgery. And so she took Frank and my mother and my father and me into the room and she introduced us to Joshua and he had a big bandage down the center of his chest and it was brown because way back 25 years ago, they covered it in iodine.

David: 4:34

Oh wow. Yeah.

Anna: 4:35

So it looked kind of scary, you know? So I really appreciated her showing me that, but it wasn't just that. She also talked to us about some of the machines that he would be connected to. And she told us that he might be swollen and just really prepared us in a way that I don't think a textbook or even a video could have prepared us.

David: 4:56

Yeah,

Anna: 4:57

Even though he was not looking fabulous from all the stuff that he had on him, he had the sweetest smile on his face. And I remember he had a Big Bird stuffed animal that he was just holding onto and he was just a happy two-year-old little boy.

David: 5:14

Yeah. Yes. I know. We're going a bit off-script, but when you were with us last weekend, we managed to meet up. Helen and I managed to meet Frank and Anna last weekend and we also met up with another local family whose child was just born last year. And yeah, it's really nice to sort of now be in the position where our kids are the ones that are giving the next generation the hope. It feels so lucky to be in that position. Yeah.

Anna: 5:47

I feel like this is part of God's plan for me to reach out and help other people and I do feel so blessed that my son has made it as far he has.

David: 5:58

Yeah. Well that brings me onto my next question. How is Alex now?

Anna: 6:02

Well he's 25 years old. He works full time as a pharmacy tech and often puts in 10,000-15,000 steps a day and then comes home and does other things. Whereas when I do 10,000-15,000 steps, I just want to nap and I have, I have a whole heart. I don't have a heart like he does. So it is pretty amazing and I think that that is a testimony to what the doctors are now saying as opposed to what they used to say. The doctors used to tell the parents not to overtax the children and they worried about the kids doing too much exercise. Well now they're saying,"No, no, let the kids exercise! They'll self-limit" and we now see the importance of exercise and I think Alex is a perfect testimony to that because he is really pushing his heart on a daily basis. And he's doing really well. So I think that there's definite evidence to prove that these kids who, well kids, adults, he's 25- he's an adult now. These people who really push themselves and eat healthy and exercise regularly, they're going to be able to live a more normal life.

David: 7:16

Yes. I'm really lucky because yeah, Alisdair has a very similar story. Yeah. He's at a local university and walks to the bus stop and walks around and yeah. Yeah. He's a sort of starting to enjoy his independent life, which um, yeah, yeah, we would have paid anything to be able to guarantee that we would be where we are now. It's great.

Anna: 7:39

Yes, absolutely. I was so happy that he took the time to come over when we were visiting with you and Helen because I still envision him as a little boy and it was awesome to see him as an adult and you've done a great job with him and he's a fabulous young man.

David: 7:57

Yes. And the other thing both Alex and Alisdair have in common is they don't really like being described as heart warriors. They probably wouldn't be too chuffed to see- that's an English word. Probably not be too pleased if they knew we were talking about them on the radio, but there you go.

Anna: 8:13

Well, my son's kind of used to it, so he just, you know, most of his friends are not listening to the program, so I don't think it's too much of a problem for him. As long as I don't tell any embarrassing stories, I think I'm okay.

David: 8:31

I think he's fairly safe.

Anna: 8:32

Right!

H2HwMichael: 8:34

"Texas Heart Institute were offering us a mechanical heart and he said,"No, Dad, I've had enough. Give it to someone who's worthy."""My father promised me a golden dress to twirl in. He held my hand and asked me where I wanted to go.""Whatever strife or conflict that we experienced in our long career together was always healed by humor." Heart to Heart with Michael... please join us every Thursday at noon Eastern as we talk with people from around the world who have experienced those most difficult moments.

Music: 9:09

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HomeTonight4Eve: 9:10

Home. Tonight. Forever by the Baby Blue Sound Collective, I think what I love so much about this CD is that some of the songs were inspired by the patients. Many listeners will understand many of the different songs and what they've been inspired by. Our new album will be available on iTunes, Amazon.com, Spotify. I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects. Enjoy the music. Home. Tonight. Forever.

