From Tetralogy of Fallot to Changing State Law: Sara Bonneau's Unstoppable Mission

When Sara Bonneau's newborn son was diagnosed with Tetralogy of Fallot, she had no roadmap for the journey ahead. In this raw and powerful conversation, she takes us through the evolution of parenting a child with a serious heart defect—from the terrifying early days without social media support groups to watching her son become a competitive high school basketball player.

Sara's candor about her mental health struggles resonates deeply as she shares her delayed PTSD diagnosis following her son's first surgery. "I experienced a lot of anxiety after Ryan was born. I remember being so scared he was going to die if I let him out of my sight," she reveals, encouraging other heart parents to seek help sooner than she did.

The conversation takes a powerful turn when Sara describes how tragedy became the catalyst for her unexpected advocacy work. After Sara discovered a 15-year-old basketball player in her son's rival team collapsed and died, she discovered there was no AED available that might have saved his life. Despite having no legal background, this special education teacher successfully campaigned for Rhode Island legislation requiring AEDs in all middle and high schools.

Her message to listeners facing their own struggles is beautifully simple: "Your voice matters. I was just a mom. I had a voice. I made a very significant change for student athletes and children in Rhode Island just by sharing my story and speaking from the heart." Sara's journey from terrified parent to legislative changemaker demonstrates how we can transform our deepest fears into purposeful action.

Whether you're a heart parent seeking connection, an advocate looking for inspiration, or someone navigating the healthcare system, Sara's story will remind you of the incredible power one determined voice can have. Subscribe now and join our community of families and professionals dedicated to improving lives in the congenital heart defect world.

Helpful Links:

Diane Pucci's episodes: 

The Miracle of Growing Up with a CHD: https://www.buzzsprout.com/62761/episodes/398967

Voices of Victory: Overcoming Congenital Heart Challenges: https://www.spreaker.com/episode/voices-of-victory-overcoming-congenital-heart-challenges--58745010

Discord Server Link: https://discord.gg/WZwQf7pPM8

CardioHUB 2025 link: https://www.cardiologyconferenceeurope.com/

HUG website link: https://www.heartsunitetheglobe.com

Sheri Turner is our newest Defender Patron and she also serves as a HUG Volunteer. Thank you so much for your generosity and all you do, Sheri!

Chapters

• 0:00 Opening Clip
• 4:19 News in the CHD Community
• 7:21 Introduction to Sara Bonneau
• 12:01 Finding Support for CHD Families
• 20:00 Coping with Loss in the CHD Community
• 26:47 Advocating for AEDs in Schools
• 32:35 Turning Pain into Action
• 39:18 Transitioning to Adult Care
• 46:23 Closing Thoughts

Transcript

Sara Bonneau: [00:00:00] I experienced, obviously a lot of anxiety after Ryan was born. I remember being so scared he was gonna die if I let him outta my sight, or if he caught a cold or got hurt. It was terrifying and it could be paralyzing at times.  

Opening/Anna's Story

Anna Jaworski: Welcome to Heart to Heart with Anna. I am Anna Jaworski and a heart mom to Hope my 30-year-old amazing daughter. I'm excited about sharing my interview with Sara Bonneau with you in a little bit. Sara is an extraordinary heart mom to an adult with tetralogy of Fallot. What she did to help others in her state after a tragedy is inspiring.

You won't want to miss our interview. First, I'd like to share something personal and then I'll follow that up with some news. In 1998 when my heart child was still a toddler, I finally got internet. That was in [00:01:00] the olden days when we got dial-up.

I'll never forget sitting down to my computer, dialing up the internet, and sipping on iced tea while the phone connected me, through a series of high-pitched noises, to the world. Suddenly, I was able to communicate with people across the country and across the globe.

The sound of connecting to the universe was magnificent, and it opened up so many opportunities for me. One of the most wonderful parts about being connected to the world was the ability to meet other parents of children with heart defects. One of the early moms I discovered was Jill Sorensen. had a daughter, much older than my child. Jill was a fierce advocate and she kindly took me under her wing.

Way back when the internet for everyday people was young, AOL chat rooms were common places for people to hang out. The AOL chat rooms were places where people could go who had common interests. In the late [00:02:00] nineties, there was no video, but we could message back and forth in real time. This predated people owning cell phones and when texting became a new method of communication. It wasn't uncommon to exchange AOL addresses to continue threads of conversation later by email. These were the early days when it was exciting to turn on the computer and hear, "You've got mail!" While I was in an AOL chat room. I got to know Jill's daughter, Jeni. She was sweet, innocent, and she gave me hope. She had the same heart effect my child had, but she went to school, had friends, interests, and a deep and abiding faith in God.

Jeni gave me hope. Jill wrote for my book, 'The Heart of a Mother.' Her husband Paul wrote for my book, 'The Heart of a Father,' and then Jeni wrote for my book, 'The Heart of a Heart Warrior.' I have seen Jeni grow up into a wonderful woman, friend, and wife. We've [00:03:00] met in person, and I consider her a dear friend.

