Ellen Boyer and World Down Syndrome Day 2024 & Volume Two: Endurance!

When Ellen Boyer graced our show with her story of love and resilience, it was clear that her daughter Brett, who blessed the world with her presence despite Down syndrome and a congenital heart defect, has sparked a legacy that transcends every stereotype. Through the Brett Boyer Foundation, Ellen's dedication to challenging limitations and advocating for CHD research is a beacon of hope that lights up our latest episode. As we celebrate World Down Syndrome Day, we invite you into our heartwarming discussion and extend an open hand for you to join us in spreading the message for World Down Syndrome Day: Stop the Stereotypes.

In the 2nd and 3rd segments of the episode, you'll hear co-editors Megan Tones and Anna Jaworski reading from The Heart of a Heart Warrior Volume 2: Endurance. This week they're reading essays from Chapter 5 in anticipation of the next Baby Hearts Press Book Study, which starts on World Down Syndrome Day (March 21st) from 5-6 PM USA CDT.

It's the personal journeys that often strike the deepest chord, and this chapter resonates with stories of tenacity and the transformative power of companionship. Listen to the heartening tale of Monica Mossey and her service dog Jax, whose bond exemplifies the extraordinary support that can come from our four-legged friends. The courage of Tracey Grasty, through multiple heart surgeries and life's relentless challenges, will remind you of the strength that lies within our community, and the remarkable resilience we can muster when faced with life's daunting obstacles.

We round out the conversation by stepping into the shoes of those whose professional lives are shaped by their personal experiences with congenital heart disease. From Victoria Scoggins' journey into healthcare administration to Megan Tones' research in rare diseases, these narratives showcase the depth of impact that personal health can have on career choices and the contributions these individuals make to the healthcare field. We end the chapter with an essay by heart warrior and nurse, Roslyn Rivera--a nurse whose practice spanned the globe. As your host, Anna Jaworski, I'm here to reaffirm that the power of advocacy and community is just a heartbeat away, and together, we can navigate the landscapes of the heart with courage, dedication, and hope.

Websites mentioned in this episode:

Baby Hearts Press: https://www.babyheartspress.com

The Brett Boyer Foundation: https://www.thebrettboyerfoundation.org/

Transcript

Speaker 1: 0:00

We got a prenatal diagnosis of Down syndrome and she had a balanced AV canal defect when I was pregnant with her. I always tell people I totally feared the wrong diagnosis ["The Heart to Heart"].

Speaker 2: 0:19

Welcome to Heart to Heart with Anna IM. Anna Dorsky, your host, also a heart mom too, an adult. She was born with a single vitro cohort and he was 29 years old. That's the reason I'm the host of your program. With me today is Ellen Boyer. Ellen is married to Bo Boyer and they have three children Brett Wells and Lottie. Brett was born with Down syndrome and a congenital heart defect. Sadly, brett passed away due to complications from her jaw or heart defect.

Speaker 2: 0:49

Ellen's with me for today to talk about World Down Syndrome Day. This day has been officially observed by the United Nations since 2012. The March 21st 2024 call is for people around the world to end the stereotypes. Ellen and her family started the Brett Boyer Foundation in honor of her daughter. Ellen is the executive director of the Brett Boyer Foundation and today we'll learn more about that foundation and how you can help them with their mission. After our interview today, meaghan Tones and I will take turns reading essays from chapter five of the Heart of a Heart Warrior. You can sign up to take part in a book study of volume two on our website, babyheartspresscom. We'll be discussing the book's Thursdays from five to six pm. Usa Central Daylight Savings Time. We'll discuss the book starting on Thursday, march 21st, which just happens to be World Down Syndrome Day. It's only $10 a session and anyone is welcome to join at any time. Now on to the show. Welcome to Heart to Heart with.

Speaker 1: 1:57

Anna Ellen. Oh, thank you so much for having me. I'm so glad to be with you.

Speaker 2: 2:02

Well, I'm so excited to have a chance to talk to you today and to learn more about your nonprofit organization. So, first of all, a mutual friend of ours, Katie Swan, told me I had to meet you and I had to have you on the podcast. The more I learned about you, the more I realized oh yeah, she is absolutely right. So I really enjoyed reading about the Brett Boyer Foundation on your website. For those who don't know about this foundation, can you tell us why you started it and what your foundation does or who it helps?

Speaker 1: 2:36

Absolutely. Thank you. And yes, I agree, katie is just the best. I'm so thankful that she connected us and I'm so thankful to know her. She's such a gift to the CHD community. We started the Brett Boyer Foundation in 2017. My precious firstborn Brett.

Speaker 1: 2:55

We got a prenatal diagnosis of Down syndrome and she had a balanced AV canal defect. When I was pregnant with her, I always tell people I totally feared the wrong diagnosis. There were a lot of intricacies of her diagnosis of, yes, she might have Down syndrome. No, it looks like low risk. We did not have an amnio. But when we finally found out that she had an AV canal, that kind of solidified the diagnosis for us and I thought, well, they're telling me that they can fix her heart, because you know they still love to use the term fixed. They can fix her heart.

Speaker 1: 3:37

But what about Down syndrome? Because I was so fearful of all the things that they kept telling me she would never do. I was terrified of what it would do to our family, to the dynamic, because I wasn't lucky enough to know and love someone with Down syndrome. So I was so scared of what I didn't know. And then, the minute she was born, I realized how wrong. I was that how I feared the wrong diagnosis and that Down syndrome was a part of her and it was a part of her that I would not change for the world, that I'm so grateful that she chose us and that that was a part of her. It wasn't everything about her is a part of her. That, I just think, is wonderful. It's always the top of our mission. Of the beauties that she taught us is that Down syndrome should be celebrated and does not need a cure, and that the HD needs a cure, and that's what took her from us. Yeah.