Music: 9:43

[inaudible]

Rejoiner: 9:47

You are listening to Heart to Heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Jaworski at Anna@HearttoHeartwithAnna.com. That's Anna@HearttoHeartwithAnna.com. Now back to Heart to Heart with Anna.

David: 10:07

So Anna. Yeah, we were talking a bit about the early days with Alex and fairly early on you decided you were going to write a book about hypoplastic left heart. Had you written before?

Anna: 10:21

That's a great question. It was my dream since I was a little girl to be a writer, but I always thought that I would be the next Laura Ingalls Wilder or Louisa May Alcott- they wrote my favorite children's books growing up. And so after I had Joseph, my first son, I started writing stories and submitting them to different magazines and nobody wanted to publish anything that I had written. I got some very encouraging notes, but nobody had accepted anything. And then Alex had to have his first surgery. It was an emergency procedure for us. We did not find out in utero. And it was the first time, David, that I really had a better understanding of what my husband did. My husband was a nurse and he used to be a nurse in the ICU and all of a sudden I was in the ICU with my baby.

David: 11:15

Yeah.

Anna: 11:16

So when I came home, I wrote a letter to the editor of the nursing journal that my husband subscribed to. And even though I'm not a nurse, I'm a naturally curious person. So Frank would leave his nursing journals lying around and I would pick them up. And I would read articles every now and then even though I clearly didn't understand them to the same degree Frank did, but I felt that I had learned some valuable lessons being in the ICU, so I wrote a letter to the editor and kind of forgot about it and nine months later we're back in the hospital with my son having his next surgery. Unbeknownst to me, the editor of the magazine is desperately trying to get in touch with me. This was in the days before cell phones?

David: 12:02

Yes, 1994 so yeah. You know, we had the internet and we had email, but

Anna: 12:10

1994 I didn't have the internet and I didn't have email. I didn't have that until my son was two, so this really was the dark ages when I came back from the hospital my old answering machine was completely full of messages from this editor, they called every single day leaving messages for me, please contact them, please contact them. They didn't want to publish my letter as a letter to the editor. They wanted to feature it. I was so excited. And so I called them as soon as I got back and I said, I'm so sorry. We were in a hospital three hours away. And so of course we weren't going home and checking our answering machine. And so I ended up working with that editor. And in the process of working on that letter and turning it into an article, my husband said,"Anna, you really should be paid for this. You're putting an awful lot of time and effort into this. You need to ask them how much money they're going to pay you." And I said,"No, no, I'm so honored that they want to publish my piece." And he said,"Anna, if you want to be a writer, you should get paid for it." And so finally, at my husband's behest, I got the courage after like the third or fourth revision to say,'So how much are you going to be paying me for writing this?' And they did end up writing me a check. I don't even remember how much it was for. It wasn't much, but it was something, it was my very first time to be paid as a professional. Right.

David: 13:47

It does make a big difference.

Anna: 13:49

Right. And so it was awesome that they paid me. So that was the first time I was paid as a writer. But while Alex was in the hospital, I was actually working on my book, Hypoplastic Left Heart Syndrome: A Handbook for Parents. And those poor nurses who worked with my son when they weren't actively working on doing something for him. I was asking them a million questions because I wanted the handbook to be as helpful as I could make it. And so I ended up asking the nurses and doctors, anybody who walked an Alex's room was fair game for me to ask questions to.

David: 14:26

Yes, I remember the book from when we were on the ward. Yeah. I remember being given that and told this is very helpful. Fortunately some of the probabilities of things going well or have improved since that book was written. So we, yeah, we were given the book as hope and there was a little bit more hope on top. It was really good. So that was the first book of how many now? You've written heart of a well edited Heart of a Mother and Heart of a Father and have there been other books, are there are other books planned?