Naturally, I became concerned when Jeni started to have heart issues. Before I knew it, she was listed for a transplant. She moved into the hospital to await not only a heart, but a heart and a liver. Well, friends, she received her heart and liver.

Jeni's husband, Nick, has made videos that he's shared with friends and family online, and he even set up a caring page for her. As difficult as it can be to be a member of the congenital heart defect community. It's also quite humbling. I see miracles like this happen all the time. I believe in the power of prayer, although I know there are times our prayers, no matter how fervently prayed, go unanswered. I believe with every fiber of my being, that all of us are here for a reason.

None of us knows how much time we have on this planet, but I believe there's a [00:04:00] purpose in our existence. Right now, I'm thankful for the donor and the donor family for Jeni's second chance for life. I'm thankful for friends who keep in touch, even when detailing a difficult medical journey like this, and I'm thankful all of us can pull together to hold one another up in prayer.

News

Anna Jaworski: Now, onto the news.

There's a lot going on in the CHD community, but I'm going to highlight three things. Last week I did my second Discord event. On March 13th, we listened to Megan Tones' episode entitled 'One Heart Warrior's Educational Experience Down Under,' and she joined us from Brisbane, Australia to answer our questions and chat with us.

It's funny how technology keeps evolving. I started this episode by talking about dial up internet and AOL Chat rooms, but Discord is a much newer platform that serves [00:05:00] a similar purpose. Discord is a free communication app that allows users to connect with one another through voice, video, and text chat.

Just like the old AOL Chat Rooms on Discord, we can have our own online community around a common interest. In this case, congenital heart defects. Unlike AOL, Discord is organized into servers that are customizable spaces where users can create channels for different topics and engage in live discussions. Our next Discord event will be on Thursday, April 10th at 4:00 PM USA central daylight savings time. More information about the event will be coming soon.

Discord is popular for its flexibility and real-time capabilities, making it a hub for community building and collaboration. I hope you'll join us on April 10th. The link to our Discord server will be in the show notes. Discord is free and there's a web-based [00:06:00] version and an app. So there are two different ways that you could actually join us.

Number two. I am excited to share that I will be speaking at the 11th Global Virtual Conference on Cardiology, also known as Cardio Hub 2025. This biannual conference is a global virtual event designed to bring together experts, researchers, and practitioners in cardiology to share knowledge, discuss advancements, and explore innovative solutions in cardiovascular healthcare.

Organizers are expecting about 500 participants from around the world. The conference features keynote speeches, plenary lectures, workshops, and symposiums on topics such as heart transplantation, cardiac arrest, interventional cardiology, preventative cardiology, and more.

The conference provides opportunities for networking, collaboration, and professional development while addressing [00:07:00] cutting-edge developments in the field of cardiology, I spoke at the 10th conference in November, 2024, sharing my daughter Hope's story. My speech is entitled 'Beyond the Pump, Holistic Care for Congenital Heart Defect Patients Through Adulthood.'

I appreciate having a chance to share Hope's story with the cardiology community attending the 11th Cardio Hub Virtual Conference. In light of research on psychosocial aspects of congenital heart disease, Hope's story is particularly relevant. The conference is organized by Intellect Conferences, Private Limited, and is scheduled for March 24th through the 25th, 2025.

The last bit of news is bittersweet. I recently discovered that a dear Heart Warrior friend, Diane Pucci, passed away. My longtime listeners may remember Diane from an episode where she was featured in 2015. The [00:08:00] episode was called 'The Miracle of Growing Up with a CHD.'

I feel so fortunate because a couple of years ago I reached out to Diane to come on my new podcast, The CHC Podcast: Congenital Heart Conversations. Unfortunately, at the time, she was unwell and couldn't join us. However, we reached out again last year and Diane graciously came on The CHC Podcast with Paula Miller and Michelle DeRoo.

She was feeling better then and I loved hearing more about her incredible life story. Diane and I shared a passion for our Italian heritage and loved swapping stories about our favorite things in Italy. I'll never forget the photo of her by the Trevi fountain that I used to promote the episode. The sparkle in Diane's eye as she's holding up the coin toss into the fountain, promising of a return trip in the future, was quintessentially Diane--always full of [00:09:00] fun, enthusiasm, and hope, she stood out as a beacon of positivity and resilience for others in the CHD community living with chronic conditions. I'm deeply saddened that I'll never see Diane again at a New England Heart Conference or have her on my podcast. Yet I feel so honored she graced two of my podcasts with her exuberant personality. And shared her inspiring stories with the CHD community. Diane's courage and zest for life were truly remarkable. Rest in peace. Diane. Your twinkle will forever shine in our hearts and your legacy will continue to inspire us all. 

HUG Message: 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 nonprofit 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 [00:10:00] access to free resources.

Pertaining to the CHD community, please visit our website at www.congenitalheartdefects.com for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors, and much, much more.

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

The Interview/Segment 2

Anna Jaworski: Today's guest is Sara Bonneau. As the mother of a 22-year-old son with tetralogy of Fallot, Sara Bonneau has navigated the complexities of congenital heart disease or CHD.