Speaker 2: 4:37

Isn't it funny how your world completely changed in what you were thinking and how you were thinking about it, and how interesting that the world Down syndrome day is to stop the stereotypes. And that's exactly what you were having to face yourself For sure.

Speaker 1: 4:56

Of all the things that they told us that Brett may never do, none of that was considering her heart defect. Those predictions on what she would accomplish with her life were only based on her pros and I. Never, in a million years, even before we talked about having children, do you think that your child would be able to change the world for an entire massive group of people. And she did, and she has and continues to. There's just so much that I'm so thankful that we never put her in a box the way that sometimes people that are just misinformed and uneducated about Down syndrome and just so thankful that we get to see her legacy continue. It's just the honor of my life.

Speaker 2: 5:44

It's pretty amazing what people with Down syndrome can do. When my second child who has a good job heart defect was born, we were living out in a country in Texas, in a teeny, tiny town called Mound Everybody always says flower mound, like now. Now that's near Dallas. I was way out in central Texas in the middle of nowhere, where there are more cows than there are people. Wow, and my neighbor down the street had Down syndrome.

Speaker 2: 6:11

Yeah, and she wrote a column for Mound, for the Gatesville newspaper. Because Mound is so tiny we didn't have our own newspaper, but they always let us have part of the Gatesville newspaper once a week and she would write the news so we knew who was happy lunch with whom or who went out to a movie. It was like walking back in time when I lived out there. It was amazing. And this woman who was born with Down syndrome she's in her fifties now and she was just like the star of the town. She knew everything that was going on and that was her job. She didn't get paid for it, but that was her mission was to keep everybody apprised of what's going on in the big metropolis of Mound, texas.

Speaker 1: 7:02

And she was like. I'm sure her beautiful life, her visibility, her contribution to the town made everybody's stigma about how much value she brings I mean to everybody that meets her and how much each life has such great purpose. Absolutely, the amount of chromosomes that we have don't change, that, it amplifies. No, it doesn't.

Speaker 2: 7:26

Yeah, and you know how love late that we're not all exactly alike, right? I love it that we have different interests, we have different abilities, we have different things that excite us. I was a homeschool mom and one of my dear friends who was a homeschool mom. We were co-coaches for our children's robotics club and her aunt has Down syndrome. Her aunt didn't have the same skills that my neighbor did, but her aunt is just such a joy to be around and when she's with her aunt they dress up like princesses and they go to tea and they did fun things. I kind of feel like her aunt is a reminder of not ignoring the child in us and that it's okay to be child like and see joy in everything, because that's how her aunt is she just finds joy in everything. And isn't that lovely that we have someone like that in our lives.

Speaker 1: 8:25

I know, and that's what I want to be like, and that's what I want to be around, and I mean, why would you not want to find joy in everything? It's just a beautiful reminder and something that our society needs so badly. I'm so grateful to know and be a part of this community and I'm so thankful that Brett came to us exactly how she was.

Speaker 2: 8:49

So tell me, now that we've talked about that, what does World Down Syndrome Day mean to you?

Speaker 1: 8:56

World Down Syndrome Day means to me celebrating our differences, like we said before, celebrating what everybody brings to the table, acknowledging that they deserve a seat at the table and recognizing that all of our strengths are different. And one of the biggest things that Brett taught me is no matter how old you are maybe you haven't figured out what your strength is yet and that you have the ability to see it in other people and to help them recognize it as well.

Speaker 2: 9:27

Yeah, it feels like Brett gave you a whole new mission in life.

Speaker 1: 9:31

Absolutely and absolutely to never put limitations on yourself, but also to know that you have absolutely no right to put limitations on other people.

Speaker 2: 9:44

Right.

Speaker 1: 9:45

I know you and I talked before we started recording about when we received her diagnosis. We had many doctors that absolutely saw her worth right off the bat and I'm so grateful that they were so compassionate about honoring her life and recognizing she is our child and is no differently loved than our other two. But there were still a lot of people that immediately put limitations on her before she was even here, and it's so hard as a parent to hear that and not to feel fear. Immediately Before she was born there were a lot of things that I definitely didn't think that I could do and she brought out good in me that I didn't even know that was in there. That is something that forever I will never put limitations of what someone is capable of.

Speaker 2: 10:41

I love it. For those who have not visited your website yet, can you give us URL for your website?

Speaker 1: 10:48

Yes, the website is the Brett Boyer Foundationorg. That's Brett with two T's. Our logo is the Queen Bee, because that's what we called her, our Brett the Queen Bee. Yellow was just her color. And another thing that kind of made my heart so happy was, years before I was even pregnant with her, I had saved in my phone it said aerodynamically the bumblebee shouldn't be able to fly. But the bumblebee doesn't know that, so they just keep on flying anyway. I was reminded that while I was pregnant and going through all of the emotions that are part of receiving a diagnosis. That's scary. Anything different is scary. And I read that and I was like we're not going to tell her what she can and cannot do, we're just going to be along for the ride, and sometimes things take longer and they're that much more of a celebration and I just want to be part of it. That is why it's all bees and one of you will see the bumblebees flying around on our website.

Speaker 2: 11:52

I love it. I love it. Thank you so much for coming on the program today, Ellen. I have so enjoyed meeting you, hearing about the Brett Boyer Foundation, and I know we're going to be talking about it even more next week.

Speaker 1: 12:07

Thank you, anna, I've enjoyed it too.

