Heart to Heart with Anna

Embracing the Heartbeat of Motherhood: Meagan Houpt’s Adoption Journey

Meagan Houpt and Megan Tones Season 19 Episode 438

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When Megan Houpt made the heart-wrenching decision to pursue adoption over pregnancy due to her heart condition, it struck a chord with me as a heart mom. Together, we unfold her narrative in this episode, navigating the complexities of adoption with a CHD. From the intricate dance of home studies to the emotional synergy with a birth mother, we journey through Megan's path to motherhood. The adoption landscape can be arduous, yet it's traversed with hope and culminates in the joyous arrival of Hunter Hart, a name rich with significance. (https://www.facebook.com/HLHSMeaganHoupt)

In the second segment of the podcast, we continue reading from The Heart of a Heart Warrior Volume One: Survival. This week, we complete Chapter 3: Being Active with CHD.

The courage of those facing congenital heart defects takes center stage as we share stories of triumph and transformation. Hear how heart warriors like and Alicia Lynch and Megan Tones find ways to be active, despite having complex congenital heart defects.

Megan takes us on an Egyptian odyssey that defies the ordinary. Imagine scaling Mount Sinai and wandering amidst ancient temples, all while balancing the intricacies of medical needs with the thrill of adventure. Her narrative captures the essence of wanderlust, peppered with humor and humanity, proving that even with health challenges, the zest for exploration knows no bounds. Alicia inspires us with her journal entries which lead us from a time of despair to a time of rejoicing.

In Chapter 4: CHDs Around the Globe

Amy M. Le, Ellen Banoub, and Belen Blanton channel their battles into creating waves of change and offering a helping hand to others within the CHD community. Amy's pivot from a tech giant to a champion for indie writers, Ellen's leap from a CHD survivor to a beacon of support, and Belen’s recounting of finding God’s mission for her showcase the remarkable resilience and tenacity inherent in our human spirit.

Join us, and let these tales of bravery, resilience, and the indomitable will to embrace life’s adventures inspire you.

Thank you to everyone who has helped HUG in creating our podcasts and other resources. Visit https;//www.heartsunitetheglobe.com to donate or join us!

HeartWorks: We Build Hearts
HeartWorks empowers the CHD community by advancing research and finding cures for heart defects.

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Speaker 1:

When we started the adoption process. We have to get a home study. So anyone who's looking for adoption and doing a home study, you have to be honest about your heart condition. No lying, you have to be honest.

Speaker 2:

Welcome to Heart to Heart with Anna. I am Anna Jaworski and your host. I am also a heart mom to an adult who was born with a single vegetable heart and who is 29 years old. That's the reason why I am the host of this podcast. With me today is a dear friend, megan Hauke. Megan and I met years ago and it seemed like after that, every conference I went to Megan was there. Megan is very to-be-ly healthy and she was born with a single ventricle heart, which included the stychnoses, hypoplasic left heart syndrome, transposition of the great arteries and epintricular septal defect. She has a Facebook page called MyHLHS Story and she's an advocate for the CHD community. I'm very excited to have Megan on the podcast today because she is beginning a new chapter in her CHD story. I have invited her to share that with me on the podcast.

Speaker 2:

After our interview, megan Towers and I will take turns reading essays from chapter three and chapter four of the Heart of a Heart Warrior. You can sign up to take part in a book study of volume one on our website, babyheartspresscom. We'll be discussing the book Mondays from five to six pm, central Standard Time in the United States. We will discuss the book for the first three weeks and in the fourth week will be a jeopardy game where people can win prizes. All questions will be based on volume one and what we discussed in the book studies. It's only $10 per session and people are welcome to join any session. Now on to the show. Welcome to Heart to Heart with Anna Megan.

Speaker 1:

Thank you, I'm excited.

Speaker 2:

I'm so excited to have you here. This is long overdue.

Speaker 1:

I know.

Speaker 2:

We have talked about this before. I don't know why we've waited so long, but I'm thrilled that you are here today because I saw a post on your Facebook page that made me jump up and down with excitement. You have a baby, so now you have to tell me about your experience of becoming a mother.

Speaker 1:

It actually started two years ago. We wanted to see if I could carry, because I was never told as a kid that I couldn't. So we did all the testing and we actually got the okay to do so. Really, yes, we did. My cardiologist in Emory and in Boston both said yes, but it came back with we don't know what's going to happen and I have to stop all my medications.

Speaker 3:

So that was terrifying.

Speaker 2:

Oh yeah, that would terrify me yeah.

Speaker 1:

Yes, so scary. So then we had the conversations and my husband and I decided not to go that route, just because we don't know what's going to happen with me not being on medication.

Speaker 3:

Sure.

Speaker 1:

So then we thought we would do the surrogacy route. We had a couple people say they would do it for us, which was amazing, but it ultimately did not work out for any of them, which is fine. Everyone offered and that was great. So then we finally took the last turn to adoption. In June of last year, we signed with our lawyer and then we got matched in September of 2023 and he was born January 2024.

Speaker 2:

Oh, my gosh. So you got matched with somebody who was pregnant. It wasn't even like they matched you with a baby that had already been born.

Speaker 1:

No, yeah, she was pregnant and she picked us to be the parents.

Speaker 2:

Oh my gosh. I actually have several friends who have adopted children, and it's quite a process to go through, isn't it?

Speaker 1:

Very very.

Speaker 2:

They felt like they had to tell their entire life story and the paperwork that they had to fill out. So what kind of information did she have in which she knew she wanted to choose you and Billy?

Speaker 1:

On our profile that they showed birth mothers. It was just about what we do for a living, what we like about each other, why we got married, how we met, what do we do in our spare time, what does our house look like? Do we have any pets? Just those kind of things that you don't really know too much about a person. I didn't even put that I had a heart defect on my profile. Our lawyer said not to just to say that I was not able to have kids on my own and that way it's not like a bunch of questions from the birth moms.

Speaker 2:

Yeah, that makes sense, because it's not like your heart defect prevents you from living a regular life. You have a very normal life, but I think you're smart that one of the reasons why you'd have such a good quality of life is because of your medications helping you to live the best life you can. So I understand why you were afraid to stop taking those for gosh. Nine months, that's a long time.

Speaker 4:

That's a long time.

Speaker 2:

So it sounds like it wasn't even hard for that mother to say oh, this is a couple that I want to raise my baby.