Her son has had two open-heart surgeries, a catheterization, and a sternal wire repair. Despite these challenges, he excelled as a competitive high school basketball player. The tragic on-court [00:11:00] death of a fellow 15-year-old athlete from sudden cardiac arrest motivated her to advocate for legislative change in Rhode Island.

Her efforts were instrumental in mandated, automated external defibrillators or AEDs in all middle schools and high school gyms, enhancing emergency preparedness. Recognizing the emotional toll of being a CHD parent, she actively shares her experiences to destigmatize mental health support within the CHD community.

Her transparency about personal treatment and medication aims to foster a supportive environment for parents facing similar journeys. Welcome to "Heart To Heart with Anna," Sara. 

Sara Bonneau: I'm so happy to be here, Anna, and I can't thank you enough for having me. 

Anna Jaworski: I'm so glad to finally meet you. I was so excited when you said you would come on the podcast.

I remember a time that we, veteran heart moms, had no support because [00:12:00] we had no internet. I'm an older mom than you are. My kid's 30... 

Sara Bonneau: Right!. 

Anna Jaworski: And I remember when we didn't even have internet. Let's talk about the kind of support you had when Ryan was young. 

Sara Bonneau: When Ryan was born, we actually had no idea he had a congenital heart defect.

My pediatrician was doing rounds in the hospital nursery, and noticed a murmur. I have a murmur. I didn't think much of it at the time. He sent us to a colleague at Hasbro Children's Hospital in Providence who was a pediatric cardiologist, just to see if it was the routine little duct that most babies have, a little bit after they're born, that closes on its own.

We had a one-and-a-half-year-old at home at the time and we were just excited to get Baby Ryan home to his big brother Nick. But our doctor really insisted because the murmur was so pronounced that we see Dr. Werner at Hasbro first. Ironically, my husband had a background in cardiac rehab. So he had an understanding of some of the simple jargon with [00:13:00] cardiac issues.

And we took Ryan, this little newborn, into a room. They did an ultrasound, and I just remember my husband squeezing my hand because he could tell something wasn't quite right on the ultrasound. Within minutes after the ultrasound, Dr. Werner had us in his office. He was drawing a picture on the examining paper table trying to explain that Ryan had tetralogy of Fallot, a congenital birth defect that would require open-heart surgery in order for him to survive.

He explained the first surgery would most likely be around five months of age, and he would put us in touch with a pediatric cardiovascular surgeon. 

Anna Jaworski: Mm-hmm. 

Sara Bonneau: My husband and I, obviously, were in shock. I remember just walking outta the office, sitting in the car and crying, wailing, just holding Ryan. We were beyond shocked and devastated.

But to your point, there was no Facebook support group. There was no social media. If you Googled it at that point, you just kinda went into a black hole of words, like cognitive delays, physical delays, life expectancy and all I wanted to do was [00:14:00] just talk to a mom that had, a five-year-old, a 10-year-old, a teenager.

Anna Jaworski: Yeah. 

Sara Bonneau: Anyone that could give me some hope. 

Weeks later... I have a huge family. My aunt in Chicago reached out and said, "My friend's sister has a 16-year-old with, I think, the same diagnosis as Ryan." We spoke on the phone. She told me that she had, yes, a 16-year-old son. He was a high school wrestler.

He was doing great in school. He was happy, and really, at that time, that was all I needed to hear. 

Anna Jaworski: Wow. He was a wrestler? 

Sara Bonneau: Yeah. Yep. 

Anna Jaworski: Oh gosh. 

Sara Bonneau: And 

Anna Jaworski: wow. 

Sara Bonneau: Obviously since then, I'm so thankful for the support groups that I've become part of... 

Anna Jaworski: Sure. 

Sara Bonneau: ...that give so many families that hope. Obviously, the support we've had from our family and our friends were tremendous at the time and they still support us, even though Ry's turning 23.

My dad is a physician's assistant. He was there for all of Ryan's surgeries. 

Anna Jaworski: Wow. 

Sara Bonneau: Just to kind kinda keep an eye on the doctors and nurses and to explain things in layman's [00:15:00] terms to my husband and I. He even bought us a pulse ox... 

Anna Jaworski: Oh. 

Sara Bonneau: ...when Ryan was first home. 

Anna Jaworski: That's so sweet. 

Sara Bonneau: Yeah. My husband and I are both teachers. We work for the same school system. They've been amazing. My childcare at the time was a stay-at-home mom who actually had a history as a nurse. So I think... 

Anna Jaworski: Oh my gosh! 

Sara Bonneau: ...I think the universe sent me her yeah, she actually had all our kids until they went to kindergarten. So we've just had tremendous support from family, friends, work, everybody. We've been very lucky with the support we've had. 

Anna Jaworski: That's beautiful. Two decades ago, parents didn't have the kind of recognition that they do now regarding how challenging it is to have a child with a chronic condition, and you are like me.

You also had an older child at home as well, which I think complicates matters much more. 

Sara Bonneau: Absolutely. 