Speaker 2: 12:10

Okay, my friends. That concludes the interview portion of the podcast. We'll take a short break, but when we come back you'll have a chance to hear my co-editor, megan Toste, and we read aloud from our new book, the Heart of a Heart Warrior, volume 2, endurance, chapter 5. 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 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 4: 13:07

When I was a kid having my surgery in the 1990s, there was very little entertainment available. Our choices included playing Alex Kidd in Miracle World on the Sega Master System 2. Someone had stolen a Wonder Black cartridge from the box. The boy who could fly, or Conan the Destroyer the latter was fairly questionable entertainment for young children and perhaps that's why we watched it repeatedly. Fun fact, arnold Schwarzenegger had a bi-custodial aortic bowel, so it may not have been completely inappropriate. As the youngest in my family with an older brother and older, mostly boy cousins, I ended up seeing a lot of action movies, and the actors seemed to me to be the embodiment of endurance, taking injuries with an almost robotic calm in the pursuit to whatever end. While we may not look or feel like action movie heroes, and we certainly don't have their salaries, we endure nonetheless, as do our loved ones who support us. As time passes, the medical field advances and we may find answers to why we feel and experience what we do. All more questions may be raised. My own experience has been that my health has not been linear. I am healthier at age 40 than I was at 26, thanks to medications not available back then.

Speaker 4: 14:32

In the three chapters that form. The middle of this book, service, motherhood and Facing my Mortality, you'll meet many others who have enjoyed the challenges that come with reaching adulthood and older age with CHD. In Service, you'll read about heartwarriors working in the medical profession, as well as those who have had valuable experiences. Giving back to the community are enriching their families' lives In Motherhood. You'll learn about the unique circumstances that women with CHD face on the road to Motherhood and how their experiences in growing up with CHD help them to advocate for their loved ones and community. The final chapter, facing my Mortality, is a hard read, but so worth it for the wisdom the contributors in part Some of them have sent past away.

Speaker 4: 15:24

Chapter 5. Service. If you've read this book from the beginning, you may have noticed that several of the essays are about helping others. For example, jason Crutchley volunteered with the American Red Cross to repay all the help he received as a child, while Christie Silman became a pediatric cardiologist within the ICU to help the children with CHD. These stories showed that there were different ways of giving back and that in giving you can gain so much. For example, you may have heard a saying that is some variation of the best way to help yourself is to help someone else.

Speaker 4: 16:04

This chapter expands upon the theme of service. In Monica's essay Jack's More Than a Service Dog, the quest for a service dog gives Monica a sense of hope and purpose. Jack's a loving home and both of them loving companionship. Tracy Grastie, victoria Scorgans and Rosalyn Rivera are all in the healthcare field, reciprocating through their work. In her essay Giving Back, tracy describes how she had to stop wifeing as an ICU nurse during the pandemic and found herself in a different caring role, helping her parents, now aged in their 80s, as they cared for her as a child.

Speaker 4: 16:48

In my career choice, victoria talks about the loving guidance of mentors which steered her towards a career in healthcare administration rather than the front line. Rosalyn's essay Novic Cardiac Alliance Trips to the Middle East and Eastern Europe tells the story of her journey from pediatric CHD patient to pediatric CHD nurse, traveling the world to help heal young hearts. My essay man Lighting as a CHD is about a part-time job I once had, volunteering for a medical school program. I must admit I am a bit in awe of my co-authors in this chapter and of what they have achieved. I didn't think I could cut it as a doctor, nurse or other healthcare professional. However, you don't have to be a medical professional or emergency worker to give back. Even small gestures can make a big difference to somebody's life Together. These essays show that there are many ways to give back to those in need and, in turn, received.

Speaker 2: 17:52

Jack's More Than a Service Dog by Monica A Mosse. Mid-morning on January 3rd 2016,. God answered my prayers, but in a much bigger way than I imagined. I was talking on Facebook Messenger when I noticed I had one unread message. At first glance I caught the words Therapy Dogs and Louis H Mosse. I stared at the message again and saw a link to check out Therapy Dogs.

Speaker 2: 18:19

My heart skipped with excitement at the possibility of my dream finally coming true. If Dad was serious about this, after an intense internal debate on whether I should inquire, I could no longer stand a suspense. I had to know for sure. Dad was sitting in his recliner. When I calmly and nervously asked Dad the message you sent me, does that mean what I think it does? Looking serious and not saying a word he nodded yes. I immediately became an emotional wreck. My dream was finally coming true. As soon as I composed myself, I gave Dad a hug. Thank you for making my dream come true, I said with a lump in my throat and tears flowing down my cheek. Still embracing each other, dad suggested why don't you do some research? There may be some applications to fill out. Thanks, dad, I'm planning on it.

Speaker 2: 19:11

Sitting in the living room, I looked at the photo of Levi. That was my screensaver. Levi, I thought I love and miss you dearly. You were the best cat anyone could have asked for. I hope you will send me your blessings as I search for a service dog.

Speaker 2: 19:27

I browsed the Therapy Dogs website a bit. Before I emailed explaining my situation. They responded by telling me their company trained dogs for people who need them as emotional support. Therefore, they could not help me and wished me the best of luck in my search. I thanked them and continued researching.

Speaker 2: 19:45

Over the next couple of days I sent out numerous emails to Therapy and Service Dog Organizations explaining my urgent situation. One by one, the replies arrived, rejection after rejection. They were the wrong company, required money up front or had a two to four year waiting period for a specially trained dog. I could not wait that long. I needed one right away. I'm so depressed. I said to my mother I don't want to wait two to four years. That's too long. Maybe I should adopt a small dog and train him myself. Keep the faith, mom said sympathetically. I am sure God has something special planned. Why don't you email the Milton Veterinary Hospital? Maybe they can point you in the right direction. I contacted the vet and asked for their assistance. Tears spilled down my cheeks while saying another prayer for a service dog, unaware that my life was about to change the next morning, january 9th. Hello, is this Chico and Friends saving dogs? Milton Vet gave me your number. This is Anne Mossy. I'm calling for my daughter, monica. She is unable to hear on the phone. I am lucky for information about getting a service dog for her. She needs a small dog because of her heart defect.

