Shattering Stereotypes in the World of Down Syndrome and Congenital Heart Defects

When Ellen Boyer's voice joins the conversation, the room lights up with an array of heartfelt stories and powerful messages. Together, we celebrate World Down Syndrome Day by shattering stereotypes and trumpeting the accomplishments of those with Down Syndrome. From the awe-inspiring feat of Chris Nikic, the first athlete with Down Syndrome to conquer an Ironman triathlon, to the everyday triumphs of individuals leading vibrant, fulfilling lives, our dialogue serves as a rallying cry for inclusion and appreciation of every person's inherent worth.

The legacy of Brett Boyer shines on, as we discuss the foundation in her memory that advocates for CHD research and support, reminding us how one life can ripple through the hearts of many.

Co-editors Megan Tones and Anna Jaworski continue reading from The Heart of a Heart Warrior: Volume 2: Endurance.

Motherhood, with all its joys and challenges, takes on profound new dimensions when interwoven with congenital heart defects (CHD). The narratives of Megan Hanshew, Gwenyth Murphy, and others paint a poignant picture of resilience and transformation. We also celebrate the active lives of those like Tracie Wendorf-Salgado, living with pacemakers yet refusing to be held back, and Kimberly Russell, whose journey through CHD led to the joyous adoption of her daughter.

Join us for an episode that's as much about courage as it is about compassion. Hear the raw, unfiltered experiences of those who not only survive but thrive despite the presence of CHD. Be inspired by Kimberly Russell's volunteer work in education advocacy, and be moved by Tracie Wendorf-Salgado's near-miss on the highway, a stark reminder of the fragility of life and the indomitable human spirit. This is an ode to the tenacity of the heart, both literal and metaphorical, and an invitation to walk alongside these extraordinary individuals through their remarkable journeys.

Links mentioned in this episode:

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

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

Transcript

Speaker 1: 0:00

Joy lives on that extra 21st chromosome. It is not that they are ignorant to life's struggles. It's that there is so much beauty and joy in their perspective that there's so much that we can learn from. I've heard several parents say I don't think they have an extra chromosome, I think I'm missing one.

Speaker 2: 0:25

Welcome to Heart to Heart with Anna. I am Anna Dorske, your host. I'm also our mom too, an adult born with a single vitricle heart and who will be 30 years old in August 2024. That's the reason I'm the host of your program. With me today. I have Ellen Boyer again. I'm so excited for her to return to continue talking to us about World Down Syndrome Day. Ellen is married to Bow 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 congenital heart defect.

Speaker 2: 1:03

Ellen is with me here today to talk about World Down Syndrome Day. This day has been officially observed by the United Nations since 2012. On March 21st, 2024, the 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, megan Tones and I will take turns reading essays from 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 5 to 6 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 back to Heart to Heart with Anna Ellen.

Speaker 1: 2:11

Thank you, I'm so glad to be back with you.

Speaker 2: 2:14

I'm so excited for us to continue the conversation. We had so much fun talking last week about World Down Syndrome Day, but here it is even closer now, so why don't you and I talk a little bit about this? Stop the stereotypes. Request from the United Nations for everybody to do on World Down Syndrome Day, which is March 21st 2024.

Speaker 1: 2:40

I would love to talk about that, the main thing that I think the goal of all of the Down Syndrome community is to recognize that, no matter what they bring to the table, they all are so full of worth, just like everybody else. There are people with Down Syndrome who are running Ironman triathlons. There are people with Down Syndrome going to college every single day. There are people with Down Syndrome owning their own business, being the absolute joy of their family. We even have actors.

Speaker 2: 3:14

There are actors that have Down Syndrome. How do they memorize all those lines? I can't do that.

Speaker 1: 3:20

I think it's amazing, so impressive. There's so many things. I just feel, like with any child that's born, we don't know what everybody's strengths are going to be, but absolutely every single person has a strength and deserves a seat at the table, no matter what they are doing. But we were so fortunate to get to meet Chris Nicketsch. He was the first person with Down Syndrome to complete an Ironman triathlon. He was born with the same heart defect as Brett.

Speaker 2: 3:52

Really.

Speaker 1: 3:53

Yes, he was here in Nashville at one of our fundraisers. He was just the most special guy and really super great family. Can you imagine I would love for him to go back to the doctors that probably put limitations on his life and be like look just like every child. I feel we all have such special abilities that just because of an extra chromosome, we should not be putting limitations on people.

Speaker 2: 4:23

So what kind of stereotypes do you think the public at large has about children with Down Syndrome or even adults with Down Syndrome, for that matter, because they are living to adulthood? When I was getting ready for our program, I was looking up information on the UN website and on the World Down Syndrome website. The statistics are unbelievable how things have changed for people with Down Syndrome over the last few decades.

Speaker 1: 4:51

So much of that is because 50% of people with Down Syndrome have heart disease and now we're treating it better, so they're living longer. The other thing, I think, is that most kids with Down Syndrome are living at home with their family, as they should, and are not institutionalized and are just part of the family unit. When people are valued and loved in their home, their lives are longer and more enriched. I think that that's just a wonderful, beautiful thing to see people with Down Syndrome living in society as they should be, out with everybody else, not in the church basement, not in an institution, working, loving their jobs, contributing to society and being absolutely the best part of it, in my opinion.

Speaker 2: 5:37

Right, but I love that. I love it that you're so positive about it and that each individual has a chance to stop the stereotypes and interesting thing was on World Down Syndrome website they talked about positive stereotypes and negative stereotypes. To just stop all of that and to appreciate each person for who he or she is and not go with preconceived notions about what they're like just because they were born with a certain condition.

Speaker 1: 6:09

Absolutely.

Speaker 2: 6:11

Can you share with my listeners what they can do to help the Down Syndrome community spread the word about World Down Syndrome Day 2024?

Speaker 1: 6:21

The absolute best thing that I could recommend to anyone is that if you are not friends with someone with Down Syndrome, you have got to find a way to get connected to the community. It will absolutely enrich your life in ways that I cannot even put into words. The local Down Syndrome Association, Gigi's Playhouse, Best Buddies, those organizations that you will feel like the luckiest friend that you have ever felt, like 100%. You will get more out of that than that person with Down Syndrome and will really truly feel and see the value of their life. We fear what we don't understand and what we're not exposed to, and this exposure will take the least amount of time to change your heart and your perspective on the joy that is on that extra 21st chromosome.

