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Boots Knighton: [00:00:00] Hello and welcome to another episode of The Heart Chamber, I am your host, boots Knighton. Episode 14 is already here, and I can hardly believe it. Thank you for coming along with me on this heart journey and today is an incredible episode, and I feel like I say that every week because every heart warrior story is truly incredible.
Today I interview a heart mom. Anna Ky, she's an author, a publisher, and a podcaster. She is married to Frank Jaworski and Mom to Joey, who is Heart Healthy and hope a single ventricle survivor. Anna is currently the host of several different podcasts, including Heart to Heart with Anna. The C H C podcast as well as the executive producer of Bereaved, but still me, as well as a [00:01:00] Spanish podcast for the Heart Warrior community. She is also the executive director of Hearts Unite the Globe, or Hug for Short, which is devoted to providing free resources to the congenital heart community.
Anna had me on her podcast, heart to Heart with Anna, and it was such a fun podcast that we decided to have her on. The heart chamber as well, and I wanted her to share her story from the caregiver perspective, particularly as a parent of giving birth to a baby, knowing that something just wasn't quite right.
And she really takes us through the journey of advocating for. At the time, Alex Baby Alex, who then eventually did transition to Hope, which she will talk a little bit more about that in the episode. But baby Alex's story is really, truly one that is a miracle [00:02:00] unfolding and. I at times I forgot to breathe listening to it all.
So buckle your seatbelts and get ready, and don't worry, Alex, who's now hope is thriving. It's a beautiful story, but a necessary one. So let's get to it.
I'm so excited to have you on today because there's like so much I wanna cover. obviously you're a heart mom and I, I would love some education around, you know, why you're a heart mom, like, go into all of that.
But then also, Dovetail from that to like then what has led you to the really important work you're doing now? And I want this to also be a platform to raise awareness around the Hug Network and Heart to Heart with Anna and all the other podcasts. And the, basically, I like to think of as a book incubator that you have going, for people to tell their important stories, their heart stories.
So you're just, you're elevate, I kind of have chills thinking about like all the ways that [00:03:00] you are elevating, heart warriors and their stories and their families and caregivers and healthcare workers and you know, that's how we heal and that's how we move the conversation forward on healing well and thriving after such a difficult diagnosis.
So,
Anna Marie Jaworski: Well, thank you so much, boots. It's such an honor to be on your podcast. I'm super excited about it. It was so much fun for me to have you on my podcast and so now it's exciting for me to be on the other end of the microphone
Boots Knighton: Yes. And I'll put a link in, uh, the show notes to find you and, and that podcast episode cuz we had a good time.
Anna Marie Jaworski: oh yeah it was it was great and so unusual I've never met anybody else before that I know of with myocardial bridging but now I'm wondering Maybe I have met somebody else before with it and they don't know and I didn't know And I have a feeling it's much more common than people realize But to speak to my [00:04:00] entree into the world of congenital heart defects my child was born in 1994 with a congenital heart defect and it was originally diagnosed with hypoplastic left heart syndrome with which is a huge mouthful And for anybody who's listening who is older like I am they may remember Baby Faye This was a very famous baby from California who was also born with hypoplastic left heart syndrome But she was born in the 1980s and at that time she was also born in well she was born in California not too far from where Dr Leonard Bailey was doing some amazing Research and part of the research he was doing was what's called xeno transplantation So Baby Faye became known when she received a baboon heart transplant It was What they learned from [00:05:00] that experience they learned about the importance of cross-matching tissue type and blood type They didn't know that prior to this As far as I know I'm just a heart mom friend so could be wrong about some of this but from what I remember reading the experience they had with Baby Faye has led to an understanding of
transplantation
overall and has led to more successful transplants of human heart to human heart They don't do xeno transplantation so much anymore although we do frequently have pig valves or Other kinds of valves that are implanted into humans and they're accepted readily readily But when the doctor told me that my child had hypoplastic left heart syndrome I didn't think I had ever heard of it before until he told me that baby Faye was born with the same condition Unfortunately my baby was in congestive heart failure and was not eligible for [00:06:00] a transplant because at that time he was too sick they only gave my baby a 5% chance to survive the first surgery So they suggested that we take him home to love him for what little time he had left that was not an option for me I couldn't Fathom just giving up on my baby and I was willing to do anything So they suggested well I say I my husband and I I have a husband who is completely supportive and was fabulous throughout the entire ordeal so I don't wanna exclude him from this but did recommend an experimental at that time it was called an experimental procedure that they called the Norwood procedure And they said the problem with that was that even if my baby survived that that only one in four babies who survived the Norwood at that time in the nineties lived to [00:07:00] age five So
while we were waiting for my two month old baby to come out of surgery my family and I were planning a five-year-old birthday party
Boots Knighton: Let's go back to the Norwood procedure. can you explain a little bit more about what that was and is it still a, a procedure used today? Do you know
Anna Marie Jaworski: is a procedure that used today Dr William Norwood is the gentleman who created that and he was at He either originated in Boston and then moved to Philly to Chop Children's Hospital or he started at CHOP and then moved to Boston I can't remember He went he worked at both of those hospitals N not too far apart in time I don't believe he was not the only person working on a solution for children with hypoplastic left heart syndrome but he was the first one to make major inroads and to have success that was reported in the journals once he popularized his [00:08:00] procedure then Other doctors started doing it as well Unfortunately he was considered a maverick felt that what he was doing was unethical because they didn't know? these kids would survive And of course it's painful to have open heart surgery
Boots Knighton: Mm-hmm.
Anna Marie Jaworski: this open heart surgery they place a shunt a Blalock Taik Thomas Shun or Blaylock Thomas Tosic shunt B T T shunt in the baby to allow more blood flow Now my baby had flowing in different parts of the heart because my baby had a lot of holes in the heart uh my baby had what's called A P F O which is a Peyton Foramen oal a pda which is a Peyton ductus arteriosis a humongous
V
S D which is a ventricular septal defect and an As s D which is an atrial septal defect So my baby's heart was kind of like a Swiss cheese [00:09:00] heart
Boots Knighton: I was just thinking that analogy. Wow. Wow.
Anna Marie Jaworski: Yeah Yeah Well my baby also had what's called transposition of the great vessels And so that's where the two major vessels are switched And normally your left ventricle is your big ventricle and that's the ventricle that pumps the blood to the entire body And right ventricle is a little bit smaller and it looks different because the right ventricle only has to pump blood to the lungs And your lungs are so close to your heart it doesn't have to work as hard The valves between don't ha carry as heavy a load The aorta carries a really heavy load cuz it has to pump blood throughout the entire body Well my child's left ventricle pretty much didn't exist They said it was at the embryonic stage
Boots Knighton: Wow.
