Chapter 10: Life Lessons from Congenital Heart Defects: Stories of Hope and Resilience

What happens when resilience meets a congenital heart defect? Join us as we uncover the extraordinary journeys of women who have turned their medical challenges into stories of hope and triumph. Begin with Emily Falcon's deeply moving "A Letter to my Younger Self," where she offers wisdom and reflections that will resonate with anyone facing life's obstacles. Move to Michelle Anderson DeRoo's powerful tale in "Exceeding Expectations," where she sheds light on how advocacy and compassionate care can defy even the grimmest medical predictions. And don't miss Allison Holmes' insightful reflections from over 50 years of living with a single ventricle heart, offering lessons learned and immense inspiration.

In Chapter 10 of "The Heart of a Heart Warrior," we delve into the emotional rollercoaster of growing up with a severe heart defect. Michelle's narrative takes us through the trials and triumphs, with low oxygen levels and dire prognoses threatening to derail dreams—until the compassionate Dr. Hurley steps in. Experience the harrowing and hopeful moments that underscore the necessity of perseverance, advocacy, and compassionate medical care in overcoming life-threatening health challenges. We also benefit from both Emily's and Allison's reflections on what they've learned growing up with heart defects.

We close this chapter, and this episode, by exploring the unique psychological and emotional hurdles parents face when raising children with congenital heart defects. We discuss how the term "heart warrior" instills hope and courage amidst the unpredictability of chronic illness. Reflecting on the transformative advancements in pediatric cardiology, the collaborative efforts between healthcare professionals, and the unyielding support from parents, this chapter is a heartfelt tribute to the resilience and achievements of heart warriors and their families. Tune in to be inspired by stories that showcase the enduring spirit and remarkable strength of the congenital heart community.

To buy this book, visit Baby Hearts Press (https://www.babyheartspress.com)

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Thanks to our newest HUG Patron, Ayrton Beatty and long-standing Patrons: Laura Redfern, Pam Davis, Michael Liben, Nancy Jensen, Alicia Lynch, Deena Barber, Carlee McGuire, Carter & Faye Mayberry, and Frank Jaworski. We appreciate you!

Chapters

• 0:00 THoaHW Chapter 10
• 2:43 A Letter to My Younger Self by Emily Falcon (read by Anna)
• 10:39 Megan Tones will read "Exceeding Expectations" by Michelle DeRoo
• 23:38 Over 50 Years Living with a Single Ventricle Heart: What I Have Learned" by Allison Holmes (read by Anna)
• 35:26 2

Transcript

Speaker 1: 0:00

There is purpose, there is meaning, purpose and what I am going through. It may take a lifetime to understand what the meaning or purpose is, but nothing happens without a purpose, not even CHD, Chapter 10. Beyond my CHD, when a mother is told her child has a congenital heart defect, she fills her every waking moment with caring for, worrying about and, for me, praying for that child. Occasionally, we moms allow ourselves a moment to envision our children as older or, dare we even say it, adults. To live beyond the congenital heart defect is a dream and an answer to countless prayers. In this final chapter of our book we have several essays by heart warriors who have dared to live beyond their congenital heart defect prognoses. These women for indeed all the contributors to this chapter are women are courageous and so determined. They have made every single day count and they have learned important life lessons along the way. We open this chapter with a letter to my younger self by Emily Falcon, where, with the benefit of hindsight, she gives her former self advice. In the middle we have an inspiring essay by Michelle Anderson DeRue Exceeding Expectations, which is one that I'm afraid far too many heart warriors will relate to. Initially, her parents were told she wouldn't survive to adulthood and later she was told her end was near. But those negative prognostications were wrong. Those doctors hadn't accounted for some things that medicine cannot measure or quantify Courage, the desire to live and sheer willpower. We conclude the chapter with an essay by Allison Holmes, who shares with us what she has learned after over 50 years of living with a single ventricle heart. Medicine today has come a long way from the early days of pediatric cardiology, where most of the children didn't survive infancy or early childhood. We've also come a long way from the days of children being diagnosed as cardiac cripples and they were kept home from school to be taught by loving parents, because schools were not equipped to handle children with special needs. We are so lucky to live in a time in history where now more adults are alive with CHD than there are babies being born each year. These essays would have been impossible to imagine by the parents of the authors, megan and I couldn't imagine a better way to end our book.