Speaker 2: 21:02

When I woke up, I was shocked to hear Mom say Monica, you have to check out Chico and Friends saving dogs. You laid it and, heart pounding, I checked out the Facebook page. Browsing through the pictures of dogs available for adoption, I came across a picture of a two-year-old dog named Jax and instantly fell in love with him. Mom, I am going to inquire about Jax. Mom nodded in agreement, shaking with excitement. I contacted the owner via Facebook about Jax. I told your mother this little guy would be perfect for you. She replied. Knowing this gave me goosebumps. I knew God was giving me a sign. I scheduled an appointment for the next day, since there were three other people interested in him. Thank you for letting me meet with Jax tomorrow. I wrote on Facebook Messenger. Lying in bed that evening, I put my hands together and prayed Dear God, please help me make the right decision regarding Jax.

Speaker 2: 22:00

The next morning, mom and I headed over to Chico and Friends to meet Jax. We introduced ourselves and anxiously waited for the employee to bring Jax out. Here you go, she said, placing Jax in my arms. While holding him, I was unsure if he was the right dog for me. When he laid his head on my shoulder, I had my answer Filled with mixed happy emotions. I made my decision and adopted a trembling two-year-old Jax. Thank you God, I said with tears sliding down my cheek. After Jax settled in and we got to know each other, it was time to begin the training process. I searched online for a certified dog trainer. Mom, I exclaimed. I found a trainer.

Speaker 2: 22:43

A couple of weeks later, mary Ann came to my house to meet Jax and me. She asked me what I wanted Jax trained for. I have a complex heart-lung defect and occasionally wear oxygen. I told Mary Ann I need Jax to comfort me when I am distressed or sick. Also, I am deaf and wear cochlear implants. I want Jax to alert me when someone rings the doorbell or walks in the house. Mary Ann made notes, then pulled out a training workbook and pointed out the do's and don'ts. She showed me how to train Jax. To alert me when someone was at my house. You need to have Jax leash tied to you for the next month. That's the only way he'll know that you are his owner. It'll also help him learn about your special health needs.

Speaker 2: 23:26

Mary Ann told me Jax was one step closer to becoming a service dog. It was time to get him registered. Monica mom said I am so proud of the work you have done training Jax. He seems so much more comfortable with his job. His little blue vest is so cute, beaming with pride. I registered him online and anxiously waited for his papers to arrive in the mail. A week later I received them. Look, mom, I said upon opening the envelope. Jax is officially a service dog, mom, and I cheered. Even though it was legitimate, it did not feel 100% official until Mary Ann finalized it. I can't believe this is my fourth and final visit. Mary Ann said to me Jax has been doing great work with his training. I am quite impressed. I could not have done this without you. Thank you, I said to Mary Ann as she left.

Speaker 2: 24:20

Jax was exceptional in his training. His intuitiveness amazed me. One day he followed me around and wouldn't stop crying until I checked my blood sugar. He senses my daily battles and incessant pain by sticking to my side. With his help, although difficult at times, I pushed through the rough days.

Speaker 2: 24:42

He knows what his vest means. It takes his job seriously. While wearing it, once it is off, his personality changes from serious to playful. He knows how to keep me laughing. Jax's enthusiasm and zest for life are infectious. He is truly my kindred spirit. We do not get to choose what happens to us, but we do get to choose how it shapes us. What is life all about for Jax and me? It is about the hope that exists beyond the pain and a journey I never have to make alone. Mononkhamasi was born on September 6th 1984 with Trunkas Autiriosus, type 2, along with a host of other cardiac and pulmonary conditions. She lives in Vermont with her fur baby Jax, a Chaiweenie dog who is her pride and joy. She is an avid reader, enjoys stewing, cross-stitch and spending time with her friends and family, especially her two nephews and her niece.

Speaker 4: 25:40

Giving Back by Tracy Grasty. My temperature wouldn't go down. Mum and I were in the emergency room ER for the third time. My mum was yelling at the doctors because they thought I had the flu and gave me a shot that didn't work. My fever was up to 104 degrees Fahrenheit. Mum held my hand and reassured me all would be okay. I remember being so scared because the doctors couldn't help me. Then Superwoman showed up, a beautiful black woman, pediatric cardiologist. She touched my hand and reassured me and my mother. I'm going to find out what's going on, she said. She ran tests and discovered I had endocarditis. I was eleven years old. I had to be admitted into the hospital for one month on IV penicillin. As a child it felt like forever.

Speaker 4: 26:39

I knew about hospitals. I was born with tricuspidotresia, ta, with hyperplastic right heart syndrome, hrhs. By the time I was eleven years old I had had two heart surgeries. One was a Blalock Tau, sig Thomas shunt at fifteen months and one was the Waterston shunt at four and a half years old. I remember little about these surgeries, except after the Waterston shunt. I remember going back to the hospital to get my stitches out. In a cold room they took a set of pliers and removed them. Ouch, I said repeatedly. It seemed as though I had a million stitches.

Speaker 4: 27:23

During my hospital stay, mum visited every day after teaching school, before going home to fix dinner. She sat with me as I ate nasty hospital food and complained about being there. Mum held my hand and comforted me. I anticipated mum's daily visit and it always thrilled me. My dad, sister and brother would sometimes come in the evening. Thanks for coming, I said to everyone. They would leave me and my heart would sink every time we said goodbye.

Speaker 4: 27:55

That year I also started wearing a brace for scoliosis. I remember the pain of how it squeezed my body. I could hardly breathe or eat. It went from my chin to the bottom of my butt. Kids teased me because my butt was flat. They would also trip me in the whole land laugh because it was hard for me to look down. My clothes tore from the nails and I was never comfortable, especially in a chair, unless it was upright, with no cushion. After three months mum would take me for another brace adjustment because I had grown. When the brace would draw tighter I would feel like my body was in a vice and it was hard to breathe. I had back surgery at 17 years when they placed a Harrington rod inside my back, straightening my spine. I was free.