Speaker 2: 7:15

Let's talk about that a little bit, because one of the things that I read on one of the websites that I was perusing was that apparently it was not uncommon a couple of decades ago for a woman, if she were diagnosed in utero with having a child with Down Syndrome, that they were encouraged to abort those babies. But now, with the technologies that have improved over the last two decades for people who are born with heart defects since we do know 50% of the children born with Down Syndrome will have a congenital heart defect, but not only that so many other things like early childhood education has improved things for people so much that they were saying that that is what is enabling people with Down Syndrome to lead a fuller life. So can you talk to me a little bit more about that, about some of the advances that you have learned about that have been made, and maybe how that has also helped the Down Syndrome community?

Speaker 1: 8:15

I'll start with this. We have a really, really long way to go. I was not presented with much positive at our diagnosis just seven years ago, and there's a lot of people that I know and love who were not given many positive options as well. There are so many resources about how beautiful this community is that are not presented at diagnosis. I don't feel like a choice was given to us. There was only one side presented when we got Brett's Down Syndrome diagnosis.

Speaker 1: 8:54

I feel like the way that we could get around that is getting in front of med students before they have even picked their specialty to show them people living their life with their children and their adults with Down Syndrome and showing them how wonderful their life is and how much absolutely function like a typical family. How much the statistics are wrong about divorce within a family living with a child with Down Syndrome. Those marriages are happier. Giving them all of the proper statistics about how happy people with Down Syndrome are with their life. If you look at statistics about typical people with 46 chromosomes are a lot more unhappy with how their life looks than people with 47.

Speaker 2: 9:38

I wonder what that is.

Speaker 1: 9:39

What do you think that is? It's a phrase that I've heard so much within the Down Syndrome community, but it is absolutely true to me. Joy lives on that extra 21st chromosome. It is not that they are ignorant to life's struggles. It's that there is so much beauty and joy in their perspective that there's so much that we can learn from. I've heard several parents say I don't think they have an extra chromosome, I think I'm missing one.

Speaker 2: 10:07

Oh, wow, that's turning on its head, isn't it?

Speaker 1: 10:11

Yes, we've come a long way of offering people the support they need with early intervention therapies and feeding therapies, surgical treatment with CHD, getting better and living at home with your family, as you should like, we said, but there's still a long way to go. There's a lot of goals that we have in Brett's memory and inspired by her life and inspired by our own experience with her diagnosis, that we're really hoping to join arms with the Down Syndrome Association and with GG's Playhouse and all of the different organizations National Down Syndrome Society, the organizations that exist to love and support these families, give them a community. That's often something I think about a lot.

Speaker 1: 10:59

I'm very blessed that I feel like we've got a very tight-knit family and close community. There's so many people that don't have that in their life and their child with Down Syndrome will make them part of the biggest, most wonderful community that they've ever been a part of. So the thought of someone advising them that that is not what they need in their life is heart-breaking to me. That is heart-breaking Because there's so many people that I've met like this is their tribe, this is their community. Now we all can't imagine our lives without each other. There's so much joy that I'm so grateful is a part of my life that I can't even think about if I had chosen for it not to be.

Speaker 2: 11:41

I loved looking at your website. Why don't you share with us some of the wonderful things the Brett Boyer Foundation is doing? Because I was astounded she would be seven years old today and what you have done in seven years is just amazing.

Speaker 1: 11:57

Thank you. One of my big fears after we lost her was I never wanted anybody to hear our story as they received a Down syndrome diagnosis and to think that that's what's gonna happen to them, because we didn't lose her to Down syndrome. We lost her to CHD and, like I said in the other episode, down syndrome doesn't need a cure. Down syndrome does not need a cure. Chd needs a cure. Our primary financial goal is to fund CHD research that could have made a difference in her life and that could make a difference for all of the one in 100 with CHD, whether they have Down syndrome or not so many more kids affected with CHD that don't have Down syndrome but also to love and lift up the Down syndrome community and really show people there's absolutely nothing to be afraid of and so much to celebrate.

Speaker 2: 12:49

Well, let's talk about celebration. Let's talk about a white pony celebration and what that means to the Brett Boyer Foundation.

Speaker 1: 12:59

It's just such a wonderful place of respite and joy and happiness. My dear, sweet, wonderful sister-in-law, caroline, loved Brett just as Bo and I do. When I was pregnant with her she was picking at my husband, her baby brother, and said that one day she was gonna get Brett a white pony. And the funny part about that is that Bo and I have about a tenth of an acre of yard. I was like where's the point in the house with us? Which he was like don't joke with her, because she will totally do it, because she's right there, just the best.

Speaker 1: 13:34

When things got really scary and we were in the hospital, Caroline and Luke were there with us through that journey and she said I'm gonna find you that pony, I promised it to you and I'm gonna get it for you. And shortly after Brett passed, caroline is such a nurturer and she wanted so bad to help us and to find a way to honor Brett and she rescued a beautiful white pony and she created Brett's barn in her honor and it's been this place. Like I said, we called Brett our queen bee. There were bees flying everywhere around there and we felt her there and so now it's turned into almost 30 rescue animals and definitely our goal to share that joy with the CHD and Down syndrome community, to be a place of respite where everybody can be together as a family and escape hospital life and hope that it brings people as much joy as it has for our family.

Speaker 2: 14:27

So this will be a place that people can visit with their children or where the communities can gather together.

Speaker 1: 14:35

That is our hope. We've just got a couple of dances around, some zoning things, and we definitely got plans to be able to bring people. We've already had some events with GG's Playhouse, the Down syndrome Association of Middle Tennessee, that we've had auction items where we're able to host smaller groups that we can manage. It's definitely our goal to make whoever wants to be a part of it to be able to come visit.

Speaker 2: 14:59

And I saw you have some jewelry for sale on your website as well. Tell us about that.

Speaker 1: 15:04

We do. There's the most generous local jeweler here in Nashville that created our logo for Brett. So they're all queen bee necklaces and earrings. They've made bracelets out of it. They do all kinds of custom stuff. But all of that helps us fund our mission of funding CHD research and supporting and celebrating CHD and Down syndrome community.

Speaker 2: 15:26

And who are you working with? As far as the funding goes, I don't remember seeing that on the website. I did see something about you wanting to fund research. I just didn't see the particulars about it Welcome.