Speaker 1: 2:44

A Letter to my Younger Self by Emily Falcon. Dear Younger Self, I want your life to be full of sparkle and happiness, but as a heart warrior, it's not always going to be like that, as it might be for other kids. As you get older and your heart health changes, your days may swing between crummy and livable. Glitter and fun will return, but you won't always be stable and nothing will stay the same. Here is my advice from future you.

Speaker 1: 3:15

What's special about you is not just your heart. Just because you were born in 1982 is the one out of every 300,000 people who have anomalous origin of the left coronary artery from the pulmonary artery. Don't let it define you completely. Find the thing that makes you you and makes you feel strong. Be who you are. Your body will forever betray you and will never be perfect or healthy, but there will always be something positive to come out of every negative, even when you feel the most discouraged. Yes, you will miss going on a big overseas trip, but when you recover from your second open-heart surgery, you will meet your favorite therapy dogs because you will qualify for a visit. Your fragility will vanish as you play together and you will be your old self, happy and becoming stronger.

Speaker 1: 4:11

Enjoy your appearance and hide what you want, but remember bodies will always change. You don't have to love your body, you just have to tolerate it. Your scars will always be there, but you can accentuate whatever gives you confidence, like your smile. Move past your fear of doctors. They want the best for you, even though you'll feel like doctors are torturing you. Doctors, both familiar and new, will do what is best for you, even if you don't always understand why. They will be your biggest ally when you need advice, because they know you best. When you are 31, the doctor you feared the most will come to your rescue and explain atrial fibrillation when you have it for the first time.

Speaker 1: 4:56

He'll explain that you just need to tune up like a car does to set your engine right again. Once you're treated, you'll be on your way out of the hospital like a car leaving a service garage. People want to hug you because they love you, not always to monitor your health. Not every touch is someone counting your pulse or seeing if you're retaining fluid because of heart failure. Not every look is someone questioning why you are breathing like that or pale or have blue lips. Be brave when it matters and advocate for yourself. Ask questions and fight for answers. You'll know something is wrong for many years in your early 30s and soldier on without a diagnosis. Keep complaining and keep questioning the doctors and you'll finally get the diagnosis that will improve your overall health. Feel sad, angry, frustrated, happy and joyous when you need to. Chronic illness is a roller coaster and your feelings are valid. If someone tosses you a ball, try to catch it. Run a mile at your own pace. You'll never know what you can do. If you don't try, you'll join a softball team as an adult. You'll barely be able to hit a ball past the pitcher in the beginning, but by the final game you'll score two points for your team and be the MVP most valuable player of the game. Don't worry about what others think or say about your abilities. You're doing the best you can with your unique situation. Be proud of that. You're figuring it out. All that matters is that you're out there trying, keep your head high. Everything you achieve is a win for you, your family, friends and doctors, who don't care how fast you are, only that you are alive and well. Some people might be able to run a 5K in 20 minutes, and it will take you 38 minutes at your absolute best, but you'll get a finisher's medal, just like them. People will say stupid, hurtful things about your appearance and make assumptions about how you are feeling. You'll meet people that say the wrong things throughout your life. It's okay to be upset, but don't dwell on it. There's always someone else who is suffering too. Be kind. You don't know other people's stories, just as they don't know yours. It's not always your turn to be the sickest. Other people will someday experience some of the health trials you have been through.

Speaker 1: 7:25

Doing risky stuff can be a gamble worth taking. You will remember what you didn't do and regret what you didn't try For the first time in your life, you will take a safety risk that isn't health-related and ride a motorcycle in Alaska. Gosh, you almost fell off, but for those few minutes riding parallel to the sky and looking up at the sun, you will feel the most alive, unafraid and proud of yourself for doing something scary. Build a support system of people you can talk to about your true feelings and who can help when you are recovering from sickness. Find other heart warriors and share your stories. Listen and encourage each other.

Speaker 1: 8:07

Imagine things you want to do and achieve them. However, you can Try to do something new, big or small, and don't feel discouraged if it doesn't work out. Keep going. Consider what you really want out of life and do it. You'll climb a glacier in Iceland and won't be able to keep up with the group, but a guide will take you to the top at your own pace. Appreciate what level of health you have. Some days you'll have strength and some days you won't. That's okay.