Anna Marie Jaworski: a scary thing to hear
Boots Knighton: Oh
Anna Marie Jaworski: you know that that's a ventricle that's responsible for puppy blood to the entire body But because my baby had [00:10:00] transposition the bigger ventricle was actually doing the work that the left ventricle should have been doing And that's how my baby was able to stay alive for two months without being diagnosed for two months my husband and I had kept saying something was wrong and for every complaint we had they had an excuse why everything was fine and and basically treated us like we were overprotective parents So when my husband was concerned the second Alexander was born that he had rapid breathing They said oh no no no that's just newborn breathing It's okay But that went on for eight weeks and after a couple weeks my husband said he's not a newborn anymore This don't think he should be breathing that hard By the time my baby's condition was diagnosed when he would breathe he would breathe so deeply boots that you could see a cleft in his chest That's how hard he was breathing and fast
and never was [00:11:00] blue because of all the mixing of the blood but he was yellow he had jaundice So I kept taking the baby back and forth to newborn follow up but even though he was jaundice he was never yellow enough for the Billy lights Had he been yellow enough for the Billy lights they would've put him under the lights They would've seen that he wasn't peeking up because his body was working hard just to stay alive then we would've known but he was never that yellow And so when I was expressing concern about him being yellow they said ah it's just breast milk jaundice So they didn't worry about that when I was worried because he didn't wake up crying To eat or with a wet diaper They said oh he was born three weeks early He still thinks he's inside of you When I complained to the lactation consultants that he wasn't nursing that he would fall asleep after just a few minutes they said the same thing Oh he's just a lamb He thinks he's still inside of you [00:12:00] And so every single time I voiced a concern or my husband voiced a concern they just treated us like we didn't know what we were talking about even though I had a three-year-old son at the time So it's not like this was my first baby I had been through this before and when I objected that way they said Oh.
every child is different Don't compare him to your other son So I did not feel very validated And the worst part was that I was seeing doctors at the same hospital where my husband was a I didn't think I could go to any other hospital and be treated any differently Now I know better now I would go to another hospital in a heartbeat but I thought where would we receive better care than the place where my husband is working
Boots Knighton: I am just struck by that and through all my conversations I've had with fellow heart warriors and heart uh caregivers, I hear stories similar to this more times than should be allowed and, and
Anna Marie Jaworski: I know right
Boots Knighton: [00:13:00] the amount of gaslighting that happens in the medical industry and at times it feels like an industry, is, is really hard and.
I would like to think that people just wanna assume the best of their patients and like they genuinely wanted to assume your baby was just a lamb, but it's like there comes a time where you really have to listen to the patient, to the patients because the patient knows best. Okay. I'm like enraged.
Anna Marie Jaworski: had been so and we we considered the hospital just because to bring that much awareness to the hospital to let them know because there were so many opportunities I don't even know how many lactation consultants I saw I know I saw at least three or four the different nurses I saw in newborn follow up I wanted to educate them so they wouldn't make this [00:14:00] mistake again And what was really heartbreaking was that we had Alexander in August and I wanna say it was in September that one of Frank's coworkers gave birth to a baby and that baby died And they said the baby died of Shortly after the baby was born just a couple of weeks maybe a month and I said to Frank oh my gosh do you think that baby a heart defect that was not diagnosed do you think we're doing a disservice to the people who are going to this hospital by not coming forward And you know shaking the the people that work at the hospital kind of shaking them up a little bit and saying look now that I've written a book over a year later I decided to write a book about hypoplastic left heart syndrome I called it Hypoplastic Left Heart Syndrome A Handbook for Parents And the reason I did it was because I was so afraid that I would miss [00:15:00] some kind of red flag I was so afraid that there would be something that was obvious I've missed and I I would be the cause of my child's death And that's why I wrote the book When I finished the book I gave it to my dad to read and he said Anna it's not done yet And I said what do you mean And he said you have to tell Alex's story It won't be complete until you tell Alex's story And I said but dad everybody's is different Mine hopefully is not gonna be repeated by anybody else So you say it doesn't matter People aren't going to care how much you know you know about all these different things that you've said until they know that you've walked in their shoes So I did I had to go to San Antonio every three months for a while and then it was every six months for Alexander to be checked And so we were at my parents' house I lived three hours away from there boys and I were at my dad's house and I had brought [00:16:00] my laptop and in one night I just
cried
out Alex's story I just was sobbing thank goodness I could touch type sobbing As I recalled all the different details that involved us going through the diagnosis and going through the first surgery and the second surgery and where we were then I mean at least I had a happy ending We're so lucky that we had a happy ending and I typed everything up used my dad's printer printed it up put it on his recliner because I knew when he got up in the morning that was the first thing he did was grab a cup of coffee and sit in his recliner and I had stayed up all night working on that So I was sleeping in and when I woke up the next morning there was a little post-it note I really wish I had saved it There was a little post-it note on the paper that said now your book is done
Boots Knighton: Aw,
Anna Marie Jaworski: It was so rewarding for my dad to do that for me So [00:17:00] I know after having put this book together my kid had all the classic symptoms of left-sided heart failure
Boots Knighton: and let's, let's review those again for our listeners. Okay. So,
Anna Marie Jaworski: the rapid breathing
Boots Knighton: Mm-hmm.
Anna Marie Jaworski: is called teia the rapid heartbeat which is tachycardia See because he was a newborn they just check chalked that up to being a baby And babies do have faster heart rates than adults do The jaundice the lethargy not feeding well not gaining weight all of those were classic symptoms Now one of the symptoms I did not know it wasn't really pertinent to my baby because my baby was only two months old and this doesn't usually show up much longer than that is what's called clubbing of the fingers and toes My baby wasn't really old enough to show that but you can see where when there's not enough [00:18:00] getting to the tips of the fingers and toes they look different And my baby wasn't old enough to have had that much damage yet so didn't really have clubbing of the fingers and toes like you might see if you were to Google that And he wasn't really cyanotic because he had so many holes in his heart Most babies who have hypoplastic left heart syndrome also have valve problems and I was really lucky that my son did not So he wasn't a classic case of Hhl Hs I would be willing to wager that most babies with H LHS don't have transposition of the great vessels And that's really what helped him to survive So now they don't call him an hhl h s survivor they call him a single ventricle survivor
Boots Knighton: okay.
Anna Marie Jaworski: we don't say him we say her
Boots Knighton: Mm-hmm.
Anna Marie Jaworski: little over a year ago Alexander transition is a little over a year ago Alexander told me that he [00:19:00] identifies as a woman now and he's going through that transition process But it's hard for me to look back then and call baby hope because the baby was Alex And all the writing I did and the books I published and everything say Alexander it's a little disconcerting
Boots Knighton: Mm-hmm.
Anna Marie Jaworski: if you hear me say Hope or Alex it's the same person I only have one child with a heart to fat
Boots Knighton: Got it.
Anna Marie Jaworski: My older son does not have any heart problems
Boots Knighton: Mm-hmm. . And that's probably a whole separate podcast of, of having a child transition. Yeah. Um,
Anna Marie Jaworski: actually had hope come on my show and we talked about that
Boots Knighton: oh, great.
Anna Marie Jaworski: it was really interesting and I'm super excited Boots you're the first one for me to say this too Publicly Ho Hope and I are going to write a book together
Boots Knighton: tell me more.
Anna Marie Jaworski: am super excited about this We just and today's Wednesday so just two days ago we had a working lunch together and we mapped out we completely outlined a book so I'm super [00:20:00] excited and we came up with a tentative title
So
yeah we're making progress on that and our hope is to release it next year during Pride Month
Boots Knighton: Oh, that's beautiful. Wow. And I, you know, I'm hearing so much heartache and fear of losing. Alex so young and that the rage of, of the, at the medical community that you had built so much trust in. And then to hear that hope now hope has, come into her twenties, right? And is living is, is thriving and doing well.
Like that's amazing. But I, I wanna go back and walk through that journey a little bit more if you're willing,
Anna Marie Jaworski: Sure
Boots Knighton: for the parents who may be in this process at the moment. So you mentioned that Alex had a couple of different surgeries. I think it's even more than two, based on past [00:21:00] conversations we've had.
Can you walk us through like the timeline?