Speaker 1: 15:39

We started the foundation in 2017, the same year that Brett passed away, and Brett was treated at Vanderbilt Children's, and so initially we were funding research only here, locally, because we love and adore that hospital and there's so many wonderful people there. But as we grew, we realized we had an opportunity to fund research nationally, and so we, in 2018, got our first medical advisory board, where we've got different specialists within the cardiology community, from cardiac ICU intensivist to fetal echo surgeons from all over the country that have helped us evaluate projects that we funded, and so this year we funded over a million dollars of research already Wow.

Speaker 3: 16:22

That's amazing.

Speaker 1: 16:23

Yes, and every year we get more submissions. This year was the strongest that we've had so far and it's just also motivating to me each year to hopefully do more and more. That's amazing. We sat down with our surgeon who connected us. Dr Metler, whose name is Brett as well, is who Katie is to assistant and she is gold.

Speaker 1: 16:49

It was like, seriously, a month after Brett passed away and we sat down, it was me and my husband Bo, caroline and Luke and Brett and his wife Kelly and I said what did you need to save her life? And he said, well, she needed a mitral valve replacement. They don't make them small enough for her. And I was like, wow, you know, like in my non-surgical, non-medical mind, I'm like just make them smaller.

Speaker 1: 17:15

He used kid gloves with me because it's harsh to hear, and he was like no company wants to take on that liability to create it for only so few kids. And we were like what? And he was like, basically, ellen, there's no return on investment and they're not willing to. And he goes and kids can't vote and kids don't pay taxes. And that is the hard truth. I'm sorry, I mean honestly, what kicked us in the butt that we were like return on investment. We're in this for return of lives, so we will fund it. That was really the birth of the foundation that Thoe and Caroline and Luke knew that if I didn't find some positive way to pour my love, that it was going to take me with her. I'm so proud and motivated that we have this opportunity to help people, although, of course, I wish Brett was still here to be our little like look what research can do. But I'm so thankful that there's been such progress even since she was here.

Speaker 2: 18:14

I'm so impressed with what you've done. It just seems to me God gave you Brett because I knew in your heart that you would love all the brets that are out there. You would love all the children out there and you could give so much to the community. It just hurts so much to think that you didn't get more time with her.

Speaker 1: 18:34

Thank you, I do ache for more time with her, and February 21st was seven years. I think it's a natural part of grief to be angry that I didn't have more time. But every time that I get into that rut and get you know like, oh man, I know that so much good has come from her life, but we had so many people praying for miracles for her and I think of what if she was just this walking talk billboard of that? And there's just some things our minds are not built to understand and I always wake up with this beautiful, tender mercy that I'm not going to understand in this life. And I've been called to trust and I try, I tried to do it. Our pastor said to us right after if your child's mad at you, does that make you not love them? If they shake their fist at you until you know and we were like I mean, no, that wouldn't make us think it was like. You are God's child, he can handle your anger, and so I've tried to embrace it a little bit and then move forward.

Speaker 2: 19:42

Ellen, I'm so thankful for you and for the Brett Boyer Foundation and all you're doing to try and help conjure heart defects and raise awareness of Down syndrome. Friends, if you have social media, please put a note on your social media. Don't forget about World Down Syndrome Day. Have a chance to destroy the stereotypes and to love each person for who they are individually. Thank you so much for coming on the program today, Ellen.

Speaker 1: 20:10

Oh, thank you for having me and for letting me say Brett's name. It's my honor and privilege every time that I get to talk about her.

Speaker 2: 20:17

Well, she's a very special little girl and she has an amazing family that is supporting her. It's amazing how one special little human being has brought so much light into this world. So thanks again, friends. That does conclude the interview portion of the podcast. We'll take a short break and when we come back you'll have a chance to hear my co-editor, mika Tones of me read from our new book, the Heart of a Heart Warrior, volume 2, endurance, and you'll will be hearing us read Chapter 6.

Speaker 2: 20:47

The Heart of a Mother was an anthology similar to this one that I started working on in the 1990s when, communicating with other heart parents, I told the same stories repeatedly, stories of hope and healing. My friend and fellow heart mom, jane Hunt, told me I needed to put a book together and before I knew it, over 100 women had reached out to me online to share their stories. One chapter in the Heart of a Mother is Mothers with Congenital Heart Effects. It was one of my favorite chapters to work on. Just the title itself gave me hope. That there were women out there. Women like my child who had achieved motherhood gave me so much joy. Not all the women could have children. Naturally, some women adopted, but that in no way made them less than a mother. If anything, it made them extra special mothers because they had to go through the adoption process, which is no mean feat.

Speaker 2: 21:41

What I love about the upcoming chapter on motherhood is that it contains essays that tell about so much more than motherhood. In Carla Deals' essay we learn about her achieving motherhood not once, but twice. How does a woman with a serious congenital heart defect achieve such a feat and desire to do it a second time? Even some women with healthy hearts sometimes decide that the work entailed to carry and then care for a child is too much. How much more difficult is it for someone with a serious CHD?

Speaker 2: 22:12

Megan Henshaw's mother was one contributor to the Heart of a Mother. Shiloh Henshaw wrote for the Moms in the military chapter and she talked about the challenges of raising a daughter with a serious CHD while her husband was in the Air Force. Megan's essay is an homage to her mother and a memoir of her own venture into motherhood. We certainly see Megan's own growth as a woman and her and her mother changing from a mother-daughter to a mother-mother relationship. What I absolutely love about Gwyneth Murphy's essay is how it's two heart-mom stories in one. Not only was Gwyneth born with a CHD, her mother was as well. Gwyneth's essay takes us back and forth through time when CHDs were almost uniformly fatal, how this woman's relationship with her mother blossomed over time. Gwyneth shares the lessons they have learned in this touching essay.

Speaker 2: 23:08

Kimberly Russell knew from an early age that she would adopt her daughter someday. In this essay she shares an excerpt from her book in a heartbeat and tells us her adoption story. The chapter concludes with a essay by Tracy Wendorf-Tagato about a life-changing experience she had as a mother. Sometimes mothers need angels in our corners, and Tracy was lucky enough to have one in hers one day when she and her son could very well have lost their lives. If you need some inspiration, you won't want to miss Tracy's essay. Motherhood and CHD by Carla Deal.