Speaker 1: 8:38

Don't give up on yourself. Don't let anger concerning unfairness or illness consume you. Why waste the time you have being unhappy Just because one day you can't walk 10 minutes to the library? The next day you may be able to run two miles. Don't take what you can do for granted. Fun will get you through scary doctor appointments and medical tests. You will write in your senior high school yearbook that sparkly shoes would get you through life, and you couldn't be more right At age 35, when you meet your new cardiac surgeon for your second open-heart surgery, you will wear your sparkly sandals and every time you're scared you'll look at the shine and feel betteruck up on some sparkles. For whatever the future holds, everything will be okay. Love Emily. 1, 2022.

Speaker 1: 9:32

Emily Falcon lives in Brookline, massachusetts, born in 1982. At seven weeks old, she had a heart attack and was diagnosed with anomalous origin of the left coronary artery from the pulmonary artery, also known as alcapa. This led to two open-heart surgeries, one at age 6 and another at age 35. She has had a love for travel and animals, both of which have helped her get through difficult times. While living a constrained life, emily has sought adventures wherever she can, such as volunteering with animals in Namibia, playing with wolves at the Arctic Circle and eating with orangutans in Singapore. She is now an athlete who participates in a weekly run club and runs some 5k races throughout the year. She hopes to inspire others with health limitations, to never waste a moment and not let life pass them by. Her memoir From the Sidelines to the Finish Line will be released in late 2023. Check out Baby Hearts Press for more information.

Speaker 2: 10:41

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.

Speaker 1: 11:20

Embark on a heartwarming odyssey with Baby Hearts. Press your gateway to uplifting stories for the CHD community. Introducing the Heart of a Heart Warrior book series, inspiring those born with heart defects and their loved ones. Discover the heart of a mother, the heart of a father and my brother needs an operation. Books celebrating strength, love and familial support. Visit babyheartspresscom and be part of our loving community. Uplifting hearts, one story at a time.

Speaker 2: 11:52

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

Speaker 3: 12:10

Exceeding Expectations by Michelle Deroux. There's nothing we can do. Some experimental trials are available, but you will need to relocate here closer to the clinic. Otherwise, enjoy her while you can.

Speaker 3: 12:26

As a child, my parents had been told that I was born with an inoperable heart defect known as truncus arteriosus. The prognosis indicated I would likely have a steady decline of health because of the extra burden on a misshaped heart and the corresponding impact on my lungs, which would cause my oxygen levels to be low and steadily decline with age. Not wanting to put me through experimental surgery, we went home. My life expectancy was 12 to 15 years of age at best. When it was time to start kindergarten, the local school district wanted me to be in a special school for disabled children. The logic was that with lower oxygen levels I would have diminished learning abilities. Certainly you can see the burden having her in the regular class will cause the teacher. It will also be very stressful for the other students. This was not an argument. The school would win and I would not know about it for decades to come. My heart was special, but otherwise life was the same for me as any other kid in the neighbourhood. As I entered my senior year of high school we toured colleges and prepared for me to leave home on fresh adventures. My parents were nervous Are you sure you want to go that far away? Maybe we should take a trip to the clinic and have a case review, something to help you make good decisions living on your own. We agreed that while I had enjoyed a childhood of relative normalcy, but without having to go to gym class, which made me the envy of every high school girl, it was sensible to see a cardiac specialist before I headed for campus.

Speaker 3: 14:09

Dad and I arrived at the clinic for three days of testing. Since they had seen me many years ago, comparisons could be made to prior tests and good decisions could be made. I had no recollection of my prior visit. Certainly, the tests differed from what my local doctor had run. We found waiting rooms the size of movie theatres, never-ending blood tests and dozens or hundreds of people. Tests started fairly easily Light weight chest x-rays but the EKG electrocardiogram brought concerns. Dressed in a cotton robe, I lay down on a freezing table and they attached electrodes with wires to my body. Nearby exam rooms had patients busily coming and going while they asked me to stay. Conversations started in whispers, but with added voices. They became louder. Just outside the door, being cold and alone, a feeling of fear crept over me, wondering what the trouble was all about. They met my inquiries with. They will discuss it in your consultation.