Anna Jaworski: Yeah. It's amazing how much was taken for granted, I think two decades ago, but the [00:16:00] field has continually changed and morphed over time as our kids have gotten older and actually made it to adulthood, which wasn't expected for a large percentage of our children.

So I'm happy to see that changes have been occurring. How do you feel about the changes that you've seen regarding support available for parents of children with CHDs today? 

Sara Bonneau: I think social media is a tremendous resource for families who are looking for basic information and support for their CHD child and their siblings--for the whole family.

I see posts daily about, first colds, starting school, play dates... 

Anna Jaworski: Mm-hmm. 

Sara Bonneau: ...sports, travel, all kinds of things that folks can just hop on and ask a quick question and get an answer almost immediately. I try to give advice from my experience, but I always encourage families. "Please check with your doctor."

Every child is different. I mean... 

Anna Jaworski: mm-hmm. 

Sara Bonneau: We were very lucky that [00:17:00] Ryan had almost no limitations. We were only told, "no football," but other than that, we were told we would know more about his development as he got older.

But I was very lucky. Just for the simple fact that my son's cardiologist and pediatrician were very accessible to me. So anytime I had a question, they were very responsive to me. They were helpful. Sometimes I had to be a little pushy and get more information from them. But I've learned I'm the best advocate for my child.

Anna Jaworski: Absolutely. 

Sara Bonneau: They've matched that. I remember Ryan had his first cold. I remember when he started school, when he wanted to play sports. We always just took advice from his doctors. We always encouraged him as he got older to speak up if he didn't feel right. And we learned how to talk to him about his heart.

We always said, "Your heart has been fixed. It's different from your brother's heart. If it doesn't feel good, you need to let us know. There may be some things that you can't do, but we will always talk about that. And if there's [00:18:00] something new that you wanna try, we can talk about it And check with Dr. Bloom." That was his cardiologist. And gosh, Ryan wanted a tattoo and he was 20, and I just said "We need to ask Dr. Bloom."

Anna Jaworski: And he said... 

Sara Bonneau: and she said, "Absolutely!" 

Anna Jaworski: Oh, "she said." Okay. And she said... 

Sara Bonneau: Yep. She said he needs to do a pre-treat with an antibiotic, but he's all set. So I was like, "Okay." 

Anna Jaworski: Oh, wow, that's not every cardiologist's response. 

Sara Bonneau: Yeah we go with what she says. Yep. 

Anna Jaworski: Yeah, but I remember--20, 30 years ago, tattoos were a no-no. Piercings were a no-no. 

Sara Bonneau: Mm-hmm. 

Anna Jaworski: But I think we've seen so many of these young adults get the tattoos and piercings anyway. 

Sara Bonneau: Mm-hmm. 

Anna Jaworski: And the kids have done okay as long as they have antibiotics prophylactically. 

Sara Bonneau: Mm-hmm. 

Anna Jaworski: And/or they just make sure they go to a reputable place that uses [00:19:00] clean tools. It's amazing to me how many heart warriors I see with tattoos. 

Sara Bonneau: Mm-hmm.

Anna Jaworski: Some of them have really cool tattoos dealing with their heart defects, which is really unusual. 

Sara Bonneau: That's what he got, which to me just really was so meaningful. Yeah. He got on his forearm in Roman numerals, the two dates of his open-heart surgeries.

Anna Jaworski: That's beautiful. So Sara, my daughter was born three decades ago, and sadly, I had a number of friends early on whose children passed away.

Anna Jaworski: Do you know of other CHD babies or children who passed away in the 20 years that you've been part of the CHD community? 

Sara Bonneau: Yes. So once we started joining some local groups when Ryan was little, we did notice that some of the parents that would attend were talking about their angel babies. 

I guess I just didn't realize we were so lucky with Ryan and how he was developing and he was so active and so well. You would look at him and never even [00:20:00] know. And also I had a friend from high school; we were pregnant the same time. She delivered her baby. In Florida, and I saw her sister later that year and I said, "How's Polly?" 

And she said the baby had passed. She was born with a congenital heart defect. And obviously, I was devastated. I felt guilty in some ways, like my baby was with me. At the time I made a donation to Children's Hospital in her baby's name, and I always think about her. She went on to have two beautiful, healthy children, but I always think about her first-born.

I experienced obviously, a lot of anxiety after Ryan was born. I remember being so scared he was gonna die if I let him outta my sight, or if he caught a cold or got hurt. It was terrifying and it could be paralyzing at times. 

Anna Jaworski: Sure. 

Sara Bonneau: I did not seek out any mental health support at the time, actually not until his second open-heart surgery when he was nine years old.

I finally talked to somebody and I was diagnosed with PTSD from his first surgery, and [00:21:00] since then I've had a counselor and tremendous mental health support. I've learned through counseling that there are certain things that can trigger my PTSD. So I use a counselor if he has an appointment coming up or I reach out to my heart moms on social media to get through these times, but, the anxiety about fatalities and life expectancies and all those things are so common I've learned, especially in parents in the CHD community, but any child with a medical condition. I wish I had sought help sooner. I encourage new moms and dads and family members of CHD children to seek help.