Speaker 2: 23:45

As a woman born with a complex congenital heart defect, one question can easily loom over all others as we grow into womanhood Can I successfully have a baby? One question might not necessarily enter one's mind, though Is it possible that a pregnancy just might save a life? I was born with Tetralogy, flo, tof in 1984, and had a total correction for TOF at nine months. After being told this operation fixed me, I stopped being seen by a cardiologist when I was six, just before I was 18, I asked to go back and see the cardiologist. Deep down, I knew something wasn't right. Sure enough, during that appointment I learned that there are no fixes or cures for CHD. I always had been, and will always be a CHD patient.

Speaker 2: 24:36

I began being followed by a pediatric cardiologist. It was a chilly January morning when I learned I was going to be a mom. My pediatric cardiologist had been having the talk with me since my reintroduction to care when I was 17. It was the. You should consider having a baby while your heart can still tolerate a pregnancy talk. I know, not your usual late teen chat, is it? By 22, I was expecting my first child. Will I be a wonderful mom? Am I financially prepared for this? What are the best parenting books?

Speaker 2: 25:09

While I shared those common new mom concerns, there are unique issues when you are a CHD patient. Will my heart tolerate this pregnancy? Will my children inherit my CHD? Will I have the energy? My cardiologist reassured me that all would be well and the only recommendation for my pregnancy was to receive an epidural during labor. So I chose the NoBGN at the nearest hospital. Who wants a long drive when she goes into labor. Like many expectant mothers, I had plenty of questions and concerns. Some were common and answered easily. However, the questions I had that concerned my CHD remained unanswered. At one point my cardiologist even admitted pregnant women scare the hell out of me and there's so much I just don't know. To our joy, my husband and I welcomed a healthy son.

Speaker 2: 26:02

Then, on a January morning two years later, we were expecting again. This time I knew something was wrong with the care I received during my first pregnancy. That same gut feeling drove me to seek answers. After receiving a referral from my primary care provider, I saw a general cardiologist. This cardiologist took one look at me and said he wouldn't take me on as a patient. He referred me to the adult congenital cardiology clinic. I never knew there were cardiologists who specialized in treating adults with congenital heart disease. During my first appointment with my adult congenital heart disease ACHD cardiologist, I was introduced to the Adult Congenital Heart Association. My ACHD cardiologist also taught me more about my prognosis In one appointment that I had learned in seven years from my pediatric cardiologist. She referred me to a high-risk OB-GYN who had a lot of experience treating patients with CHD.

Speaker 2: 26:59

My new OB-GYN wanted to know if my medical team took any special precautions during my first pregnancy. I shared with her they had given me extra fluid in my IVs to help my heart flush things out. To my surprise, both my OB-GYN and her nurse in the room were stunned. Their jaws dropped before they gathered their composure to inform me what a terrible mistake my previous OB-GYN had made. That extra fluid could have overworked my heart. My stomach turned when the nurse bluntly said I could have died. They assured me they would do the exact opposite, measuring my output. With great delight we welcomed our second healthy son.

Speaker 2: 27:40

As it would turn out, I found myself in proper care just in time. Our sons were just four years old and one year old when my ACHD cardiologist said it was time to replace my pulmonary valve. Frankly put, they don't perform open-heart surgery because you're well. The months before my operation were as physically challenging as they were. I went into that surgery knowing it would save my life or take it. I spent the weeks before it preparing for either outcome. It's difficult to put the evening before my surgery into words.

Speaker 2: 28:13

My surgery eve made a greater impression on me than the surgery itself. I made sure I put the boys to bed myself. The best case scenario was that I wouldn't be able to do this by myself for about eight weeks. The worst case was that it was my last opportunity to hold them. Some may think I was being negative, admitting that to myself, or even unwise, but I don't think I was at all. It was a possibility and a possibility I was going to prepare for.

Speaker 2: 28:41

If this was my time, it was going to be a special time spent with my babies. I held my one-year-old until he fell asleep and cried when I had to put him in his crib. Pulling myself together, I fought the lump in my throat as I read my four-year-old's story and played with his hair while he fell asleep. I wept and prayed over them as I savored every minute I could that night. Early morning came and I took one last peek at my sleeping babies before my husband drove me to the hospital After being prepped. We said See ya later. Then I was wheeled into the operating room. My wonderful surgeon took my hand and said Don't worry, I'm going to get you home later. To those boys, in his wisdom, he said the one thing he knew would motivate me the most In kindness, he brought the most precious people to mind just before he gave the anesthesiologist the nod to put me to sleep.

Speaker 2: 29:34

Recovery from open-heart surgery with two little ones may be the hardest thing I will ever do. I will never get back the seven weeks I couldn't hold my baby or the ten weeks before I could hold my four-year-old. I often wonder if I would have found proper care in time without that second pregnancy. Perhaps, however, motherhood brought me to the proper care that every CHD patient needs. Motherhood saved my life. I'm thankful for that season of my life and for all the people who helped my family during that time. I'm forever thankful for the ACHA, my ACHD cardiologist medical team, husband and, most of all, my precious boys.

Speaker 2: 30:16

Carla Deale is a Tetralogy of Fallot patient living in Uly, florida, with her husband and their two children. She had her first open-heart surgery for a total correction for Tetralogy of Fallot at nine months, followed by another to replace her pulmonary valve at age 28. At age 38, she had a heart catheter to replace her pulmonary valve. She recently moved with her family from Washington State to Florida. She has embraced her new home by learning how to surf so far. She's fantastic at falling off the surfboard.

Speaker 3: 30:48

Like Mother, like Daughter, by Megan Handshugh. My water broke. I said to my mother what it's too soon. She exclaimed that was the beginning of a six-week stint in the hospital while we waited to see how long I could keep my son inside of me so he could continue growing and developing as much as possible. It's hard to believe that happened 13 weeks ago.

Speaker 3: 31:14

Seven weeks ago I gave birth to Charles A few weeks before I was told I would have to be admitted at some point because I did not have enough amniotic fluid to go to term. At 24 weeks gestation my water broke and I went into the hospital. The first three days I had IV, antibiotics and three iron infusions and three different, separate IVs. I told the nurse I needed a smaller needle with my IV and they'd finally listened. They did an ultrasound every Friday until I started having contractions. They weren't consistent contractions, but that they held off until four weeks after my water broke was pretty amazing. Fast forward, two more weeks and he was born at 31 weeks in three days, two months early. He was in the neonatal intensive care unit, nicu, like I was as a baby, but his stay was longer, 30 days compared to one week. But that was just the beginning of our journey.