Speaker 3: 15:18

Pulmonology tests for lung function involved me climbing into a large plastic box where the only way to breathe was through a small tube. Me climbing into a large plastic box where the only way to breathe was through a small tube. Slowly, breathing through the tube became harder and harder until I couldn't breathe at all. Soon other clinic personnel joined to watch while they conducted the tests. Again, being watched so closely like a lab rat only increased my anxiety. But again the reply came. They will discuss it in your consultation.

Speaker 3: 15:48

The echocardiogram was intense. The exam room was full of doctors, nurses and students eager to see the test live. Being naked from the waist up and covered in freezing gel with an audience was terrifying. Midway through, additional observers arrived. It seemed to take forever. I cried through the whole test.

Speaker 3: 16:12

At last the consultation day arrived. First I met with a young cardiologist, dr Hurley, who was studying at the clinic. We walked through the test results. It's clear your body is struggling with the progression of your disease. It is best that you plan to come regularly for follow-up. One of our senior cardiologists is going to speak to you regarding the ongoing planning. I was looking forward to hearing how to navigate the college days ahead. Surely this doctor will have some good ideas on how to manage my illness in the future.

Speaker 3: 16:48

He was an older man with dark glasses, grey hair and a rotund body. He sat across from me. I remember seeing you as a child. He began in a gruff voice To be honest, I'm surprised you have made it this far. We don't see many patients with your physiology reach your age. Looking at my chart, he continued based on your chart, you should be dead already. Angus foiled in me, wondering how he could say this, but I kept my emotions steady. I retorted well, I am alive. I disagree with you and obviously God does too. I wouldn't be here, he continued. I see the progression of your disease has developed into a severe case of pulmonary hypertension.

Speaker 3: 17:37

Trying to steer the conversation back to my college planning, I asked so what does that mean for me? How do we manage my heart and lungs while I'm away at school? He looked at me with a stern face. I don't think you're listening. You cannot go to college you will not live to graduate. Go home and be with your family. The end of your life is coming soon. Tears swelled in my eyes. Can I see my dad now? Good girl, glad you are understanding what I am telling you.

Speaker 3: 18:13

The senior cardiologist smirked In the waiting area. I fell into my father's arms. He calmed me down and asked the nurse if he could meet with the younger cardiologist assigned to my case, dr Hurley. Is it really the recommendation that she sit at home and wait to die? My father asked the cardiologist. How can anyone possibly know what her future holds? Shouldn't she be allowed to try Together? We can work a plan. She will need to be here regularly to oversee her progress and we will need to make sure her college is aware of her disease and has contact information should she need emergency treatment. I'm so sorry you had to go through this experience, dr hurley said we were told much later that they reprimanded him for contradicting the senior cardiologist, but he never wavered in his planning and support for me. We all agreed that I didn't want follow-up care from the senior cardiologist who had been so defeating. Dr Hurley would return to his practice in South Dakota soon and a new cardiologist was starting at the clinic. She was arriving in the coming months from England and would take over my follow-up care from my next visit. I met Dr Carol Wands on my next visit. She has been an incredible force for good in my life, helping me to make prudent choices while still enjoying life to the fullest.

Speaker 3: 19:41

In the fall of 1987, I went off to college. My college years were tough. Walking across campus was difficult and the stairs in some of the older buildings without elevators were nearly impossible. These were the days before ADA Americans with Disabilities Act requirements. But over time I learned to ask for accommodations when needed and would arrive to class extra early so I could rest prior to the beginning. Many times it would be overwhelming, but I finished my freshman year with good grades and was accepted into the honours program. In 1989 I had a stroke and my college days on campus ended. After brain surgery, rehabilitation and rest, I began again in night school while I worked during the day.

Speaker 3: 20:34

Complex congenital heart disease needs medical insurance. These were the years when support programs had yet to be started. So if you needed insurance you had to have a job. The work-life balance was challenging but I kept working on my bachelor's degree. It took 10 years to finish my bachelor's degree in finance.

Speaker 3: 20:56

In 2007, I completed my master's degree in business leadership. I graduated with a 4.0 GPA. My parents hosted a brunch for family and friends to celebrate. I gave the toast. Once upon a time I was told that I wouldn't survive to graduate. That was 20 years ago. A big thank you to Dr Hurley for having faith in me. My complete gratitude to Dr Warrens for lifting me up and guiding me these many years. Thank you to everyone here for your love and support. Here's to another 20 years.