I have many regrets about how I handled my grief and anxiety for the first years of Ryan's life and how it impacted my family because it does impact everybody. He had a brother at the time, (an) older brother, that was very in tune to what was going on and all our emotions. 

Anna Jaworski: it's hard to hide it.

Sara Bonneau: Yeah, it really is. And I think the second time around we were more prepared. The stress was different the second time around. Obviously, Ryan doesn't remember his first surgery, [00:22:00] but when he was nine years old, we had to tell him, "Your heart's not working as well as it should. We need to go get it fixed. You're gonna go in the hospital." And that was a lot. Since gearing up for that, I had gotten some support as far as the language and how to support the whole family, and by then we had another child. 

Anna Jaworski: Oh, wow. So now you had an older child 

Sara Bonneau: and a younger Yeah.

Anna Jaworski: Ryan and a younger one. Yeah. Wow. 

Sara Bonneau: To your point, bereavement can look different. It doesn't always mean a complete loss. It just can be about the healthy heart that isn't there. And I didn't know that until I started talking to a counselor and learning about post-traumatic stress and why I was so anxious, and I just thought I was a worry wort, but they actually, gave it a name and I've obviously sought more help since then.

Anna Jaworski: It validated your experience and it validated your feelings, which we need that, because it is easy to feel like you're a worry wort. My child had two surgeries within seven months of each [00:23:00] other, and I didn't seek help until over a year after that because I had this teeny, tiny support group of me and three other moms.

So there were four children, and within 16 months of knowing them, we had lost two of them. 

Sara Bonneau: I can't imagine 

Anna Jaworski: That sent me into a depression. 

Sara Bonneau: Mm-hmm. 

Anna Jaworski: And it was awful because I had survivor's guilt because my kid survived. And I was feeling tremendous loss because I had become close friends with these women and their children.

We had gotten together. Two of the children had surgeries at the same time, but Hope had the second surgery a week before Kristina did, and she didn't survive it. There were so many losses. Once we find out our child is born with a heart defect, we immediately lose that vision of the perfect childhood. Our kids are gonna have to have surgeries. Our children will have a [00:24:00] much more uncertain life. And both of us also had to worry about 'How will that affect our other children?' 

Sara Bonneau: Yes. 

Anna Jaworski: It's not just the child with the heart defect, but it's knowing that there's a sibling that, unavoidably, is going to be affected. I think that's a huge challenge. Nowadays, they have camps for children who have a sibling with a heart defect or other chronic conditions. When my daughter was younger, there were no camps like that. Did your children have any camps or anything to help them with that?

Sara Bonneau: No, I wish they did. I do have regrets about how my grief impacted, my anxiety impacted all my kids, all my family members. But I've learned we all are doing the best we can, and, we're all here together and, nobody loves Ryan more than his brothers and his parents. But yeah, it affects everybody in the family. 

 [00:25:00] 

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HUG Disclaimer: 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.

Anna Jaworski: Sara, I understand that you've also been involved in some advocacy work. As a heart mom myself, I was devastated to hear that a young man passed away due to sudden cardiac death in one of your [00:26:00] son's games. So can you tell us how you got started advocating for AEDs and gyms? 

Sara Bonneau: Yes, when Ryan was in eighth grade and my oldest son Nicholas was a sophomore in high school, he was on the boys' basketball team and they had a game scheduled against Rogers High School in Newport.

We were notified that the team had to cancel a game because one of their players had collapsed on the court and died of sudden cardiac arrest. I was absolutely gutted. This was my biggest fear come true. All I could think of was, 'what if...' I found out the child's name was Will Foreman.

He was 15 years old. He had no underlying conditions. He was a very healthy young man. Side note, my best friend who runs a preschool would bring a portable AED from her school for all of Ryan's games since her son was on Ryan's team and the first thing I asked our athletic director when this happened was, "Do we have an AED?"

And [00:27:00] he said, "No." At the time they were only required in nursing homes and YMCAs and were not required in schools in the state of Rhode Island. There was no AED available to Will Foreman. It was right then that I made it my mission to pass a law in Rhode Island requiring AEDs in all middle schools and high schools.

Anna Jaworski: Wow. So what obstacles or opposition did you face in getting legislation passed? 

Sara Bonneau: I had no idea what I was doing. I have no knowledge of the law. I am a teacher. 

Anna Jaworski: Mm-hmm. 

Sara Bonneau: I'm a special education teacher. I'm not a Rhode Islander. I'm from Massachusetts. I didn't know about statutes or policy in Rhode Island, and I actually posted on Facebook. 'How do you get a law passed in Rhode Island?' And I did get some feedback from some attorney friends and they had said, 'Write letters to your state reps.' So I did. I wrote letters to all of my state representatives. I wrote to the Rhode Island chapter of the American Heart Association.