Speaker 4: 28:44

In 1999 I taught school and in the summer I taught at a daycare. We all went to an indoor play park and the children two to four years old were playing on the slide all by themselves. I thought, since I was small, I could get on the slide too to supervise them more closely. Another co-worker and a friend who was small like me also got on the slide. I thought surely if this 50 year old lady can get on the slide, so can I. The slide was a tube and was so fast I couldn't stop and there was nothing to hold on to. I wound around fast and furious. I reached the bottom Ow. One leg got caught on the mat and I flew forward. The other teachers took the kids away so they wouldn't get scared when the ambulance came and took me and my broken tibia and fibula away.

Speaker 4: 29:40

After surgery my parents came from Detroit to Maryland take care of me. After a few weeks Dad went home but Mum stagged. We went back to my studio apartment. Mum cooked and cleaned. I had a rod placed so there was no plaster cast but I had a boot to wear your leg looks like it was in a fight and lost. Mum said there were bruises everywhere. Physical therapy preserved both legs. Mum stayed until I could take care of myself.

Speaker 4: 30:14

I was in college when I asked my doctor about how long I would live. He replaced my old doctor, who retired. Dr Ross was straightforward you won't live past 26 years old unless you have a surgery called the Fontan. He said I was 22 years old. Mum started crying. I think that is why my old doctor would hedge and never say how I really was to him. He said I expect your outlive me when he was in his late 60s or early 70s.

Speaker 4: 30:47

I came out of college for the Fontan. All went swimmingly until I felt like I couldn't breathe. I kept calling the nurses and doctors. I had so many tests, but they couldn't find evidence of my decline on any tests. Meanwhile I asked for more oxygen, which they reluctantly gave me. One night I woke up and every staff member was around my bed. Tracy, you look grey. We need to intubate you. I was so scared. The next thing I knew I had a tube down my throat. I don't know what hurt more the tube or my newly operated arm chest. I could hear my mum yelling from the hallway at all the doctors and nurses for not believing me when I said I was feeling worse and having trouble breathing. My mum was hot. That little black woman telling off every doctor and nurse she could find must have been something to behold.

Speaker 4: 31:44

The intensive care unit ICU allowed 15 minute visits every hour. I looked forward to mum and dad visiting me. The ICU was cold and I stayed in pain. Morphine, I said to the nurse All I wanted was sleep. Sometimes dad couldn't come, but mum was always there.

Speaker 4: 32:05

A few decades later, I felt my heart beat fast and weird. By charting as a pediatric cardiac ICU nurse, I put myself on the heart monitor and couldn't believe my eyes. My heart was beating 250 beats per minute. I was in atrial flutter. They put me on a beta block of medication that dropped my heart rate to about 35 beats per minute. I could barely get out of the bed. I had no energy. I needed an ablation, a procedure where they burn away the areas of the heart that cause the arrhythmias. Before my ablation I heard a knock on my house door Mum, dad. They came to take care of me until I had my procedure. A sense of relief washed over me.

Speaker 4: 32:51

Years passed and I visited home more often because my parents became too old to travel. One day mum and I went shopping and as we prepared to leave the mall, mum couldn't remember which door we came in. I recognised a store and a pillar, so I directed us accordingly. Then mum couldn't find her car. This never happened. Luckily, I saw a glimpse of a light blue car and went over to it. It was mum's car. When mum couldn't find her way home, I knew something was wrong. My phone GPS got us home. Tracy. Dad said in one of our regular calls Mum isn't paying her bills and her phone got cut off. I did, too, pay them, mum said. I gave them $100 in cash and I don't owe anyone anything. Mum's credit score was $850. She was never late with her bills. I realised I needed to help mum and dad. Mum will be 87 later this year and dad will be 90.

Speaker 4: 33:56

I travelled from California to Detroit, michigan, at least once a month. When the pandemic happened, I was unable to work my regular job as a pediatric cardiac ICU RN. Since they allowed me to work remotely, I took my computer and stayed in Detroit for several months. Mum has developed Alzheimer's dementia and she is progressively worsening. She refuses to believe she has Alzheimer's and will not allow me or anyone to bring a care provider, housekeeper or anyone in the house. It is part of the disease. When I am home, I do what I can. Dad cleans, cooks and does laundry. Unfortunately, my sister and brother don't come home to help. They refuse to come home.

Speaker 4: 34:45

During the pandemic, even though I begged them to, I wore full personal protective equipment a Tyvek suit with a hood, a hair net, booties, mask and shield and travelled in first class on a direct Delta flight because first class passengers sat alone. Mum assigned guardianship to me. I started taking care of the bills and paying more attention to her medical issues. Although financially and logistically difficult, I am glad I could do this for her. While I was in Detroit, I got her a mammogram on blood pressure medication and a gastroenterologist for her gastroesophageal reflux disease. I helped dad get his correct medications appointments and followed both of their health closely. I still do. Before I left, I made sure they got their COVID vaccinations here.

Speaker 4: 35:42

Mum, I said while helping her dress for her podiatry appointment you can't wear a slip and pants. That's where this pretty shirt. Let me help you with those buttons. It looks like your arthritis is bad. Today she keeps hiding her keys and mail. Dad said I do not. Mum said you keep taking my things. We both know this is part of the progression of mum's illness. It's time for you to have a nurse and physical therapy. The doctor said at one of mum's appointments I don't need strangers in my home, I'm fine, said mum. I want to help both my parents, especially my mum, not only because they are my parents, but because they always cared for me when I had CHD problems. Prayerfully I can give mum and dad back a morsel of what they have given me.