Anna: 14:59

Yes. The other book that I have written and published already is My Brother Needs an Operation and that's the book that I was looking for for Joey because he was three and all of a sudden he had this baby brother who had two open-heart surgeries in his first year of life. So while it was rough for Alex, Alex didn't know any different but Joey did. So My Brother Needs an Operation is my first children's book. I'm actually working on three other children's books right now, so I'm hoping 2020 will be a big year for me and I'll get at least one of the children's books published. We shall see. I'm also working on another book in the Heart-of-a series. So we already have The Heart of a Mother, which Helen and you have seen and then you participated in The Heart of a Father and I'm hoping Alisdair will participate in The Heart of a Heart Warrior. So that's another book that I hope to publish in 2020

David: 15:55

yes. Well I'll see if I can persuade him.

Anna: 16:00

Well, I had a very lovely conversation with him and he actually seemed interested so hopefully, you won't have to, you know, twist his arm too much.

David: 16:09

Yeah, no. Well he's finished his course for the term, so maybe now is the time to ask him again. So as well as the books obviously there's the Heart to Heart with Anna podcast and we're up to 250 episodes. It's amazing. I was wondering if there was anything that stands out as the most surprising thing a guest has said.

Anna: 16:34

Oh wow. The most surprising thing, I guess to said. No, I don't think anything stands out as particularly surprising that anyone said a particular thing. I think the most surprising thing to me is that I'm still doing it. I didn't really know how long this would go on and that there's so many fascinating stories out there. I mean, even though I have 250 episodes that I've done, there are no two episodes that are exactly alike and I have episodes planned for 2020 and all of them are so different. I think really what stands out to me as surprising, David, is all of the support that I've gotten from the medical community and from the heart community. I mean I'm so humbled and touched by all of the doctors who have come on my program and everybody, the parents, the heart warriors, and I know people like Alex don't like to be called a heart warrior, but it's the shorthand label that makes it easy to know who you're talking about. So the people born with congenital heart defects and even some of people like David Franco's mother. I feel like an old timer because my kid is 25 but David is 50 and to have his mother come on the program and what she had to go through was so different from what I had to go through. And yet so similar. And I think that to me has been so surprising is how similar all of our stories are. No matter what decade the heart warrior was born, no matter where they were born. I mean you're in the United Kingdom, obviously I'm in the United States, but I've talked to people all over the world and our stories are so similar, David. I think that's what brings us so close together, don't you think?

David: 18:32

Well, yeah. It sort of feels like a second family that you didn't realize you had but yeah, bit of a dysfunctional family at some point and maybe, yeah, maybe you're part of a community that you wouldn't have chosen, but it's a real community. There are things that you can see and know that will be understood, that are difficult to say to people that maybe aren't part of the community. So I was wondering if you ever find it tiring from an emotional point of view.

Anna: 19:04

That's a very insightful question. Do I find it tiring? I don't know if I would use the word tiring. I have cried while I've been interviewing people. People tell me stories from their heart and I feel the tears leaking out of my eyes. I often will have to mute my mic cause I don't want anyone to hear me crying as I'm supposed to be professional in doing the show, but I can't help but cry some of the time. But I think that sharing tears with my guests just makes our bond a little bit closer. I don't really see anything wrong with crying with my guests. So do I find it emotional? Yes. I don't cry every show. What's been really delightful to me is that I think I laugh with every single show and sometimes I find it annoying because I think,'Really, Anna, laughing again?' But I think that that just shows how much I delight in what I'm doing.

Jamie Alcroft: 20:08

Hi, my name is Jamie Alcroft and I just published my new book, The Tin Man Diaries. It's an amazing story of my sudden change of heart as I went through a heart and liver transplant. I can think of no better way to read The Tin Man Diaries than to cuddle up in your favorite Hearts, Unite the Globe sweatshirt and your favorite hot beverage of course in your Hearts Unite the Globe mug, both of which are available at the HUG Podcast Network online store or visit heartsunitetheglobe.org.

HUG Message: 20:42

Heart to Heart with Anna is a presentation of Hearts Unite the Globe and is part of the HUG Podcast Network. Hearts Unite the Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to uplift, empower, and enrich the lives of our community members. If you would like access to free resources pretaining to the CHD community, please visit our website at wwwcongenitalheartdefects.com for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors, and much, much more.

David: 21:17

So I was hoping to bring Frank in at this point in the conversation. Hi Frank.

Frank: 21:22

Hi David.