Anna Marie Jaworski: Sure So at two months old heart defect was diagnosed and he had a modified Norwood procedure he had a shunt a Blalock Tosic Thomas shunt that was put into his heart at this time they will also do some other things that weren't necessary because Alex already had a huge ventricular septal defect and he also had an atrial septal defect Some in most cases of children who have hhl h s they don't have and so the doctors will go in and add that opening They didn't have to add any openings Alex have plenty of those and his thankfully of his valves were good A lot of times babies who have hhl h s do not have good valves but the major that they do with that Norwood is they make what's called a neo aorta don't really wanna go into more depth than that [00:22:00] but what I'd like to do instead is talk about the second surgery So we knew when we opted for this experimental procedure that more than likely our child would need three open heart surgeries and they would be but not as far as like at this time you'll need this and at that time you'll need that It wasn't like there was a certain period of time that needed to pass What we had to do was gauge
how Alexander was doing as he was growing and as he was becoming more cyanotic So after the first surgery his saturation levels were in the eighties For a lot of people that would be a huge red flag that there's something wrong to just be saturating having an oxygen saturation in the eighties for him it was normal and because of the way they were his heart that was okay His body was naturally producing [00:23:00] more red blood cells he had to take aspirin because he was at risk for having a stroke with having extra red blood cells in his
Boots Knighton: his body was adapting.
Anna Marie Jaworski: his body was
Boots Knighton: Yeah.
Anna Marie Jaworski: But we knew that as he got older he would become more and more cyanotic And the the so there was a critical time when his saturations got to a certain level then we knew it was time for the next surgery And that time came pretty quickly and the doctors had told me that time that he would have what's called a bidirectional Glen While I was doing research for my new book for the Hypoplastic Left Heart Syndrome book while I was doing all of my research for the book I was reading about a lot of babies who had heart transplants after the Norwood And that these babies it seemed like their life expectancy was greater[00:24:00] And
so I taught to my child's surgeon I said why is it that I'm seeing that these babies who have transplants are living longer And he said well Anna did you look really closely at what they said Because it's it's actuarial And I said I wondered what that meant I'd never seen that expression before He said that's what they project When you look at the research that's done on a bidirectional glen and a Fontan those are real statistics Those are the statistics of the people who actually really did But for the heart transplant we have so few patients who have had them for hypoplastic left heart that they're just projecting how long these children will live and he said let's leave the heart transplant as the last ditch effort As long as Alex's heart is strong enough to sustain life [00:25:00] let's work with his own native tissue When you have transplant you get a whole other bag of problems along
Boots Knighton: Oh yeah.
Anna Marie Jaworski: So I said okay well I've been doing this other research and I could I'm seeing here this thing about a fenestrated fontan so can you tell me about a fenestrated fontan And he goes sure He said we've started doing a fenestrated fontan It looks like fenestrated fontans help the recipient to have a little popoff valve and that reduces the likelihood of a really serious consequence called protein losing pathy We can't be a hundred percent sure that that will work but it seems like the patients who get a fenestrated fontan which means a fontan circulation with a little hole in it so that it it acts like a pop-off valve that those people don't have the extreme pressures that the ones who don't have that pop-off valve do have and that they're not developing [00:26:00] protein losing antipathy And we really don't want him to get that because you can die from protein losing apathy
Boots Knighton: my gosh.
Anna Marie Jaworski: so that sounds interesting He said yeah but he said you know what We're gonna do what's best for Alex You need to trust us A bidirectional Glen is the way to go We have like a 90% success rate with a bidirectional Glen Let's do the bidirectional Glen And the bidirectional Glen is also called a Hemi Fontan So the plan was for them to go in when we saw he was too cyanotic and they would take top part of his body and they would connect it so that the pulmonary the the pulmonary arteries and the Wait I'm sorry let me get my book I
Boots Knighton: Sure.
Anna Marie Jaworski: this in a long time
Boots Knighton: And as you're looking this up, I'm, you know, for the listeners, I. I'm writing all these medical terms down and the thing that I'm just, that I just [00:27:00] keep thinking about is how you and Frank had to basically quickly become well versed in so much medical terminology you never thought you'd have to know
Anna Marie Jaworski: Oh absolutely After Alexander survived the first surgery they really made it sound pessimistic that he was going to first of all they made it sound like he wouldn't live to the surgery doctor's appointment was on a Friday and we were in San Antonio next morning Well it was a weekend and the doctor did not wanna use weekend staff to operate on Alex and he was in congestive heart failure by the time they diagnosed the condition And so his heart went from the center of his chest all the way over to one side It was huge so congested and so swollen And they said we're gonna use some drugs to try and pull some of the fluids off to give his heart [00:28:00] a rest Because they had been working so hard he was intubated were feeding him through a feeding tube It was heartbreaking because I had been nursing him and even though I kind of felt like I was torturing him the way that I was nursing him was used to nursing my baby and all of a sudden I had to use a breast pump I had never done that before So all of that was really hard But then when he did survive the surgery they said you know.
most babies they they don't make it They they don't make it to the next surgery And they were really preparing me in a negative way that my baby wasn't going to make it So they were completely shocked when he was discharged a week later they had never had a baby with hhl h s get discharged that quickly They were shocked but and I remember they were being so super cautious with him and I was nursing at the time so I body was wanting to feed my baby I was in his room holding him and he started [00:29:00] crying which he never did this before He started crying because he was hungry
intensivist came in and I said Alex wants to eat And they said oh no it's too soon It's too soon my breasts are starting to leak right
Boots Knighton: Mm-hmm.
Anna Marie Jaworski: half your baby starts crying Your breasts get prepared to to feed them And I I could feel myself You know my body reacting to my baby's crying And I said no I I really think I need to feed him Oh.
no no it's too soon You don't want him to vomit You don't want him to to take in And then he vomits and that's really bad He just had open heart surgery and as soon as he left the room I peeked around the at this time we were all in open base They weren't actually rooms There was just a little curtain So I peeked around the corner and I saw the surgeon down the hall right I ran down the hall and I said Dr Calhoun Dr Calhoun Alex wants to eat Alex is crying to eat And he goes feed the boy
Boots Knighton: Oh
Anna Marie Jaworski: back to the bay [00:30:00] and
I
put my baby to my breast and he latched on and he sucked with such vigor I'm gonna start crying He had never ever nursed that way I just Obviously I just started crying because I thought knew something was wrong All those days that I had been nursing my baby I knew something was wrong and I really wish that I had trusted my mother's intuition because he was a different baby and it we weren't even a week out He was a different baby and when they saw that he could nurse and he was producing urine I never realized how important urine was until the nurses were waiting after
Surgery
and I said what do you why are you staring at the catheter They said we're looking for the golden stream We have to make sure his kidneys are still working And when we saw that golden stream we all cheered Never thought I would cheer to see my baby urinate but yeah it was so exciting And [00:31:00] so yeah a week after the surgery we were discharged to go home However because we live three hours away from the hospital where he has surgery they said we don't want you to go that far Luckily my parents lived in San Antonio And so I just went to stay with them and I had to bring Alexander back I'll be honest with you my son's cardiologist did not like the fact that I was nursing felt immediately that the baby needed to be put on formula He wanted to measure every ounce that was going in my baby He wanted to measure all the wet diapers so that we could see how he was doing and I was unwilling to do that This is one case where I really stood up for myself and I'm really happy I did And I said to him do you know the benefits of breastfeeding body is gonna produce antibodies for my baby that are not available in breast milk My body is going to be able to do more for my baby than anything you can buy off the shelf [00:32:00] he was very reluctant to let me do it but I wasn't taking no for an answer his nurse took me to the side when he wasn't there and she said need to fat in Alex up He's worried because my baby was labeled a failure to thrive You were asking about symptoms
Boots Knighton: Mm-hmm. . Mm-hmm.