Speaker 1:

Yeah, it was really nice that we actually got to meet her when he was born, really.

Speaker 2:

Okay, so are you going to let the birth mother be part of the baby's future?

Speaker 1:

She chose not to. In the state of Florida. It's all up to the birth mother and what they want. So she did want to meet us when he was born and then after that she only wants pictures that are sent through a personal Facebook page, just for her.

Speaker 2:

Oh, I didn't even know you could do that.

Speaker 1:

Okay, so she doesn't want to really talk to us, she just wants to see him, and that's it.

Speaker 2:

Well, I understand choosing an option for your baby has got to be a really difficult decision, but it's such a loving decision. It's such a loving decision to go ahead and carry that baby to term, even though you know it's not the right time for you to have a baby and to want the best for your baby so you find a couple that you know will love that baby. I think it's a very selfless thing to do actually.

Speaker 1:

Very, and we're so thankful for her.

Speaker 2:

What did you think when you met her? Does she look like either one of you?

Speaker 1:

No, she does not. She is Guatemalan. So he is Guatemalan and half Mexican. He's a cute little baby, though. He's so adorable he is so adorable.

Speaker 2:

Oh my gosh, you know I'm a grandmother, so, yes, I'm kind of a sucker for little kids. And oh, I bet your parents are over the moon.

Speaker 1:

Yes, it's the first grandbaby on my side.

Speaker 2:

Oh, how lovely. Now do your parents also live in Florida?

Speaker 1:

No, they're actually both up north. One is in Michigan and one's in Ohio.

Speaker 2:

Oh, they have the same situation I do. They have a grandbaby in Florida and they're far away. I'm over a thousand miles away from my grandbaby and it's so hard. However, there is Snapchat and FaceTime and we are thankful that we have that way that we can still talk to each other and still see each other, so that makes it special. Yes, have they already come to Florida to visit with the grandbaby?

Speaker 1:

Yes, my dad came down a week after he was born, and then my mom was just here this week.

Speaker 2:

Oh my gosh, how exciting. So no problem with him bonding with the baby, I imagine.

Speaker 1:

Not at all. Not at all.

Speaker 2:

Oh my goodness. And what about Billy's family?

Speaker 1:

His mom actually lives here, so she is around, and then the rest of his family is spread out all over.

Speaker 2:

So will his mother be able to help you some with the baby.

Speaker 1:

I've been on maternity leave since he was born. I actually go back to work on March 4th and I'm really upset about it, but we actually have a home daycare that he's going to be going to.

Speaker 2:

That's good. Is it near your house, oh?

Speaker 1:

yeah, she's 10 minutes from. Me.

Speaker 2:

Oh, that's awesome. So you're a working mom? Yes, do you work full time outside the home?

Speaker 1:

Yes, I do work full time. That's going to be rough, I know. Even just thinking about it today, I'm like I don't want to go back.

Speaker 2:

I know what is it that you do, Megan?

Speaker 1:

I work with children on the autism spectrum, so I do one on one therapy with them.

Speaker 2:

Okay, now that you said that, I remember You're saying that you worked with special kids. So, yes, I know it's going to be hard to leave your little one, but there aren't that many people who do what you do I know.

Speaker 1:

You're so vital.

Speaker 2:

You're so vitally important. Oh, my heart aches for you. I know you're going to make it work and you have a mother-in-law nearby, so that will help out too. You already found a great daycare. It sounds like you're getting all your ducks in a row.

Speaker 1:

Definitely definitely.

Speaker 2:

What advice do you have for other women who have complex congeal heart defects, like you do, and they want to be a mother as well?

Speaker 1:

I would say honestly, do the testing, even if you think it's a no, just to see what they say. Because I went in thinking, oh, it's going to be a no automatically, but they both said, oh, no, I think we can do it. And I was like, oh, wasn't expecting that, just to see where your ad helps as well, because I had to do stress tests, blood work, all of the tests, to see if I could do it and I passed everything with flying colors, which was great, but the whole medicine part is what really stopped us. And if you are a no to getting pregnant, explore the other options. I have a friend who does have now almost two kids one is on the way and she used a surrogate and I know plenty of people who have adopted. There's a lot of different routes to take to be a mom.

Speaker 2:

There are absolutely. Do you mind if I delve a little bit deeper into the tests that you had to take? Because the stress test, that seems like a no brainer. Why did you have to have blood test? They?

Speaker 1:

just wanted to check the levels of everything, just to see what could possibly go wrong or what would add on to things. And everything came back great, which is perfectly good for me. Just to see if anything was too high, like your thyroid or anything like that, just to see what would make pregnancy harder.

Speaker 2:

Besides the heart. Okay, so they did a stress test, they did a blood test. What else did they do with you?

Speaker 1:

I did an echo, I did EKG, they did my liver scans and all of those the fibroscan, I believe, is what it's called. That was not fun. That was my first time getting that one. I've never heard of that. Yeah, A fibroscan it looks like an echo wand, but they push a button and it pushes into you hard and it's all over the liver area.

Speaker 2:

How do they get in here?

Speaker 1:

It doesn't go into your skin, but it's like a pressure every single time they push it, and it lasted like 45 minutes.

Speaker 2:

It was not fun. Oh my gosh, that sounds uncomfortable.

Speaker 1:

It was very uncomfortable.

Speaker 2:

Wow. And what are they checking with that?

Speaker 1:

I guess it goes deeper into the liver, like to see more without doing a biopsy. So that was nice that I didn't have to go under or anything Right.

Speaker 2:

Yeah, you didn't have to be cut or anything like that, so it doesn't sound very comfortable. Wow, so they got a ton of information on you. So, even if you didn't decide to go through with the pregnancy, this lets you know that you are in optimal health to be a mom, because the pregnancy is one thing, but taking care of a newborn baby, that is also a ton of work, and I have wondered for some heart warriors do you have the stamina to chase after a baby when they're real little?

Speaker 2:

that's not such a big deal. You're just spending a lot of time feeding a baby and cleaning poop, diapers and that kind of stuff. But when they start crawling and then they start walking and running, that's when, wow, you've got to have stamina. But having all of those tests also lets you know wait a minute my body's in optimal condition right now, even though you chose not to go through with the pregnancy which I think, given your condition was a wise decision.