The Rhode Island American Heart Association responded to me [00:28:00] and they invited me to speak at their headquarters about my experience and what I was hoping to change in Rhode Island to see if this was something they could help facilitate for me. In February of 2016, I went to the State House multiple times with the AHA reps. I shared my story with the Health and Safety Committee, as well as other committees. It was very intimidating to be at the Rhode Island State House and it was very frustrating in the first year of this, to say the least.

The response was always, "Who would fund this? We don't have the money for this." But I also got some responses like, "This isn't a law already?" They were shocked that they weren't required around kids and student athletes. It was very sad. It was very frustrating and exhausting every time I spoke because I had to recount the story of Ryan's cardiac history and the death of Will Foreman, and it just broke my heart over and over again.

Anna Jaworski: Mm-hmm. 

Sara Bonneau: Anytime I felt like giving up, I would just focus on Will Foreman, I would focus on [00:29:00] his mom, and her loss. And I just kept going. I kept sharing my story and finally, Jan Malick, who was my state representative at the time, reached out to me by phone. He said, "Hey, Sara, I got your letter. I wanna help make this happen." After that, anytime I had to speak at the State House, Jan was with me, as well as a member from the American Heart Association. And then finally in June 2018, it got some traction. And in August of 2018, I got an email from the Rhode Island American Heart Association that the law had been passed and signed by Governor Gina Raimondo.

A week later, Jan Malick was at my house with the actual Rhode Island General Law 16-21-33. It was signed by the governor and it stated that all middle and high schools in the state of Rhode Island must have and maintain automated external defibrillators. 

Anna Jaworski: Wow. Oh, my gosh. You must have [00:30:00] been in shock that it finally happened.

Sara Bonneau: Once it got traction, it happened very quickly and I can't put a name on the emotion. I was proud; I was relieved; I was exhausted. 

Anna Jaworski: I'm sure. What you went through is just amazing. I, like you, was a special education teacher and also not involved in helping to make laws but AnnaMarie Saarinin was trying to get all of the states to have pulse oximeters in the hospitals so that babies would not be sent home from the hospital without having a pulse oximeter test first, and had my baby had a pulse oximeter test, they would've realized, 'Oh, this baby's saturation level is in the eighties; something is wrong here.' But they didn't. 

Sara Bonneau: Oh my goodness. Wow. 

Anna Jaworski: They didn't do that. Like you, I went to the State House. I also petitioned for the pulse oximeters to be in hospitals, and I remember being elated when the [00:31:00] legislation actually did pass. Yay for us heart moms and heart dads.

Sara Bonneau: Yay for us. Yes, yes. 

Anna Jaworski: We can make a difference. And it wasn't just me, Anna Marie Saarinen had already started the movement well before I became part of it. I think it takes that groundswell of people who say, 'I think it's important. Don't you think it's important?'

And I think it also helps when there is somebody in the legislature who has been personally touched by congenital heart defects. I think that makes a huge difference. 

Sara Bonneau: Yes. In Rhode Island, there was a family, I believe, of a little baseball player and they were funding AEDs for more schools, but it wasn't a pervasive law. We tagged onto that and got the momentum from that, and that really helped. But yeah, I was not taking 'no' for an answer. 

Anna Jaworski: Ha. I love that. I love that. That's what we have to do though. It takes that persistence, even if it is one, [00:32:00] two, or even more than that years. 

Sara Bonneau: Yeah.

Anna Jaworski: For you to get it passed in two years, that's pretty remarkable. And I think it helps too when there are other states that are doing the same thing. Here in Texas, we had a number of athletes who passed away on the ball field or a court. It was devastating and just like in Rhode Island, we had parents who said, "We need to have AEDs in the schools."

And it is a law here in Texas as well. I think once you start seeing it happen from one state to another, then you can say, "There's a precedent." And that gives your movement even more validation; did you have that? Were there other states that had already started to require AEDs in the schools?

Sara Bonneau: I always compare us to Massachusetts, just 'cause that's where I'm from. That's where I teach, and they had it. As many people that were questioning the funding when I was speaking at the State House, an equal amount of people were saying, "This is ridiculous. How can we not have this? This is silly. This is a very [00:33:00] simple fix." The number of people that survive after having an AED right there, obviously the percentage goes way up. So this is a no-brainer. So I just leaned into those people and not the other people. 

Anna Jaworski: Not the naysayers. We don't need those naysayers. What advice do you have for other people who are seeking to get legislation passed to improve the safety of Heart Warrior athletes in schools? 

Sara Bonneau: Very simply, your voice matters. I was just a mom. I had a voice. I made a very significant change for student athletes and children in Rhode Island just by sharing my story and speaking from the heart.

I mentioned my dad again because he's a living example that anybody can make change. Everyone has a voice. We all have choices. I made a choice the day I became a mother to be the biggest advocate for all my children. And even though I knew nothing about congenital heart defects, I learned; I listened. I used my fear [00:34:00] and anxiety surrounding Ryan's heart defect, and I turned it into action for a child and his mother who didn't have the luxury of even worrying about him anymore. He was gone. So my advice is to try to take your pain and anxiety, focus it somewhere that it matters. The American Heart Association is very far-reaching and they need help. They need support; they need folks that wanna share their stories. Find your local CHD group. Share your story on social media. I'll never forget the call to my aunt's friend in Chicago, who I didn't even know. Now I'm the mom sharing pictures of Ryan playing high school basketball, graduating from high school.