David: 21:23

How's Edinburgh? When we met last you were planning to go round to the Christmas markets and things in Edinburgh. How have you found being in Scotland?

Frank: 21:32

Oh, Scotland is beautiful country and people are been very, very kind to us and very nice. And it's very cold and rainy.

David: 21:43

Uh, yes. Well, yeah, I'd have to agree. As a proud Scot now living in England, the weather down here is better, but I don't think you can beat the people in Scotland.

Frank: 21:51

I think you're right.

David: 21:51

I wanted to talk about your background as a health professional. When I was talking to Anna, she mentioned that you were a nurse. Can you tell me a bit about what your job involves?

Frank: 22:02

Of course. When Alex was born, I was working as an emergency nurse and I worked throughout his first few years as an emergency nurse and an intensive care nurse. But since the year 2000 I've been a nurse anesthetist, which means that I have a bachelor's degree in nursing and masters in anesthesia and I administer anesthesia for surgical procedures at the hospital. So I have a lot of experience in the areas that relate to Alex's care, including emergency department which he has fortunately not had to go to as a heart patient, but the ICU and surgical theater, both. So,

David: 22:35

And am I right in thinking that you used some of your own master's work with your son?

Frank: 22:43

Yes, to a certain degree. One of the things that people forget about when you have a child with a heart defect is they're going to have medical problems that are not heart problems and they have to be dealt with. So when I was in graduate school, I wrote a research paper about doing anesthesia for children who've had the Fontan surgery for non-cardiac procedures. It's a special kind of consideration because of the implications of their heart problems. And so Alex required a surgical procedure for some teeth that had been damaged and had to be taken out surgically and that was right at the end of my training program. And so I was able to give my research to the anesthetist who was taking care of him to help her to better guide what she was doing. And also I was there to help him go to sleep for the surgery, to help induce him in his anesthetic. And because I was his father, he trusted me. And because I had to experience, I did. It went very smoothly.

David: 23:34

Yeah. I think... Just to tell the listeners, I'm also a medical professional. I'm a clinical scientist, but my job has never really been directly related to my son's condition. Did it feel strange that you were playing two roles at once, the professional and the father in the same occasion, or did it just feel very natural?

Frank: 23:58

Well, it felt very natural being his father and I was glad that I could be with him when he went back to surgery and when he was put to sleep. And the reason for that is that I've seen a lot of times that parents who are with their children right before they go into the OR for anesthesia and surgery, their mood and their composure directly affects how the child feels. Parents who are nervous and skittish make their children nervous and skittish, and parents who are calm help calm their children. And so the fact that I could go back with him with confidence and calmly and help him sleep was very good. The hard part was that as a professional doing anesthesia, I'm accustomed to putting the patient to sleep and staying there throughout the case and managing every aspect of the case. I had him go to sleep and then I left the room, left my patient behind. That was a little difficult.

David: 24:46

Yes, but yeah, it's probably harder if you'd stayed. I think a difficult choice to make.

Frank: 24:53

I don't know because I don't get skiddish about surgery, but you're right because seeing your own child is a different thing. I had that experience when Alex was in the ICU after his surgery, his first year and second surgeries, because I had had experience in the ICU with adult patients having open-heart surgery. I had seen the chest wounds with the dressings. I had seen all of the drain tubes and the ventilators and that sort of thing, but although I thought I'd be prepared for it with Alex when he was in the ICU, when it's your own family member, when it's your own baby, it's very different.

David: 25:22

Yes, I remember myself not being familiar with pediatric intensive care, but as a professional finding it very interesting and being fascinated by the drugs and the numbers and what all the pressures meant and then it coming as a bit of a shock to come back to realize it was actually about your baby and yes. Yeah. Difficult to put into words, but yeah. So did you find it easy to sort of become part of Alex's medical team for his care? Did you feel you were sort of accepted by the rest of the professionals as a part of the team or do you feel there's sort of like a a barrier to be crossed to go and have your point of view taken into consideration?