Anna Marie Jaworski: another symptom is failure to thrive where they're not gaining enough weight she said if he doesn't start gaining enough weight the doctor's not gonna give you an option You're gonna have to nursing And I said okay well how long do you think I have And she said well let's just take it day by day so by the time Alex was three months old we were able to go back home before then And I I had hungry baby I had little boy who was decided to make up for lost time And
I had started Joey on bef by the time he was three months old So I decided to start Alex on cereal and Gloria Ann my cardiologist nurse said [00:33:00] ah stick a little bit of Kro syrup in there I said what And she said yeah they'll give us some extra calories We're gonna fatten this baby up And I said but won't you want everything to taste sweet And she said no don't don't put a whole lot but let's just put a little bit in his cereal and then let's see what happens Well he had his surgery in October and by December I had a Butterball baby with Pinchable cheeks
Boots Knighton: Oh my.
Anna Marie Jaworski: the doctor the the cardiologist didn't believe it was the same baby He was thriving And so when he was thriving I said to Frank he's gonna make it to the next surgery Our child is gonna make it and I need to do research because now that I know he's going to make it and now that he is doing so well he started regaining those developmental milestones He wasn't crawling I think it hurt too much to be on his chest but he was rolling over He was sitting [00:34:00] up he was grabbing for things he was babbling All those things that you know just warm a mother's heart He was doing everything
So He was even starting to say words We were getting closer and closer months were going by I was working on the book I was learning so much more about these surgeries That's why I asked the doctor maybe transplant and I was being told no So with the Hemi let's get back real quick
Boots Knighton: Yeah. Yeah. Mm-hmm.
Anna Marie Jaworski: They they attach the superior vena cava to the pulmonary artery seems
Boots Knighton: it. All of this is magic to me. Anna
Anna Marie Jaworski: So that's that's a big
Boots Knighton: Yeah.
Anna Marie Jaworski: that's a Hemi Fontan is attaching the superior vena cava to the pulmonary artery full fontan Then they take the vena cava and attach that They use a baffle [00:35:00] amazing They create a baffle and they do it a little differently Now if you have an extra cardiac fontan way back in the nineties they didn't have an extra cardiac font so they did what's called an intracardiac fontan they use goretex and they make a baffle so that the
heart
acts like a two chamber pumping heart kind of like a frog's heart instead of the heart actually pumping blood to the lungs doesn't do that with the connections that it has it actually travels to the lungs based on the child's heart pressures which to me if that's not a miracle I don't
Boots Knighton: Wow. Wow.
Anna Marie Jaworski: entire purpose of the heart is to pump blood to the body
Boots Knighton: Mm.
Anna Marie Jaworski: the the heart test It just pumps the blood to the body and the blood and the blood travels passively to the lungs [00:36:00] to get oxygenated and come back So to me like I said sounds like a a miracle right they were like okay the Hemi Fontan 98% success rate we're gonna go with the Hemi Fontan or Bidirectional Glen whichever you wanna call it then maybe in a couple of years he'll have the Fontan you know we're really hopeful He's he's growing he's doing really Well, and the cardiologist was not happy that I was asking questions He said you know most people just trust their children's doctors And I said I do trust you I would not be doing my job as a mother I didn't research and make sure that I'm doing the very best I can for my child So
Boots Knighton: Well and Anna, if I could interrupt, it's not like you were set up to trust doctors at the start with this child.
Anna Marie Jaworski: Yeah Yeah Thank you Thank
Boots Knighton: Mm-hmm.
Anna Marie Jaworski: I felt remiss that I hadn't done more those first two months of Alex's life But to [00:37:00] be honest with you I was just working I was working so hard just to get calories in my baby just feeding him it was like torture I I set alarms for myself every three hours I was nursing him because he nursed for such a short period of time I I had to do that or else he wouldn't have had enough calories So Anyway so then the time for surgery came I'm feeling a lot more confident now I understand the surgeries First surgery really was an emergency procedure even though we had to wait the weekend During that weekend Wait I wasn't doing research I was praying you know
Boots Knighton: Mm-hmm.
Anna Marie Jaworski: didn't have the wherewithal I was in shock It it was very traumatic to ride in an ambulance Temple Texas to San Antonio That was a really long drive and I didn't find out until much later that the tech who did the tech or the doctor who worked on my child to [00:38:00] do the echocardiogram and who realized that the baby's heart was enlarged and that there were this many problems That person took my husband to the side and said I'm so sorry Frank I'm so sorry I've never seen anything This badger baby's not gonna make it to alive to the hospital husband waited a year to tell me that did not know that when Frank said goodbye to Alex and me he thought he was never gonna see Alex alive again So there was a lot of trauma that was involved in what we were experiencing More so for Frank in some ways than for me although me what was really traumatic was they let me hold a breathing tube near him the whole way down to the hospital and I was just chatting
with
the people in the back of the ambulance Now unbeknownst to me since it was my very first time riding in an ambulance I thought all babies who traveled from one hospital to another had a doctor on board Apparently that's not common [00:39:00] I know now
Boots Knighton: Mm-hmm.
Anna Marie Jaworski: they thought my baby was gonna crash That's why they sent a doctor along with me I didn't know that They kept me in the dark about that and that's probably a good thing was disconcerting was that I was having this very amiable concerning the the seriousness of what we were doing Conversation with the two people in the back of the ambulance with me and then when we got to San Antonio all of a sudden everybody acted like he was dying snatched him up you know and they immediately took him back and put him in another bed They're hooking all this equipment and stuff up to him and literally pushing me to the back of the room And they were asking and I thought I was supposed to answer it because before this time you know I was always the one who answered questions about him They didn't wanna talk to me they wanted to only talk to the doctor and the nurse and I found out much much later When the baby was having the second surgery the only thing [00:40:00] the admitting hospital had been told was that there was a two month old hypoplastic left heart syndrome baby Or not known They didn't know hypoplastic left heart syndrome at that time They weren't sure They said there was a two month old baby congestive heart failure and the assumption was that I was an abusive mother and that's why they were pushing me to the back did not know until we went in for the second surgery And at that time Alexander was 10 months old and they said we all thought that you were an abusive mother And it wasn't until you told us your story and how you kept saying something was wrong how you kept taking the baby back to newborn follow-up and taking the baby to the pediatrician and asking questions At that time my husband was working as an emergency room nurse I would take Joey and Alex up to the hospital and bring Frank dinner He was a night nurse and I would do that a couple times a week And every single time I brought [00:41:00] Alexander to the hospital Frank would grab a nurse or he would grab a doctor and he would say look at the way Alex is breathing This doesn't look right does it the doctors would always defer well what does the pediatrician say And the pediatrician said not to compare him to to Joey until three days before second month while baby checkup Frank grabbed a doctor He really really trusted and really liked and hadn't seen Alex before And he said look at at how Alex is breathing He's almost eight weeks old This can't be newborn breathing it can't be Look at the way he's breathing the doctor watched him and like I said you could see a cleft in his chest when he would breathe He was breathing so hard And the doctor said to me how much longer is it before he has his next checkup And I
Boots Knighton: Yeah.
Anna Marie Jaworski: days And he watched him a little bit longer and he said he should be okay until
Boots Knighton: Wow.