Speaker 3: 32:19

While in the NICU Charles was on antibiotics and nutrients through an IV for the first four days and on continuous pulmonary airway pressure CPAP for the first five days. He got fortified breast milk for the first three weeks, then got put on 24 calorie formula. When Charles came home he was off his feeding chip and was having no issues. After the first few days of being home I noticed when Charles would eat he sounded congested. It all went downhill from there. After a week and two days at home Charles got admitted into the hospital for breathing issues and they put him on four litres of high flow oxygen O2 at room air. By 7am the following day Charles was on 12 litres and since there was no change in his condition, they sent him to the PICU where they put him back on CPAP. After being in the PICU for a day and a half Charles had his feeding tube back in, but after a week he started having issues with feeding. About a week into the hospital stay Charles had a swallow study done that showed he had micro-aspirated and had dysphagia. Despite all these issues showing up, charles was improving. He got down to one tenth litre of regular oxygen and was ready to go home two weeks later. Devastatingly, that night, after spitting up, charles choked and aspirated His amazing nightnose saw Charles's breathing change drastically and put him back on four litres of high flow at 30% oxygen, since he was having trouble breathing room air. Since Charles couldn't handle nasogastric NG feeds anymore, his tube got moved to a naso-gejouinal NJ tube. A week later, things were looking up. Charles was on two litres of high flow room air, but his tube curled into his stomach so that had to be fixed and Charles was on antibiotics for aspiration pneumonia With no end to being in the hospital. Inside life got tough until Charles was off all respiratory support, but then his tube curled again. After they fixed that, they put him back on high flow room air for four more days. He was almost ready to come home. His medical team didn't want to send us home with an NJ tube, but did anyway. They discharged Charles on August 3rd 2018.

Speaker 3: 34:50

While in the hospital, I constantly advocated for him. I would tell the doctors every day something more was going on, but when they finally listened to me, it was almost too late. Every morning when Charles was sick, the doctors would come in and turn his oxygen off and his oxygen saturation level would drop into the 80s. I kept telling them it was more than just him being sick and finally the doctors listened to me. When he got a fever they discovered Charles had aspiration pneumonia. I don't think the doctors would have found out if I didn't keep mentioning there was something more wrong every day.

Speaker 3: 35:28

This reminds me of all the stories my mum told me of my time in the hospital as a baby. My mum had to explain that my oxygen was low because of my heart and the doctors wouldn't listen. But once the doctors finally realised it was my heart, I got the care I needed. My mum was my biggest advocate even when I was a teenager and we had moved and she had to explain my surgeries for tweaks, specifically for my heart, but my pediatrician wouldn't listen. Being an advocate for myself now can be hard, but I now have to be strong because Charles is depending on me. Megan Henshaw was born March 19th 1996 in San Antonio, texas, with tricuspidotresia. She was born with no tricuspid valve and no right ventricle. Megan has had three heart surgeries and several procedures in order to live with a single ventricle heart. She grew up in a small town in Texas called DeHannis with lots of dogs, cats, and she even took care of cattle on her ranch until she moved to Washington State 13.

Speaker 2: 36:36

Live your Life with CHD. By Gwyneth Murphy. When I initially signed up to write an essay about my mothers and my experiences with congenital heart defects, my mum was getting ready to move in with my family and me A big step for anyone that knew her. Fiercely independent to a fault is a good way to describe both of us. She absolutely loathed feeling as though she was a burden to anyone. Even though she tried many times, she never learned to drive. She just never could get past the anxiety. Instead, she took public transport independently until her mid-60s, and then she had a cardiac event that ended up making walking difficult. Since she was unsteady, I started taking her to her appointments, which she felt bad about. Our cardiologists solved the issue by simply coordinating our appointments and echoes. They were the same day, one right after the other. When my mum moved in in August 2018, neither of us expected she would be gone by the beginning of January. To get to that January, we need to start with when she was born.

Speaker 2: 37:43

My mum was the oldest of eight children born in a small town in Wisconsin in 1949. Back then, the technology simply wasn't there to identify her heart defect. I remember grandma telling me once that the doctor who delivered my mother said nothing about her heart. It wasn't until a few months later that anyone even mentioned there was something wrong. They could not figure out what it was, and so they did what was the norm for decades to come. They took a wait-and-see approach. The theory mother remembered the cardiologist proposing was that maybe she had been a twin and there was a mirror effect causing the weird heart sounds. Maybe she had tetralogy of fallot. In any case, she spent summers going on the train to Milwaukee to see the cardiologists there and undergoing catheterizations, which were considered major procedures, not relatively standard as they are now. Finally, around 1979, technology had finally advanced enough that doctors could finally diagnose what was wrong with her heart congenitally corrected transposition of the great arteries with associated atrial septal defect, asd, ventricular septal defect, vsd, pulmonary stenosis and aortic stenosis CCTGA with all the bells and whistles was how she described it.

Speaker 2: 39:09

In June 1976, my mom had her one and only open heart surgery, ohs. I don't know if they just did things to last or if she was just that stubborn to not need another repair. In 1976, heart-lung bypass machines were still relatively new, especially in small-town hospitals, so it was a big deal to have this surgery. Now for her defect. People can opt for the double switch operation. In the end they patched a dime-sized ASD. They left everything else alone, deciding that they worked for her heart, as was the norm back then. They declared her fixed and sent her out to live her life, seeing a cardiologist only once a year or so.

Speaker 2: 39:57

My mom lived her life, which showed me how to live mine. I was born fifteen months after my mom's OHS. I was born at thirty-one weeks gestation. Ultrasounds during pregnancy did not happen too often and fetal echoes were unheard of Her. Doctors had planned on a scheduled cesarean section, but I had other plans. The doctor had to use forceps because I was in distress and I was small. I was born just three pounds and three ounces, with apparent heart issues. Two things happened when I was born, things that I heard repeated over and over enough as a kid that they are ingrained. One, the doctor informed my grandparents that while my mom would be OK to not hold out much hope for me, they really did not expect me to make it through the night. Second, the team had my mom's cardiologist paged out of a keynote address he was giving at a cardiology conference to decide if they needed to helicopter me to Children's Hospital in Milwaukee. Apparently. Once he heard whose baby it was, he said oh, she'll be fine, like her mom. That independent, stubborn streak is strong. They ended up not sending me to Milwaukee. I spent two months in Theta Clark and ICU before coming home at just over five pounds. As with my mom, they opted to take a wait-and-see approach for me.