Speaker 2:

At least you knew that you were in good shape to have a child and be able to care for a child.

Speaker 1:

Yes, exactly when we started the adoption process. We have to get a home study. So anyone who's looking for adoption and doing a home study, you have to be honest about your heart condition. No lying, you have to be honest. We passed with no problem.

Speaker 2:

That's good to know, so that would hopefully make it less scary for somebody else who wants to do that.

Speaker 1:

Yeah, she came in, we answered a ton of questions. She went over all the paperwork we filled out. We had to get reference letters from our friends and family, we had to get Godparents just in case something happened to us, all of those things and then she just needed to see the house make sure there's no water nearby, stuff like that. And then that was it. We were approved.

Speaker 2:

Make sure there's no water nearby, because you live in Florida and they're drowning.

Speaker 1:

Drowning risks, yes, and if there was, there needs to be a fence. Okay, all that makes sense.

Speaker 2:

What was the hardest part of the adoption process?

Speaker 1:

I think waiting.

Speaker 3:

Yeah.

Speaker 1:

Waiting to be matched with someone. Because, we did get four situations total, which is where they would email us or call us about a birth mother, tell us a little bit about them, what they're looking for, how much, and then we could say yes or no at that point. So then if we said yes, they would show our profile to the birth mother and that's when she would pick us or not. So we went through three not being picked and then the last one picked us.

Speaker 2:

When you say how much, does that mean that you had to pay them a certain amount.

Speaker 1:

Yes, okay. So in the state of Florida, to adopt, you pay the lawyer fees and the adoption costs and all of that, which that's a whole. Nother thing that needs to change, but part of it goes towards her living as well. She doesn't just automatically get cash. It doesn't work like that. It's in the form of gift cards or it's paid online through our lawyer. So she never touched anything.

Speaker 2:

Okay.

Speaker 1:

Okay.

Speaker 2:

I did not know that's how that happened. I live in Texas and my friend who told me her adoption story also lives in Texas, and I imagine it's different in every state.

Speaker 1:

It is. There's different laws, there's different rules in every single state.

Speaker 2:

What's the best way for somebody to find out what the rules and regulations are in their state?

Speaker 1:

You can definitely just Google it. If you don't find the correct answers, call an adoption lawyer. They'll give you all the information.

Speaker 2:

Was it scary to contact an adoption lawyer? I'm just thinking, oh my gosh, how much would it be, because Frank and I never made it that far. We never made it past thinking about it.

Speaker 1:

So originally we were going to go with an agency. So there's agencies, there's adoption consultants and adoption lawyers. There's a lot to choose from and it's overwhelming. Yeah, so we were going to go with an agency. They were slightly cheaper, but it was to be matched throughout the entire United States. Oh, if we were to adopt in Georgia and the birth mother gave birth in Georgia, we would have to wait for the state of Georgia and the state of Florida to say that it's OK to go back, which can take months.

Speaker 2:

Yeah, oh my gosh, that's just crazy Wow.

Speaker 1:

Yeah, ok, so there's people that stay in Airbnb's for months.

Speaker 2:

That's really intensive, plus it's nerve-racking, and how can you work?

Speaker 1:

Yeah, exactly. So, we got lucky and our lawyer only matches in the state of Florida, so we didn't have to do that part. But we were going to go with an agency and I had this weird gut feeling not to. So I went with that gut feeling and chose not to go with that agency, which I'm glad we didn't, because going with this lawyer she was great, the whole team she has is amazing and we matched really fast. People usually wait years for adoption.

Speaker 2:

Right. That's why I was shocked that you got a baby, because a lot of times the people that I have talked to it doesn't happen that fast. Did you ever consider the foster route? Because I know that that's something a lot of people do too. They'll foster a child for a while and then that can turn into adoption.

Speaker 1:

Yes, we did consider that. But with fostering it's all about reunification with the family. So both my husband and I could not mentally tackle that to take care of someone and then lose them. So we definitely thought about it. But with our jobs there's no way we can just take off, go back to work, take off, go back to work. Yeah, that's rough. So we chose adoption and I'm glad we did, because it worked out for us very well.

Speaker 2:

I am so excited for you and the smile on your face and on that sweet baby's face. Tell me the name that you decided to give your baby.

Speaker 1:

His name is Hunter Hart, so Triple H. Oh yeah, the middle name comes from my older sister. She passed away about seven years ago, so we wanted to add one of her names into his.

Speaker 2:

Aw, that's so sweet. I love that.

Speaker 1:

It's funny because a lot of people thought it was because of my heart, but her last name was Hart H-A-R-T.

Speaker 2:

Oh my gosh, that's so cool. Hunter Hart Hout yes.

Speaker 1:

Yes.

Speaker 2:

I am absolutely thrilled for you and I am so happy that I'm following your page because I have a feeling while I'll be able to learn a little bit more about your CHD journey, but now as a mom. So thanks so much for coming on the program today, Megan, and sharing your wonderful, good things with us.

Speaker 2:

Yes, thank you so much. This was so much fun. That concludes the interview portion of the podcast. We'll take a short break, but when we come back we'll have a chance to hear my co-editor, megan Tones, and me read from our new book, the Heart of a Heart Warrior, volume 1, survival. Today, you'll hear us finish reading Chapter 3 and you'll hear us read Chapter 400, conclusion. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. The opinions expressed in the podcast are not those of Hart's Unite the Globe, but of the hosts and guests, and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

Speaker 4:

You are listening to Heart to Heart with Anna. If you have a question or comment that you would like to address on our show, please send an email to annajewarski at anna at hearttoheartwithannacom. That's Anna at hearttoheartwithannacom. Now back to Heart to Heart with Anna.

Speaker 2:

All Entries by Alicia Lynch Takakardia, june 21, 2010. Is it okay if I lie down? The flutter in my chest started about five minutes ago. I ignored it. Think it would go away in a few minutes, but now I felt lightheaded. My friend Katie is understanding, despite only telling her about my heart condition once a few months back. Sure, you can lie on the couch. Do you want some water?