Frank: 26:14

I wouldn't say that it was all one or the other. There were some individuals who did not like me being a nurse and understanding what was going on and asking questions that were very pointed and they felt uncomfortable with that. But it was my general experience that the more training experience, whatever the individuals had, the more they were comfortable accepting me. The charge nurse on the shift that I was with Alex, she was very relaxed about it and encouraged me to look at his chart, read his lab work, ask any questions I wanted to. And Alex's surgeon was wonderful about talking to me in the mornings because he knew that when he came on rounds with his medical students and residents and fellows following him around, that I would have already seen the lab work and already looked at the chest x-ray. So he would invite me up to talk with them and ask questions and whatever else and asked my impressions too on the night had been. And that was very gratifying because I was not an average parent and I had more understanding o f what was going on. I wasn't anyway involved in decisions made for his care. But it was good to know that I was involved in understanding what was going on and I learned a lot, too.

David: 27:19

Yeah. Um, so I was wondering, do you have any sort of hints or tips or advice for parents that maybe don't have a healthcare background? How would you say it was best to get involved with the medical side of the care? How's it best to play your part is um, part of the team for your child?

Frank: 27:40

That's a good question. I think it's very relevant because I think that feeling like you're involved makes you more comfortable being in the ICU. You don't feel separated from the process. What I would say is feel free to ask questions and understand that the professionals are at a point in their day or their shift where they're very busy and focused on things they have to take care of. They may not have time to answer your questions, but when you feel that they have a moment, ask them politely say,"Would you mind explaining this or why you did that or what this drug is for?" That's a reasonable question and I think that a competent professional would feel comfortable giving an explanation at the level you can understand it. If it's a complicated question, they should be able to give you a simple answer that makes sense. That tells you basically what they're doing and if for any reason they can't give you an answer, they can usually give you a reference where to look to find things out. Especially now with internet access being so good.

David: 28:34

That's interesting. Yes. If you feel that you're being excluded from the team, it may actually be because of a lack of confidence in the junior members wanting to make sure that they've earned their place in the team. Would you say that made sense?

Frank: 28:49

To a certain degree and also I think if you have, for instance, when Alex was in the ICU, I was an experienced ICU nurse and an experienced ER nurse, and so there were probably some things that I may have understood better than the nurses there that were the junior nurses and that's why I felt that the more experienced nurses were confident sharing and discussing things and the more junior ones perhaps not. I don't feel that I was never trying to be authoritative in any way, but I think I did know some things that some of them didn't and so perhaps that was part of the problem. But I think that no matter what your level of experience or background, I think being humble and asking polite questions, they should always be open to that. They should always be open to that.

David: 29:30

Yes. I think that's very important advice and I've heard that from other people. While it's not your decision that it is still your child and you're right to actually understand what's happening at any point.

Frank: 29:45

Yes.

David: 29:46

Yes. Okay. Well, I think this brings are Turning the Tables episode to a close. I hope you've enjoyed the experience and yeah, I hope you continue to enjoy Edinburgh and hopefully the weather's a bit more pleasant.

Frank: 30:01

Well, thank you David. I appreciate it. We've had a great trip so far. I met some wonderful people.

David: 30:06

Yes. I'm really looking forward to the next time we meet. Yeah, hope it's soon.

Anna: 30:11

It was so much fun talking to you today, David. Thanks for turning the tables on us. I was surprised when you suggested doing a show, but I'm so glad we did.

David: 30:21

Thank you. Yes, I hope I've managed to do you justice after all the work you've put in, in interviewing other people. Hopefully your listeners understand a little bit more of where you're coming from.

Anna: 30:32

Well, thanks David. I do appreciate you doing that and I'm going to let you read the conclusion, David.

David: 30:38

Oh, that concludes this episode of Heart to Heart with Anna. Thanks for listening today. Please consider becoming a patron of our program by visiting www.patreon.com/hearttoheart and remember my friends, you are not alone.

Conclusion: 30:57

Thank you again for joining us this week. We hope you have been inspired and empowered to become an advocate for the congenital heart defect community. Heart to Heart with Anna, with your Host, Anna Jaworski, can be heard every Tuesday at 12 noon Eastern Time.

Speaker 6: 31:20

[inaudible].