Speaker 2: 41:27

While my mom's defect was more structural, mine is primarily electrical. My primary heart defect is congenital complete heart block or a third-degree AV block. In my 30s my cardiologist determined my aortic valve to be a bicuspid valve. Mine has three leaflets. Just one is undersized, infused to another. Now it's a standard of care for babies with my defect to have a pacemaker implanted. However, in 1977, it was not possible to implant a pacemaker into a three-pound baby. After all, they had only developed the first pacemaker with a lithium battery in 1974. It was the size of a pack of cigarettes. So we waited.

Speaker 2: 42:15

While I say I got lucky, I mean very lucky. My heart had an escape rhythm. The way complete heart block works is this the upper and lower chambers of the heart can't talk to each other, which can result in cardiac arrest. The body has a backup pathway in the ventricles, but mine meanders on its own way. I heard it described at a conference once as the atria beating along as it should. A ventricle follows along like a cymbal player. Oh yeah, I should do something. My backup ventricular pacemaker chugged along while we waited for devices to get smaller and more stable and for me to get bigger. I stayed very petite for a long time, probably because of having a heart rate in the low forties and thirties. It excited me in eighth grade when I broke 80 pounds and in high school when I finally broke 100. While we waited, my mom and I just lived. I learned to listen to my body as far as my limits, just as my mom did. I learned that having a heart condition was secondary to me as a person.

Speaker 2: 43:21

When I was eight years old, we moved to Milwaukee, which until that point had always just been a place my mom visited as a kid for heart checkups. In December, we would walk to the lakefront for a variety of ethnic festivals Irish Fest, german Fest, african World Festival, all of them. Irish Fest was the one we visited every day when it was open. The walk to the festival grounds was easily two miles and we probably walked five to ten miles back and forth on the festival grounds every day. We walked everywhere, across a long bridge to the library downtown, to the museums and from a bus stop into the baseball stadium. We walked a lot From age 12 on.

Speaker 2: 44:04

My cardiologists started checking each year to see if this was the year I remained stable until my senior year of high school, although in hindsight I do not know how I managed. I definitely did not have a normal high school experience. I was in bed by 8 pm every night and could easily sleep sixteen hours, but that was my normal. As long as I was okay with it and stable. We put off the inevitable. It was probably all the walking that kept us both in good cardiac shape for a long time Along.

Speaker 2: 44:38

With some luck we were able to wait until pacemakers had come down a lot in size and had better lithium batteries. I was 18 and just about to leave for college when I got my first device. College would have been impossible without getting my device, and the longer we waited at this stage, the more likely I was to have a stokes-atom attack or other complications. While my stubbornness had gotten me that far, my pacemaker would get me even farther. The biggest change for me initially was that a fog had been lifted. I could stay awake past 8 pm. That was a change. I had no problem walking for miles, but I could never run far. Now I could at least attempt it.

Speaker 2: 45:23

At some point a cardiologist told my mom that she no longer needed to see him. She was not even supposed to be alive and so whatever she was doing, she should just keep doing it because it was working. So she kept visiting the festivals, hosting enormous feasts for friends and feeding roommates and friends I brought home for Thanksgiving. I don't think she saw a cardiologist again until I found out about a new specialty for adults with congenital heart defects. In my mid-20s she had to be dragged to the first appointment. I had found the subspecialty by a combination of pure chance and frustration. As an adult I needed a cardiologist because my cardiologist had passed away. After being told similar things my mom had been told by regular cardiologists I had seen Attempted to Establish Care. I got frustrated and called Children's Hospital of Wisconsin. I was told that they had a brand new program just for adults with congenital issues. So I made us both appointments.

Speaker 2: 46:24

My mom was pretty well sold on the idea of never seeing another cardiologist by that point, but she went. When he wanted to do many things and finally go in and fix the valves and VSD that were never fixed during her original repair, she told him absolutely not. My mom got her way. She would tolerate putting in a pacemaker implantable cardiac defibrillator, icd COMBA device, but that was it. Somewhere in all those years of not seeing a cardiologist, she had developed complete heart block, common for CCTGA patients and AFib. She grudgingly started medications and would tell me they helped, but she didn't want to admit it to our new cardiologists. She didn't want him to be right.

Speaker 2: 47:08

Finding a doctor who understood us and our issues extended my mom's life With medications, a pacemaker and follow-up. She kept on doing the things she loved, like the festivals, reading a rereading token and making fancy menus for feasts and friends. My mom and I were always close and I often helped with the food preparation for the fancy menus and we always went to the festivals together. My mom taught me through showing me that my heart condition was secondary. It is just a part of you but does not define you. Sort of like finding Dory you just keep swimming. That's what she did and what I did.

Speaker 2: 47:46

Just before Thanksgiving 2018, my mom suddenly got really puffy and full of fluid. While, according to her medical records, it was surprising that she was doing as well as she was, she had never gotten puffy and swollen While she was in the hospital. For this. She made a rounding resident chuckle because she told her she had to get home, why she had to make the Thanksgiving pies from scratch. Of course, I don't think I ever ate boxed food until I was on my own at college. The resident thought she was joking, but she was completely serious With that stubborn streak. She got enough fluid off to get discharged. She came home and she showed me how to make the pie crust and the fillings for the pies. Again.

Speaker 2: 48:26

She ended up going back to the hospital for another brief stay a few days after the holiday, but came home and we filled our days making cookies and bread for my husband and son. Christmas candy for the holiday was our routine. We would get up, get my son off to school and then plan what we would make that day for our boys. On the day that she passed away in January, that is exactly how our day started. I was going to try to get some things done around the house, but I was tired with that kind of exhaustion that only CHDers understand. She planned to make some chocolate chip cookies for the boys at around two in the afternoon. She chose that time so they would still be warm when they came home from work and school. That's what she did and all seemed to be the saddest que that we had become used to. I was starting dinner and she was on her third batch of baking cookies.