Speaker 2:

This summer and I just graduated from high school I want to stay in touch with my small group of friends, so when Katie invited me to a sleepover and to watch anime together, I knew I had to go. The fluttering began after watching Sailor Moon and eating dinner with her parents. I had felt flutters like this before and usually they went away quickly. However, this time the feeling is lingering for longer. I lay down on their couch for an hour or two, laying in different positions, but nothing is making me feel better. Eventually, I ask if I can call my mom. Hey, mom, I'm feeling a weird flutter in my chest and I'm a little lightheaded. Should I come home? My mom agrees I should, and as I hang up the phone, I know she is going to take this seriously. She knows my medical history like the back of her hand and since I was born she has always been my biggest advocate. When she arrives to pick me up, I feel both relieved and nervous. Relieved, I am now with my mom, but nervous because I know what happens next. I ask should we go to the ER? The lightheadedness intensifies and I sit back as the feeling washes over me. Well, how do you feel? Has a flutter gone away? I don't respond and my mom looks over to see me passing out in the passenger seat Going forward.

Speaker 2:

June 28, 2010,. I had been at BCH Boston Children's Hospital for about a week now, being constantly monitored for arrhythmias. My mom slept on a cot in my room with me. So far, we learned the cause of the arrhythmia was from a closure device put in by catheterization. A few weeks ago, while originally checking my valve pressures, they found a narrowing in my fontan pathway. They used a balloon to open the narrowing but accidentally poked a hole. As a result, they needed to put in a closure device to plug the hole. So the flutter I felt at Katie's was atrial tachycardia caused by the device interfering with the rhythm of my heartbeat as I lay in my hospital bed and giggle with my mom about the cute male nurse I had yesterday.

Speaker 2:

A doctor strolls into my room with a surgeon's cap on. He heads to the patient next to me in the same room. My mom sees him and suddenly recognizes him. Hey, dr Mayer Alicia, this is your surgeon. I take a breath in, widening my eyes in surprise. I've never met my surgeon, as my last surgery happened 14 years ago and I was 4 years old. As I try to think of what to say to the man who saved my life, he taps my foot and addresses my mom and me Hi, oh, yeah, so I think we'll go forward with surgery. My breath catches in my throat and I stare at him. He nods at us and walks past towards my roommate, the patient he intended to see. I look over at my mom, tears welling in my eyes. Surgery I'm going to have another open heart surgery. I barely remembered my two previous ones, but this one I would remember Reconstruction, july 21st 2010.

Speaker 2:

I wake up in the dim ICU of BCH. My blurry eyes focus and I notice a soreness in my throat. I try to swallow but realize I can't because of a breathing tube in my throat. I peer around looking for a familiar face, but find none. Tears stream down my cheeks. I made it through surgery, but I am alone. A nurse walks in and notices I am awake. She places a piece of paper and pen on a clipboard and hands it to me. Don't try to talk, here you can write on this.

Speaker 2:

My mind is foggy from this additive, my body heavy and I'm seeing double. It's difficult to even hold the pen, but I manage to write something. It reads when are my parents? In jagged letters. Finally, I see my mom walk into view. She reaches out to hold my hand. Hi, honey, you awake? I nod my head as crying becomes sobbing. The last thing I remembered was asking a nurse for more calming medication for my anxiety before surgery and then counting down from 100, waiting for this additive to take hold and bring me to sleep. Now, as I awaken, I feel a wave of relief. I was terrified going into this, wondering if I would even wake up, but now here I am on the other side, waking up to see my family. The procedure they performed is called the Fontaine revision, where they repaired my common atrial ventricular valve and replaced my half-manmade and half-tissue Fontaine with a 100% manmade tube. This would help with my blood circulation, so oxygenated blood would better be able to reach my hands and feet. Looking back now, I realize how important this procedure was to my life.

Speaker 2:

I began my freshman year of college only weeks later. In my junior and senior years I joined the dance club. When I'm nervous, I shake just slightly not enough for anyone to notice usually, but enough so I can feel my hands jittering. The anxiety is always the worst right before I'm about to go on stage. This is my fourth semester being in the dance show. I'm used to being in the spotlight, but the shaking still comes before I step out. This semester I took three classes a week, something I never imagined I could ever do. I'm in the best shape I've ever been in and I feel phenomenal. Yet this has still been a tough year for me, because this amount of dancing was exhausting for my Fontaine heart. The first few weeks of classes I was sore and worn out as I got used to exercising more and I took frequent water breaks. Yet I knew it would be worth it when I got to dance in three different numbers at the end of semester spring show.

Speaker 2:

Now that moment has come. I am about to perform in the lyrical one, hip hop two and jazz two numbers. Behind the curtains, I stand in a red sequined tank top and spandex dance shorts. I take a few deep breaths trying to calm my nerves. The intro to Toxic by Britney Spears plays on the speakers and I step onto the stage smiling. Alicia Lynch was born July 3, 1992, with a single ventricle and heterotaxi. Her hometown is Pepperyl, massachusetts. Alicia enjoys yoga and during the pandemic she even let her family in virtual yoga workouts. A fun fact about Alicia is that she collects unicorn knickknacks.

Speaker 3:

Journey to Egypt by Megan Tones. I gripped the railing with both hands and hauled my body up the thick stairs inside the Great Pyramid. A Japanese tour group grew closer behind me as my pull step routine became a drag step closer to the top. Far from being a real life, lara Croft, I stopped for a brief moment to ease the burning sensation in my leg muscles at the threshold of the burial chamber. Inside, different languages echoed off the walls as I looked at the stone sarcophagus where Kufu once lay, and I mentioned how silent it must have been.

Speaker 3:

It took me a long time to get here, and I'm not just talking about stairs. I must have answered a hundred questions to be disqualified from travel insurance. Was the effect that person's skin or lips ever become blue? No, hey, they never said anything about purple. Is the person growing at a normal rate? I'd say so. Will surgery be required in the future? I hope not. The travel insurance clerk looked up at me. Any other conditions Congested heart failure.

Speaker 3:

At this, a hush fell over the room. The clerk's face turned a couple of shades lighter. I felt the stares of the other customers behind me. In their minds I had become a ghost. I thought of the scene in Highlander, where the main character walks into the tavern and confronts the townspeople whispering about his newfound immortality. How on earth could someone have heart failure and be talken and breathin'? It's unnatural, no-transcript. I imagined this to be the thought in every travel insurer's mind over the next few days. It's not like all people's heart failure. The rest of my heart is fine. There's just a big piece of it missing and that's why it doesn't work so well.