Speaker 3: 21:33

My wonderful family has supported me in everything and we have enjoyed many adventures along the way. I'm even a grandma. My beloved husband Mark tells people I am his hero. My beloved husband Mark tells people I am his hero. In truth, he is mine, supporting me in my life and career. He has always been there for me. I have had a wonderful career working in technology in the early days of the internet, from working with the rocket scientists of NASA to creating plans to place computer equipment in medevac helicopters. It has been a great experience that I enjoyed. Most of my colleagues over the years have never known of my medical situation. It is part of who I am, but not what defines me. Sometimes it crosses my mind that perhaps if that senior cardiologist hadn't been so negative about my future, I might not have had the drive to achieve so many things in my life. There is no way to know for sure. I do know that the support of those along the way has helped me exceed my own expectations.

Speaker 3: 22:39

Michelle Anderson DeRue was born in Elmhurst, illinois in 1969. Was born in Elmhurst, illinois in 1969. Sensing a heart murmur, her pediatrician recommended testing which resulted in a diagnosis of truncus arteriosus. At that time, surgical intervention was rare and with low survival rates. Her family chose to not go down the surgical path at that time, as a teenager, she re-engaged with the adult congenital heart team at the Mayo Clinic, where her condition has been managed without cardiohormonary surgery since 1987. Today she lives with her husband, mark, and their dog, sophie, in North Carolina. In 2016, she retired from a successful career in information technology and currently enjoys time with her family, especially her five-year-old granddaughter, and friends golf opinions expressed in the podcast are not those of Hearts 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 1: 24:01

Over 50 years living with a single ventricle, what I have learned by Allison Holmes who am I? My disability has shaped me, but it does not define me. It is a part of who I am, but it is not the core of who I am. I am much more than my limitations or my medical diagnosis. My voice matters. I must be my own best advocate by educating myself about my heart condition. The names and dates of my surgeries and procedures are now clear to me. When I don't understand my doctors, I talk to them, question them and even change them if need be. When I was younger, I felt intimidated by doctors, but I don't feel that way now. I feel doctors are more comfortable and straightforward because of the confidence I display in communicating with them. I can only do this because I am knowledgeable about my condition. Staying in Care I have learned the importance of staying in the care of a congenital cardiologist. They are specifically trained to work with CHD patients. Regular cardiologists are not familiar with the structural defects we present and the comorbidities that may come along with CHD, such as pulmonary hypertension, etc. The importance of staying in congenital cardiac care was reinforced for me after being evaluated for heart and lung transplant and they found a malignant tumor in my kidney. Because of the care I was receiving with my cardiac team, the cancer was found and successfully treated. You can do it.

Speaker 1: 25:34

Living with congenital heart disease has taught me to be independent. From early childhood, I fought hard to prove myself, to be able to do things for myself and keep up with my siblings. Beginning at 18, I began taking myself to doctor appointments on my own. You may need help sometimes. Now, as I am aging, I am learning the importance of being open to relying on others when needed. As an older person with CHD, I realize I need more help to do certain things than I used to. There may have been times when I wasted more energy than I needed to. Because of my strong independent nature, you will live. Plan for it. Live your life to the fullest of your capacity. Push yourself, but know your limits. Make sure you plan for your life, such as school, career, health insurance.

Speaker 1: 26:28

I have come to the mindset that if you don't live a long life, it won't matter, but if you do it definitely will make a difference in your quality of life. Don't worry about dying, just live your life. Worry is a thief and it will rob you of joy and happiness. Dream, don't forget to dream. I have come to understand this late in my life. Because of the doctors telling mom and me that my lifespan would be short, I didn't dare dream about a future until I became an adult. This is something that I still struggle with because it was ingrained deep into my psyche. However, I have been working on this. Last March, I went parasailing over the Gulf Coast with one of my dear friends. It is a memory I won't soon forget and I look forward to going again.