Speaker 2: 49:18

We sat down for our break. It was sort of a joke amongst us we have done some activity and let's rest a bit. It was something we had done thousands of times throughout the years. This was part of the knowing-your-limits advice that my mom taught me I needed to take frequent breaks. So we sat down for our break. My mom mentioned she might want to go to the hospital once everyone got home because something was off. I went to get my phone from the kitchen to check something. By the time I came back she had collapsed on the sofa. I called the paramedics, but I knew they worked on her for a long time, and then I took her to the nearest hospital, not our usual one. I knew before they left she was gone, but of course I didn't want to believe it.

Speaker 2: 50:05

Until the very last moment, my mom was living her life. I was not expecting this to happen. I knew at age 69 and a half my mom was not old, but it was surprising for someone with her bells and whistles defects to live as long as she did. She had really been looking forward to turning 70. I think that was her goal just to make it to 70, and then she would be ready to go. Even though it was sudden, it was best for her. Our cardiologist even commented that her quick passing was the best way for her to go. A long illness in the hospital would not have been what she wanted.

Speaker 2: 50:42

In hindsight, I think it was that same stubbornness that got her home from the hospital and kept her from going back until it was time for her to shuffle off this mortar coil. To use one of her phrases, my mom lived her life doing what she wanted, until the very end. Backwards. A weird heart be damned. I will continue to live my life as she taught me. I think that is really what all patients with congenital heart defects should do live their best lives. Even if it is sometimes hard to push through, each day, value the small things like baking a loaf of bread from scratch or making cookies for loved ones. Take my mother's advice live your life. Gwyneth Murphy is a second generation CHD survivor, born in 1977 in Nina, wisconsin. She graduated from Beloit College and currently lives in Milwaukee, wisconsin, with her husband Joe and son Tyler. She enjoys photography, various fiber arts and other creative outlets. She is also working on finishing her mother Sharon's last project, a cookbook of family recipes.

Speaker 3: 51:47

My adoption story by Kimberly Russell. From as far back as I can remember I have known that I could not give birth. Here is an excerpt from Inner Heartbeat, the book I wrote about growing up with congenital heart defects. Because of the type of heart defect Kim has, there is quite a bit of pressure in her arteries. Cardiologists are recommending that children with this heart defect not bear children. Between the lack of oxygen and the high blood pressure in her heart and lungs, the lives of the mother and baby would be at risk. My cardiologist explained Betty. My mother blinked instead at the doctor. What was he telling her? Her daughter could not have children. Growing up, getting married and having children for every girl's dream. She frowned and leaned forward in her seat, trying to make the doctor realise what he had just said. Did you say no children? The cardiologist positioned himself so he could look my somewhat stunned mother in the eye. First he called her by name. Her head moved towards him. I did not say that Kimberley could not have children. I said she should not give birth to children. Adoption is a very precious means God uses to get the right children to the right families. It is a wonderful fact of life. His words were so true.

Speaker 3: 53:17

Before my husband and I became engaged, we talked extensively about the seriousness of my heart condition and the fact that there was no guarantee of how long I would live and that we would adopt instead of having children. Naturally, I know your medical situation. There is no way to predict the future for anyone. God has taken care of you so far. Why not enjoy what we have and wait and see together? As far as children, adoption is a great idea. Like you said when you were little, God has a special little girl picked out for me. You don't need to worry about any of that. I know all about the baggage and, yes, I love you Just like that. We were engaged and later married.

Speaker 3: 54:01

Ten months later, we got a phone call. Hello, Mrs Russell. Yes, I replied with a curious tone in my voice. You don't know me, but someone you know told me you are interested in adopting a child. This brought me right out of bed and onto my feet, while my husband woke up somewhat dazed. Are you still interested? That was the beginning of our adoption process.

Speaker 3: 54:29

The birth mother was only four and a half months along and would give birth in November. This gave us time to prepare. One of those preparations was doing some brief interviews of people that had been adopted. The questions were how old were you when you found out you were adopted? How did that make you feel? An overwhelming reaction by people who found out in their teen years was resentment and lack of trust. They lied to me all these years. One lady responded. This helped us in our decision to make the adoption open and natural From inner heartbeat.

Speaker 3: 55:06

The soon to be parents were busy finishing the details in the nursery when the phone call came. Their daughter had been born. They could pick her up in two days. Two days later, the young, excited parents arrived at the hospital to pick up their little girl. Kim commented on how surprisingly calm she felt. That all changed the minute the hospital of doors opened and she saw her new baby girl. She broke out into tears as the nurse handed her tiny daughter over to her. The proud father grinned from ear to ear, breaking into his own tears while staring at this newtled member of the family. Thank you, Jesus, for our little girl Stephanie. The joy of receiving and raising this young child was incredible. She has always been daddy's little girl and a thrilling joy in her mother's heart From the time she came home, adoption was an open and natural topic.

Speaker 3: 56:05

Stephanie never really asked questions, so when she was seven, we explained what adoption meant. God wanted you in our family and mum could not give birth, so he let someone else give birth to you. Stephanie was satisfied with the explanation. Although it was a natural and open topic, adoption was never really a topic of discussion. When I tell this story, mothers will sometimes give me a pat on the shoulder and tell me I'm sorry you could not give birth. My typical reply is I'm sorry you didn't adopt because they are two unique experiences and I would not trade my daughter for the world. Adoption is an outstanding option for anyone who cannot give birth.

Speaker 3: 56:52

When my book first came out, I talked to a girl who found out after she was married that she could not give birth. I gave her a copy of Inner Heartbeat to let her read about our experience of adoption. A few years later I called to check on her. Kim. They really are my very own, just like you said. Now my daughter Stephanie has grown and out of her own. She married an older gentleman with a ready-made family and blessed us with three grandchildren and six great-grandchildren. We love them all. As a 62-year-old survivor of double inlet single left ventricle, DILV, tallen, rastinosis and chronic cyanosis, Kimberly Russell has written her story about growing up with a congenital heart defect in her book Inner Heartbeat. She and her husband volunteer at Eggleston Children's Hospital, both in their inpatient programs and Camp Braveheart. As a former board member for the Adult Congenital Heart Association, she started a local CHD group in Atlanta to promote CHD education, social events and fundraising for the scholarship program. She and her husband live in Atlanta and enjoy traveling, reading and spending time with their grandchildren and great-grandchildren.

Speaker 2: 58:13

That was great. There was only one mistake it's not Eggleston, it's Eggleston's.

Speaker 3: 58:18

Eggleston. I thought it might have been, but there weren't two G's so I thought I don't know.