This May he'll graduate from college. And telling young moms who just delivered these babies, that these babies are strong. They'll make you gasp every time they take a step or they go to school. But they're unstoppable. 

Anna Jaworski: Yeah. Yeah. So I'm sure people talked to you about Shaun White when your son was little.

[00:35:00] Did you know about the Olympian who... 

Sara Bonneau: So ironically... 

Anna Jaworski: ...had the same heart defect? 

Sara Bonneau: I was watching the Olympics 'cause we loved the Olympics in our house and I will never forget... they do those little feature stories and I'm watching it and I'm just getting chills, like... 

Anna Jaworski: mm-hmm 

Sara Bonneau: ...tetralogy of Fallot. I called my husband and I'm like, "Look! He's an Olympic athlete." The feeling that gave me... 

Anna Jaworski: yeah... 

Sara Bonneau: I had a little baby and I'm looking at this Olympic athlete, so I'm like, 'This kid has limitless possibilities. He could be an Olympic athlete' and I'll never forget that. Actually, my two older boys, Nicholas and Ryan, were students at the University of Rhode Island and Shaun White actually spoke one night and I went to hear him. I didn't get to meet him, but, I follow him on social media and actually another side story if we have time. Jeff Green, who was a player for the Boston Celtics, within the last 10 years had to have open-heart surgery after he was traded to the Boston Celtics. One of the [00:36:00] heart groups was looking on social media for CHD kids--like Jeff Green wants to film this AHA segment, and we need heart kids. Ryan is obviously an avid basketball player, (an) avid Celtics fan, and I think the universe just gave us the gift and Ryan got to go spend the day with Jeff Green with my husband. 

Anna Jaworski: Oh my gosh, that just gave me goosebumps.

Sara Bonneau: Yeah, it was like his Make-a-Wish. It happened so fast, my friend Kelly Carlson, who was the local heart group mom in the area said, "I think this would be great for Ryan." And I was like, "You have no idea." 

Anna Jaworski: Oh, my gosh! 

Sara Bonneau: He got to spend the day. They made a feature for the American Heart Association. It was in the same year that Ryan had his second repair when he was nine years old. He was very self-conscious about his scar. He had some anxiety starting. But he met Jeff Green and after that, he was like, "Nothing can stop me. Jeff Green is an NBA player and I can do whatever I wanna do." I'm so thankful to Kelly [00:37:00] for thinking of Ryan in that moment and for the Celtics and Jeff Green. Once he met Jeff Green and spent that day, he was like a new kid. It was amazing. 

Anna Jaworski: Wow. That is such a powerful story. Thank you so much for sharing that with me. I love that story and that you got to hear Shaun White speak in person after he had been somebody that you held in high esteem and... 

Sara Bonneau: yeah 

Anna Jaworski: ...was kind of like a heart hero for your son, Ryan. 

Sara Bonneau: Absolutely. Just to know there's someone in the public eye. 

Anna Jaworski: Yes. And wow. 

Sara Bonneau: We were just very lucky that Ryan's heart gave him the capacity to do those things.

He was never limited. I will always give my husband credit for this. Once Ryan was old enough to play sports, of course, I didn't want him to do anything. I wanted him to sit in a little bubble. And I didn't want him to get hurt, and that was gonna be the way it was. And my husband said, "No, we've always listened to Dr. Bloom and we're gonna keep doing that. And Dr. Bloom said he can [00:38:00] play. So he is gonna play." This child played competitive basketball from fourth grade through high school; was an all-star team member, actually got recognized by one of his teammates and the Rhode Island Coaches Association for a courageous award that they give to kids that have overcome hardship and competed at a very high level. For a high school athlete, he went as high as he could and looking at colleges, he considered that. I said, "Do you still wanna play basketball? 'cause it was really hard to watch."

He was not a conservative basketball player. He was the one diving into the stands and diving across the floor. Yeah. But 

Anna Jaworski: And giving you a heart attack in the stands. 

Sara Bonneau: But these moms holding these newborns have no idea. And yes, every child's different and they all have their different limitations.

But I'll show them a picture of Ryan holding his awards and they were like, "I never could imagine that could be my baby." So, I'm thankful for that. 

Anna Jaworski: God Bless you for sharing Ryan with the world and not keeping him hidden away and for [00:39:00] giving him a chance 

Sara Bonneau: As much as I wanted to...

Anna Jaworski: I know. It's so easy. I'm very much like you. My kid was a TaeKwonDo kid. I was a homeschool mom, so both of my kids were in TaeKwonDo and when it came to sparring, oh my gosh, Sara. It terrified me every time I saw them sparring, but it all worked out and Hope ended up getting her black belt, which not too many people originally diagnosed with hypoplastic left heart syndrome, make it to the black belt level because it's pretty intense 

Sara Bonneau: Amazing. 