Anna Marie Jaworski: [00:42:00] Boots That should have been a huge red flag
Boots Knighton: Oh yeah.
Anna Marie Jaworski: to run to some other hospital somewhere else where somebody might do something different And that doctor felt so bad after Alex's diagnosis He couldn't even look at my husband for months and and like I said we considered possibly suing the hospital just to bring awareness just to train everybody because we knew this wasn't as rare as we thought it was We found out it's the most common birth defect and that this is the birth defect that kills more babies under the age of one than any other birth defect So after our baby's diagnosis we learned so much more We thought I don't think everybody at this hospital knows this but ultimately we we knew it wouldn't have the result that we wanted It would probably just make people angry offered to go and talk to the nurses at newborn follow up and to to the pediatricians and just share my [00:43:00] story They refused to to allow me to do that And they told Frank that if we sued the hospital he would not be allowed to work for that hospital any longer And we needed insurance We had to have insurance for our baby We had two more surgeries coming up so we decided ultimately to sue the hospital And I think that was a good decision but we felt terrible when his coworker lost her baby we felt terrible And we wondered if maybe we made a mistake in not drawing more attention to the misdiag I I call it a misdiagnosis
Boots Knighton: Mm-hmm.
Anna Marie Jaworski: to constantly tell us that everything we were observing was wrong So anyway let's fast
Boots Knighton: Yeah. Yeah. Mm-hmm.
Anna Marie Jaworski: growing
Now all of a sudden he's on the birth charts Hey before he was in the you know bottom fifth percentile Now all of a sudden he was in the 50th percentile which may not sound great but hey [00:44:00] when you're practically off the charts 50% sounds really good And he was developing his own little personality and he was starting to talk and say mama bye bye dadda It was really exciting to see him growing and having a relationship with his brother He loved playing peekaboo with Joey and they would clap hands and we would sing songs together It was it was a magical time
But
I could see my baby getting bluer and bluer and he was starting to labor more And I knew it was it was almost time so I knew we were getting closer and closer We had a time scheduled uh to to have the surgery I lived out in the country I lived on two-thirds of an acre of land I knew that we could be gone for weeks one spring morning I the grass which you wouldn't think would be a problem But the next morning Alex woke up with a runny nose I took him to the [00:45:00] pediatrician and I was very concerned I really felt it was allergies just from having moaned the grass He didn't have a fever He wasn't fussy he was still nursing He was doing everything fine but he did have a runny nose and they canceled the surgery Boots I can't tell you how horrible I felt about this because if he died before that second surgery and wasn't on my fault because I mowed the grass You know it was awful I begged them to reconsider and to just keep we still had a week you know or five or six days I begged them to just keep it And then when we showed up if he still had a runny nose then we could cancel it But they wouldn't do that They canceled it and they rescheduled it for two weeks two weeks later And I just prayed so hard that didn't kill my baby mowing the grass You wouldn't nobody would think that [00:46:00] doing something that innocuous would um have those kind of ramifications But I think I think that was meant to be because he had two more weeks to grow and get a little stronger and the surgeon went in and before he went in he said you and I had a talk about transplant being the last ditch effort He said but we also talked about the bidirectional Glen and you talked about the fenestrated font with me And I said yes And he said I want you to know I'm gonna do what's best for Alex right now The plan is to do the Hemi Fontan and there's a 90% success rate at this hospital with that procedure He said but I may do something else I said okay And I trusted Dr John Cahoun I would trust him with my life I trusted him with my baby's life
Boots Knighton: and what, which hospital was this at?
Anna Marie Jaworski: University Hospital in San Antonio So we went to the waiting room and they told us how long they [00:47:00] thought it was gonna be It was I think they had said it was gonna be about six hours and four hours came and went with the first surgery they were really really good about calling like every hour or so to let us know how things were going And with this one they started okay we we've done the induction Okay you know we've done this or that And then three hours went by we didn't hear
anything
to panic
Boots Knighton: Mm-hmm.
Anna Marie Jaworski: And finally a nurse came out and she said Anna you know Dr Calhoun said that he might do something else And I said yes And she said he's doing something else and he'll be out to talk to you when it's done
Boots Knighton: my gosh.
Anna Marie Jaworski: Excuse Yeah So I was panicked that because I had done all this research and Made suggestions to a surgeon like who am I that maybe if something went wrong that it would be my fault because I didn't just trust the doctor like my [00:48:00] son's cardiologist had said And it wasn't that I didn't trust my doctor I was just trying to do as much research as I could So you know I'm sitting in the waiting room and I'm praying to God to just be with that surgeon and all the people that were watching over him and just for Alex to be strong And Dr Calhoun came in it was eight hours later
Boots Knighton: Oh my gosh.
Anna Marie Jaworski: he said um Hey Anna we did the finish tray of Fontana on Alex He doesn't have to have a third surgery said I combined the second and third surgery said Alex's heart looked pretty good and um but there was some concern He said because when I cut into the sternum so much scar tissue that the heart was adhered to the sternum And I was afraid that if I had to go back a third time that we would we would hit the heart That we would cut the heart said I believe Alex can [00:49:00] make it
He said I don't know any other babies this age have had this procedure said but I believe in Alex And you know I knew if that great man believed that my kid could make it I could believe that he would make it he did he surprised everyone but not without a lot of complications He had serious ple effusions which is very common with a fontan procedure That's where you have fluids that are coming out of your plural area And that went on way longer than it did with the first surgery Went on for two weeks But uh the other problem was that his was paralyzed vocal cords were paralyzed So my baby who went in say mama bye bye dad Dad came out and had no voice whatsoever We would see him cry and you couldn't hear anything And he was on he was completely [00:50:00] oxygen dependent because of his diaphragm And his surgeon told me this could be temporary or it could be permanent He may have to have an oxygen concentrator for the rest of his life but we really hope it's just a temporary problem And a his diaphragm will come back But before we could go home we had Secure an oxygen concentrator for our house And then we also had a portable oxygen concentrator for in the in the car
Boots Knighton: And so how long were y'all in the hospital before you were sent home? With the oxygen concentrator?
Anna Marie Jaworski: two weeks It felt like a lot longer than that
Boots Knighton: Yeah. Yeah, I bet.
Anna Marie Jaworski: two weeks which is short I've talked to so many people who will be in there for months and the
Boots Knighton: Oh, wow. Okay.
Anna Marie Jaworski: was strong enough to to come out in two weeks is remarkable It actually really is and it's a testament to [00:51:00] Dr John Calhoun and his amazing team He had a fantastic still does He has the same pediatric anesthetist is amazing because the anes or anesthesiologist pediatric anesthesiologist because the anesthesiologist's job is to take a person as close to death as possible and then wake him up again So and that's what my husband is now Now my husband is A C R N A When we started this so many years ago he was a ER nurse And then as Alex grew older he became an I C U nurse And then when Alex was four and we felt that Alex was strong and he was he was gonna be okay
Boots Knighton: had his diaphragm and his vocal cords woken up
Anna Marie Jaworski: within a
Boots Knighton: within a year
Anna Marie Jaworski: and his vocal cords were completely back to normal the diaphragm healed within a couple months but it took about a year.
before his vocal cords were completely repaired
Boots Knighton: how long was he [00:52:00] on that oxygen concentrator then? Just a month.
Anna Marie Jaworski: for a couple of a couple of extra months
Boots Knighton: Okay.
Anna Marie Jaworski: It was like two or three
Boots Knighton: Oh, fair enough. Considering.