Speaker 2: 58:23

I'll read that again. I know American English is a mess.

Speaker 3: 58:28

Oh, so is Australian English. There are so many weird pronunciations of things. You know, when you get a GPS for your car it says things really weird. So we have a lot of strange words in Australia, two particularly place names. A lot of them are Aboriginal so it's not intuitive how you pronounce them.

Speaker 2: 58:53

You don't have to read the whole bio, you can just start where she and her husband volunteer at Eggleston Children's Hospital.

Speaker 3: 59:00

Okay, I'll just reread that bit. She and her husband volunteer at Eggleston Children's Hospital, both in their inpatient programs and camp Braveheart. As a former board member for the Adult Congenital Heart Association, she started a local CHD group at Atlanta to promote CHD education, social events and fundraising for the scholarship program. She and her husband live in Atlanta and enjoy traveling, reading and spending time with their grandchildren and great-grandchildren.

Speaker 2: 59:42

Mommy Mommy, I thought you died by Tracy Wendorf Sagato. It was a Monday, but it wasn't an ordinary Monday. It was also the first day of summer break. I had been looking forward to a break after a long year of teaching middle schoolers who are deaf and hard of hearing. They had also informed me I was being laid off because there weren't enough students to justify my position. No problem, I knew God had it under control. I had spent the weekend setting up and racing in the local triathlon. It was an Olympic distance race and I had finished in my usual middle-of-the-pack place. Sunday had been a great day, but now it was Monday.

Speaker 2: 1:00:21

Just before 8 am, I was driving down Highway 16 in town with my son and our family dog. Since it was around the time, people needed to go to work. The road was busy. It was a three-lane highway running north and south, three lanes each direction. We were in the far left lane. That's important to know.

Speaker 2: 1:00:42

My son, john, was eight. We were on our way to the eye doctor for an appointment for him. His teacher had expressed concern just before school ended that he was having issues of reading, not being able to see words correctly. We had been to an ophthalmologist, but she had some concerns and sent us to a specialist, someone who works specifically with children's vision issues. But that's really neither here nor there. What's important is that, despite my son being only eight, he kept his wits in a very dangerous and scary situation. We were driving down the highway on our way to the appointment.

Speaker 2: 1:01:17

It was Monday morning, busy. Like I mentioned, we were in the far left lane of three lanes. Suddenly I couldn't breathe. I didn't know what was happening. My chest it hurt, but not in a painful way. It was like someone was inside my trachea and slowly punching it but then letting it go. A pinching pain and without breath. Last thing I remember before seeing a firefighter was grabbing my cell phone, tossing it in the backseat to my son and saying Call. My eight year old son later told me. I slumped over into the passenger seat and the car slowly made its way through rush hour traffic before somehow coming to an easy stop along the curb in the right hand turn lane. We went from the far left lane and crossed three lanes of traffic to stop in the right hand turn lane. To this day I have no idea how it happened to the kind of traffic we were in that morning. It still makes me shake my head in wonderment. I say it was an angel.

Speaker 2: 1:02:18

Suddenly there was a firefighter tapping on my window. I slowly picked up my head and looked around, wondering what the sound was, who he was, where I was, what happened? He rapped again ma'am, ma'am, are you okay, open your window please? I saw the bumper of a semi flyby. Slowly I sat up. I heard my son in the back mommy, mommy, I thought you died, mommy. I looked around, still so confused I did not know what was happening.

Speaker 2: 1:02:48

Time seemed to go in reverse. It was so slow, words were garbled, voices were hard to understand, everything was so bright. Ma'am, I need you to open your window, please, now, please. I pushed the button and the window went down. I went out again. When I came to again, I was sitting on a curb and the firefighter was next to me. He was forcing me to take a pill of some kind Baby aspirin. I learned later he thought I was having a heart attack. No, not a heart attack, kind, sir.

Speaker 2: 1:03:21

Turns out my heart started to randomly stop beating. Today was the first of many. I went out again, this time slumping against him. This time was a little shorter when I came to I was in the ambulance. My then husband was standing there holding our son's hand. John's eyes were as big as the moon and he was pale. My husband was telling them with the tone of voice I've never heard fear which hospital to take me to, and they would meet the ambulance there. I'm not going into the details of the hospital.

Speaker 2: 1:03:55

What's really important here is that some random angel saved our lives. I was driving 60 miles an hour down a crowded highway on a rush hour Monday morning when I passed out because my heart stopped beating, even though I felt funny and was able to toss my phone to my son. He knew what to do. A child kept his wits and dialed his dad, all the while thinking I was dead. We're not sure who called 911. I truly believe it was a beautiful angel who so gently steered our car across three lanes of traffic to a safe spot so my baby wouldn't be injured. Mommy, mommy, I thought you died, mommy. I will never forget his little boy voice saying that to me. It's seared into my heart. He said it with absolute quiet, emotion, fear, confidence, fear. My normally vivacious, loud, bouncy little boy sat in his car seat, in the back seat, his voice filled with fear and scarily quiet Mommy, mommy, I thought you died. Mommy, thank you to the angel who was with us that Monday morning. I'm eternally grateful for the two lives being saved that day.

Speaker 2: 1:05:07

Tracy Wendorf Sagado is a 53-year-old mom to three beautiful adult children, a wife and a teacher. Raised in Germantown, wisconsin, she moved to Arizona four years ago to escape the brutal upper Midwest winters. Tracy has high-grade AV block, intermittent type 3, managed with a pacemaker. But it doesn't stop her from doing anything. She's done five Ironman races, four with her pacemaker. She and her now husband run a bike long distances in the mountains of Arizona, hike to the bottom of the Grand Canyon. Hike to the bottom of the Grand Canyon and explore all the back miles of the lone desert. To cool off, she enjoys a long swim at Lake Pleasant.

Speaker 2: 1:05:59

Tracy Wendorf Sagado is a 53-year-old mom to three beautiful adult children, a wife and a teacher. Raised in Germantown, wisconsin, she moved to Arizona four years ago to escape the brutal Midwest winters. Tracy has high-grade AV block, intermittent, type 3, managed with a pacemaker. But it doesn't stop her from doing anything. She's done five Ironman races, four with her pacemaker. She and her now husband run a bike long distances in the mountains of Arizona, hike to the bottom of the Grand Canyon and explore all the back miles of the lone desert. To cool off, she enjoys a long swim at Lake Pleasant.