Anna Jaworski: Yeah. To me, it was amazing. The furthest along the black belt journey I knew of any other heart warrior achieving was brown belt. And I thought that was awesome. But these kids, Sara? 

Sara Bonneau: Yeah. Out of all my kids. He was the one walking on top of the swing set, always just trying to keep up with his older brother. I would even send his cardiologist videos of him playing him. Like, "I don't think you understand. I know you said no direct hits to the [00:40:00] heart, but this kid is taking offensive charges." Here's a Ryan's story. He was a sophomore and he was on varsity as a freshman playing very competitive basketball.

He's average size; you wouldn't pick him out of a crowd thinking he's a basketball player. He was a point guard, and he had played a game, and we came home and he walked down the stairs one night and he goes, "Hey, Mom, can you see what this is?" And he was pointing to his chest. A sternal wire was coming through his chest. 

Anna Jaworski: Oh my gosh. 

Sara Bonneau: He was unbothered. His pain doesn't register the same as other people's. And I said,"Let's see what Dr. Bloom says." So I took a picture and I sent it to her. She says, "Yeah, I'm gonna need you up here in Boston as soon as possible."

We got up there and she said, "Yeah, it happens sometimes, Ryan, they shift, you grow. You had those wires in when you were nine and now you're 16." That pretty much summed up Ryan. 

Anna Jaworski: What an amazing kid and what a journey for you to [00:41:00] have to experience and live through. It sounds to me like you've grown a lot as Ryan has grown, too. 

Sara Bonneau: I've tried. We all have. This has impacted everyone from my husband, our parents, Ryan's grandparents, Ryan's brother Nicholas, Ryan's brother Sean, yeah, we can always do better. And even now as Ryan gets older, he's obviously more aware of his heart and his issues, and he's transitioning to an adult cardiologist and I can't be in the room with him, which he loves. 

Anna Jaworski: Oh yeah. Hope was the same way. She turned 18 and she was like, "Okay, Mom, I've got this."

Sara Bonneau: Yeah. 

Anna Jaworski: And I remember saying, "But I'm the record keeper. I'm your advocate." And she said, "Mom, you have been training me my entire life to do this. Trust me." It was so hard, Sara, but you know what? She's got it. 

Sara Bonneau: Yeah, that's where we've landed right now. We had to say goodbye to Dr. Bloom because he transitioned... 

Anna Jaworski: yeah, 

Sara Bonneau: it was interesting to [00:42:00] go to the pediatric ER. He had gotten COVID and was having a very bad reaction at the time. So she said, "Okay, you have to go through the ER." So here we are at Children's Hospital with all these little babies and Ryan and his tattoos and his mustache, and we both looked at each other like, 'I feel like it's time for us to transition to the adult care.' It's a lot to carry. I give him credit for that. I give my whole family credit for that because we all carry it. But yeah, it's been an interesting transition for me to watch him take over his care and be his own advocate. And I think so far he's doing a great job. As hard as it's been for me this is what we raised him for. He's always been fiercely independent. 

Anna Jaworski: It's way harder on us mamas than it is on them, I think. 

Sara Bonneau: Absolutely. 

Anna Jaworski: And that transition to working with an adult, is he lucky enough to have a cardiologist who's ACHD certified?

Sara Bonneau: I believe so. Honestly, again, our mantra is 'whatever [00:43:00] Dr. Bloom says,' and this was someone that she really liked and was transitioning a lot of her adult patients to. So it's different; she was all hearts and flowers and really took care of me. This new doctor is Ryan's doctor, and he is very clinical and he is not a pediatric cardiologist, but Ryan and him are a good match and it's all gonna be good. He's been very receptive to Ryan. Ryan was having some strange beats over the summer and he was very accessible about that. He sent out a Holter monitor. It's working so far; it's been a good match. 

Anna Jaworski: That's good. That's good to know. And what a great example he has in you. Seeing how 'My mom helped legislation be passed.' You've really demonstrated for him over and over again what it means to be an advocate. 

Sara Bonneau: I hope that has landed with all my kids. That's how I was raised. We're gonna do a new phase of parenting. We have three adult children and we're learning how to parent adult children with all kinds of [00:44:00] needs.

 Ryan's needs are no exception. It's definitely new territory for us. But I still have my heart groups. I can still say, "Hey, does anyone have a 23-year-old that is transitioning to an adult doctor?" And right away I get responses from all my moms on our heart group. So that's been wonderful.

Anna Jaworski: That is wonderful. I love that so much. Thank you so much for coming on the program today, Sara. 

Sara Bonneau: Thank you so much. I'm glad we got to talk and thank you for all you do for the CHD community and thank you for sharing my story. 

Anna Jaworski: Oh, it's been my pleasure. That's all for this episode of "Heart to Heart with Anna." I hope you all enjoyed listening to Sara Bonneau. If you enjoyed this episode, please consider becoming a patron of our program. For the cost of a cup of coffee, you can help keep this program free and available for everyone. Just visit www.heartsunitetheglobe.com and click on the donate button. 'Til then, my friends remember you are not alone.

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