Anna Marie Jaworski: really worried but I was really worried that that might be something he has to live with for the rest of his life But no his his diaphragm itself which is just amazing to me It took a lot longer for the vocal chords And when I said to the doctor okay so I went back to the cardiologist and I said now Alex is doing so much better He is off of oxygen he's still not talking And the doctor said well he's alive isn And I said well yes and my background is in speech pathology and I'm gonna keep working with him And then I remember praying every single day God just gimme something to work with I have this background in speech pathology I had all my textbooks I looking through my textbooks to see what I could do to help my baby And said if just gimme something [00:53:00] then I I can work with that I just need something And so one day I went in to to wake Alex up It was it was time for it to start our morning routine And he was laying in bed and he was fussing but of course you know he had no voice so I couldn't hear him But I I went and I got closer to his crib and he went like a little
Boots Knighton: oh my gosh.
Anna Marie Jaworski: I said God that is not the sound I was talking about I was I couldn't believe it I said my kid sounding like a kid in this is not the sound I was talking about but you know what
Boots Knighton: It was a starting point.
Anna Marie Jaworski: what you get This is a starting point This is what you get
So
I worked with it and what I discovered really quickly that Alex had a stroke Alex had all the classic symptoms of having a stroke in his left temporal lobe was trying to speak on an inhalation of air that's the one [00:54:00] that I remember the most that that was the the standout quality and his receptive language was not affected whatsoever He could still play peekaboo He still knew Itsy bitsy Spider and all the games that we had played He remembered all of that and it and he could obey simple commands just like he did before he went into the surgery but he had no expressive language
Boots Knighton: Okay.
Anna Marie Jaworski: So when I went to see the doctor the pediatric cardiologist I said I think Alex has had a stroke And he said well what makes you think that And I said well he's speaking like a stroke patient I had a class in aphasia and I still have my textbook and he has all the classic symptoms And he said well he's alive isn't he Again that was his that was always his fallback thing to say to me well he's alive isn't he And I said yes And I know from my studies that thankfully brains are pretty elastic especially baby's brains And we can retrain his brain how to speak [00:55:00] but I just I was really disappointed not to have more support
Boots Knighton: Mm-hmm.
Anna Marie Jaworski: You know now things are totally different now they recognize there's neuro cardiac connection they even do testing pre and postop They didn't do any of that back then and a I did a little disdainful of what I was sharing with them So when Alex was 16 Boston Children's Hospital did a study on the brains of Fontan patients And I said to Alex Hey there's this study going on in Boston They wanna look at the brains of people who have had the front hand It's for teenagers only said they're willing to fly us up there and they'll even give you a stipend but you'll have to go through a series of tests and an MRI and they'll interview your teachers and and they'll you know talk to you and they'll interview your parents And he said okay if it'll help somebody else okay [00:56:00] I'll do that So before we went in I said to the lead doctor I believe Alexander had a stroke in his left temporal lobe And she asked me why And I explained and she said okay they did an mri And when she came out she said There was a stroke in a left temporal lobe It was a small stroke but you're right there was a stroke there and it may it was the first time I really felt validated you know
Boots Knighton: You know, listeners, as we've been having, Anna and I have been having this conversation. there's moments I haven't been able to breathe cuz it's like I'm going through all these emotions of awe and wonder of the human condition and how we can survive seems to be un like, what should be in our brains, like this unsurvivable situation.
And then I'm just thinking about Anna and Frank, Alex's parents and how they [00:57:00] had to endure so much medical trauma as parents and then also still be mom and dad to the older sibling Joey, and learn how to navigate a medical system that seemingly was not set up to help Alex be successful And. I just keep thinking of these questions of like, how are we doing better as a, as a medical community? And like, and I'm sure there's still room to grow, but let's, let's pivot a little Anna for the sake of time and Okay. So, you know, Alex went through that, uh, when he was 16 and he went through all that testing, you discovered he had had the stroke and obviously he had a successful childhood. he, he is now, she thriving as hope and you have taken a really traumatic situation [00:58:00] and are paying it forward leaps and bounds and. , I am just in awe of you that you are able to calmly tell me this story and all the good work you are doing in spite of it all.
Anna Marie Jaworski: Uh you are so sweet to say that it's it's funny but I really feel that God gave me Alexander in a mission
Boots Knighton: Well, it that's clear.
Anna Marie Jaworski: you Yeah well that and that mission was to use the incredible education I received at Our Lady of the Lake University in speech pathology and then later on at the University of Texas at Austin in speech pathology and deaf education Because what I didn't tell you was before his vocal chords were able to heal be completely healed and I am very very thankful that they were because I know of some people whose vocal chords never heal Alexander's vocal chords were healing but they weren't healing fast It took a long time before they were healed Meanwhile I had a little boy who wanted to communicate and he couldn't[00:59:00] he made that little kitten sound for a long time Joseph was my very best ever assistant in speech pathology We played speech games all day and all night
Boots Knighton: Joseph. Meaning Joey? Mm-hmm.
Anna Marie Jaworski: Yeah Joey Joseph
Boots Knighton: Mm-hmm. .
Anna Marie Jaworski: call yeah
Boots Knighton: Mm-hmm.
Anna Marie Jaworski: mostly the first thing we had to do was to help Alex understand he he had to breathe out you know he had to speak on an exhalation of air instead of an inhalation of air So I bought pinwheels and bubbles and we went outside and blew seeds everywhere Even though I knew I'd have more dandelions in my yard it didn't matter We blew anything and everything We could pieces of paper I mean and Joey was always a willing participant He was three years older than his brother He adored his baby brother And I just tried to make it games I just tried to make it all fun and was there and anything Joey did Alex wanted to do So that was really really helpful But despite [01:00:00] that all the games that we played and and working on speech and language all day long Alex just physically couldn't communicate the way he wanted to and I ended up bridging the gap by teaching him sign language Now I had taught Joey sign language because I was a teacher of the deaf and heart of hearing before I got pregnant And so all of my coworkers and all of my students saw a MJ is what they called me at the school for the deaf a MJ getting bigger and bigger and bigger with baby I had a baby in August right But I wasn't going back to school the next year So I know all of my kids were like wait what about baby What about the baby So of course I had to take the baby back to the school for the deaf to see all my friends my coworkers my students the cool thing was that I had been so accustomed to signing all day long that even though I wasn't in the classroom when I was talking with Joey unconsciously I was signing all the time So Joey's first [01:01:00] intelligible word was not spoken
Boots Knighton: Oh,
Anna Marie Jaworski: and it was just
Boots Knighton: mm-hmm.
Anna Marie Jaworski: It was a very milk is a very iconic sign the thing that was really cool was I remembered reading about the the development language development of children who are hard of hearing and deaf and they talked about how when they first learned sign language some of the quote unquote mistakes they would make So to make an American sign language to make the word mother you have your hand in like a five position and your thumb touches the bottom of your chin but Babies who are hard of hearing are deaf when they're first learning or babe peering children of parents who are deaf who are signing all of the time it's very common for them to take their pointer finger and put their pointer finger on their chin And that's Mama and Joey did that I was like oh my gosh my kids developing language
Boots Knighton: Mm-hmm.