Speaker 3:

Last time I went to emergency for atrial fibrillation, they didn't even do anything and I reverted on my own. There was no use trying to reason with these people, but one gave a helpful piece of advice you just need to pass the medical questionnaire. Armed with this new knowledge, I tried entering my medical conditions into the questionnaire every possible way and found what some might call a loophole Stay out of the emergency room for one year and declare congestive heart failure as the less life-threatening sounding impaired contractility. I was confident that I could stay out of hospital for heart failure. I was in stage two or three, depending on whom I talked to.

Speaker 3:

Although my stomach waxed and waned more frequently than the moon, I could manage. The occasional flood with a bit of extra-lasex Arrhythmias were a different beast altogether. For the past two years, I'd had violent bed-shaking fits of atrial fibrillation at the beginning and end of winter that lasted for days. The episodes took a turn for the worst in 2012, and I finally had an ablation in July of that year. I wish I could say that was the end of my episodes no longer shaking the bed. They are faster, with a more regular rhythm, less frequent and last only hours Armed with warfarin. I decided I could wait out any episodes I had while I was away.

Speaker 3:

I had to agree that few places on earth compared to the majesty and history of Egypt. Haven't you always wanted to see the pyramids and the sphinx? My husband was already researching places to go. Now that I was insurable, there was just one more thing we needed A guide. We found many companies offering the tour of a lifetime, but for every thousand excellent reviews there are a few terrible ones lamenting ruined vacations, unsure. I contacted them one by one, listing my conditions and requirements for a low sodium diet and access to blood tests. The replies came back we think our tour would be too strenuous for you. I don't think we could meet those requirements. These rejections led us to a small company by the name of Real Egypt, unlike the other companies. The owner, a man named Samir Abbas, met with us on Skype and listened patiently to all of our requirements. I treat my guests like family. I will never take you anywhere that I would not take my wife and children. He said I was astounded to see visits to pathology clinics, the iron art tests slotted amongst the trips to temples and museums. He would also take a satellite phone on our desert tour in case of an emergency, warn me about salty foods and make sure I drank enough water.

Speaker 3:

Finally, the big day came. We said goodbye to our families, who hugged us like they would never see us again and squeezed my feet and legs into DVT stockings. The last time I wore these, I was recovering from a mitral valve repair. This time I was embarking on a 24 hour flight to Cairo. The airport in Cairo was very relaxed, given all the strife we had seen in the news. Somebody ignored us. As we took out bags and walked down in Mose lined hall to meet our driver, I scanned the signs and saw one that read Mr Megan Tones. Close enough, I said to my husband Outside.

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We met Samir for the first time. We were familiar with his mix of knowledge, humour and calm, but not his size. I imagined that he would have to duck and turn sideways to go through a door. These traits came in handy many times when the touts became too aggressive, and even on the odd occasion when I needed practical help. First stop was a visit to a local restaurant for the koshary, a traditional fast food made with lentils, chickpeas, onion, tomato, rice, pasta and spices. The smell was very enticing after 24 hours of airline food. There are riots five minutes away from here, samir told us, but look how calm it is here. I gazed around at the families talking and eating, some women wearing head scarves and others not, and at the cook flipping a fresh batch of koshary on a gigantic hot plate.

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Outside of Cairo there were fewer tourists and we explored the temples and monuments in relative solitude. From one excursion to a temple dedicated to the crocodile god Sobek, I watched the Galabia clad guards carrying rifles Say Samir, I said, what do you have to do to get shot? He looked down at me and smiled, now digging and see what happens Every day. I took my late sex at 5am so I could have it out of my system before the day's excursion started. The timing of my warfarin dosage was non-negotiable, and I took it on the backs of camels, all while gazing at the hieroglyphics engraved in the walls of the temple of Seti. I napped in the Anubis shrine of Hatshepsut's temple and on the seemingly endless steps leading to Bani Hussam.

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Towards the end of our trip, we flew to Shamil Sheik to climb Mount Sionil at Sunset, or so we planned. The guide was a sobspoke and bed-o and man by the name of Salem who waited with some camels hired to ease our ascent. I knew from experience that they lumbered like the AT-AT walkers from Star Wars, threatening to topple their riders with every step, with a sheer drop on the outer side of the mountain path. There was no way that I was riding. Within minutes I discovered the clang was going to be much harder than I thought and so short of breath I could barely take ten steps without rest. I was mildly concerned when my nose began to bleed. My iron arm was behind, or maybe it's the thin air. Salem coaxed me with chocolate, biscuits and dates as we passed several tea houses, all closed hours earlier. By the time the sun set, we still had a 750-step climb to the summit. I asked Salem if I had been the most difficult tourist he'd escorted up the mountain. No, I once had a couple who made me carry their toddler up these stairs. Another man asked if I could hire a helicopter for him.

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At 9pm we reached the top. Salem took us into a hut where we ate fried potatoes with the bed-oans and a couple of European backpackers. The air was so thin I had to try all the heart failure tricks to get to sleep. Everything hunched over, laying on my right side and raising my upper body. Even my husband admitted he had trouble breathing up there. It seems that I had only just fallen asleep when one of the bed-oans shouted Guests, please get up. I could not have slept in if I wanted to.

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A group of Japanese tourists had gathered in a dining room to read the Bible out loud and sing religious songs. Was it dawn already? Away from the shrillness of their stinging, we took in the sunrise from the top of Mount Sionilu. Of course it was spectacular, but I was still tired and breadless and my medicine was at the base of the mountain. We descended the steps of repentance away from the vendors selling trinkets to ecstatic tourists. On the way, salem stopped to feed and talk with tired or injured tourists. That climb up Mount Sionilu was pretty dangerous. The people have accidents very often. I asked Salem oh yes, they have accidents and sometimes they die. Really, what happens? Do they fall? Oh no, they had heart attacks. I was glad I didn't know that before I started.

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Although it is impossible for me to pick a best memory or a favourite place in Egypt, two places come to mind before all the others. The first was Badiya's Museum in the Farafra Oasis. Built by a local man from death at materials, the museum showcases the artist's love and concern for his homeland. I felt awed and humbled walking inside Badiya's creation and was fortunate to meet the man himself. The other was Siwa Oasis, four hours out of Cairo, a peaceful place with a culture and language of its own. Many of the buildings were made entirely of sand.