Speaker 4: 36:36

Tracy Renee Grasty is the youngest of three and was raised in Detroit, michigan. Tracy was born on September 23, 1966, with tricuspidotresia, aka hyperplastic right heart syndrome or single ventricle. While Tracy is single without children, she does have a pure white pet rabbit named Snowball, a bird lover. Tracy also has a pineapple conure named Sunburst because of her vibrant colors. In the past Tracy loved to travel and go to live concerts. She followed her favorite singer, l D Barge, around the country, attending all of his concerts.

Speaker 3: 37:23

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 2: 37:57

My Career Choice by Victoria Skoggins. Victoria, have you thought about your career? I remember my cardiologist, dr Mullen, asking me during a routine follow-up appointment Because of your trichuspid atresia and other heart defects, you will have a tough time getting health insurance. It is very important you have insurance that has good coverage and you can't ever let your policy drop. At 16, this was not a conversation I was ready for or even wanted to think about. I always knew that insurance was going to be an important aspect when choosing a career. Mom would always say you need good insurance. Whenever I would talk about the future From an early age, my parents pediatrician and cardiologist always reinforced that I would need good health insurance throughout my life and a career that fit my physical abilities.

Speaker 2: 38:47

I had an inkling I wanted to work in the medical field. I wanted to be a doctor, but my fear of needles prevented such a vocation. With my frequent visits to my pediatrician, dr Tallin's office, I became a regular there and even had my own room. My pediatrician became a family friend and mentor. Knowing my fear of needles and that I had an interest in a career in healthcare, he asked have you ever thought about going into healthcare administration? Oh, I didn't even know that was an option. He told me to set up a meeting with their office manager and of course I did. I ended up working in my pediatrician's office during summer vacation and saw firsthand the duties of an office manager. I decided I was going to be in healthcare administration Now. I sought colleges with the healthcare administration program. Unfortunately, I did not find a college that specifically had healthcare administration as a major, so I ended up getting my bachelor's in business administration. During summer vacations I returned to my small town and, because my pediatrician knew that chief executive officer CEO of our local hospital, I was able to have a one-on-one meeting with the CEO to further discuss pursuing healthcare administration. He offered me summer jobs to get hands-on experience and learn about the administrative process of running a hospital While earning my undergraduate degree in business. I signed up for the only healthcare administration class that was offered. The professor of this class retired from a healthcare organization as CEO. He was someone I needed to talk to and get more insight into this career path I had chosen.

Speaker 2: 40:30

Victoria. If you want to get into healthcare administration, you need to think about getting your master's degree, and my professor suggested some universities that had great programs. I took his advice and pursued a master's degree in healthcare administration. During graduate school I was in a work study program with the program director, dr Mosley. His background was in hospital administration and his father had been one of the first hospital administrators for the Veterans Administration VA. With a year left until graduation, he asked me what part of healthcare management do you want to go into? Ceo of a children's hospital? Knowing my medical history, he said you should look into veteran affairs. They have great benefits and good job security.

Speaker 2: 41:19

Since I had multiple open heart surgeries as a child, I pictured myself working in a children's hospital. Dr Mosley offered some good points I would need to consider when picking my first job. Perhaps his greatest contribution to my career decision was recommending that I consider working for the Veterans Administration. As I got closer to graduation he asked have you applied for any of the VA administrative fellowships? You know there are few offered throughout the country and they are very competitive. A few days before my final presentation he asked have you heard from any of the fellowships you applied for? Yes, but I haven't received an offer yet. He looked disappointed but said there's still time for the facilities to select their administrative fellows. The next day I got the call I was being offered an administrative fellowship On a final presentation day. Dr Mosley peeked his head into my office. It's time for your presentation. Are you ready? Yes, after my final presentation, with most of the professors sitting there, dr Mosley asked did you get any offers? Actually, I got an offer yesterday with the VA for a healthcare administration fellowship and I have accepted the offer.

Speaker 2: 42:34

I have been with the VA for over 14 years and it has been the best career decision. Over the years, I have worked in three VAs in three different cities. I have very good benefits that generously cover my increasing medical care costs. While healthcare insurance was always a crucial factor in choosing a career path, I have found a career that gives me satisfaction. Every day I get to help veterans and having great health insurance is just a bonus. From Dr Mollins to Dr Mosley and everyone in between, I have had many significant mentors who influenced me and guided me to a successful healthcare career.

Speaker 2: 43:13

Victoria Rose Goggins was born in 1983 with tricuspid atresia. Her heart defects were not diagnosed until she was one month old. When she was rushed to Texas Children's Hospital for Surgery In 1989, she had the fontan, realizing that her heart defects needed more publicity. In 2014, she started her Wear Purple for CHD Awareness event on Facebook. Although originally from a small town in Texas, she now calls Arizona home. She shares her home with her dog and enjoys working her sense business when she is out, working her full-time job at the VA hospital as a hospital administrator.

Speaker 4: 43:56

Mern Lighting as a CHD-er by Megan Tones. From the hallway I hear Dr Smith lecturing the medical students. When you are taking a patient history for your objective structured clinical exam, you don't have much time, so it's all about pattern recognition. Out of breath, from walking up the hill I wait the doorway. You need to look for patterns of symptoms to clue you in on what might be going on with the patient. Ah, megan, dr Smith smiles. Take a seat. We were just going to start introductions. As we go around the room I learn the students are from different corners of the world. How exciting it must be to move to another country to study and work. On my turn, I try to sound interesting. My name is Megan. I was born here in Brisbane and work as a rare disease registry curator and researcher. I enjoy travelling and go to Japan nearly every year. Megan is here. As one of our patient volunteers said, dr Smith, she's going to go back a few years to when she was 22 and first presented to her doctor with a new medical issue. Would anybody like to volunteer as Megan's doctor? They look at me already turning over facts in their minds Young female, working, travelling and considering possibilities. Finally, student volunteers and the game begins.