Anna Marie Jaworski: a child of a deaf parent or a child who's heart of hearing And so that was [01:02:00] really kind sweet that when I would go back to the school for the deaf and visit my friends my baby would sign milk and he would sign Mama And they were like oh my gosh They just spawned over Joey They thought it was great So Joey grew up learning sign language but by the time I had Alex I was experiencing so much trouble just feeding him and taking care of him I wasn't signing with him I was just I was kind of like on auto autopilot just surviving when we came home from that second surgery and he was a phonic and we were trying to get him to breathe and to speak I said to Frank either we have to take him to another speech pathologist because he's not responding to the speech therapy I'm doing with him or going to introduce sign language And at first Frank was very reluctant and he said Anna I I'm not gonna be able to understand him And I said honey you've been around my deaf friends for years I said you know basics signs you know way more than you think you do and you're gonna be learning [01:03:00] at the same time as Alex you'll be fine So reluctantly he said okay Cuz he really didn't want me to take Alex to a different speech pathologist He didn't think anybody else would do anything for Alex that I wasn't doing already me And so sign language was our bridge That's why I really do feel God prepared me all my life having Alexander and all those classes that I took speech therapy that I knew I never wanted to be a speech therapist I needed those classes because if I hadn't had those aphasia classes I wouldn't have known that Alex had a stroke and I might not have been able to work with him with as much confidence as I was able to work with him And it's just I I really have felt that that's my mission And I'm so lucky that I'm married to a husband believes that the most important job that I could have for the two of us was not one that was earning money but it was one where I was taking care of our children then after that instead of [01:04:00] going back into the workforce and earning a salary Most people would expect you to do He felt that the best thing for me to do was to run the nonprofit and to help other people in our community
Boots Knighton: and I love the name of your nonprofit.
Anna Marie Jaworski: Thank you Heart Unite the Globe
Boots Knighton: Mm-hmm.
Anna Marie Jaworski: Carl who is the lawyer that I consulted when I decided to put together a nonprofit said to me you're picking the name for your nonprofit you want it to have an acronym that is fun and easy to remember And so our acronym is hug
Boots Knighton: Yeah
Anna Marie Jaworski: is easy to remember Everyone needs a hug
Boots Knighton: Yeah.
Anna Marie Jaworski: Yeah.
that's why we chose Heart the Globe so that we could give everybody a hug if everybody needs a hug it's someone in a heart community right
Boots Knighton: Seriously, sister. And you know, the first time Anna and I connected via phone, I felt like I was receiving a hug from her. we were, we were trying to connect so I could go on to Anna's podcast, heart to heart with Anna, [01:05:00] and I was in my van in Canada, and hadn't showered in days. And I was like, I ca I just can't quite do it yet.
I don't have a, a quality connection. And we ended up talking for like, almost an hour, and it just felt like my mom is deceased. And it was just like, I, it was just such a healing conversation. And I mean, that's the whole point of my podcast is that when people listen to each episode, they find hope and healing.
And Anna feels like a hug. , so does her organization. And so Anna, how do we find Heart Hearts Unite the globe? How do we find you on the internet? And tell me a little bit more about the mission and and all of that
Anna Marie Jaworski: Sure So Hart unit the globe.org is our website www dot heart unit the globe.org and that's where you'll see our podcast I never thought I would be a podcast or boots I know most people don't believe this when they hear me but I'm actually an introvert a very serious [01:06:00] introvert but I after I wrote my And I actually wrote two other books after that I wrote The Heart of a Mother and I wrote my Brother Needs An Operation That's Joey's book The Heart of a Mother is a story of over 60 women from around the world who were living with congenital heart defects in one capacity or another I have a whole chapter by grandmothers which is one of my favorite chapters I also have a chapter which I never would've even dreamed of putting together It's a chapter by mothers who were born with congenital heart to fix And you know when they were being so negative with Alex's prognosis I never would've believed that I would have people who had single ventricle hearts writing for a chapter for me about becoming a mother So that was a dream come true for me And after I put together Several books I started having people ask me to speak and it's one thing to write An introvert does fine with writing but [01:07:00] speaking is not so easy for an introvert And I just realized that again God gave me this mission and this mission was more important than me myself and I just had to join Toastmasters to give myself the skills to overcome feeling so shy and, being such an introvert and to find my voice through all what I have experienced has actually helped me to grow as a person And I've learned by working on another podcast called Bereaved but still me What I have experienced is called Post-Traumatic Growth and you have too Boots That's where through our trauma we end up growing stronger than we ever thought we would that is definitely what this experience has done for me So here I am a podcaster Never would've believed that I would sit here and tell you I have over 420 episodes just amazing and that I would be an executive producer of other podcasts I am [01:08:00] the executive producer for Bere but still me our bereavement podcast Downplay The seriousness of living with a congenital heart defect would be a disservice to our community And after I saw multiple friends losing their children way too early knew we needed to do a podcast that would give them a platform and allow them to share their stories And I have heart to heart with Anna episodes where we have shared that but I really thought they deserve their own podcast that's why we started a spinoff podcast called to heart with Michael because Michael started Leo died not as a result of her heart defect but she was born with a really serious heart defect which is how we became friends Leo developed autism and epilepsy which I did not know way back then that.
those commonly occurred together She had a grandma seizure and that's what ended up killing her taking her life [01:09:00] Michael is a super quirky fun guy So I had him as a guest on my show and I realized in interviewing him a bereaved father the way that he was able to communicate and still be so supportive and so uplifting spite of suffering what I considered the worst trauma a parent can go through and that is losing your child knew he would be the perfect host for a podcast So I asked him if he would do it and he said he would do three episodes on one condition And the condition was a mutual friend of ours Nancy Jensen he said has to be involved She has to be the first guest on my program And I said okay I'm looking for someone to do a whole year 12 episodes And yes you can have Nancy and he said well we'll do three and we'll see what happens here we are seven years later
Boots Knighton: Oh my gosh, .
Anna Marie Jaworski: a producer
Boots Knighton: That's so fun.
Anna Marie Jaworski: a producer We have not [01:10:00] run outta stories
Boots Knighton: Mm-hmm.
Anna Marie Jaworski: amazing We did change our focus At first it It looked like we were only going to talk to heart families who had lost a child So Nancy was the first episode was a was a guest on the first episode Her daughter Jessica passed away before Michael's daughter Lielle did And that's how they became much much closer And when things were looking really dire Michael reached out to Nancy and she kept all of the rest of us in a heart group apprised So he wasn't having to say over and over again what was going on The two of them would talk and then she would let the rest of us know what was happening So she was a touchstone for Michael That was really really crucial at a at a critical time in his life So she's you know the three of us are family to one
Boots Knighton: Mm-hmm.
Anna Marie Jaworski: And I kind of feel like that with you too boots It's funny how once we start telling our stories and sharing with one another we do feel like family and in some cases [01:11:00] people in this community understand us better than our own bloodline family
Boots Knighton: Oh yeah.
Anna Marie Jaworski: because they haven't had that same Experience and they haven't had to make the same decisions that we have and then the second episode with w was with a dear dear friend of mine Sherry Turner Her son died from hypoplastic left heart syndrome but we did a wonderful episode on Rainbow Babies and I had never heard that term before but Rainbow Babies are babies who are born after a mother has suffered the loss of a child we did a beautiful episode on Rainbow Babies and then Nancy and Michael and Sherry Sherry ended up being the script writer for that whole first season We all got together and we realized that if every single episode was on the loss of a child with a congenital heart defect that we weren't gonna get out of bed in the morning It was just too hard because we were reliving our own traumas over and over and over And we decided instead to let heart to heart with Michael be [01:12:00] more about loss Us in a more generic sense And that was something that all four of us could get behind After a couple of years we changed the name from Heart to Heart with Michael which we discovered people thought was a relationship podcast Oops So the bright audience was not finding us We changed it to bere but still me and our numbers stumbled
Boots Knighton: Can't see that.