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We were the only visitors at the eco-launch and we bathed in the hot springs as the start served some of the most delicious meals we had ever eaten. It was the trip of a lifetime and I didn't need the trip insurance even once. Megan Tones was born in Brisbane, australia, in 1983. She first caught the travel bug at age six when she travelled to the UK with her family for a vacation. Since then, she has visited a few countries for her research work, including China, the USA, fiji and Banuaji, and travelled with her family to her hospital. That trip to Egypt has been their biggest loss of venture to date.

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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 non-profit 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 pertaining to the CHD community, please visit our website at wwwcongenitalheartdefectscom for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors and much, much more.

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Chapter 4. Chd is around the globe. Congenital heart defects are the number one birth defect around the globe. As an American, this is meaningful, but it wasn't until I was communicating with people all over the world that I realized the significance of having healthcare. Just a car is right away.

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When I was putting together the book the Heart of a Mother, there was an essay by Helen Ng which I absolutely loved. While almost all of the women who wrote for that book were not professional writers, helen was. She was from Singapore. Her essay was noteworthy because it talked about her family's need to travel from Singapore to the United States for care for her son Paeson. But when Meagan and I started dividing the essays into chapters for this book, we discovered something amazing. We actually had stories about people who immigrated to other countries and they shared what that meant for the healthcare they received in their new homes.

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When Lisa Colville came on my podcast Heart to Heart with Anna, I told her at the end of our recording that I would love to do a program in Vietnamese. We had done several podcasts in foreign languages. She told me she didn't know another person from Vietnam with a CHD. I knew there had to be others, but in thinking about it. I didn't recall any Facebook friends from Vietnam either. Thus began our search. The result we found Amy M Lee thanks to the Vietnamese Boat People podcast. I did not know how discovering that podcast and meeting Amy M Lee would change my life forever. After reaching out to Amy, I discovered a woman with an amazing story and a genuine friend. Since meeting her, she and Jenny Muscatel helped found the Heart Community collection with me, and we've worked with Jenny on the CHD magazine.

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Her essay Find your Fears will help you understand why she is a force to be reckoned with. I completely misread Ellen Badnub. When I first met her online, I thought she was a quiet introvert. Since she became a volunteer with Heart Unite, the Globe, I've discovered that she's actually a bubbly extrovert. In her essay we learned about her passion for theater and how, by acting in one play, she hoped for a miracle. Ellen shares with us how God doesn't always answer our prayers the way we thought they would be.

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Belen Altuve Blanton has used her heart effect as a vehicle for good. We are like two peas in a pod. Although I am not a heart warrior, I can identify with the quality of Belen's heart. Originally from Venezuela, she is an example of how, no matter how far we move from our homeland, there is a bit of our homeland always present in our hearts. Belen has taken her love for the people of her country and worked some miracles. Moving to the United States has probably allowed her to do more good for the people of Venezuela than if she had remained home. I'm so glad she moved to the USA and even happier that she is my friend. Her essay shows how she is a friend to the CHD Venezuelan community too. Find your Fierce. By Amy M Lee.

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In the summer of 1974, a woman gave birth to the bluest baby. Underneath the brightest stars and palest moon. Outside the four walls of her hospital room, a war raged on in the humid jungles of the Mekong Delta and concrete jungles of Vietnam. The woman named Snow carried her baby for nearly nine months and at 11.53 pm she gave birth to a baby girl who screamed at the jarring bright lights, shivered in the cool air and shuddered at the touch of rough hands as she was passed from one medical staff member to the other. No one knew that in the next nine months Saigon would fall, the American war would end and communism would reign. April 1975 came to be known as Black April, but for my mother's snow April 30 was a black day for a few reasons. Yes, the Viet Cong one and the American troops pulled out, leaving the civilians fearful of what would happen next. But it was a black day for my young mother to find herself betrayed by her husband as he left Vietnam with his American wife and son, abandoned, jobless and far from family. My sweet, beautiful mother quickly learned how to keep us both alive under the new regime.

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As a child I looked alien, with my mottled skin dripping from my small skeletal frame. I was weak from malnutrition, and what little food I ate in war toward Vietnam was siphoned by the worms in my body because of poor sanitation and spoiled foods. My heart murmur and a hole in my heart compounded all of this. It would be five years before my mother learned that my congenital heart defect had a name atrial septal defect. I fell a lot as a child, but not because I was clumsy. I cried a lot too, but not because I was colicky. My body was too frail to keep up with my spirited personality and curious mind. This frustrated me At the time I was born.

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Until I was three, mama and family members constantly held me. It's a wonder I learned to walk at all or learned the meaning of independence. Cousins watched me like foxes on a chicken prowl to make sure I didn't escape, otherwise a whipping was in their immediate future. Auntie squawked over what I ate or did before I could put anything in my mouth or dash for the door. The only day more suffocating than the thick tropical air was my family's fussing to keep me alive. My only reprieve was when I was in the care of my male relatives and their friends. I got a sip of their beer if I wanted to taste it. If I wanted to wrestle with our chickens it was free entertainment for them. If I wanted to climb a tree, they'd say please get the fruits up there for dear uncle, won't you? It wasn't safe outside, with the Vietnamese soldiers flexing their military muscles which looked a lot like AK-47 rifles. But that didn't matter. I wanted to run, to play and to be normal.

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When I was five, after several attempts to escape Vietnam for fear of persecution and starvation, my mother managed to sneak us out of Vietnam along with her 17-year-old nephew and 40 other boat refugees. She had one mission and that was to safely get us to freedom so that I could have a life-saving operation to fix my heart and patch the hole that was my Achilles heel. Time was ticking. As the doctors predicted, I would not live to see my fifth birthday. In 1979,.

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After four years of living in fear, risking imprisonment to sell goods in the black market and fighting to find food day by day, my mama upped the ante. We clandestinely ran from our repressive government in the dark cover of night and boarded a small shrimping boat with other refugees. My cousin Tree was in charge of making sure I didn't die. He was always watching over me, touching me and carrying me. Fear was in his eyes. Adventure was in mine, Adrift for five days in the South China Sea, I saw the most alluring sunsets, with a sky and water rendezvoused on the distant horizon. My eyes beheld the sharks, dolphins, snakes and other sea creatures that swam beneath the glistening waters. The birds sang me lullabies while the rain quenched my thirst.