Speaker 4: 45:24

My task to reveal as little as possible about my medical history. I even covered my scar and painted my lips. So what brings you here today I want to say well, a little while back, my pediatric cardiologist told me that my heart has been stable for years and functioning like normal. But I don't believe him because I still take the jocks in and my heart randomly races and I sleep all the time and I get puffed out carrying my groceries home. But I am also trying to publish from my honours and get my PhD and write a book and well, it's like I'm trying to live my whole life in a few years, but I can't. Instead, I tell them I'm 22 and I just moved out of home with my husband and daughter. I work at a university and will start my PhD soon. When I get home, I just want to sleep. Sometimes I wake up and my face is all puffy like the moon, and when I carry my groceries home I have to stop walking up the hill. Sometimes my heart beats really fast for no reason. Usually they start down a line of questioning for anemia, pregnancy or mental illness. Sometimes they raise their eyebrows at the moon face thing but, like me, don't realise that it's water retention. Heart failure from congenital heart defects causes fluid to build up in the darned displaces. Most of the time. The student doctor eventually arrives at heart failure. One even asked if I had a history of heart disease and I played dumb Gee. I had a few surgeries as a kid, but I'm not really sure what they were. And I still take these little white pills. Guess I should read the box, huh?

Speaker 4: 47:07

Once class has discussed my possible diagnoses, dr Smith turns to me. So, megan, do you want to tell us what really happened? I'm back, squinting at the bright lights of the consulting room at the university's general practice. Aside from what I told the student doctors, I also said my heart feels really heavy and dull, like somebody replaced it with a brick or wrapped it in a wet towel. He raised his eyebrows. I'll send you off for some blood tests. There are a few rare things I'll back to roll out. I'm not your typical student patient, am I? I'm more like somebody you might see on that show house. The student doctor nodded. I don't see people like you every day.

Speaker 4: 47:54

At the hospital, the gastroenterologist studied my liver ultrasound. Your liver is congested, with blood flowing back from the right side of your heart. Finally, an answer to why I struggled to keep up with the other students and missed my school bus nearly every day and, when I got older, wanted to sleep all the time. I took the results with me to the cardiologist. Even then, as I sat in his dingy office with my liver results, he performed an echocardiogram and said Sometimes we see liver problems in fontan patients, but not in patients with ventricular septal defect, vst. I don't think your heart would be the cause. I couldn't believe it. I felt like he was treating me like the old maid in a card game. But he did help me, even though I had to take the long way. We could do a catheter and a stress echo to check your heart pressures and how your heart works when exercising.

Speaker 4: 48:52

As the classical music played, my cardiologist, surrounded by a registrar and a team of scientists, pressed a needle the size of a pen cap into my femoral artery. Thanks to a local anesthetic, I felt only a curious pressure, the wires bumping into the sides of my arteries like errant guppies lost on the weight of my heart. I thought of strange science fiction and horror films of the 70s and 80s, tony Scott's the Hunger at the forefront of my mind Maybe it was the Hungarian accent of the registrar. I watched my heart on the monitor as the scientists read out numbers. It was almost hypnotic, except when my heart rate spiked a couple of times.

Speaker 4: 49:36

The procedures over. My cardiologist said calmly we need to remove the wires now. I looked down as the doctors put a towel over the needle. What happened next was a coordinated effort. As my cardiologist removed the needle, the younger registrar pushed down on the wound with all his strengths. Even so, the blood flowed like a hose on full power. I stopped looking but felt the towel growing heavier with me. My lower body felt like it was unraveling, my feet detaching, floating away like smoke. I thought of my blood like a magician's silly strength squirting from the cuff of a magic jacket. How absurd life is. This isn't as much fun as it looks on true blood when we descend. How Okay. Somebody put a hand on my shoulder and a blanket over my shaking body. We stopped the bleeding.

Speaker 4: 50:32

It surprised me that I was able to stay on the treadmill for eleven minutes. For the first few minutes I chatted with the cardiac scientists. What do you think of house? Terrible show. It makes people think that the crazier your doctor is, the better. My cardiologist called me back a few weeks later. Your mitral valve is leaking quite a lot when you exercise. We're going to need to repair it.

Speaker 4: 50:58

I had a huge mortgage, bore new rescue dogs and was halfway through my PhD. Now is not the time for surgery. Can I have it two years from now? I don't think you've got two years. He was right about that. Soon I was out of breath chopping a tomato or tying my shoes. My dogs became my masters. My husband watched helplessly as I lay next to the window staring at the world I was no longer part of.

Speaker 4: 51:28

Finally, in the hospital, a new congenital cardiology team prescribed metoprolol and furosamide. These were, of course, heart failure medications. Only nobody wanted to come out and say I had heart failure. Instead, I was an adult with heart disease. On the third day in hospital I woke to see my surgeon sitting by the window, bathed in the early morning sunlight, like an angel. We can do the surgery in five weeks. The last time I volunteered, a student asked me a question I had not heard before. So what happened after the surgery? Do you feel better now? I think I do. I started Not better, but more stable. The surgeon was very good and saved my valve, but I still have heart failure and arrhythmias.

Speaker 4: 52:21

One time I ran into my cardiologist in the car park and I asked him why he told me not to come back as an adult and why he didn't warn me about what could happen later in life. The student doctors leaned in. What did he say, asked Dr Smith? He said years ago we felt like if we got you through high school, our job was done and I thought it would be pessimistic if we told you all those things and that you might give up on yourself. It's hard to know what to tell patients. There you have it said, dr Smith. Sometimes the patient doesn't fit an expected pattern or the pattern might still be in discovery. Adult congenital cardiology was a very new field at the time of Megan's case. As the lecture resumes, I leave from knowing they are a little wiser about adult congenital heart disease. Maybe I will see one of them again in a consult room or hospital hallway or at my bedside and feel that I am in safe hands.