Anna Marie Jaworski: they continue to grow
Boots Knighton: Mm-hmm.
Anna Marie Jaworski: that A bereavement podcast not called Heart to Heart but actually called Bere but still me So yeah So that has that has really really well And then I am also the executive producer for Gu Step Coron and I'm sorry to the Latino world if I just butchered that name but Warriors of the Heart It's our Latino podcast for the heart community So we have two amazing women Bella Blanton who is in her fifties living with ait [01:13:00] heart defect from Venezuela originally living in Florida now And it's her dream to help the Latino community especially the community in Venezuela She has her own nonprofit esta De and she's gonna be a guest on your program
Boots Knighton: Yes. I can't wait.
Anna Marie Jaworski: has an amazing amazing story to share And then Marta Raquel Montero is
the co-host and she is from Puerto Rico is amazing She's an author is a fantastic heart mom and I can't wait to go to Puerto Rico and meet her That's on my bucket list So go to Puerto Rico just to meet Marta Montana It'll be awesome
Boots Knighton: Wow,
Anna Marie Jaworski: So I I do not speak Spanish obviously from the way I just butchered whatever I said But I do give it a try I've been studying Spanish on duo lingo I think I understand it better than I speak it which is not uncommon with a foreign language [01:14:00] And then I just started another new podcast this year called the C H C Podcast Heart Conversations and I'm super excited about that because I wanted a podcast where I had co-host where it wasn't just all me doing the interviewing
Boots Knighton: Mm.
Anna Marie Jaworski: want it to just be interview based I wanted to do have panel discussions like town hall meetings So half of the year we'll be doing interviews and the other half the episodes will be town hall meetings and our first one will be later this month
Boots Knighton: gosh. That's amazing.
Anna Marie Jaworski: I'm working with lots of people Yeah all over I'm working I have co-hosts who are heart moms I have co-hosts who are heart warriors and sure we'll have some heart dads in there I've been working with some heart warriors who are men who are helping out and it's so much fun It's so much fun to have a whole new podcast with a whole new direction But I like to come home to heart to heart with Deanna That really feels like [01:15:00] home and I still love doing that backed down from that except for February where I did a show a day to raise awareness during concert heart defect awareness month I'm doing a monthly now instead of doing a weekly that's freed me up to do a little bit more And plus I'm a writer and I'm helping other people tell their stories which is super exciting I just started the writer's doula I guess about six months ago now we started the writer's doula So I am doing editing of other people's books and I'm helping them self-publish So it's a super exciting time right now in my life My heart warrior is Hope She and I are writing a book together about being a heart mom and a trans daughter and rediscovering each other in a whole new way
Boots Knighton: That just gave me the
Anna Marie Jaworski: It's I'm super excited about that But I should also mention I have another book coming out before that one It should be coming out very soon I have not listed my date [01:16:00] yet but it should be in an several months called The Heart of a Heart Warrior I've been working on it for four years I'm super excited about it We have over 40 stories
of Heart Warriors We have made about 50 stories by four over 40 heart warriors sharing different aspects of their life Hope has written and I will tell you all right away hope did not like the title of my book and has been against it from the very beginning But I have the heart of a mother I have the heart of a father and the simplest way to announce the next book was the Heart of a Heart Warrior Yes I.
could have said the heart of a person who was born with a caja or heart defect but that doesn't really
Boots Knighton: just too long. No Mm-hmm.
Anna Marie Jaworski: hopes
is
I am not a heart warrior refuses to let her heart defect define her and good for her
Boots Knighton: Yeah.
Anna Marie Jaworski: you're not the only one who feels that way so let's [01:17:00] do that The funny thing is that essay is in the chapter a lovely essay by Jason Crutchley person I absolutely adore and his essay is a titled How My Chd Defines Me
Boots Knighton: Oh, hilarious. Well, I mean, and that's just how it is. All of us have such a unique journey and it's gonna resonate with someone, and it's okay that hope doesn't wanna be defined, but yet your other friend does. Like, that's just, that's just where we're at on any given day.
Anna Marie Jaworski: had multiple open heart surgeries and just recently had a heart transplant So it's understandable why he feels
Boots Knighton: Wow.
Anna Marie Jaworski: he doesn't mean it defines him in a
Boots Knighton: Mm-hmm
Anna Marie Jaworski: I think maybe it would be more popular term is informs
Boots Knighton: Okay. Yep.
Anna Marie Jaworski: h d informs might have been better But when we were putting it together define is is the word that he chose [01:18:00] to use but I think he means it in a more positive way such as how this condition has given meaning to his
Boots Knighton: Yeah.
Anna Marie Jaworski: and it he's an amazing individual I just love talking to him Whenever I get a chance to talk to him he has a fantastic story That's the thing is every single person who contributed to my book could write their own book They all have these amazing stories and if you would've told me 28 years ago when Dr Park told me to take my baby home to love him for what little time he had left that someday would be co-editing a book with a heart warrior from Australia named Megan Tones and that we would be putting together an entire book of essays by people born with heart defects I wouldn't have believed it
Boots Knighton: Yeah. I mean, I feel you. Like I
Anna Marie Jaworski: would've given me hope You know it would've
Boots Knighton: mm-hmm. Mm-hmm. .
Anna Marie Jaworski: what I'm hoping this book will do
Boots Knighton: Yeah.
Anna Marie Jaworski: These are stories of[01:19:00]
Boots Knighton: Beautiful.
Anna Marie Jaworski: is what this is what I want everybody who's in that waiting room for eight hours like I was I want them to have a book like this where they can read story after story after story of people who have had challenging lives I'm not gonna take away their struggle Their struggle is part of what makes them the amazing people They are your story boots I mean the fact that you did what you did that you lived as long as you did not even knowing you had a heart defect and then almost dying
Boots Knighton: Mm-hmm.
Anna Marie Jaworski: coming out the other end and now producing a podcast of your own to help people That's inspirational It's amazing
Boots Knighton: I can't believe it.
Anna Marie Jaworski: part of the book I'm gonna put together the heart of the Heart of a Heart Warrior two and I hope you will choose to write for that
Boots Knighton: Oh, it'd be my honor. It would definitely be my honor. Well, Anna, thank you for this. at times, pun totally intended, heart stopping conversation. you are obviously, um, out there conquering the [01:20:00] world. and I don't know if when you sleep, but thank you for coming on my show. I cannot wait for people to hear this.
And, uh, listeners, I will put, basically, we just went to medical school in the past hour, , and I will put, I will put, um, all of those terms once I make sure they're all spelled correctly in the show notes. And you will have 8,000 ways to connect with Anna. Anna, thank you
Anna Marie Jaworski: thank you.
so much Can I give you my publishing company's
Boots Knighton: yeah, baby heart, baby heart's. Press. Mm-hmm.
Anna Marie Jaworski: baby Hearts Press is my publishing company and it's baby hearts press.com you
Boots Knighton: And that's our episode for today. Thank you so much for spending a little bit of your day with me. If you enjoyed this podcast, I sure would appreciate if you would go to my website, the heart chamber podcast.com, and make [01:21:00] a donation. Also, if you are a fellow heart warrior, I'd love to hear from you.
Would you like to share your story on this podcast? You can either send me an email at boots the heart chamber podcast.com or you can go to my website and go to the contact link and leave me a message there. There's also a way to leave via voicemail on my website. I'm so glad you joined me for today.
Please be sure to come back next Tuesday to the Heart Chamber Podcast for another inspiring episode.