Speaker 1: 27:16

There is purpose, there is meaning, purpose and what I am going through. It may take a lifetime to understand what the meaning or purpose is, but nothing happens without a purpose, not even CHD. Be a helper. Learn by what you go through and then help others with what you have learned. Once I discovered the Adult Congenital Heart Association, I knew I wanted to help others like myself. I became a peer mentor with the ACHA. It has been very satisfying for me and I hope I have been helpful to those I've worked with.

Speaker 1: 27:54

I'm not the only one with problems. My story is not unique. While I may have issues that no other may have, so many others have difficulties they struggle with too, medically or otherwise. I have encountered many struggling souls in my time. Everyone you meet is dealing with something the value of being understood. People will never fully understand what you are going through. They are not you and they do not have your physical issues. You will need to learn how to communicate your needs effectively to your loved ones.

Speaker 1: 28:29

Often this is not easy. Be patient, be persistent. You don't have to be strong all the time. It is okay to show your weakness and give voice to your struggles. Expect the unexpected. Unexpected things will happen, good and bad. Health setbacks and or cutting-edge medical technologies, slash treatments Not so fast. It's okay to go slow or take a break. Just do not stop and give up. Once, when I went ziplining because of the incline in the mountainous area, getting to the launch pad was quite challenging, but I slowly persisted and I made it to the top. I was rewarded with an exhilarating flight through the forested mountainside. Energy is gold.

Speaker 1: 29:19

Getting older with CHD, I realized my energy is limited. I feel I must guard it like it is gold. I need to set boundaries and learn to say no when necessary. My energy is valuable and I need to protect it. Look for those who are like me.

Speaker 1: 29:38

Growing up with CHD, I never knew anyone like me. There were times of deep loneliness. The average person did not understand my specific situation and it was frustrating. Once the internet came to be, I began to look for people who could relate to my issues. Even so, I didn't meet another heart patient until I was 25 years old. I found my heart sister in 2017, and our relationship has been such a blessing. I have also met entire communities devoted to supporting and advocating for congenital heart patients. If you don't have a local heart community, you can start your own. Talk to your heart clinic and share your information to see if you get any response. Then set up your own meet and greet, either in person or virtually.

Speaker 1: 30:26

Don't lose hope. Medical advancements are happening every day. I never thought that I would live 50 years or more, but, thanks in part to the medical advancements I have, life is short. It passes by in the blink of an eye. Don't put off the things you would like to try or experience. Enjoy them while you can Grow your spirit, this physical world and our physical issues are temporary, but our soul will live on after our body has expired. Do not neglect your soul. The joy of life comes from inside of us. What we nurture or neglect will impact every aspect of our life. For me, this means having a close relationship with Christ. There is still so much more to learn.

Speaker 1: 31:17

Allison Holmes was born in 1972 with a single ventricle heart. She has been with her husband, mark, since 2000. She is a dog lover and dog mom to Duncan Shelty and Ollie Schnauzer and an ESL tutor teaching children who live in South Korea conversational English. Allison volunteers with the Meals on Wheels organization and with Heart to Heart with Anna. In her free time Allison is a peer mentor with the Adult Congenital Heart Association. Occasionally she volunteers with Carolina Waterfowl Rescue as a baby bird feeder. Allison believes in living the life she has been given to the fullest of her capacity. She is discovering the gift of giving herself. Grace. For Allison, it's not the quantity of life but the quality of life that she aims for these days.

Speaker 1: 32:11

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 the 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's 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 Cajal to 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.

Speaker 1: 32:59

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 worrier 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. Sadly, the word amazing is overused in today's vernacular Dictionarycom defines the word amazing as causing great surprise or sudden wonder.

Speaker 1: 33:51

I think it is surprising that this cohort of people has survived, beating the odds and proving so many in the medical community wrong. Survived, beating the odds and proving so many in the medical community wrong. How happy I imagine no 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.

Speaker 1: 34:21

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 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 congenital heart defects who refused to give up, buckle down and create a courage out of fear, and who came to realize that quality of life trumps quantity of life hands down. Thank God for the technology we have today that let us render this book Finally. Thank God for you, dear reader, for giving us a purpose in bringing these stories to light.

Speaker 2: 35:06

Thank you again for joining us this week. We hope you have become inspired and empowered to become an advocate for the congenital heart community. Heart to Heart with Anna, with your host, anna Jaworski, can be heard at any time, wherever you get your podcasts. A new episode is released every Tuesday from noon Eastern time.