Speaker 4: 53:26

Megan Tones was born in Brisbane, australia, in 1983. Her heart condition was discovered at six days of age, but she was not formally diagnosed with a large ventricular septal defect, vsd, untrubbed, two years of age. She has had four heart surgeries between the ages of four months and 25 years. She has worked on a range of research projects in the area of disabilities, education and health and specializes in research methodology. In her spare time she enjoys helping the CHD community.

Speaker 2: 54:04

Novic Cardiac Alliance trips to the Middle East and Eastern Europe by Rosalind Rivera. As the city-wide speakers, playing the call to prayer in Arabic awakened me, I find myself yet again reflecting on how my life has led me to be in Iraq, having grown up in a suburb of Los Angeles and attending private Catholic school my entire life. I look back and think that I actually grew up sheltered from the real world. This was likely because my parents' desire to keep me safe from harm. My parents raised me with fear for my health. Like any parent who heard the words congenital heart defect, my parents took me home, their newborn baby girl who was just diagnosed with congenital heart defects. Their own hearts shattered, their minds confused, their hopes in limbo. Despite my unknown future, they raised me as they would any child, but with a tremendous secret. They didn't share my diagnosis with my family. My grandmother cared for me, not knowing that my heart was literally a ticking time bomb, lovingly giving me sugar water when I had a boo-boo. I still am amazed that my parents kept this secret, wanting family to treat me like a normal child. It wasn't until I fell into heart failure at age three that surgeons touched my heart to repair it. From this moment, my heart became the focus. After my second open heart surgery at age 10, I knew I wanted to be a pediatric nurse. When I grew up, even with my sometimes failing heart, there was nothing stopping me. Here I am as a pediatric cardiac nurse, working alongside an international medical team to provide free cardiac surgery to children in the developing world.

Speaker 2: 55:56

When I graduated nursing school at 21, I did not envision that my future would lead me to a country where the language and culture were extremely foreign. This humbling life reflection is cut short as a phone rings in my hotel room Good morning, my father said. As I answered the phone Instantly, I am in shock and awe, a state of joy that only my dad's voice could produce. He somehow figured out how to call my hotel in Iraq from California. Hearing him express how proud he was of me for having the courage and determination to travel to Iraq to provide my nursing expertise words spoken from halfway across the world made my heart so full of love. As my career as a pediatric cardiac nurse advanced, I recognized that congenital heart disease spans the world, regardless of race, culture, religion, politics or economic status. It became my sole purpose, my passion to help heal children worldwide, children with CHD just like me. Not only these children with special hearts, but also their parents and families, just as mine were cared for. Throughout my childhood, my dad was my ultimate supporter, encouraging me when I told him I was leaving California to start travel nursing across the USA, crying tears of joy and probably fear when I told him I was now taking my work overseas.

Speaker 2: 57:25

Over the past 10 years, I have taken part in medical mission trips to developing countries such as Iraq, dominican Republic, libya, ukraine, russia, iran and Ecuador. Novic Cardiac Alliance provides free, life-saving cardiac surgery to children with CHD and medical education to local teams so that they can become sustainable programs, being spent a total of over 6 months in Ukraine and Libya, places I barely remember learning about in school and where I didn't know a single word of the language. I now know these places so well that I could take public transportation, and the medical teams are my friends who keep a small part of my heart. As much as I may have taught the local teams, I learned so much more about the world, about language, religion, culture and hope. I have followed my heart's desires quite literally across the globe. As I prepare for my shift in the Iraqi hospital, I tie my hair up and put on a scarf to cover it out of respect. Looking into the mirror, I notice the faint line of my chest scar and smile Throughout my travels. The one undeniable thing is that a smile translates in every language. There are numerous remarkable memories ingrained in my brain A once blue-lip child walking out of the hospital with a beautiful healing scar on their chest and a new hope for life. A grateful parent repeatedly telling me thank you in their native language. The nurses I've taught CPR to performing these skills to save a child's life. A mother holding her baby in the ICU, scattered with lines and tubes, noticing my chest scar and realizing that there was hope for her baby's future. I believe my heart desired these experiences to feel whole and I will forever be grateful for being born with CHD.

Speaker 2: 59:22

Rosalind Riviera BSN RN, cpn, bc, was born July 10th 1983 in Los Angeles, california, with partial AV canal defect and she had two surgeries. In childhood, rosalind CHD led her to become a pediatric cardiac nurse. As a nurse, she has worked in 15 US cities and 7 developing countries. She enjoys teaching patients and families about their heart conditions, especially helping her patients learn to take ownership of their health. Rosalind's father was diagnosed with CHD at 57 and unfortunately passed away from complications related to a CHD surgery in 2016. Rosalind volunteers with several CHD organizations Camp Del Corazon, providing year round opportunities for children and young adults with CHD. A CHA as a peer mentor, conquering CHD as a guest blogger, and Hearts Unite the Globe as a medical advisory board member. In her free time, rosalind enjoys camping and hiking with her husband, michael, who is a heart transplant recipient, and their two dogs. This concludes this episode of Heart to Heart with Anna.

Speaker 2: 1:00:36

I hope you're enjoying listening to Meagan Tones and me. Read the heart of a heart warrior, volume 2, endurance. We are starting a brand new book study for this volume. It meets on Thursdays at 5 pm, usa central time. We only meet for one hour. It's kind of like a book club for the CHD community, but we specifically talk about the topics for the essays that we read for that week. Each week we're going over a different chapter and in the fourth week we play a fun jeopardy game where we go over what we might have learned from the book. It's a lot of fun. I hope you'll join us. You can go to babyheartspresscom to read more about the book studies and to get a ticket to join us. I am limiting it to 12 participants so all of us have an opportunity to share our own experiences and stories. Have a great week, talk to you next week and remember my friends, you are not alone.

Speaker 3: 1:01:41

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.