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My adventure quickly turned into a crisis. My shipmates moaned and groaned. They complained about the lack of food and the absence of land. Their stomachs growled and their lips cracked. The stentship, fear, vomit, urine and defecation flipped my dreamy world upside down. Then we spotted land the small island of Golang in Indonesia became a desolate haven for hundreds of thousands of boat people who were homeless. We were no longer citizens of any country. Separated from our family, disconnected from everything we ever knew and weary of living. We were refugees. The camp was our shelter, but with it came malaria, boredom, crimes against humanity and hopelessness. In the center of all that was me, a ticking time bomb ready to explode any minute. Then good news arrived we were getting sponsored to America Shortly after my sixth birthday.

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Five months after arriving in America, they rushed me to Seattle Children's Hospital and I had open heart surgery. I collapsed as a laggard and awoke as a hustler, energized to start school, learn English, make friends, play sports and be an all-American kid. I always came in last running the mile at school, but my heart did not stop me from finishing the run, making the volleyball and badminton teams, playing football four-square and dodgeball, climbing ropes or jumping off a diving board. Our voyage across the ocean was Tantamount to the surgery Dr Dale Hall performed in 1980. He was a triple board certified doctor who specialized in valve repairs. Finding him was winning a lottery Without great risks. There are no miracle rewards. While my six-inch scar initially held me back from feeling confident in my skin. It didn't prevent me from blossoming into the heart-warrior I am today. These days, I am an advocate in the Vietnamese and Congenital Heart Defect communities. Thanks to my mother's courage, I found my fears.

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Amy Em Le is a Vietnam War survivor and CHD warrior. She grew up in Seattle and had a successful career at Microsoft NT Mobile before pivoting to Novelist. Amy is the award-winning author of the Snow Trilogy Snow in Vietnam, snow in Seattle and Snow's Kitchen. She is currently working on her Phoenix series three books showcasing the resilience of people who have survived deep trauma. Amy is the founder of Quil Hock Publishing, a woman-owned Asian American company that helps indie writers publish their books while amplifying diverse voices through storytelling. She co-founded the Heart Community Collection, a resource for the CHD community, and sits on the board of the Vietnamese Boat People podcast. Amy also serves as an officer for two writing organizations in Oklahoma.

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Healing by Ellen Benoob. Ellen, I found a perfect role for you to do in the play we are preparing for the crucifixion for Holy Week. Michael told me it's called A Space to Crucifixion. Don't you think I'll be bad at this? Since I only do comedy, I am sure I cannot handle a play about crucifixion. I said Believe me, you all love this role. Something inside me tells me this role is just for you, ellen. Michael said so what is this role about? I asked. I thought the role might be the devil or someone evil the woman who had at this charge of blood for 12 years. Michael said I gassed all my life. I have been waiting for a miracle to cure my sickness. I long to be a healthy person instead of a person with a complicated heart, hyperplastic lab ventricle with transposition of the great arteries, pulmonary artery, atresia and dextrocardia. I have a great feeling as I am sure the Lord will finally heal me. I said I thank you for choosing me for this role.

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At the beginning of 2020, my church's acting team was preparing a musical for Holy Week. The play centered on some people that Lord Jesus met, the miracles he did and his crucifixion. I prayed reverently and read the story multiple times I meditated on the woman who struggled with bleeding for twelve years. During rehearsal I got more in touch with the story. Sure, god would heal my broken heart in the same manner he cured the bleeding woman in the Bible. I did not know anyone with the cardiac problem. I thought I was the only one who had this condition. I waited for the day of the play to be presented because I was sure that God would do his miracles me during my scene in the play will lie like the bleeding woman touched the hem of the Lord Jesus Christ's dress. Covid arrived and the lockdown happened, so the theater team could not perform the play. That was a massive disappointment for me, as I felt God accepted this virus to come and the lockdown happened. So I did not get my miracle.

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I was wrong Because of COVID. I found different meanings and tests of healing. For this reason I thought the only solution was to be healed by a miracle. That was my focus During COVID. I was terrified of getting the virus, since I did not know how my cardiac issue would react to it. For this reason I was under significant stress.

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But my siblings searched online and found Facebook groups the people living with congenital heart defects. Then I joined these groups and listened to Anna's broadcast of Heart to Heart with Anna. I contacted Anna and started volunteering with her. I found different healing meanings as I learned more about my condition. Also, I know many people just like me facing the same struggle. Now I am grateful to God for showing me different kinds of healing. God guided me to see and know that I am not alone. We are many and we need to help each other in this life. I believe I finally found the purpose of my life that God created me for To work and help people like me. My favourite sentence is you are not alone. Sometimes heart warriors feel lonely in this pain, but that is not true. There is a reason I have this heart condition, which is to help people struggling with physical illnesses. That is how I live beyond my CHD.

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Ellen Benu is an Egyptian who was born on November 6, 1991. With hyperplastic left ventricle was transposition of the great arteries, pulmonary artery, atresia and dextrocardia. Ellen moved to Montreal, canada, 9 years ago. She is studying social services and plans to be a social worker. Her cardiac situation helps her choose this career in order to support others struggling with their lives. Ellen has two nieces, one in Canada and one in Egypt. Ellen is the youngest child in her family. She has straight heart, healthy siblings, little Star of Bethlehem by Balan Blanton.

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Many years ago, when I was turning 15, my keen senorah I had my first heart attack. This devastated my parents who didn't know if I was going to make it Just like after my first surgery. The dress, the guests, the party, everything was ready, but I was fighting for my life. I was in the hospital for over three weeks. It was very traumatic for a 14 year old who only wanted to live and have her big party. Well, I made it. I remember the day of my party, the face of my parents, my family, my friends, my family. I danced the entire night and everybody was so amazed to see that the girl who was in ICU fighting for her life was having the time of her life. My cardiologist, Dr Ivan Makato Atias, who saved my life, whispered in my ear you are my little star, bethlehem. God bless you always. I was born in Venezuela with a heart disease, tricuspid Atresia. Every doctor told my parents to let me die in peace, but they never gave up. We had a neighbor who told them about the new cardiologist in town. They came back from Texas Children's Hospital and was very knowledgeable about congenital heart disease. They took me there and sent me to Houston where Dr Denton Cooley performed my surgery.

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Living with CHD is not easy, but it is not impossible. Having the right attitude, faith and listening to your body are the keys. 35 years later, I was on disability and unable to work because of my CHD. I said to God I know I must have a purpose in life, and my CHD journey started. I joined the CHD journey because I was a doctor. I said to God I know I must have a purpose in life, and my CHD journey started. I joined ACHA, went to the conferences and started my work as an advocate for my illness.

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Two years ago, in the middle of the pandemic, a lady messaged me on my private Instagram page asking for help. She told me that her baby was born with Tricuspid Atresia. They were living in Venezuela and did not know what to do. I wrote back with some information about the cardiologist I knew. After struggling with all the obstacles presented because of their health and living in my country of birth, they lost the battle and died. For me it was unbelievable. Venezuela has skilled doctors. What's going on? So I called my brother, dr Macado's son, who is now a cardiologist in Venezuela and a professor of medicine at the most important state university, he told me that 4,000 children are born yearly with CHD and less than 10% receive the cardiac care necessary. I thought, thank you God, I got it. This is my life's purpose and just like that, I created the Estrelita de Belén Foundation. Almost two years have gone by and I enjoy and work like I have never before. These children are my motivation in life. They deserve to have a life like I did. The most amazing thing is that six months ago, a mother contacted me because her 14-year-old was having palpitations and needed to have an ablation because of Wolf Parkinson White Syndrome. Guess what? She was getting ready to celebrate her 15th birthday, just like me 40 years ago. That's when I realized yes, this is my mission. Estrelita de Belén means little star of Bethlehem. Those were the words that my cardiologist whispered in my ear when he danced with me.

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Belén Altuve Blanton was born in Venezuela with a congenital heart defect. Her parents had her transported to Houston, texas, for life-saving surgery at six months of age. In 2015, belén became a member of the Adult Congenital Heart Association. Realizing the plight of those with CHD in the USA and Venezuela spawned a desire for Belén to do more for others. She created the foundation Estrelita de Belén to help underprivileged children in Venezuela. Belén also works with Hearts Unite the Globe as one of the co-hosts of Guerrero Sto Corazon, a Spanish-language podcast for the CHD community. Belén has also joined GlobalArch and is part of their communication team.

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Conclusion, we hope you have enjoyed these essays from a remarkable group of people born with congenital heart defects. After four years of working on a book, talking to the contributors, using developmental editing techniques in order to help draw stories out of the contributors and continuing to dig deeper for more meaning, I have learned that my heart-warrior is right. These people are not warriors in the traditional meaning of the word. She is right in saying that the struggles and the fights that they must endure are simply for their own survival. However, having a book title like the Heart of an Adult Born with a Congenital Heart Defect just wasn't as catchy. Like it or not, the CHD community views these adults born with special hearts as warriors, and I can appreciate their perspective as well. However, having a book title like the Heart of an Adult Born with a Congenital Heart Defect just wasn't as catchy. Like it or not, the CHD community views these adults born with special hearts as warriors, and I can appreciate their perspectives as well.

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During a philosophical discussion about the title of the book with my daughter, she mused aloud whether it was the parents who needed the label heart warrior to help them mentally in dealing with the issue of the heart-warrior, to help them mentally in dealing with the arduous task of raising a child with a chronic illness. There is so much psychology that goes into raising any child. How do parents psych themselves into being ever present in a world full of uncertainty doctors, procedures, operations, negative prognoses, fear, anxiety, guilt and pain? Do we need to view our children as heart warriors to give ourselves hope and courage? It's possible. One thing is certain Amazing people created the essays, poems and artwork in this book.

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Sadly, the word amazing is overused in today's vernacular Dictionarycom defines the word amazing as causing great surprise or sudden wonder. I think it is surprising that this cohort of people has survived, beating the odds, approving so many in the medical community wrong. How happy I imagine those self-same physicians would be to learn that science could indeed stay a step ahead of most of these contributors' needs For many of the people. I think they would give a nod to the fact that God has had a hand in all of this too. There are too many stories of people's experiences that qualify as miracles to deny a being more powerful than we mere mortals. Thank God for the physicians, the nurses, techs, pharmacists, researchers and scientists who have propelled the field of pediatric cardiology into the innovative discipline it is today. Thank God for the parents who never gave up on their children, allowed those same children to be the pioneers of a brand new field of medicine, and who believed that their children could make it. Thank God for the people born with congel to heart defects, who refused to give up, buckled down and created courage out of fear, and who came to realize the quality of life Trump's quantity of life hands down. Thank God for the technology we have today that has led us to render this book Finally. Thank God for you, dear reader, for giving us a purpose in bringing these stories to light.

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If you've enjoyed Volume 1, survival, you'll really enjoy Volume 2, endurance, and Volume 3, transformation of our series. In Volume 2, you'll see what service means to many of our heartwarriors and how they have benefited from receiving service in a variety of ways, and how even more of our contributors have provided services to the CHD community and beyond. You won't want to miss Chapter 6 on motherhood. Learning how members of the CHD community have become mothers is both exciting and touching. Finally, the Facing my Mortality chapter is one that highlights what makes the CHD community so tight-knit and why long-lasting relationships seem to be built almost overnight once heartwarriors or their family and friends, meet others in the CHD community. Volume 3, transformation, is the most diverse book of the series. In this volume you'll enjoy works of art by a variety of heartwarriors.

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In Chapter 9, heartwarrior Authors, you have a chance to read excerpts from books written by heartwarriors, all memoirs that beg to be read at a later date. You'll also have a chance to read original essays by authors Kimberly Russell and Dr Brandoline Phillips. The concluding chapter of this series deals with a very important topic Living their Lives Beyond my CHD. This chapter boasts stories about exceeding expectations, as well as advice and lessons learned by veteran heartwarriors who have survived for decades despite the prognostications they would die young. For inspiring books, please visit our website, babyheartspress, wwwbabyheartspresscom, for these books and more.

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That concludes this episode of Heart to Heart with Anna. Thanks for listening today. I hope you found the program helpful. Please leave a review of the podcast on Apple Podcasts. Reviews. Help others searching for podcasts about CHDs to find us. I appreciate Megan helped sharing her beautiful story of Hope with Us. So thankful for Meaghan Tones, as we share stories of Hope through our books and this podcast, and I'm thankful for all of you, my loyal listeners. Remember my friends, you are not. I hope you enjoyed this episode of Heart to Heart with Anna. And I hope you enjoyed this episode of Heart to Heart with Anna.

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